(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.
Showing posts with label Chronic pain. Show all posts
Showing posts with label Chronic pain. Show all posts
Friday, 24 May 2019
What Influences Me? : Counselling Session 4
Labels:
Chronic illness,
Chronic pain,
control,
death,
Depression,
fertility,
Fibromyalgia,
Friendship,
grief,
grieving,
OCD,
personality,
tramadol
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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/
Labels:
Abroad,
Agoraphobia,
Anxiety,
blogging,
Chronic Fatigue,
Chronic illness,
Chronic pain,
Depression,
Disability,
Distractions,
Fibromyalgia,
health,
Holidays,
Mental health,
Social anxiety,
Spoonie,
Vacation
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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:// chronicillnessbloggers.us12. list-manage1.com/track/click? u=f454aec32953c83c5884455f5& id=cb55a11487&e=0c4f860658
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/
Labels:
Anxiety,
blogging,
Chronic illness,
Chronic pain,
Disability,
Fibromyalgia,
health,
Mental health,
product review,
Spoonie
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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!
Labels:
Anxiety,
Chronic Fatigue,
Chronic illness,
Chronic pain,
Disability,
Fatigue,
Fibromyalgia,
Joint Hypermobility Syndrome,
Spoonie
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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
Labels:
Chronic illness,
Chronic pain,
Disability,
Fibromyalgia,
Hip Bursitis,
Joint Hypermobility Syndrome,
Physiotherapy,
Ultrasound Therapy
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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.
Labels:
Ableism,
assessment,
benefits,
blogging,
Chronic illness,
Chronic pain,
Disablism,
Employment and Support Allowance,
ESA
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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.
Labels:
Agoraphobia,
Anxiety,
Chronic illness,
Chronic pain,
Depression,
Fatigue,
Fibromyalgia,
Hypermobility,
Joint Hypermobility Syndrome,
Mental health,
Obsessive Compulsive Disorder,
OCD
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
Friday, 2 December 2016
Penultimate Physiotherapy Appointment???
I did mean to write this post last Friday, but I've been struggling a lot with severe fatigue. I've not been able to get much done at all, because I've been falling asleep in the day time, and it has been very difficult to rouse me and keep me awake. I did see the GP about this recently and had some blood tests (only for B12, Folates, and Full Blood Count though?). My B12 came back low again, but the GP wants to see if I can increase it by altering my diet. If in three months it's still low, I'll be prescribed B12 tablets. I'm not completely happy with this, as my Vitamin D tends to frequently be low, and TSH tends to be high, (and neither were tested) but I guess I can wait three months and ask for more tests if I'm still having severe fatigue.
Ok, onto my physio appointment! Please read my recent post Bendy Life if you want to catch up.
My second appointment was a surprisingly quick one! The physiotherapist asked how I'd been getting on with my exercises and if I'd bought/been using the insole arch supports. I said that I'd been coping well with the exercises (with not too much pain during) but hadn't found any real improvement with my dislocating left knee. She decided to make one of the exercises slightly harder, in the hopes that it will do more to strengthen my muscles. It did hurt a bit more, when I tried it out, but not an unreasonable amount *insert cheesy joke about No Pain, No Gain here*
She also tried me with Kinesiology tape. At first, she wanted to use more conventional tape (I'm not sure of the proper name for this) but I told her about how easily my skin rips and bruises with tape such as micropore. She said the conventional tape definitely wouldn't suit me then! The Kinesiology tape suited me very well, and I've ordered some to use at home or on extra bendy days. She showed me how to apply the tape around and under my kneecap. I found it really helped support my knee, and it didn't constantly feel as if it would dislocate. Believe me, this felt like such a relief! Having to think about every step you make, in order to avoid subluxations/dislocations, is not fun!
The session pretty much ended after this! I was very surprised, as the last one was so much longer. The physiotherapist also asked if I wanted another appointment. It seemed that she wanted this to be the last session; which I found really surprising! If I remember correctly, at my Orthopaedic assessment, it was recommended that I have physiotherapy long term. I did ask for another appointment after Christmas; to give me time to see if there's any improvement. I think this might be my last appointment though! I was too taken aback to really say anything about that, but I went home very confused. I'd have understood if I had noticed a lot of improvement, but hardly a thing had changed since my last appointment!
Have you had a very short programme of physiotherapy, when you were under the impression you'd be having a long term one? Is there any reason why? Please comment below.
Resources
1. https://amysmysteryillness.blogspot.co.uk/2016/11/flare-ups-frustration-and-fear.html
Ok, onto my physio appointment! Please read my recent post Bendy Life if you want to catch up.
My second appointment was a surprisingly quick one! The physiotherapist asked how I'd been getting on with my exercises and if I'd bought/been using the insole arch supports. I said that I'd been coping well with the exercises (with not too much pain during) but hadn't found any real improvement with my dislocating left knee. She decided to make one of the exercises slightly harder, in the hopes that it will do more to strengthen my muscles. It did hurt a bit more, when I tried it out, but not an unreasonable amount *insert cheesy joke about No Pain, No Gain here*
She also tried me with Kinesiology tape. At first, she wanted to use more conventional tape (I'm not sure of the proper name for this) but I told her about how easily my skin rips and bruises with tape such as micropore. She said the conventional tape definitely wouldn't suit me then! The Kinesiology tape suited me very well, and I've ordered some to use at home or on extra bendy days. She showed me how to apply the tape around and under my kneecap. I found it really helped support my knee, and it didn't constantly feel as if it would dislocate. Believe me, this felt like such a relief! Having to think about every step you make, in order to avoid subluxations/dislocations, is not fun!
The session pretty much ended after this! I was very surprised, as the last one was so much longer. The physiotherapist also asked if I wanted another appointment. It seemed that she wanted this to be the last session; which I found really surprising! If I remember correctly, at my Orthopaedic assessment, it was recommended that I have physiotherapy long term. I did ask for another appointment after Christmas; to give me time to see if there's any improvement. I think this might be my last appointment though! I was too taken aback to really say anything about that, but I went home very confused. I'd have understood if I had noticed a lot of improvement, but hardly a thing had changed since my last appointment!
Have you had a very short programme of physiotherapy, when you were under the impression you'd be having a long term one? Is there any reason why? Please comment below.
Resources
1. https://amysmysteryillness.blogspot.co.uk/2016/11/flare-ups-frustration-and-fear.html
Labels:
Chronic Fatigue,
Chronic pain,
Disability,
Hypermobility,
Insoles,
Joint Hypermobility Syndrome,
Kinesiology tape,
Physiotherapy,
Spoonie
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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.
Labels:
Anxiety,
assessment,
benefits,
Chronic illness,
Chronic pain,
Depression,
Disability,
Fibromyalgia,
Joint Hypermobility Syndrome,
Mental health,
Physiotherapy,
Spoonie
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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
Labels:
CBD oil,
Chronic illness,
Chronic pain,
Fay Farms,
Fibromyalgia,
Joint Hypermobility Syndrome,
product review,
Spoonie
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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
Labels:
Chronic illness,
Chronic pain,
Medical,
MedNexus,
product review,
Spoonie,
Websites
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
Thursday, 19 November 2015
Exhausted
After months of trying to contact our landlord to get the tiles sorted in our bathroom (they were cracked and falling off), he finally sent someone round! I knew it'd cause some disruption to my sleep pattern, but I didn't expect it to be quite so bad (silly me).
Over the past week or so, I've had to get up and dressed before 8.30am each day. I've not been getting to sleep until 5am on average, so have been struggling so much on so little sleep. I decided I'd get up and dressed, take my meds early and maybe try to have breakfast before going back to sleep for a few more hours. It's been difficult, because of the hammering, drilling etc noises in the bathroom, and my anxiety about having a stranger in the house. I've been drifting in and out of sleep, and have felt even more exhausted than usual. I feel like I've lost so many days, because I've just not had the energy to do much at all. Even conversation has been too much for me, as I've not been able to process well what is being said to me. I doubt I've made much sense when I've replied either.
Thankfully today has (hopefully!) been the last day of this disruption, so I'm hoping I'll be able to catch up on sleep soon. I never feel rested after sleeping (the joys of Fibromyalgia!) but having my, already terrible, sleeping pattern being disrupted, puts me in a whole other level of exhaustion.
Just when you think a symptom (such as fatigue) can't get any worse, it always manages to surprise you!
Over the past week or so, I've had to get up and dressed before 8.30am each day. I've not been getting to sleep until 5am on average, so have been struggling so much on so little sleep. I decided I'd get up and dressed, take my meds early and maybe try to have breakfast before going back to sleep for a few more hours. It's been difficult, because of the hammering, drilling etc noises in the bathroom, and my anxiety about having a stranger in the house. I've been drifting in and out of sleep, and have felt even more exhausted than usual. I feel like I've lost so many days, because I've just not had the energy to do much at all. Even conversation has been too much for me, as I've not been able to process well what is being said to me. I doubt I've made much sense when I've replied either.
Thankfully today has (hopefully!) been the last day of this disruption, so I'm hoping I'll be able to catch up on sleep soon. I never feel rested after sleeping (the joys of Fibromyalgia!) but having my, already terrible, sleeping pattern being disrupted, puts me in a whole other level of exhaustion.
Just when you think a symptom (such as fatigue) can't get any worse, it always manages to surprise you!
Labels:
Anxiety,
Chronic Fatigue,
Chronic illness,
Chronic pain,
Fatigue,
Fibromyalgia,
Sleep problems,
Spoonie
I mainly blog about my journey with chronic physical and mental illness, as well as experiences with, & thoughts on, financial & employment support in the UK.
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