(TW sexual assault)
My Depression wasn't as bad this week, but my Anxiety was pretty bad. I think this was due to some arguments my parents had been having, about moving house. We haven't found anywhere yet, but Mum doesn't feel ready. Unfortunately, Dad wants to move as soon as possible. Because of this, they argue whenever the topic arises.
I really hate arguments. They make me panic, and sometimes dissociate. When I was very young, I used to worry that my parents would divorce and I would be made to live some time in one house, and some time in another. I also used to worry about how they would be able to afford a place to live each. Nowadays, I know that they have a strong relationship and only argue as much as any other married couple would.
Raised voices make me panic too, and I'm not entirely sure why. If I remember correctly, I was shouted at my bullies, but that didn't affect me as much as being jeered at, judged, left out of play, humiliated etc. My abusive ex used to shout too, but again, that wasn't the worst thing about the things he did.
Apart from this, I had been (and still am) feeling very emotional. It's not taken much to make me cry, and things have overwhelmed me far too easily. Because of this, I've found it hard to concentrate and the only thing I've been able to focus on at least a little, is watching the "Chernobyl" series on Now TV.
We then went back to talking about my abusive ex, as well as times I have been sexually assaulted by other men. It has happened a few times, but I've not reported it for various reasons (being drunk, feeling like I led someone on etc). It has really affected my ability to trust most men. If they act in a flirty way towards me, and I don't feel attracted to them, I become hypervigilant but will find it hard to make it clear to them that I do not want anything apart from friendship. I will avoid them if they persist. Men who do not get the message make me feel unsafe. It feels as if they have no regard for consent, and will do what they want. It has even gone so far as to feel as if they feel they have ownership over women's (or people they perceive to be women, I am non binary for instance) bodies.
From there, I don't remember how we got onto this topic, but we discussed society's judgement of people who cannot work; specifically due to chronic illness/disability. I still feel as if society judges me for not working, and for claiming sickness and disability benefits. I also feel they judge how disabled or sick I really am. I get so scared about being contradictory, having a fluctuating illness, and being able to prove my disabilities.
I have said in previous blogs, and I explained to my counsellor how I think about my inability to work. I try to think of the least amount I could manage in a workplace, and the least taxing job I've had in the past. I struggle to sit up for long, concentration is a big problem, pain and fatigue (as well as dizziness when sitting for a while) affect my productivity, and I would be in agony by the end of even a part time shift working at a desk.
My illnesses fluctuate but even on my best days, I simply could not be productive throughout a shift, even with some breaks. I would have many days where I could not get to work either, because of being too exhausted, in pain, or nauseous even. I would have to call in sick so many times that I would lose my job within months. I know this because this has happened even when my illnesses weren't so bad.
And that's not to even mention my mental health problems. The OCD that makes me feel the need to control everything, know what people are thinking and gain reassurance constantly, so I can be prepared, coupled with the Generalised Anxiety that makes me worry about everything, and fixate on things to such an amount that I cannot focus on anything else, finally, the Depression and BPD that affect my moods vastly, that zap my motivation and either slow me right down, or make me so agitated I cannot concentrate.
Even in my blog posts, I feel the need to justify why I am not working. People may assume I do nothing with my day, but that is not true. I try to socialise, clean when I'm able, bake on very rare occasions. The rest of the time, I am managing my illnesses. Managing chronic physical and mental illnesses is a full time job. You have to balance exerting yourself, with resting. You have to pace everything you do. If you move too much, it flares up various symptoms. If you don't move enough, your joints stiffen and your mood is affected. You have to do something each day to feel some sense of purpose and achievement, but not put too much pressure on yourself as it will make you feel mentally and physically drained and overwhelmed. You have to try and attend every appointment, ordering prescriptions, collecting prescriptions, chasing up test results etc. It's a lot to cope with!
This counselling session didn't include an exercise. It just involved a lot of chatting and venting. My brainfog kicked in unfortunately, and I had to keep stopping to remember what I was talking about/what my point was. I became very dizzy and fatigued towards the end too. My counsellor had to get me a glass of water, and let me rest for a few minutes before continuing. Even talking can be exhausting and overwhelming!
After my session, I had to go and collect a prescription. In the pharmacy, I'd just queued up when I felt a breeze on the back of my neck. I turned round, then felt a hand on my shoulder. It was a creepy old man who was standing far too close. He apologised for accidentally blowing on my neck. He continued to touch my shoulder while saying he could see my ponytail moving in the breeze. I forgave him, smiled politely, then stepped away. I flinched until he let go of my shoulder, but he continued to stand far too close for a while, before sitting by the consultation room and staring at me. I got a really bad vibe from this man, and I actually got a flashback to a time when I was sexually assaulted by a strange middle-aged man in the bus station. I had been sitting, waiting for a bus, when I noticed this man staring at me as he approached me. He sat down next to me and told me to give him a hug. I was scared of what he'd do if I said no, so I gave him a quick hug, then tried to ignore him. He then put his hand on my leg as he told me his name was Everton and he was going to Stourbridge. I flinched away when his hand starting moving up my leg. He eventually went away, but the next day, I saw him in town. He commented on me being "sexy" and this sent a shiver down my spine. I didn't want to see him ever again.
The main points of this post are about society feeling entitled to do some things, and judgemental of people who don't do certain things (primarily, working). Consent needs to be respected much more in my opinion. It is so important and can mean the difference between someone trusting you or never again.
Showing posts with label Chronic illness. Show all posts
Showing posts with label Chronic illness. Show all posts
Friday, 14 June 2019
Friday, 24 May 2019
What Influences Me? : Counselling Session 4
(mention of cancer, suicide method, and death)
At the start of this session, I wasn't sure what to talk about. Not much had happened, mental health-wise, in the last week.
I was still thinking about my old school-friend, who died recently. Although I knew we'd drifted apart, I still blamed myself for not making enough effort. I miss her to be honest. She was a good person.
I'd also had a GP appointment recently, where I was told to taper off my pain medication (Tramadol, slow release) as well as stop my anti-sickness medication. I have struggled with my pain, since lessening my dose of Tramadol, and I'm trying to live with it, but it is affecting my functioning. I want to function better but I can't keep pushing myself to my absolute limits.
As well as this, I'd had some pains around my stomach, hips, and back. The pains were like cramps and were getting to the point where I was doubled over and sweating. The GP seemed concerned about this, and suggested I might have an ovarian cyst. This played on my mind, and I got a bit of a shock when I was handed the blood form and found they were testing for cancer (I reckon ovarian cancer, but I'm not sure if they test for antibodies or something like that.) They say it's around 1 in 2 people who get cancer now, and my parents haven't had it so far, so maybe I won't be so lucky? I'm trying not to think this way, but I can't help worrying this may be a possibility. Even if it's not cancer, any kind of problems with my ovaries makes me scared that my fertility would be affected.
I'm nearly 30 and running out of time where my fertility is at its optimum levels. I feel as if I am running out of time to meet someone, get married, and have children. Life seems to pass by so quickly, and with the death of my friend, it seems to be getting shorter and shorter.
The counsellor seemed very sad that I was thinking this way. She asked me why I thought I wouldn't meet someone.
I said that I just don't see myself having that life, and I'm scared that nothing will change unless I change parts of myself. But how? Where do I start?
I became upset as I told her that I never felt as if I was "enough". With romantic relationships specifically, I always felt as if I was second best, last choice, or just completely unimportant, so I felt like that about myself. I wanted to feel loved, attractive, and respected. She asked me why I felt this was so important?
I said that I wanted to make some sort of difference in the world. I wanted to feel as if my life was worth something, that I was worth something. I don't want to leave this world without doing some good. She also asked me if there were people I looked up to, who had made these kinds of differences in the world. I told her that I had some friends who were very vocal about mental health, and did their best to write in order to tell the truth about mental health services these days, as well as raising awareness and breaking down stigma. They wrote for online magazines and newspapers. They had thousands of followers. I'm not too bothered about having lots of followers, but I do want my opinion to be heard, respected, and understood. I want my words to mean something to someone. I want to do something good, however I can. I wish I had the confidence to do this. I feel I'm wasting my life otherwise.
I admitted that I had done some good. I've been over the phone/text/twitter to someone who was taking an overdose. I have talked someone out of killing themself. According to some friends, my blogging has helped them, and I've helped them by being there for them when they needed it most. I just felt like I could do more, make more of a difference. Even here, I feel like I'm not doing enough, and that I myself am not enough.
After this, my counsellor suggested doing an exercise. She did suggest talking about the future, but I refused, as I was feeling so scared and down about it, that I couldn't bring myself to focus on it right now. Instead, we did more identity work.
She gave me a sheet of paper, and asked me to put myself in the middle. I drew a stick man, and wrote "me" above it. My art skills aren't great...
She then asked me to write the traits I thought I had, around the figure of myself. I struggled a bit, but managed to put things such as "stubborn, determined, wanting to control things, perfectionist, kind, friendly, a good friend, ambitious, impressionable".
We spoke about the traits I had, and I told her that control was a big part of my personality. I'm diagnosed with OCD, although I believe my symptoms are quite mild now, but I am still a real perfectionist who hates to be out of control. We also talked about my stubbornness. My counsellor asked why I thought I was stubborn. I struggled to explain, and couldn't give any specific examples, but I did tell her that when I set my mind to something, I would usually do it. I would listen to advice from others, but it was ultimately me who would make the decision.
Possibly contradictory to the stubbornness, I also felt that I was quite impressionable. If I looked up to someone, I would try to take on parts of their personality. I would also follow their advice. In the past, I would do whatever someone wanted me to do, without question. Maybe I was worried about the consequences, if I did question them? I have a feeling this is how the bullying started anyway.
Lastly, the counsellor asked me to write down people who gave or influenced these personality traits in me. I won't say specific names, but these included friends, parents, and grandparents. I could link certain things to certain people. I also found myself digressing when I talked about some of them. One was a friend of mine who hasn't spoken to me in a long time. He was someone I had a lot of history with, and still thought about recently. I believed I got my determination and ambition from him, at least in some way. I resented how he hadn't been there for me for ages, when I really needed him. I wish we hadn't complicated our friendship, but at the same time, I still have thoughts about being with him again. I wish I could switch off those feelings, but I had a dream about him recently that brought it all back. I hate how influential my dreams are.
My counsellor and I discussed how it is interesting that people can pass certain traits onto people, without intending to. It certainly made me wonder just how impressionable I am.
There was only a few minutes left of the session by that time. My counsellor summed it all up, and said that she felt I was very lonely, unsure of myself, not really feeling like myself anymore. I want to go back to how things were with some friends, and my own traits (confidence, feeling attractive etc). I doubt myself and dread the future. She asked me what I'd like to do between sessions, in order to make some sort of change in myself. I asked what I could do, but she wanted me to come up with my own suggestions, as this wasn't rigidly structured (like CBT). Eventually, she said journalling would be useful for me. I could put what's important to me, the traits I have/inherit, how I'm feeling etc.
This session brought up a lot of difficult things that I have to face. I cried as I explained how lonely I'd been feeling. It's played on my mind ever since, so found it hard to put everything down on paper.
I will probably post about how the journalling is going, so might have posts every few days. It depends on how I feel. If I don't, then the next post will be about my next ENT appointment, where I undergo Vestibular tests for dizziness and balance problems. After that, I will post about my next counselling session.
At the start of this session, I wasn't sure what to talk about. Not much had happened, mental health-wise, in the last week.
I was still thinking about my old school-friend, who died recently. Although I knew we'd drifted apart, I still blamed myself for not making enough effort. I miss her to be honest. She was a good person.
I'd also had a GP appointment recently, where I was told to taper off my pain medication (Tramadol, slow release) as well as stop my anti-sickness medication. I have struggled with my pain, since lessening my dose of Tramadol, and I'm trying to live with it, but it is affecting my functioning. I want to function better but I can't keep pushing myself to my absolute limits.
As well as this, I'd had some pains around my stomach, hips, and back. The pains were like cramps and were getting to the point where I was doubled over and sweating. The GP seemed concerned about this, and suggested I might have an ovarian cyst. This played on my mind, and I got a bit of a shock when I was handed the blood form and found they were testing for cancer (I reckon ovarian cancer, but I'm not sure if they test for antibodies or something like that.) They say it's around 1 in 2 people who get cancer now, and my parents haven't had it so far, so maybe I won't be so lucky? I'm trying not to think this way, but I can't help worrying this may be a possibility. Even if it's not cancer, any kind of problems with my ovaries makes me scared that my fertility would be affected.
I'm nearly 30 and running out of time where my fertility is at its optimum levels. I feel as if I am running out of time to meet someone, get married, and have children. Life seems to pass by so quickly, and with the death of my friend, it seems to be getting shorter and shorter.
The counsellor seemed very sad that I was thinking this way. She asked me why I thought I wouldn't meet someone.
I said that I just don't see myself having that life, and I'm scared that nothing will change unless I change parts of myself. But how? Where do I start?
I became upset as I told her that I never felt as if I was "enough". With romantic relationships specifically, I always felt as if I was second best, last choice, or just completely unimportant, so I felt like that about myself. I wanted to feel loved, attractive, and respected. She asked me why I felt this was so important?
I said that I wanted to make some sort of difference in the world. I wanted to feel as if my life was worth something, that I was worth something. I don't want to leave this world without doing some good. She also asked me if there were people I looked up to, who had made these kinds of differences in the world. I told her that I had some friends who were very vocal about mental health, and did their best to write in order to tell the truth about mental health services these days, as well as raising awareness and breaking down stigma. They wrote for online magazines and newspapers. They had thousands of followers. I'm not too bothered about having lots of followers, but I do want my opinion to be heard, respected, and understood. I want my words to mean something to someone. I want to do something good, however I can. I wish I had the confidence to do this. I feel I'm wasting my life otherwise.
I admitted that I had done some good. I've been over the phone/text/twitter to someone who was taking an overdose. I have talked someone out of killing themself. According to some friends, my blogging has helped them, and I've helped them by being there for them when they needed it most. I just felt like I could do more, make more of a difference. Even here, I feel like I'm not doing enough, and that I myself am not enough.
After this, my counsellor suggested doing an exercise. She did suggest talking about the future, but I refused, as I was feeling so scared and down about it, that I couldn't bring myself to focus on it right now. Instead, we did more identity work.
She gave me a sheet of paper, and asked me to put myself in the middle. I drew a stick man, and wrote "me" above it. My art skills aren't great...
She then asked me to write the traits I thought I had, around the figure of myself. I struggled a bit, but managed to put things such as "stubborn, determined, wanting to control things, perfectionist, kind, friendly, a good friend, ambitious, impressionable".
We spoke about the traits I had, and I told her that control was a big part of my personality. I'm diagnosed with OCD, although I believe my symptoms are quite mild now, but I am still a real perfectionist who hates to be out of control. We also talked about my stubbornness. My counsellor asked why I thought I was stubborn. I struggled to explain, and couldn't give any specific examples, but I did tell her that when I set my mind to something, I would usually do it. I would listen to advice from others, but it was ultimately me who would make the decision.
Possibly contradictory to the stubbornness, I also felt that I was quite impressionable. If I looked up to someone, I would try to take on parts of their personality. I would also follow their advice. In the past, I would do whatever someone wanted me to do, without question. Maybe I was worried about the consequences, if I did question them? I have a feeling this is how the bullying started anyway.
Lastly, the counsellor asked me to write down people who gave or influenced these personality traits in me. I won't say specific names, but these included friends, parents, and grandparents. I could link certain things to certain people. I also found myself digressing when I talked about some of them. One was a friend of mine who hasn't spoken to me in a long time. He was someone I had a lot of history with, and still thought about recently. I believed I got my determination and ambition from him, at least in some way. I resented how he hadn't been there for me for ages, when I really needed him. I wish we hadn't complicated our friendship, but at the same time, I still have thoughts about being with him again. I wish I could switch off those feelings, but I had a dream about him recently that brought it all back. I hate how influential my dreams are.
My counsellor and I discussed how it is interesting that people can pass certain traits onto people, without intending to. It certainly made me wonder just how impressionable I am.
There was only a few minutes left of the session by that time. My counsellor summed it all up, and said that she felt I was very lonely, unsure of myself, not really feeling like myself anymore. I want to go back to how things were with some friends, and my own traits (confidence, feeling attractive etc). I doubt myself and dread the future. She asked me what I'd like to do between sessions, in order to make some sort of change in myself. I asked what I could do, but she wanted me to come up with my own suggestions, as this wasn't rigidly structured (like CBT). Eventually, she said journalling would be useful for me. I could put what's important to me, the traits I have/inherit, how I'm feeling etc.
This session brought up a lot of difficult things that I have to face. I cried as I explained how lonely I'd been feeling. It's played on my mind ever since, so found it hard to put everything down on paper.
I will probably post about how the journalling is going, so might have posts every few days. It depends on how I feel. If I don't, then the next post will be about my next ENT appointment, where I undergo Vestibular tests for dizziness and balance problems. After that, I will post about my next counselling session.
Monday, 16 October 2017
Going Abroad with Chronic Physical and Mental Illnesses
Last month, I went on holiday to Gran Canaria, with my parents. As a person with multiple mental health, physical health, and mobility problems, the thought of travelling abroad can be quite daunting and nerve wracking. Will I remember everything I need to pack? How would I be able to get across a large airport, when I can't walk far at the best of times? How will I keep myself calm? Will there be toilets available nearby? How can I plan my holiday to make sure I'm not overdoing it every day? These were just a few worries that I had. Below, I explain how I eased or solved these problems.
Packing:
About a week before I was set to go, I made lists of things to pack. I wanted to ensure I would be able to keep as cool and comfortable as possible.
Resources
https://www.birminghamairport.co.uk/at-the-airport/terminal-facilities/special-assistance/
Packing:
About a week before I was set to go, I made lists of things to pack. I wanted to ensure I would be able to keep as cool and comfortable as possible.
- I picked clothes that could mostly be slipped on, with no fiddly fastenings to deal with.
- I made sure I packed extra medication (including extra pain medication) so that I definitely had enough for the holiday.
- To keep myself cool (as well as for easily removing makeup!), I packed a full pack of face wipes.
- I packed travel size bottles of shampoo, shower gel, moisturiser etc. These are useful for keeping the luggage weight below the allowance, but also are easier on achy arms. There will be days where washing/showering is a struggle, so light products are helpful.
- Dry shampoo! I usually try to shower every other day, but sometimes I have to miss a few days, so dry shampoo is absolutely wonderful for ensuring my hair stays relatively fresh and clean.
At the Airport:
There are various things to consider, when at the airport, especially when you are chronically ill (physically or mentally).
- It is important to book special assistance at least 48 hours before you are due to travel.
- As soon as you arrive at the airport, find OCS for special assistance. They can help with getting across the airport and through security, as well as boarding the plane and even getting you to your seat (using an aisle wheelchair) if needs be. You can use your own wheelchair, if you have one, or one will be provided for you. There may also be mobility scooters available if you'd prefer to use those. I flew from Birmingham airport and found OCS opposite the Spar shop in departures. Make sure you have your passport and boarding ticket to hand, to show when asked.
- This link will give you more information about special assistance at Birmingham Airport specifically. For any other airports, there should be information about disabled facilities and special assistance on their website.
On the Plane:
- Ask for assistance, if you need help with putting your hand luggage in the overhead locker. Airline staff are there to help!
- I find it's helpful to have anything you need for the flight to hand (maybe in a handbag if it fits) so that you won't need to get to the overhead locker and search for your bag amongst the others.
Arriving at your destination's airport:
- It's likely that passengers will need to alight the plane via the stairs (unless you're lucky and a tunnel is ready!) An ambilift will be available, however, for passengers needing special assistance.
- You will need to wait until everyone (not needing special assistance) has left the plane, before assistance and the ambilift will be available. This may take a little while, so it's best to remain seated until you see special assistance staff.
- If you have checked in your own wheelchair, it may be the case that it will arrive on a different carousel to your suitcase/s. At Las Palma Airport, the wheelchair arrived on the last carousel to the right. We weren't made aware of this beforehand, so had a bit of a panic before a member of staff advised us!
Transfers from the airport to your destination.
- Coaches can be a nightmare to get onto; with large steps and rarely any toilets. The amount of stops they make can increase the journey time by a lot as well. I would suggest booking a taxi. It pretty much halves the journey time!
At your destination
- I know it's tempting to plan to do a lot on holiday (especially if there's lots to do/explore!) but consider what makes you flare up. As you would at home (when having plans for days/nights out), rest up as much as you can, before doing anything potentially flare-inducing. Most hotels have areas near reception where you can relax, so keep that in mind if the cleaner needs to access your room.
Are there any other tips you would give for fellow spoonies? Comment below!
Resources
https://www.birminghamairport.co.uk/at-the-airport/terminal-facilities/special-assistance/
Wednesday, 4 October 2017
A Review of Resonant Botanicals Qi of Calm Lotion (Sponsored Blog Post)
Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
I suffer from multiple anxiety disorders (including Generalised Anxiety Disorder and Social Anxiety Disorder) and find that I often need something to calm my nerves quite quickly. I get the most anxiety when in busy situations particularly. In the past, I've used Diazepam, which has been effective for anxiety, panic, and sleep, but I can only get this on prescription when close to/in crisis. This leaves me without adequate treatment when panicking or suffering insomnia due to anxiety. I did want to try something more natural, just to see if it would help. To be honest, I take enough medication and would rather not take any more! I was given the opportunity to try out and review Resonant Botanicals Qi of Calm Lotion, and decided to give it a go.
Resonant Botanicals Qi of Calm is a lotion, combining herbs, essential oils and green tea, in order to help with anxiety and sleep. The combination of herbs, including lavender, skullcap, and ashwaganda, works to protect against stress and maintain an emotional balance. Essential oils, including Frankincense, Chamomile, and Bergamot, help with relaxation. Finally, green tea contains an amino acid that is also said to promote relaxation.
How to use: The lotion works by being applied to certain areas of the body which are said to be associated with balancing emotions and promoting a sense of calm. Rub in a small amount of the lotion on the left side of the abdomen, (just below the ribs), on the neck below the chin, and the bottoms of your feet.
The Bottle
Qi of Calm Lotion comes in a fairly large silver bottle, with a pump dispenser. Directions for use are clearly displayed on the left side, and ingredients on the right side. The lotion is very easily dispensed, and one dispensed amount is more than enough to apply to all of the points recommended.
The Scent
The lotion has quite a herbal scent; which is quite pleasant. I find the scent itself quite calming, and believe this is probably partly how the product works. Personally, I feel the scent lasts a bit longer than I would've liked, but this is purely subjective.
The Feel
The texture is soft; with not too thick or thin creamy substance. The lotion spreads very well, so only a small amount is needed. One bottle should last you a while.
Is it Effective?
I've not noticed a significant improvement in my sleep, but I do find this product has an immediate calming effect. I think it is best to use it shortly before bedtime or any other time you need to feel calm quickly.
Give it a try!
If you are interested in trying Qi of Calm Lotion, then you can find the product page here . I do recommend giving it a try, it is definitely becoming part of my daily regime!
Resources:
Chronic Illness Bloggers network: http://
Resonant Botanicals Qi of Calm product page: http://resonantbotanicals.com/product/qi-of-calm-for-anxiety-relief/
Resonant Botanicals website: http://resonantbotanicals.com/
I suffer from multiple anxiety disorders (including Generalised Anxiety Disorder and Social Anxiety Disorder) and find that I often need something to calm my nerves quite quickly. I get the most anxiety when in busy situations particularly. In the past, I've used Diazepam, which has been effective for anxiety, panic, and sleep, but I can only get this on prescription when close to/in crisis. This leaves me without adequate treatment when panicking or suffering insomnia due to anxiety. I did want to try something more natural, just to see if it would help. To be honest, I take enough medication and would rather not take any more! I was given the opportunity to try out and review Resonant Botanicals Qi of Calm Lotion, and decided to give it a go.
Resonant Botanicals Qi of Calm is a lotion, combining herbs, essential oils and green tea, in order to help with anxiety and sleep. The combination of herbs, including lavender, skullcap, and ashwaganda, works to protect against stress and maintain an emotional balance. Essential oils, including Frankincense, Chamomile, and Bergamot, help with relaxation. Finally, green tea contains an amino acid that is also said to promote relaxation.
How to use: The lotion works by being applied to certain areas of the body which are said to be associated with balancing emotions and promoting a sense of calm. Rub in a small amount of the lotion on the left side of the abdomen, (just below the ribs), on the neck below the chin, and the bottoms of your feet.
The Bottle
Qi of Calm Lotion comes in a fairly large silver bottle, with a pump dispenser. Directions for use are clearly displayed on the left side, and ingredients on the right side. The lotion is very easily dispensed, and one dispensed amount is more than enough to apply to all of the points recommended.
The Scent
The lotion has quite a herbal scent; which is quite pleasant. I find the scent itself quite calming, and believe this is probably partly how the product works. Personally, I feel the scent lasts a bit longer than I would've liked, but this is purely subjective.
The Feel
The texture is soft; with not too thick or thin creamy substance. The lotion spreads very well, so only a small amount is needed. One bottle should last you a while.
Is it Effective?
I've not noticed a significant improvement in my sleep, but I do find this product has an immediate calming effect. I think it is best to use it shortly before bedtime or any other time you need to feel calm quickly.
Give it a try!
If you are interested in trying Qi of Calm Lotion, then you can find the product page here . I do recommend giving it a try, it is definitely becoming part of my daily regime!
Resources:
Chronic Illness Bloggers network: http://
Resonant Botanicals Qi of Calm product page: http://resonantbotanicals.com/product/qi-of-calm-for-anxiety-relief/
Resonant Botanicals website: http://resonantbotanicals.com/
Wednesday, 23 August 2017
Good Day vs Bad Day
Good day
The above picture is how I usually look on a good day.
On a good day, I'll wake up in the morning; feeling like I can get through the day. My fatigue is bad, but not unbearable. It will take me about 15 mins to get out of bed and, once the dizziness is gone, I can go to the bathroom and brush my teeth. I will rest after this, and have a wash or shower once my pain meds have kicked in. The pain medication does not completely rid me of pain, but it makes me much more functional than I would be without it.
I will need to rest, before getting my breakfast, and rest again, before drying my hair. After this, dressing, and makeup, I will have just enough energy to leave the house. On a really good day, which is rare, I will meet a friend for lunch. Anxiety means that I will need to be picked up by them, or given a lift by my dad, but the main thing is that socialising at all is possible.
Once I'm home, I will rest for the duration of the day; having a few hours nap in the late afternoon if I'm able to sleep. Tea will be something easy to prepare/cook, or it might be a takeaway.
Bad day
The above picture is usually how I look on a bad day
My bad days tend to be very bad. I'm in a lot more pain, pain meds won't touch it (even though I will need to take more than on a good day). I'm dizzy, headache-y, shaky, nauseous, and absolutely exhausted. I will get up in the morning (my cat, Billie, demands it!) but it will take me at least double the time as a good day. I will struggle to stay awake through because of fatigue, but I will struggle to sleep, because of pain and nausea. I won't have the energy to shower or wash. I will make it to the living room for a coffee, brush my teeth after a rest, and "wash" myself with face wipes after another rest. Breakfast will be anything I can grab; such as an apple. It'll have to be something light.
I will struggle to brush my hair, and I will find the comfiest, loose clothing I can find. The Fibromyalgia makes my skin very sore (as if I'm burnt and bruised all over), so I have to think about the tightness and the material in the clothes I wear. I will take my laptop into the living room, and try to concentrate on a programme, casual game or video clips. My mood will be low, because I'm not able to do much at all. I will feel fed up and I'll be likely to isolate myself from others.
I will stay sat up for as long as I can, and then will go back to bed until teatime. I may be able to nap, but I'm very unlikely to feel much better for it.
Tea will be a takeaway, and my dad will have to wash up, as standing for more than a few minutes will make me so dizzy, I'm very likely to fall.
-------------------------------------------------------
Most of the time, my days are something between good and bad. I'm able to manage basic things, such as personal hygiene and preparing simple meals, but things like housework, socialising etc are extremely difficult or impossible. I manage my symptoms by balancing rest with trying to keep moving and doing my physio. I do this to lessen the chances of my joints seizing up, and also for general health.
How do you manage the symptoms of your chronic illness/es? Do you have any hints and tips, that you would like to share? Comment below!
Monday, 21 August 2017
Ultrasound Therapy for Hip Bursitis - My experience
(TW: Mention of weight and exercise)
A little while ago, I noticed I was getting a different kind of pain in my hips. The pain radiated over my hips and halfway down the sides of my thighs. It did feel different to my usual pains from the Hypermobility Syndrome and Fibromyalgia. I mentioned this at a medication review, and made an appointment with my GP. She examined my hips and asked me to do a couple of things to see if it affected my movement. Being hypermobile though, I still had a large range of movement. The GP said she suspected Hip Bursitis and referred me for physio.
Hip Bursitis ₁ is basically inflammation of the hip/s. There is a build-up of fluid and, with that and the inflammation, pain and tenderness occurs. It can be caused by a number of things; including injury or trauma. I don't remember knocking my hips on anything, so think mine was caused by the regular subluxations I have. My hips are very hypermobile, and apparently this is quite noticeable when I walk.
It was only a couple of weeks before my first physio appointment, thankfully, and I saw a lovely woman who knew about my conditions. She examined my hips and showed me an exercise I could do; in order to strengthen the muscles round them. She said it's quite rare to get bursitis in both hips (I guess I was just very unlucky!) but both my hips are equally hypermobile, so this is probably why.
She also booked me in for ultrasound ₂ sessions. I asked about this, because I'd never heard of it. I thought physiotherapy mainly involved exercise, but apparently there are other types of therapy that can be used. The physiotherapist told me that cold gel is put on my hip, then the ultrasound device is rubbed on both for 5 minutes each. It should help with reducing the inflammation. Some people only need one or two sessions to feel any sort of benefit, some need more.
I found the ultrasound very gentle, and relaxing to be honest. We started with me lying on my side, but this proved too painful, so I would have the sessions sitting down. The ultrasound device reminded me of the ones used for scans. Of course there's no screen, however. I found it a bit difficult to sit completely still; due to muscle twitches I experienced. I think this may be because of the Fibromyalgia. The physio understood though, and this didn't disrupt the sessions too much.
I had about 4 sessions, and although I still have a bit of the bursitis pain, it is a lot less painful than it was, when I started physio. I made sure I did the exercises too, which I think have also helped.
I've decided to see what kind of exercises I can tolerate, as well as the physio. I want to do this for general health, and to help me manage my weight. Since being on mood stabilisers, I've found my weight increasing and I want to try and lose that. Wish me luck!
Resources
1. https://www.arthritis-health.com/types/bursitis/hip-trochanteric-bursitis
2. http://www.mybursitis.com/bursitis-ultrasound.html
A little while ago, I noticed I was getting a different kind of pain in my hips. The pain radiated over my hips and halfway down the sides of my thighs. It did feel different to my usual pains from the Hypermobility Syndrome and Fibromyalgia. I mentioned this at a medication review, and made an appointment with my GP. She examined my hips and asked me to do a couple of things to see if it affected my movement. Being hypermobile though, I still had a large range of movement. The GP said she suspected Hip Bursitis and referred me for physio.
Hip Bursitis ₁ is basically inflammation of the hip/s. There is a build-up of fluid and, with that and the inflammation, pain and tenderness occurs. It can be caused by a number of things; including injury or trauma. I don't remember knocking my hips on anything, so think mine was caused by the regular subluxations I have. My hips are very hypermobile, and apparently this is quite noticeable when I walk.
It was only a couple of weeks before my first physio appointment, thankfully, and I saw a lovely woman who knew about my conditions. She examined my hips and showed me an exercise I could do; in order to strengthen the muscles round them. She said it's quite rare to get bursitis in both hips (I guess I was just very unlucky!) but both my hips are equally hypermobile, so this is probably why.
She also booked me in for ultrasound ₂ sessions. I asked about this, because I'd never heard of it. I thought physiotherapy mainly involved exercise, but apparently there are other types of therapy that can be used. The physiotherapist told me that cold gel is put on my hip, then the ultrasound device is rubbed on both for 5 minutes each. It should help with reducing the inflammation. Some people only need one or two sessions to feel any sort of benefit, some need more.
I found the ultrasound very gentle, and relaxing to be honest. We started with me lying on my side, but this proved too painful, so I would have the sessions sitting down. The ultrasound device reminded me of the ones used for scans. Of course there's no screen, however. I found it a bit difficult to sit completely still; due to muscle twitches I experienced. I think this may be because of the Fibromyalgia. The physio understood though, and this didn't disrupt the sessions too much.
I had about 4 sessions, and although I still have a bit of the bursitis pain, it is a lot less painful than it was, when I started physio. I made sure I did the exercises too, which I think have also helped.
I've decided to see what kind of exercises I can tolerate, as well as the physio. I want to do this for general health, and to help me manage my weight. Since being on mood stabilisers, I've found my weight increasing and I want to try and lose that. Wish me luck!
Resources
1. https://www.arthritis-health.com/types/bursitis/hip-trochanteric-bursitis
2. http://www.mybursitis.com/bursitis-ultrasound.html
Friday, 28 July 2017
After CMHT Discharge
On 26th June, I was discharged from the Community Mental Health Team (CMHT). I was told I'd be sent my care plan in the post, so I'd know what to do depending on how well/ill I feel. At the time, I was having a fairly ok day and, although I felt anxious about being discharged, I accepted it and thought that maybe this was a good time for me to try coping just with self help and my support network of friends and family.
It was about 4 weeks before I eventually received my care plan, and in that time I was feeling more unwell, and really needed to be reminded of what to do. I rang the mental health team, to ask for my care plan, and also with the hope of being able to talk about how I'd been feeling. The line was bad unfortunately, and there was a lot of background noise. I had to repeat myself a lot, and couldn't face talking through how I felt in the end.
When my care plan arrived, I had a look through it and saw that there'd been some errors. On the front page was the Summary/Formulation of Need. It said:
Amy has been seen in primary care, however did not complete her therapy. There has been a history of bullying in school and emotional distress after a traumatic life decision. Amy feels that she has a diagnosis of Borderline Personality Disorder after comparing her symptoms to others and would like an OPA with a consultant psychiatrist in order to obtain a formal diagnosis. She is currently not working due to chronic pain caused by ME and hypermobility. She has agreed to have a short piece of work in regards to self compassion and anxiety management prior to her discharge from services.
26/6/17: Discharged from CMHT to continue her recovery independently in the community
As you may know, I have been formally diagnosed with Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder), but this was not confirmed in the Summary/Formulation of Need. When talking about my chronic pain conditions, it's written that I have ME and hypermobility. I actually have Fibromyalgia and Joint Hypermobility Syndrome.
The next page gives information on how I will be cared for in the community. In this, it mentions my GP is to provide future care and support. It also mentions my mental health medication (Aripriprazole 10mg and Sertraline 200mg) and that I can self refer to primary care if I need more support with anxiety.
The last few pages advise on what I would notice and what I should do when feeling relatively well (this is coded as GREEN), when I'm feeling that things are building up (AMBER) and when I am at crisis point (RED).
For GREEN, I would notice that I'm feeling more loved, less anxious, more motivated and impulsive etc. While I feel like this, I should continue with distraction techniques, self refer to Primary care if I feel able to tackle anxiety issues, and remind myself of positive comments I've received.
For AMBER, I would notice that I'm feeling low, that there's no point to anything, I'm being more argumentative, panicking, and having urges to self harm. While I feel like this, I should contact CMHT or out of hours and try to use coping strategies.
For RED, I would notice that I am having suicidal thoughts, dissociating a lot, becoming paranoid and isolating myself. While I feel like this I should contact CMHT and I may be reallocated to CPN and/or have an emergency OPA or medication review.
Although this care plan sounds pretty comprehensive, I've been finding it hard to concentrate on it and follow the advice. I've been feeling that I am between the Amber and Red stages, so should really contact CMHT but I'm put off by my experience when calling to ask for my care plan. I'm wondering about whether there's any point to asking for help from them. My mental health conditions are ongoing and what I need is ongoing care from mental health services. I remember my CPN saying that, due to funding cuts, they were only able to offer short term help. Should I call anyway? Will I be able to talk to someone or will there be lots of background noise again? I may need to talk about some difficult/private things and I worry others will hear me.
What I really want/need is ongoing contact with a CPN (preferably the one I was with before). It takes me a while to really open up and let go. I can sound positive if I don't know the person I'm talking to. I find it hard to really say how bad things are, so I may seem ok. Unfortunately, it looks as if I wouldn't be able to get a CPN on more than a short term basis.
I've been trying to use my support network as well; most of them being online. Thanks to social media algorithms, however, the status' etc that I post aren't always seen. I had a time very recently when I was feeling particularly low/paranoid/panicky and posted a status basically asking for friends to check in on me and notice when I'm spiralling. The first time I posted it, no one commented. I posted it again, and one person commented. Although I was of course grateful for one person noticing, I felt upset and angry that no one else had. I felt that surely out of 80ish friends, more would notice. I thought I was being ignored, or that I'd been muted/unfollowed by people I thought cared about me. I felt so awful and I guess I was getting to the RED stage of my care plan. I was too engulfed in my own horrible thoughts/feelings though, so could not motivate myself to read it and follow it.
The next day, I decided to take a break to see if anyone would notice I wasn't online. That only lasted a couple of days because I was so desperate to talk to friends, so no one noticed.
A few days after, I posted another status and was surprised to get a fair amount of comments of support. It definitely made me feel a bit better, although I knew that I still wasn't feeling well. Since then, I've had times where I'm numb, times when I'm emotional, and times where I have self harmed and felt suicidal. These feelings have been changing so rapidly though, I haven't been sure of what I should do. What if I feel really ill and decide to ring CMHT, but then I sound ok when I get through to them? What if they decide I should just rely on myself and then I'm left feeling awful again? Having rapidly changing moods is so hard when it comes to accessing help. Just because I may seem ok at one point (and may be feeling ok/numb as well) doesn't mean I'll feel like that for the rest of the day even!
The self compassion work did help me a bit, and I started to feel less paranoid if a friend didn't reply to me. I could consider that maybe they were just busy or not feeling well enough to talk. A support worker helped me with self compassion. Having that support from her did help me feel a bit better, but now it's not there, I've been feeling awful, alone, and paranoid about friends again.
The distraction techniques help as long as I'm not too unwell. I find it hard to catch myself before I get too ill though. My motivation to use the distraction techniques tends to be quite low as well.
I feel useless when it comes to looking after myself!
It was about 4 weeks before I eventually received my care plan, and in that time I was feeling more unwell, and really needed to be reminded of what to do. I rang the mental health team, to ask for my care plan, and also with the hope of being able to talk about how I'd been feeling. The line was bad unfortunately, and there was a lot of background noise. I had to repeat myself a lot, and couldn't face talking through how I felt in the end.
When my care plan arrived, I had a look through it and saw that there'd been some errors. On the front page was the Summary/Formulation of Need. It said:
Amy has been seen in primary care, however did not complete her therapy. There has been a history of bullying in school and emotional distress after a traumatic life decision. Amy feels that she has a diagnosis of Borderline Personality Disorder after comparing her symptoms to others and would like an OPA with a consultant psychiatrist in order to obtain a formal diagnosis. She is currently not working due to chronic pain caused by ME and hypermobility. She has agreed to have a short piece of work in regards to self compassion and anxiety management prior to her discharge from services.
26/6/17: Discharged from CMHT to continue her recovery independently in the community
As you may know, I have been formally diagnosed with Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder), but this was not confirmed in the Summary/Formulation of Need. When talking about my chronic pain conditions, it's written that I have ME and hypermobility. I actually have Fibromyalgia and Joint Hypermobility Syndrome.
The next page gives information on how I will be cared for in the community. In this, it mentions my GP is to provide future care and support. It also mentions my mental health medication (Aripriprazole 10mg and Sertraline 200mg) and that I can self refer to primary care if I need more support with anxiety.
The last few pages advise on what I would notice and what I should do when feeling relatively well (this is coded as GREEN), when I'm feeling that things are building up (AMBER) and when I am at crisis point (RED).
For GREEN, I would notice that I'm feeling more loved, less anxious, more motivated and impulsive etc. While I feel like this, I should continue with distraction techniques, self refer to Primary care if I feel able to tackle anxiety issues, and remind myself of positive comments I've received.
For AMBER, I would notice that I'm feeling low, that there's no point to anything, I'm being more argumentative, panicking, and having urges to self harm. While I feel like this, I should contact CMHT or out of hours and try to use coping strategies.
For RED, I would notice that I am having suicidal thoughts, dissociating a lot, becoming paranoid and isolating myself. While I feel like this I should contact CMHT and I may be reallocated to CPN and/or have an emergency OPA or medication review.
Although this care plan sounds pretty comprehensive, I've been finding it hard to concentrate on it and follow the advice. I've been feeling that I am between the Amber and Red stages, so should really contact CMHT but I'm put off by my experience when calling to ask for my care plan. I'm wondering about whether there's any point to asking for help from them. My mental health conditions are ongoing and what I need is ongoing care from mental health services. I remember my CPN saying that, due to funding cuts, they were only able to offer short term help. Should I call anyway? Will I be able to talk to someone or will there be lots of background noise again? I may need to talk about some difficult/private things and I worry others will hear me.
What I really want/need is ongoing contact with a CPN (preferably the one I was with before). It takes me a while to really open up and let go. I can sound positive if I don't know the person I'm talking to. I find it hard to really say how bad things are, so I may seem ok. Unfortunately, it looks as if I wouldn't be able to get a CPN on more than a short term basis.
I've been trying to use my support network as well; most of them being online. Thanks to social media algorithms, however, the status' etc that I post aren't always seen. I had a time very recently when I was feeling particularly low/paranoid/panicky and posted a status basically asking for friends to check in on me and notice when I'm spiralling. The first time I posted it, no one commented. I posted it again, and one person commented. Although I was of course grateful for one person noticing, I felt upset and angry that no one else had. I felt that surely out of 80ish friends, more would notice. I thought I was being ignored, or that I'd been muted/unfollowed by people I thought cared about me. I felt so awful and I guess I was getting to the RED stage of my care plan. I was too engulfed in my own horrible thoughts/feelings though, so could not motivate myself to read it and follow it.
The next day, I decided to take a break to see if anyone would notice I wasn't online. That only lasted a couple of days because I was so desperate to talk to friends, so no one noticed.
A few days after, I posted another status and was surprised to get a fair amount of comments of support. It definitely made me feel a bit better, although I knew that I still wasn't feeling well. Since then, I've had times where I'm numb, times when I'm emotional, and times where I have self harmed and felt suicidal. These feelings have been changing so rapidly though, I haven't been sure of what I should do. What if I feel really ill and decide to ring CMHT, but then I sound ok when I get through to them? What if they decide I should just rely on myself and then I'm left feeling awful again? Having rapidly changing moods is so hard when it comes to accessing help. Just because I may seem ok at one point (and may be feeling ok/numb as well) doesn't mean I'll feel like that for the rest of the day even!
The self compassion work did help me a bit, and I started to feel less paranoid if a friend didn't reply to me. I could consider that maybe they were just busy or not feeling well enough to talk. A support worker helped me with self compassion. Having that support from her did help me feel a bit better, but now it's not there, I've been feeling awful, alone, and paranoid about friends again.
The distraction techniques help as long as I'm not too unwell. I find it hard to catch myself before I get too ill though. My motivation to use the distraction techniques tends to be quite low as well.
I feel useless when it comes to looking after myself!
Tuesday, 30 May 2017
Dear Distant Friend
I'm writing this whilst feeling very low and forgotten. I know I shouldn't dwell on the past, but it's hard to let go of old friends when they drift away. It's hard because the memories don't go, especially the memories of times you've been there for each other through some really difficult stuff. I can't just forget you, as if you never mattered. Because you really really did.
There could be many reasons why we drifted away, but please don't let it be because I got ill. All I wanted was to be believed and supported. I can't expect you to fully understand (although I really would appreciate you trying to) but when I cancelled plans, please believe me when I say it's because I wasn't well enough to meet up. I would never cancel because I can't be bothered. I loved the times we spent together and I get frustrated with myself for being ill (even though I know it's not my fault).
I miss the closeness we had. I miss how we'd confide in each other and be there for each other, through good times and bad. I wish I could switch off my feelings, because they are so painful, but I can't
One day, I hope I'm able to let you go if we're never close again.
There could be many reasons why we drifted away, but please don't let it be because I got ill. All I wanted was to be believed and supported. I can't expect you to fully understand (although I really would appreciate you trying to) but when I cancelled plans, please believe me when I say it's because I wasn't well enough to meet up. I would never cancel because I can't be bothered. I loved the times we spent together and I get frustrated with myself for being ill (even though I know it's not my fault).
I miss the closeness we had. I miss how we'd confide in each other and be there for each other, through good times and bad. I wish I could switch off my feelings, because they are so painful, but I can't
One day, I hope I'm able to let you go if we're never close again.
Saturday, 22 April 2017
Accompanying someone to a Work Capability Assessment
I've had a face to face Work Capability Assessment, as well as a face to face assessment for Personal Independence Payment in the past. I'm not sure I thoroughly described my experience of these assessments, but today I want to talk through a Work Capability Assessment my father had recently. I accompanied him and took notes throughout.
We arrived at the assessment centre, with the daunting thought that we'd probably have to park quite far away. From my experience, I know that there are a lot of cameras outside these centres and (also from my experience) there's a very high chance that the assessor is watching you to see how far you walk from your car/stop to the building, and they will write their "findings" in your report.
Luckily, we found a space just a few metres from the building. As we entered, we were greeted by a G4S security guard; who immediately asked to see our appointment letter. They also asked if my father could manage stairs or a lift. Now we were under the impression that the assessment would be held on the ground floor, and I made this fact very clear to the security guard. I also mentioned that, although my father could manage to use the lift, he wouldn't be able to use it in the event of a fire & would not be able to use the stairs. The security guard accepted this (reluctantly) and showed us to the ground floor waiting room.
The waiting room was empty, apart from one elderly woman who was noticeably struggling with pain and balance. Although the waiting room was small, there were two cameras strategically placed to film anyone waiting for their assessment. I asked the woman if she was ok, and if she needed a cup of water (there was a water cooler nearby). She declined, but told me she was very nervous about her assessment, and was fed up that she'd been waiting 45 minutes already. I told her I thought that was awful, and she replied that the couple before her had been waiting over an hour. Just before we were called in (after a receptionist came to check my father's ID and sort out travel expenses), the couple the woman had mentioned, came out of the assessment room. One of them (I assume was the claimant) was clearly in agony and could barely walk. People who are struggling this much, should not have to make their way to an assessment. They should either be assessed on paper, or in their own home. Unfortunately the rules (for an ESA claim at least) state that a doctor's note is required before a home assessment is considered. There's not much time to organise this, so this means that people are having to drag themselves to assessment centres that are not always suitable for their needs.
A rather snooty healthcare professional came to call my father in for his assessment. It was easy to tell he was watching my father's every move as we walked towards the room. I have no doubt that this will be (inaccurately) noted in the ESA report. We sat down, and I got out the folder of evidence we wanted to show, as well as a notepad and pen. The "healthcare professional" (I have no idea what his actual profession was, and his badge only said Healthcare Professional) noticed this, and commented that I was allowed to take notes as long as they were just for reference and not to be used in any investigations (hmm). I gave him my most patronising smile and said that these were just for reference. It was obvious to me that he wasn't happy about this, but there was nothing he could do. I know what's allowed. One thing I wasn't happy with, was that he didn't even introduce himself to us.
The assessment then began. The questions asked first were to do with the medical conditions my dad was claiming ESA for. The assessor went through each condition and asked how long he'd had it for, who diagnosed him, any investigations he'd had, what treatments he was on, operations he'd had, whether he'd noticed any improvements, and which specialist/s (if any) he saw for these conditions. What I found was that I had to reword some of the questions the assessor asked, in order for my dad to understand them. The assessor spoke quite quietly, mumbled a lot, and didn't word questions in a clear way. For example, when asking about my dad's total knee replacement surgery, he asked how he was rather than whether he felt there'd been any improvement since the operation. For some, it may seem easy to get what the assessor meant, but when you are put on the spot, it's much better to be asked questions in a clearer way.
We next went onto the tablets my father is currently on. I'd brought them with me, so put them on the table so I could show each box to the assessor. He asked what my father took each medication for, how often, how many at a time, what strength, how long he'd been on them etc. As my dad answered, the assessor checked through each box (presumably to see if dad was telling the truth...).
After this, the assessor asked how we had travelled to the assessment centre, and how long it had taken us. He also asked who dad had travelled with (me!), my name, and age.
We discussed sleep problems next i.e., did dad have any, why he thought he struggled with sleep, how long he slept on average etc.
We then went onto the questions asked in the ESA50 (the limited capability for work questionnaire). The assessor started with personal care questions; such as washing and dressing. He asked how long it took to get out of bed, whether he needed help with dressing or used any aids (bed included). He also asked whether my dad was able to wash/dress his upper and lower body, have showers etc. My dad made sure to mention how much he struggles, and how pain and stiffness severely affect him.
Household tasks, cooking, shopping, and leisure activities were the next topics the assessor asked questions on. He asked what types of chores & cooking dad could manage, how often, whether he needed help, why he struggled and so on. I told the assessor that there's not much we can manage and I have to help my dad if his pain gets too much or he becomes confused.
As for shopping, we do nearly all of ours online (my mum and I take turns with this, as dad can't use a computer). We only go to the shops for a couple of bits (bread and milk, for e.g.) The assessor asked if we walked to the shops, and how far away they were. Dad said that the shops were only 5 or 10 minutes away, but we still had to drive there.
Dad was asked if he had any hobbies, but there wasn't much to discuss on this topic. His concentration is poor, and he doesn't have the energy spare for socialising so it's just light reading and watching a bit of television. The assessor then asked how long dad could stand/sit for. He tried to lead dad to agree with his suggestions for an answer (standing/sitting for 45 minutes, or 2 hours?). Dad was already exhausted and needed prompting, so I told him that it was more like standing for 5 minutes, and sitting for 30 minutes before having to sit back down or move around. This was due to stiffness in joints and pain. I'm hoping the assessor noticed that my dad had to get up a few times during the assessment, for these exact reasons.
The last question asked was how long my dad could walk for, before having to stop. I notice that assessors tend to ask how long (time taken) rather than how far (distance). This does not lead them to an accurate answer for how far a claimant can walk, however, and I think they do this on purpose. No two people will travel the same distance in the space of 5 minutes, for example. One may be able to walk 200 metres, whilst another could only manage 50 minutes. I believe the assessor predicts the furthest distance walked in the time specified; which of course makes the claimant appear more able than they are. I noticed that questions were repeated and reworded sometimes, in order to supposedly "catch us out". I think our answers were consistent though, and I'm glad I'd made my dad aware beforehand that this would happen.
The last part of the assessment was the clinical one; where dad had his blood pressure checked, then had to repeat some exercises (if possible). This consisted of bending/turning his head, moving his arms forward, backwards, to each side & over his head. He also had to make a fist with each hand, and push against the assessors hands. Lastly, he had to sit down and stretch and bend his legs, then push each one against the assessor's hands (both in front and behind).
At the end, the assessor explained what would happen next (writing up the report, sending it to the decision maker etc) and that we could ask for a mandatory reconsideration if unhappy with the decision. We were so glad to get out of the building soon after this!
So that was the face to face Work Capability Assessment! I hope my account of it may be helpful to anyone waiting for theirs. I'm no expert, just someone who has been through the process, but I am happy to read any comments or answer any questions you may have. If I'm not able to answer your question/s, then I will let you know where you may find the answers.
We arrived at the assessment centre, with the daunting thought that we'd probably have to park quite far away. From my experience, I know that there are a lot of cameras outside these centres and (also from my experience) there's a very high chance that the assessor is watching you to see how far you walk from your car/stop to the building, and they will write their "findings" in your report.
Luckily, we found a space just a few metres from the building. As we entered, we were greeted by a G4S security guard; who immediately asked to see our appointment letter. They also asked if my father could manage stairs or a lift. Now we were under the impression that the assessment would be held on the ground floor, and I made this fact very clear to the security guard. I also mentioned that, although my father could manage to use the lift, he wouldn't be able to use it in the event of a fire & would not be able to use the stairs. The security guard accepted this (reluctantly) and showed us to the ground floor waiting room.
The waiting room was empty, apart from one elderly woman who was noticeably struggling with pain and balance. Although the waiting room was small, there were two cameras strategically placed to film anyone waiting for their assessment. I asked the woman if she was ok, and if she needed a cup of water (there was a water cooler nearby). She declined, but told me she was very nervous about her assessment, and was fed up that she'd been waiting 45 minutes already. I told her I thought that was awful, and she replied that the couple before her had been waiting over an hour. Just before we were called in (after a receptionist came to check my father's ID and sort out travel expenses), the couple the woman had mentioned, came out of the assessment room. One of them (I assume was the claimant) was clearly in agony and could barely walk. People who are struggling this much, should not have to make their way to an assessment. They should either be assessed on paper, or in their own home. Unfortunately the rules (for an ESA claim at least) state that a doctor's note is required before a home assessment is considered. There's not much time to organise this, so this means that people are having to drag themselves to assessment centres that are not always suitable for their needs.
A rather snooty healthcare professional came to call my father in for his assessment. It was easy to tell he was watching my father's every move as we walked towards the room. I have no doubt that this will be (inaccurately) noted in the ESA report. We sat down, and I got out the folder of evidence we wanted to show, as well as a notepad and pen. The "healthcare professional" (I have no idea what his actual profession was, and his badge only said Healthcare Professional) noticed this, and commented that I was allowed to take notes as long as they were just for reference and not to be used in any investigations (hmm). I gave him my most patronising smile and said that these were just for reference. It was obvious to me that he wasn't happy about this, but there was nothing he could do. I know what's allowed. One thing I wasn't happy with, was that he didn't even introduce himself to us.
The assessment then began. The questions asked first were to do with the medical conditions my dad was claiming ESA for. The assessor went through each condition and asked how long he'd had it for, who diagnosed him, any investigations he'd had, what treatments he was on, operations he'd had, whether he'd noticed any improvements, and which specialist/s (if any) he saw for these conditions. What I found was that I had to reword some of the questions the assessor asked, in order for my dad to understand them. The assessor spoke quite quietly, mumbled a lot, and didn't word questions in a clear way. For example, when asking about my dad's total knee replacement surgery, he asked how he was rather than whether he felt there'd been any improvement since the operation. For some, it may seem easy to get what the assessor meant, but when you are put on the spot, it's much better to be asked questions in a clearer way.
We next went onto the tablets my father is currently on. I'd brought them with me, so put them on the table so I could show each box to the assessor. He asked what my father took each medication for, how often, how many at a time, what strength, how long he'd been on them etc. As my dad answered, the assessor checked through each box (presumably to see if dad was telling the truth...).
After this, the assessor asked how we had travelled to the assessment centre, and how long it had taken us. He also asked who dad had travelled with (me!), my name, and age.
We discussed sleep problems next i.e., did dad have any, why he thought he struggled with sleep, how long he slept on average etc.
We then went onto the questions asked in the ESA50 (the limited capability for work questionnaire). The assessor started with personal care questions; such as washing and dressing. He asked how long it took to get out of bed, whether he needed help with dressing or used any aids (bed included). He also asked whether my dad was able to wash/dress his upper and lower body, have showers etc. My dad made sure to mention how much he struggles, and how pain and stiffness severely affect him.
Household tasks, cooking, shopping, and leisure activities were the next topics the assessor asked questions on. He asked what types of chores & cooking dad could manage, how often, whether he needed help, why he struggled and so on. I told the assessor that there's not much we can manage and I have to help my dad if his pain gets too much or he becomes confused.
As for shopping, we do nearly all of ours online (my mum and I take turns with this, as dad can't use a computer). We only go to the shops for a couple of bits (bread and milk, for e.g.) The assessor asked if we walked to the shops, and how far away they were. Dad said that the shops were only 5 or 10 minutes away, but we still had to drive there.
Dad was asked if he had any hobbies, but there wasn't much to discuss on this topic. His concentration is poor, and he doesn't have the energy spare for socialising so it's just light reading and watching a bit of television. The assessor then asked how long dad could stand/sit for. He tried to lead dad to agree with his suggestions for an answer (standing/sitting for 45 minutes, or 2 hours?). Dad was already exhausted and needed prompting, so I told him that it was more like standing for 5 minutes, and sitting for 30 minutes before having to sit back down or move around. This was due to stiffness in joints and pain. I'm hoping the assessor noticed that my dad had to get up a few times during the assessment, for these exact reasons.
The last question asked was how long my dad could walk for, before having to stop. I notice that assessors tend to ask how long (time taken) rather than how far (distance). This does not lead them to an accurate answer for how far a claimant can walk, however, and I think they do this on purpose. No two people will travel the same distance in the space of 5 minutes, for example. One may be able to walk 200 metres, whilst another could only manage 50 minutes. I believe the assessor predicts the furthest distance walked in the time specified; which of course makes the claimant appear more able than they are. I noticed that questions were repeated and reworded sometimes, in order to supposedly "catch us out". I think our answers were consistent though, and I'm glad I'd made my dad aware beforehand that this would happen.
The last part of the assessment was the clinical one; where dad had his blood pressure checked, then had to repeat some exercises (if possible). This consisted of bending/turning his head, moving his arms forward, backwards, to each side & over his head. He also had to make a fist with each hand, and push against the assessors hands. Lastly, he had to sit down and stretch and bend his legs, then push each one against the assessor's hands (both in front and behind).
At the end, the assessor explained what would happen next (writing up the report, sending it to the decision maker etc) and that we could ask for a mandatory reconsideration if unhappy with the decision. We were so glad to get out of the building soon after this!
So that was the face to face Work Capability Assessment! I hope my account of it may be helpful to anyone waiting for theirs. I'm no expert, just someone who has been through the process, but I am happy to read any comments or answer any questions you may have. If I'm not able to answer your question/s, then I will let you know where you may find the answers.
Tuesday, 27 December 2016
Spinning Plates
I was trying to think of a half-decent title for this blog post, and "Spinning Plates" was all that really came to mind. I needed a title that described how I felt when it came to dealing with physical health problems, as well as mental health problems. I've mentioned my diagnoses before, but I'll state them here and hopefully I can explain how managing these conditions feels a lot like "spinning plates".
Fibromyalgia: I've had this since 2010 and sometimes I feel I've accepted it, sometimes I get extremely frustrated, upset, and angry at how much it limits what I can do/how often I can do it. I'm so used to pushing myself that I find it very hard to stop and pace before I cause my symptoms to flare up. Sometimes I deliberately go too far, because I find physical pain a little easier to cope with than mental pain. When I do pace, the internalised ableism kicks in, and I feel as if I'm being lazy, not making the most of the day etc. I know that pacing myself is a good thing to do, and resting is still productive as it means I am looking after myself. I just wish I could feel less guilty about it!
Hypermobility Syndrome: I'm not entirely sure when it became Joint Hypermobility Syndrome, but I know I've been hypermobile all my life. As I learn more about it, I realise how mindful I have to be when it comes to using my joints. I have multiple subluxations every day, and sometimes I have dislocations too. Having doctors finally believe me (after a physio actually seeing and hearing a joint dislocate!) has helped a little, but doesn't take away the frustration with working around limitations and not getting much support for it.
Depression: Looking after yourself is so so important anyway, let alone when you are dealing with multiple illnesses & disabilities! I really do try, but Depression zaps my energy (what's left of it, thanks to Fibro and JHS anyway!). I struggle with motivation as well. Emotionally, the most basic sounding tasks can feel like trying to climb a mountain. On my bad depression days, I barely do a thing, and then I hate myself for being "lazy". If it isn't too bad on particular days, but my physical health problems are, I then get frustrated with myself for physically not being able to do things that might help my mood a little (e.g. making a nice snack, doing some cross stitch, meeting a friend).
Generalized Anxiety Disorder: When anxiety gets severe, it can limit you so much. I could be having a day with slightly less physical pain, or even less fatigue. On this day, I may want to make the most of this by maybe having a walk, or at least getting out of the house (even if just into the garden). Anxiety can have a real hold on me however, and often it becomes a panic attack (which then makes the physical pain, fatigue etc worse!). As much as I want to be able to do stuff, I just can't. It's as if invisible arms are squeezing me tightly, the room has become unbearably hot, my head is pounding, the room is spinning, and I can't focus on anything else. I know these things are down to anxiety and panic, and that they will lessen in time, but it does not stop me from feeling them so intensely.
Agoraphobia: The symptoms I get with Agoraphobia are very much the same as with GAD, but they are of course more about situations (such as being out of the house, being in a busy place, not being able to get out of somewhere quickly or easily). If it is quiet, having a short walk can help lessen my depressive symptoms temporarily. I want to be able to do this as much as my health allows, but the agoraphobia holds me back. Even if I manage to force myself outside, if it is bad enough, I will not feel better. I will spend the whole time on the edge of a panic attack and that will be my energy gone for the day.
Obsessive Compulsive Disorder: This can affect my ability to get out of the house and cope with daily things. The meds I'm on do help calm down my OCD related anxiety a little, but on a bad day I could struggle just as much as I did before I was on the meds. Again, this holds me back and stops me from being able to make the most of low pain/fatigue days.
I hope this makes sense. There's a lot of similarities with each condition, and of course I know that mental health and physical health often overlap. For me, it feels as if they clash too! I'm trying to manage my struggles with things like anxiety with going outside and guilt from not going outside, when it occurs on a day my physical symptoms aren't too bad. On the less anxious days, I want to do more to help myself, but physical symptoms limit how much I can help myself on bad physical health days!
I guess it's about moderation and, yes, Pacing. If anyone has any tips on getting that balance right, or even if you don't and you need to vent to someone who understands, leave a comment below!
Thank you for reading.
Fibromyalgia: I've had this since 2010 and sometimes I feel I've accepted it, sometimes I get extremely frustrated, upset, and angry at how much it limits what I can do/how often I can do it. I'm so used to pushing myself that I find it very hard to stop and pace before I cause my symptoms to flare up. Sometimes I deliberately go too far, because I find physical pain a little easier to cope with than mental pain. When I do pace, the internalised ableism kicks in, and I feel as if I'm being lazy, not making the most of the day etc. I know that pacing myself is a good thing to do, and resting is still productive as it means I am looking after myself. I just wish I could feel less guilty about it!
Hypermobility Syndrome: I'm not entirely sure when it became Joint Hypermobility Syndrome, but I know I've been hypermobile all my life. As I learn more about it, I realise how mindful I have to be when it comes to using my joints. I have multiple subluxations every day, and sometimes I have dislocations too. Having doctors finally believe me (after a physio actually seeing and hearing a joint dislocate!) has helped a little, but doesn't take away the frustration with working around limitations and not getting much support for it.
Depression: Looking after yourself is so so important anyway, let alone when you are dealing with multiple illnesses & disabilities! I really do try, but Depression zaps my energy (what's left of it, thanks to Fibro and JHS anyway!). I struggle with motivation as well. Emotionally, the most basic sounding tasks can feel like trying to climb a mountain. On my bad depression days, I barely do a thing, and then I hate myself for being "lazy". If it isn't too bad on particular days, but my physical health problems are, I then get frustrated with myself for physically not being able to do things that might help my mood a little (e.g. making a nice snack, doing some cross stitch, meeting a friend).
Generalized Anxiety Disorder: When anxiety gets severe, it can limit you so much. I could be having a day with slightly less physical pain, or even less fatigue. On this day, I may want to make the most of this by maybe having a walk, or at least getting out of the house (even if just into the garden). Anxiety can have a real hold on me however, and often it becomes a panic attack (which then makes the physical pain, fatigue etc worse!). As much as I want to be able to do stuff, I just can't. It's as if invisible arms are squeezing me tightly, the room has become unbearably hot, my head is pounding, the room is spinning, and I can't focus on anything else. I know these things are down to anxiety and panic, and that they will lessen in time, but it does not stop me from feeling them so intensely.
Agoraphobia: The symptoms I get with Agoraphobia are very much the same as with GAD, but they are of course more about situations (such as being out of the house, being in a busy place, not being able to get out of somewhere quickly or easily). If it is quiet, having a short walk can help lessen my depressive symptoms temporarily. I want to be able to do this as much as my health allows, but the agoraphobia holds me back. Even if I manage to force myself outside, if it is bad enough, I will not feel better. I will spend the whole time on the edge of a panic attack and that will be my energy gone for the day.
Obsessive Compulsive Disorder: This can affect my ability to get out of the house and cope with daily things. The meds I'm on do help calm down my OCD related anxiety a little, but on a bad day I could struggle just as much as I did before I was on the meds. Again, this holds me back and stops me from being able to make the most of low pain/fatigue days.
I hope this makes sense. There's a lot of similarities with each condition, and of course I know that mental health and physical health often overlap. For me, it feels as if they clash too! I'm trying to manage my struggles with things like anxiety with going outside and guilt from not going outside, when it occurs on a day my physical symptoms aren't too bad. On the less anxious days, I want to do more to help myself, but physical symptoms limit how much I can help myself on bad physical health days!
I guess it's about moderation and, yes, Pacing. If anyone has any tips on getting that balance right, or even if you don't and you need to vent to someone who understands, leave a comment below!
Thank you for reading.
Friday, 18 November 2016
Flare ups, Frustration, and Fear
The Dreaded Envelope
The dreaded white envelope came through the post a couple of days ago. An ESA50 that I need to fill in and send back within a month. I had a feeling I'd be reassessed soon, but was hoping they would at least wait until my birthday and Christmas were out of the way first. Wishful thinking I guess! When I saw what it was, I became so panicky and tearful. I've been through it all before, and have horrible memories of the Work Capability Assessment and the Work Programme.
This is such a bad time for me to be reassessed. I don't know how I'm going to cope with it to be honest. If you've been following my vlogs, then you'll know that I'm having to talk about some very difficult things in the past, in therapy. This means that I'm struggling as it is. The pressure of being scrutinized and judged for daring to be too ill to work, and the possibility that I could either have my disabilities completely dismissed & found "fit for work" or I will be put in the work related activity group and possibly forced onto the work programme (or something similar), is likely to push me over the edge. I'm going to need a lot of support from my therapist and GP.
I hate the way the ESA letters are worded. They're covered in bold writing; telling you that you may be sanctioned/found fit for work if you don't do this or that. I struggle enough with letters like that, but I live with my parents, so they'd know if I was going into crisis. For a vulnerable person living on their own, the wording of those letters could have such a detrimental impact on their mental health. There is the focus on work being "good for your health" as well; implying that everyone should work, no matter how ill or disabled they are. So right from the start, you feel as if you will be found fit for work regardless.
I'm hoping I can get evidence from my physio, therapist/mental health nurse, and GP; to back up my claim. I know in some areas, GPs won't do supporting letters for ESA claims however. I've not been in this area very long, so have only been registered with this GP for less than a year. I do hope I can get some sort of evidence though.
Flare ups
I've been in more pain, much more exhausted, and more dizzy than usual this past week or so. I think the damper weather must be making me feel worse. I'm due to start my period soon as well, and find that I flare up more easily around this time. I've found it particularly frustrating this time round however. I'm finally having a type of therapy that might actually help, and physiotherapy with a physio who has one of my conditions. I had to cancel both of those appointments this week. I was getting motion sickness, bad dizziness, overheating and getting exhausted after simple things (such as brushing my teeth). I don't want to end up cancelling too many appointments, or I will be discharged. I need that extra support!
All I can do, I guess, is pace myself, rest when I need to (i.e. before I'm completely exhausted), and look after myself better. I wish I could control my illnesses, but I've tried and the best I can do is manage and work round them. Willpower does not cure chronic illnesses.
The dreaded white envelope came through the post a couple of days ago. An ESA50 that I need to fill in and send back within a month. I had a feeling I'd be reassessed soon, but was hoping they would at least wait until my birthday and Christmas were out of the way first. Wishful thinking I guess! When I saw what it was, I became so panicky and tearful. I've been through it all before, and have horrible memories of the Work Capability Assessment and the Work Programme.
This is such a bad time for me to be reassessed. I don't know how I'm going to cope with it to be honest. If you've been following my vlogs, then you'll know that I'm having to talk about some very difficult things in the past, in therapy. This means that I'm struggling as it is. The pressure of being scrutinized and judged for daring to be too ill to work, and the possibility that I could either have my disabilities completely dismissed & found "fit for work" or I will be put in the work related activity group and possibly forced onto the work programme (or something similar), is likely to push me over the edge. I'm going to need a lot of support from my therapist and GP.
I hate the way the ESA letters are worded. They're covered in bold writing; telling you that you may be sanctioned/found fit for work if you don't do this or that. I struggle enough with letters like that, but I live with my parents, so they'd know if I was going into crisis. For a vulnerable person living on their own, the wording of those letters could have such a detrimental impact on their mental health. There is the focus on work being "good for your health" as well; implying that everyone should work, no matter how ill or disabled they are. So right from the start, you feel as if you will be found fit for work regardless.
I'm hoping I can get evidence from my physio, therapist/mental health nurse, and GP; to back up my claim. I know in some areas, GPs won't do supporting letters for ESA claims however. I've not been in this area very long, so have only been registered with this GP for less than a year. I do hope I can get some sort of evidence though.
Flare ups
I've been in more pain, much more exhausted, and more dizzy than usual this past week or so. I think the damper weather must be making me feel worse. I'm due to start my period soon as well, and find that I flare up more easily around this time. I've found it particularly frustrating this time round however. I'm finally having a type of therapy that might actually help, and physiotherapy with a physio who has one of my conditions. I had to cancel both of those appointments this week. I was getting motion sickness, bad dizziness, overheating and getting exhausted after simple things (such as brushing my teeth). I don't want to end up cancelling too many appointments, or I will be discharged. I need that extra support!
All I can do, I guess, is pace myself, rest when I need to (i.e. before I'm completely exhausted), and look after myself better. I wish I could control my illnesses, but I've tried and the best I can do is manage and work round them. Willpower does not cure chronic illnesses.
Monday, 7 November 2016
Bendy Life
Last year, I had an Orthopaedic Assessment for my subluxing left knee . It ended up as an assessment of most of my joints, and I was diagnosed with Hypermobility Syndrome. I was referred on for physiotherapy (mainly for my knee) to strengthen the muscles round the joints and hopefully lessen the chance of subluxations/dislocations. I started physio in the area I lived, but this stopped when I moved out of the area.
There were a lot of things to sort out during & after the move, and my worsening health meant that getting referred for physio near my new home was on the back-burner for a while. I finally got to a point where it felt like a good time to start physio again. I dreaded the idea of having to give my life story to a stranger again; with the worry that my physical difficulties would be underestimated (which felt like the case with my previous physio!)
I had my first physio session last Friday and was very pleased with it! The physio was lovely! She was so understanding, considerate, and she listened to me. It turns out that she has Hypermobility Syndrome too! She examined me and saw how I stood, walked etc. Because I have frequent dislocations, she told me that my Hypermobility Syndrome is severe.
She asked me what I hoped to achieve from these sessions. I said that I would like to have less subluxations and a little more stability in my hips so I could walk a bit more. If I can physically go on a walk (no matter how short) then I have more chance of improving my agoraphobia. At the moment, I'm finding that my physical problems worsen some of my mental health ones.
When talking through (and getting me to try) exercises, she would listen to my concerns and notice if certain exercises were causing more strain/pain than they should. This was so different to the last physio; who implied I simply was reluctant to exercise...
As well as exercises, the physio suggested insole arch supports (as she noticed the arches in my feet are quite low) as well as kinesio tape so that my joints are less likely to pop out while I exercise.
I see her next in a couple of weeks, where I will be trying exercises while wearing kinesio tape. I've never used this before, so am interested to find out if it'll help.
There were a lot of things to sort out during & after the move, and my worsening health meant that getting referred for physio near my new home was on the back-burner for a while. I finally got to a point where it felt like a good time to start physio again. I dreaded the idea of having to give my life story to a stranger again; with the worry that my physical difficulties would be underestimated (which felt like the case with my previous physio!)
I had my first physio session last Friday and was very pleased with it! The physio was lovely! She was so understanding, considerate, and she listened to me. It turns out that she has Hypermobility Syndrome too! She examined me and saw how I stood, walked etc. Because I have frequent dislocations, she told me that my Hypermobility Syndrome is severe.
She asked me what I hoped to achieve from these sessions. I said that I would like to have less subluxations and a little more stability in my hips so I could walk a bit more. If I can physically go on a walk (no matter how short) then I have more chance of improving my agoraphobia. At the moment, I'm finding that my physical problems worsen some of my mental health ones.
When talking through (and getting me to try) exercises, she would listen to my concerns and notice if certain exercises were causing more strain/pain than they should. This was so different to the last physio; who implied I simply was reluctant to exercise...
As well as exercises, the physio suggested insole arch supports (as she noticed the arches in my feet are quite low) as well as kinesio tape so that my joints are less likely to pop out while I exercise.
I see her next in a couple of weeks, where I will be trying exercises while wearing kinesio tape. I've never used this before, so am interested to find out if it'll help.
Tuesday, 1 November 2016
Session 2: Starting Interpersonal Therapy
At the moment, I'm vlogging about my experiences with Interpersonal Therapy. You'll find my Chronic Illness playlist here . Please share and subscribe if you like my videos! I'll be back to blogging very soon, and my next post will be about starting Physiotherapy for my Hypermobility Syndrome. See you soon!
Thursday, 13 October 2016
Quick Announcement
This is just a short post, to let you know that I've now started vlogging! A friend suggested it to me recently and, after umming and ahhing for a while, I finally decided to give it a go. I might use it for little updates or to focus on one topic at a time, I haven't decided yet. I do want to try and post vlogs regularly though. Apart from lots of furbaby videos (and a few random ones) there's an Introduction Vlog on there for now. Go check it out, and subscribe to my Amzie Bear channel if you like it!
I will of course keep blogging here, so stay tuned!
I will of course keep blogging here, so stay tuned!
Monday, 26 September 2016
Let's try this again.
After months and months of avoiding mental health services, and one GP appointment that I got too ill to follow up, I'm finally asking for help again.
It's been a mixture of reasons really. Fibromyalgia flare ups, helping my parents through various things, feeling I don't deserve help, and being too anxious to use the phone (you have to ring up and self refer to the Primary Care team).
It took a breakdown in front of my mum to push me to ask for help. It was mum who got in touch with the GP and then the mental health team to get me to stop avoiding this. I've been getting close to crisis point recently so of course it's important I get some sort of support. I've bottled up so much (and 'coping' by self harming) because I didn't want to worry my parents and I didn't want to bring any attention to myself. I knew it wasn't a healthy thing to do, but I felt that I had to do it.
After a very nervous wait, I had a callback from the Primary Care mental health team earlier today. I was shaking the whole time, but managed to give them the details they needed (contact details, diagnoses, previous therapies, demographic questions etc). They asked if I was suicidal/had plans too, and gave me some helpline numbers. I don't know if I'll manage to ring if I'm in crisis (it's scary enough even on good days!) but at least I know who to contact.
So, the next step is a phone assessment this Wednesday. It's been a while since I've had a mental health assessment, so I'm glad it'll happen even if I'm really nervous about it being over the phone. The person on the phone today was really friendly and patient with me though, and I hope the person I speak with next is the same.
My next post should be much sooner than usual, and a lot longer than this one! I'll be talking about the assessment and what the next step will be.
It's been a mixture of reasons really. Fibromyalgia flare ups, helping my parents through various things, feeling I don't deserve help, and being too anxious to use the phone (you have to ring up and self refer to the Primary Care team).
It took a breakdown in front of my mum to push me to ask for help. It was mum who got in touch with the GP and then the mental health team to get me to stop avoiding this. I've been getting close to crisis point recently so of course it's important I get some sort of support. I've bottled up so much (and 'coping' by self harming) because I didn't want to worry my parents and I didn't want to bring any attention to myself. I knew it wasn't a healthy thing to do, but I felt that I had to do it.
After a very nervous wait, I had a callback from the Primary Care mental health team earlier today. I was shaking the whole time, but managed to give them the details they needed (contact details, diagnoses, previous therapies, demographic questions etc). They asked if I was suicidal/had plans too, and gave me some helpline numbers. I don't know if I'll manage to ring if I'm in crisis (it's scary enough even on good days!) but at least I know who to contact.
So, the next step is a phone assessment this Wednesday. It's been a while since I've had a mental health assessment, so I'm glad it'll happen even if I'm really nervous about it being over the phone. The person on the phone today was really friendly and patient with me though, and I hope the person I speak with next is the same.
My next post should be much sooner than usual, and a lot longer than this one! I'll be talking about the assessment and what the next step will be.
Friday, 29 July 2016
A Review of Fay Farms Rejuvenation Lotion (Sponsored Blog Post)
Disclaimer:
This is a sponsored post. I
have been given this product as part of a product review through the
Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review
remain my own and I was in no way influenced by the company.
My pains have been so bad recently, and noticeably so in my knees. I've been on Tramulief Slow Release (100 mg) for a little while now and, although it really does help & lasts once it kicks in, it doesn't give the quick relief I need for my joints. I also find it doesn't really help with the stiffness either.
I've tried topical treatments in the past and have found no relief whatsoever. A lot of them just give a warming feeling and smell strongly of chemicals. I'd heard of the benefits of CBD (Cannabidiol) oil, but was unsure whether it'd be worth the money. I'd already spent a lot on treatments that didn't work. When I was given the opportunity to try a new lotion containing CBD oil, I (figuratively!) jumped at the chance and straightaway accepted. I am so glad I did! This is my review of Fay Farms Rejuvenation Lotion.
Fay Farms have introduced a new product to their range. Fay Farms Rejuvenation lotion is a very natural product; combining herbs and essential oils for relief of joint and muscular pain. Its ingredients include magnesium, hemp oil, valerian, turmeric, and 200 mg CBD (cannabidiol) oil; which are known for their anti inflammatory and relaxation properties.
Packaging
Fay Farms Rejuvenation Lotion arrived in a fairly large but slim bottle with a pump lid for easy application. It looks very different to other products in my bathroom, so stands out easily. The gold label and beautiful detail on the front give Rejuvenation Lotion a premium look.
The Scent
It has quite a strong, but fairly pleasant smell. Ingredients in this product (such as jojoba and vanilla) are easily identified & give a natural scent to Fay Farms Rejuvenation Lotion. The smell lasts a little longer than I would like, but does eventually fade.
The Feel
This lotion has a lovely thick, creamy texture; which spreads well over the affected area. A sufficient amount of the product can be obtained from one dispensing. The pains in my knees have been particularly bad recently, so I decided to try the product on them for now. It takes longer to absorb than I would like, but does not tend to leave residue on clothes, as far as I have found.
Is it Effective?
Personally, I've found it very helpful! This came as a surprise to me, as topical treatments don't tend to help my pains. I'm very glad I tried it however. It doesn't take too long for the effects to kick in and it happens gradually. I found it relaxed my muscles just enough, and eased the stiffness quite quickly. I'm able to move with a little more ease; which is such a relief. I will be very likely to purchase Fay Farms Rejuvenation Lotion when this bottle runs out.
Give it a try!
If you would like to try Fay Farms Rejuvenation Lotion, you can find it here . You can also find other Fay Farms products on the CBD products page of the Canna Tree House website.
Fay Farms Rejuvenation Lotion page - https://www.cannatreehouse.com/products/the-fay-farm-rejuvenation-cbd-lotion
Canna Tree House CBD products page - https://www.cannatreehouse.com/collections/cbd-products
Monday, 9 May 2016
"If you can do X, then you can do Y"
The above phrase, and those similar to it, really piss me off. Usually X and Y are quite different things, and the assumption that the ability to do X makes Y possible too, is so simplistic and just plain inaccurate. This kind of belief seems to form the basis of disability assessments, and ignores how different situations lead to different responses and abilities from the person (trying to) cope with them.
Here's a really obvious example : "If you can type on social media, then you can work". Yes, typing is a task done in many jobs, but being able to type a few words in response to acquaintances online isn't the same as concentrating for hours on tasks involving typing, and meeting the targets that employees are often set. In such a job, it's likely you'll need to communicate with other members of staff, fetch and carry things, attend meetings, and use the phone amongst other tasks. So no. It's not just typing.
Another one would be the assumption that, if you can cope with one group situation, you can cope with every group situation. Again, other things need to be considered. How big is the group? How far away is the session? Can the person always get transport there/if they need someone to accompany them? Is the group situation a formal or informal one? Can the person leave if/when they need? What facilities are there (toilets, drinks facilities, disabled facilities etc).
I have various anxiety disorders that can severely affect what I'm able to do. Different environments and situations can have a big impact on me as well. On a good day, I may be able to meet a couple of friends in town for coffee (as long as I can get transport from my dad or one of my friends). It has to be close friends who understand that I struggle, and are patient with me. They have to know that I need to be in the quieter areas of town, have places to sit down, and they need to be ok with it if I'm struggling too much and need to go home.
This doesn't mean I could cope with *any* group situation. A while back, I was referred to the Expert Patients Programme to help me manage the combination of mental and physical problems that I have. The content of the programme sounded interesting, and at the time I was feeling a bit lost as to how to cope with everything. Unfortunately, the thing that stopped me taking part was the fact that it was a group programme. I knew that everyone there would be in a similar boat to me, and that the staff would be understanding if I needed to leave, but this didn't stop me from being far too anxious to go.
I understand the need to apply things to different situations, but there are so many other things to consider. For lack of better phrasing, if someone can do X, then that only shows that they can do X. Y may be impossible for them. Please believe us, even if you can't fully understand the complexities of our health problems.
Here's a really obvious example : "If you can type on social media, then you can work". Yes, typing is a task done in many jobs, but being able to type a few words in response to acquaintances online isn't the same as concentrating for hours on tasks involving typing, and meeting the targets that employees are often set. In such a job, it's likely you'll need to communicate with other members of staff, fetch and carry things, attend meetings, and use the phone amongst other tasks. So no. It's not just typing.
Another one would be the assumption that, if you can cope with one group situation, you can cope with every group situation. Again, other things need to be considered. How big is the group? How far away is the session? Can the person always get transport there/if they need someone to accompany them? Is the group situation a formal or informal one? Can the person leave if/when they need? What facilities are there (toilets, drinks facilities, disabled facilities etc).
I have various anxiety disorders that can severely affect what I'm able to do. Different environments and situations can have a big impact on me as well. On a good day, I may be able to meet a couple of friends in town for coffee (as long as I can get transport from my dad or one of my friends). It has to be close friends who understand that I struggle, and are patient with me. They have to know that I need to be in the quieter areas of town, have places to sit down, and they need to be ok with it if I'm struggling too much and need to go home.
This doesn't mean I could cope with *any* group situation. A while back, I was referred to the Expert Patients Programme to help me manage the combination of mental and physical problems that I have. The content of the programme sounded interesting, and at the time I was feeling a bit lost as to how to cope with everything. Unfortunately, the thing that stopped me taking part was the fact that it was a group programme. I knew that everyone there would be in a similar boat to me, and that the staff would be understanding if I needed to leave, but this didn't stop me from being far too anxious to go.
I understand the need to apply things to different situations, but there are so many other things to consider. For lack of better phrasing, if someone can do X, then that only shows that they can do X. Y may be impossible for them. Please believe us, even if you can't fully understand the complexities of our health problems.
Friday, 26 February 2016
A Review of MedNexus: A more accurate search engine for medical information.
MedNexus is a search engine; specifically designed for medical information. It began as a website only accessible for medical professionals, but has now been made available for patients. What sets it apart from other search engines (Google, for instance) is that it only displays accurate and reliable information. The user does not need to sift through pages of irrelevant information in order to get the answers they need. As a chronic illness blogger, I like to keep myself informed on various things to do with the medical conditions that I talk about; whether it is how the condition is diagnosed, treatments available, new research developments, or anything else that may be useful for myself and my readers. I decided to test the MedNexus website, to see how well it delivered on its promises.
Home page
The layout of MedNexus' home page is a very clear one; with easy to read sans serif font. The search box is right in the middle of the page, and I find my eyes are drawn to it straightaway. If you want to go straight to common, chronic, seasonal, or recently searched images, suggestions are available on the same page. They are clearly laid out and organised into columns.
As you scroll down, there's a short description of what the website does; i.e. its purpose. It also states why it is the ideal search engine for medical information specifically.
"For all levels of expertise". This quote implies that there are different ways you can search; depending on what you need to find. It shows how this search engine can work for you; regardless of your level of expertise.
The information on the homepage is laid out in a clear, concise way. It is separated into small, easy to read paragraphs and columns; with a clear subheading for each.
Testing the search facility
I decided to try out a general search then a more specific search, to see how easy it would be to get the exact information I desired. As you may know, one of my medical conditions is Fibromyalgia. I wanted to see how accurate the results would be, if I searched for information on this.
General search
To start off the search, I simply typed in "Fibromyalgia". I found that as I began to type, a drop down menu was displayed; giving search suggestions. Some of these suggestions included "What is Fibromyalgia?", and "How do you treat Fibromyalgia?". I found this a useful feature, as it allowed me to narrow down my search even more; so was more likely to result in quickly finding the answer to a particular question about the condition.
The results could be ordered by relevance or most recent. They are also categorized into "Health topics", "Published research", and "Forum discussions".
Specific search
For this search, I typed in "What are the risk factors for Fibromyalgia?". The same categories as the general search were displayed in the results. The first result I came across was entitled "Fibromyalgia causes"
Looking around the results page, I noticed the left hand side displayed sections entitled "Common risk factors", "Previous searches", and "Explained". I found that these broke down the results and explained them in a less scientific way.
Other links
Other links available on each page include "Home", "About", "FAQ", "Blog", "Privacy", "TOS", "Contact", and links to MedNexus' Facebook and Twitter pages.
I was disappointed to find that when the Facebook or Twitter link is clicked, it opens in the same tab. This could be an inconvenience for people who want to keep a particular page open on the main site. It would be better if these links opened in a new tab or window by default.
Overview
Overall, I find this search engine a very useful one. It cuts down the time taken to search for the information I need, and I do not have to pore through medical jargon in order to obtain accurate and informative answers. On the whole, this appears to be a fairly accessible website; in terms of its clear layout, the font it uses, and how it can be navigated. I am very likely to use MedNexus in future; as I feel it meets my needs much better than other search engines.
What do you think?
MedNexus are looking for feedback, and suggestions on how they can improve. They would like you to complete this short survey to share your experiences on this. I recommend giving this website a go, and seeing if it works for you!
Resources
1. MedNexus Homepage: http://www.mednexus.io/
2. MedNexus Facebook page: https://www.facebook.com/mednexus.io
3. MedNexus Twitter page: https://twitter.com/med_nexus
4. MedNexus Survey: https://www.surveymonkey.com/r/2D5ZR58
Home page
The layout of MedNexus' home page is a very clear one; with easy to read sans serif font. The search box is right in the middle of the page, and I find my eyes are drawn to it straightaway. If you want to go straight to common, chronic, seasonal, or recently searched images, suggestions are available on the same page. They are clearly laid out and organised into columns.
As you scroll down, there's a short description of what the website does; i.e. its purpose. It also states why it is the ideal search engine for medical information specifically.
"For all levels of expertise". This quote implies that there are different ways you can search; depending on what you need to find. It shows how this search engine can work for you; regardless of your level of expertise.
The information on the homepage is laid out in a clear, concise way. It is separated into small, easy to read paragraphs and columns; with a clear subheading for each.
Testing the search facility
I decided to try out a general search then a more specific search, to see how easy it would be to get the exact information I desired. As you may know, one of my medical conditions is Fibromyalgia. I wanted to see how accurate the results would be, if I searched for information on this.
General search
To start off the search, I simply typed in "Fibromyalgia". I found that as I began to type, a drop down menu was displayed; giving search suggestions. Some of these suggestions included "What is Fibromyalgia?", and "How do you treat Fibromyalgia?". I found this a useful feature, as it allowed me to narrow down my search even more; so was more likely to result in quickly finding the answer to a particular question about the condition.
The results could be ordered by relevance or most recent. They are also categorized into "Health topics", "Published research", and "Forum discussions".
Specific search
For this search, I typed in "What are the risk factors for Fibromyalgia?". The same categories as the general search were displayed in the results. The first result I came across was entitled "Fibromyalgia causes"
Looking around the results page, I noticed the left hand side displayed sections entitled "Common risk factors", "Previous searches", and "Explained". I found that these broke down the results and explained them in a less scientific way.
Other links
Other links available on each page include "Home", "About", "FAQ", "Blog", "Privacy", "TOS", "Contact", and links to MedNexus' Facebook and Twitter pages.
I was disappointed to find that when the Facebook or Twitter link is clicked, it opens in the same tab. This could be an inconvenience for people who want to keep a particular page open on the main site. It would be better if these links opened in a new tab or window by default.
Overview
Overall, I find this search engine a very useful one. It cuts down the time taken to search for the information I need, and I do not have to pore through medical jargon in order to obtain accurate and informative answers. On the whole, this appears to be a fairly accessible website; in terms of its clear layout, the font it uses, and how it can be navigated. I am very likely to use MedNexus in future; as I feel it meets my needs much better than other search engines.
What do you think?
MedNexus are looking for feedback, and suggestions on how they can improve. They would like you to complete this short survey to share your experiences on this. I recommend giving this website a go, and seeing if it works for you!
Resources
1. MedNexus Homepage: http://www.mednexus.io/
2. MedNexus Facebook page: https://www.facebook.com/mednexus.io
3. MedNexus Twitter page: https://twitter.com/med_nexus
4. MedNexus Survey: https://www.surveymonkey.com/r/2D5ZR58
Subscribe to:
Posts (Atom)