Showing posts with label Disability. Show all posts
Showing posts with label Disability. Show all posts

Wednesday, 26 June 2019

Smear Tests - My Experience

(TW: details of a medical test)

I've been thinking about writing this blog post about my experience having a smear test. It is mostly targeted at people who are having/thinking about having their first test and they're not completely sure what to expect. There's information online about smear tests (aka Cervical Screening), on websites such as the NHS website. These tell you what one is, what it tests for, what will happen, when the results will come through, and what each result means. I do not feel by any means this blog post is something to read instead, but I find personal accounts of these tests can be a good supplement to "official" information. Some of what I say will be similar to the information on websites such as the NHS, but I hope to give more of a personal touch to my account.

(Disclaimer: My experience is by no means a universal one, and I do not want to insinuate that it is. People having a smear test may have very different needs to myself, for example, due to disability. Although I am disabled, my physical difficulties do not prevent me from getting onto the couch, in the examination room, unaided. I also use the term "people" rather than "women" as there are many genders where the person may have a cervix, and I would like to be as inclusive as possible.)

Yesterday was the second time in about 6 years that I have had a smear test/cervical screening. I had finished my period the week before, but was finding that I still had pains particularly round my cervix area. It was not debilitating, but was painful enough that it stopped me in my tracks for a minute or so. Because of this, I was nervous about the test and what it might find. I'm also very self conscious about my body, so was very aware of myself when undressing my bottom half.

I only had to wait a few minutes, before being called through by the nurse. She was someone I had seen (for other reasons) a few times before, so that put me more at ease. She asked me how I'd been recently, so I mentioned the throbbing cervix pain. I found that I played it down a bit (by saying it only happened now and again) possibly due to nerves. She took note of what I said, took me seriously, and was compassionate.

She also asked me some questions about my period ( the approximate date my latest one finished, whether it was regular, how heavy the bleeding was, how bad pains were etc) as well as the contraceptive pill I was on, any side effects etc. I told her I've been on Microgynon for a while, I had no side effects, and on this pill my periods are regular and usually not too heavy. My period pain is bad, but not agonising.

The nurse explained what would happen next. I was asked to undress my bottom half, lie down on the couch, bend my knees up then out; putting the soles of my feet together. I found little difficulty with getting onto the couch, as it was at a comfortable level (around hip level). I told her my hips might sublux in this position, as they are very hypermobile, but thankfully they stayed in place. She then explained what she would do next, before inserting a speculum into my vagina and opening it slowly, in order to gain access to my cervix.

It turned out that my cervix was higher up than normal, so a longer speculum was needed. (but the nurse reassured me this was nothing to worry about). She inserted the longer speculum (after removing the shorter one of course!) before opening it and inserting a thin instrument to take a sample from around my cervix. Due to my concerns about the pain I'd experienced after my period had finished, she took a larger sample than usual. She wanted to ensure that there was enough of a sample for thorough testing, to be on the safe side.

She told me that the outer and inner parts of my vagina did not look red or sore, and she wasn't concerned about them right now, but we'd see how the results are.

I found this second test much less uncomfortable than the first test I'd had. The thing I noticed most was the insertion of the speculum. I could feel the sample being taken, but it was barely uncomfortable at all, only lasted a few seconds, and I felt no pain.

Throughout the test, the nurse checked I was feeling alright, and she explained everything she was doing. I felt very at ease to be honest. The test itself only took about 5 minutes, and the nurse checked I was alright and didn't have any concerns or questions afterwards. I was quite dizzy after standing up from lying down, so I sat down to dress, but other than that, I was ok. She also told me that there may be some light bleeding and/or mild stomach pain later that day. The results of the test will be sent to me in about 4 weeks' time. Lastly, she said that if I had any abnormal heavy bleeding, or severe pain around my stomach, vaginal etc areas, to contact the surgery straight away.

I found my experience of this test, a very positive one, with a considerate nurse. I do hope your test, (whether it's your first one or your 10th one!) goes just as well.

Tuesday, 20 March 2018

The Big Meeting

A couple of weeks ago, a meeting was set up to discuss concerns about my nan, and the needs that she has. Nan insisted on being present at that meeting.

Myself, my parents, and some of my uncles were also present. Luckily, we had time to cover one topic out of earshot of my nan. This topic was her mental health and capacity.

Over the past year or so, some family members and I have started to notice some changes in Nan's personality, memory, mood, and ability to process things. She seems very depressed as well as argumentative and verbally aggressive at times. She is finding it hard to follow conversations and often forgets things or mixes things up. She has trouble organising her medication. She does not cope well with bright lights or any kind of noise, and often complains of her head thumping. She doesn't seem to realise how much help she needs either. There's probably more that I can't think of right now, but these signs and symptoms are definitely worsening.

I explained all of this to the staff present (namely a doctor, an occupational therapist, a social worker, and a discharge nurse) and the doctor said he would arrange for Nan to have a cognitive assessment. I think the nurses involved in her care had noticed certain things themselves.

Straight after this, my nan came into the room. She basically lectured us on speaking about her behind her back. I wasn't sure what to say to this as I feel conflicted about it. I don't like to speak about people behind their back, but there are important things to be said that might not have been put across properly if Nan had been there. She tends to speak over people and doesn't allow them to finish what they say, especially if she disagrees with it. We needed to be able to voice some of our concerns in a way that would allow the hospital staff to understand.

Once Nan had (finally) sat down, other concerns were voiced by the present members of family. These included her struggles with sleeping in bed (she sleeps in her recliner chair as she cannot lift her legs to get into bed), as well as struggles organising medication, needing night visits from carers (but these not being available), problems with incontinence, problems controlling her type 2 diabetes, the help she needs to shower, and other help she may need since having a major operation (a full hip replacement).

Naturally, my nan disputed a lot of things and we had to explain to her why we had these concerns. The discharge nurse, occupational therapist, and social worker tried their best to explain too. The occupational therapist had a list of equipment she could order to make Nan's life a little easier. This included a shower chair with a back, a commode in her bedroom, a grabber (as she is not allowed to bend from the hip more than 90 degrees), a perching stool, a key safe, and equipment to help her lift her legs. Nan rejected a lot of this equipment, saying she didn't need it, but she did agree to the shower chair, perching stool for the kitchen, and key safe.

The next topic was help with care. The occupational therapist explained that Nan would have visits 4 times a day, for up to 6 weeks, from the Enablement Team. This is a team of carers who would observe and encourage Nan to do what she can for herself, and help her with things she cannot do. This help is free, and is designed to rehabilitate Nan so that she is able (with the help of carers) to look after herself in the community. Nan didn't see the point in this, as she believed the carers at her care home would do everything whenever she asked. This is not the case however, as the care home she lives in is vastly understaffed, and does not provide night visits. The Enablement Team unfortunately do not offer night care either, so would see my nan first in the morning.

Once everything had been agreed and clarified, the meeting came to an end. The family were left for a few minutes, to discuss things amongst ourselves, and this included explaining things to Nan again. She seemed to accept what was going to happen, if reluctantly.

--------------------------------

Yesterday, Nan was discharged from hospital, and brought home by hospital transport. We were told the transport would arrive at 12, and it'd be around 12.30 that she would be home. What actually happened was the transport arrived at 1, and dropped Nan home around 3! My dad was left waiting 3 hours to let the transport staff (and my nan) in the flat. Luckily, she'd had lunch before being discharged, so didn't complain about that. The Enablement Team arrived a couple of hours after that. I am waiting to hear how she is getting on with this team, so I will keep you posted!

Thursday, 1 March 2018

Family, Social Services, and a Whole Load of Stress

I'm sorry for my silence recently! I've had a lot going on, mainly with family and illness. I will try to explain this in a somewhat coherent manner.

A couple of months ago, my Nan went into hospital for a total hip replacement operation. She has other issues, such as Arthritis all over (we're not sure which type), a worn out total replacement on her other hip, Type 2 Diabetes, double incontinence, memory problems and could potentially have the onset of Dementia. The nurse at the hospital originally said Nan would be in for 7 days, but this was before all the other issues were noted.

The operation went as planned, but due to these other issues, she is still in hospital. As well as all of this, she contracted Norovirus, so has had to stay in another 2 weeks regardless. Despite extra infection control measures, visiting members of the family (including myself and my parents) caught Norovirus too! Because of this, we've not been able to visit Nan for over a week, which is a worry as she does not cope well by herself. She doesn't mix well with other patients and will only "socialise" (to use the word very loosely) with family members.

Another issue is the care home she lives in. It does not have an adjustable bed, so Nan spends 24 hours a day in her adjustable chair (bought by herself years ago). She sleeps in that chair, badly, and due to such poor mobility, is almost completely sedentary.

She has carers in, but she has cut their hours down to the bone, as she thinks struggling on her own (even with her risk of falls) is acceptable. The care she does get is not adequate in the slightest. Before she went into hospital, she was getting care for 15-30 minutes in the morning; which mainly consisted of a very quick wash from her chair. She did have carers come to take her laundry now and again, but clothes etc often came back still dirty. It appears she is also paying for more care than she is actually receiving.

The care home itself is vastly understaffed. At night, you are lucky to get two care assistants and in the daytime there are often only two carers covering the whole home (which has quite a few flats as well as bungalows attached to the home). Nan needs two carers to help her to shower, but the home is unable to provide this, so Nan's hygiene is unfortunately quite poor.

Onto Social Services! Well, they have been involved to assess Nan's needs and whether the care home is suitable for her anymore. My family have agreed that it is now a nursing home that Nan needs because of the amount of personal help she requires. Dad has been speaking to a social worker, but despite all of our concerns, the social worker is under the impression that the care home will be able to provide the levels of care required. This is something we struggle to believe but it looks as if we'll have to trust the care home to do this, and if it is not done then we are going to have to find a nursing home for Nan.

In the meantime, next week there will be a meeting with the care home manager and an occupational therapist (as far as we're aware?) at Nan's flat, to see what other equipment she needs before being discharged. There will also be a bigger meeting with whichever relatives are available, at the hospital, to come to an agreement as to what Nan needs and whether she will be ready to be discharged soon.
One of my uncles does have the legal right to invoke Power of Attorney, so we need to discuss whether this is something that needs to be done yet.

We want her to be happy, but we also want her to be safe. It is very difficult and has caused arguments as Nan is not good with change and is very home sick. I will do another post once everything is finalised.

Sunday, 31 December 2017

Self Care New Year's Resolutions

The end of a year can be very difficult for many people; bringing up mixed emotions and placing expectations on us to think over the past year and make resolutions for the new year.

I find resolutions difficult to make/stick to, and the guilt and failure I feel when I don't stick to those resolutions can be very damaging for my mental health. Mental health problems, such as Depression include symptoms such as guilt and feeling like a failure, so another dose of that is definitely not welcome! I have general aims I'd like to meet, but no strict resolutions. I decided to put them here, in case they may be helpful for you. Of course, you can tailor them to your abilities/what you feel able to cope with!

1. Be kinder to myself.  Specifically, I want to try not to say such horrible things about myself and focus on the more positive things I can find. I can't be all bad, right?!

2. Do my best to set boundaries. If I am not comfortable with something, it's ok to say no! If I am finding a friendship is becoming toxic, it is ok to step away and even end that friendship if I feel able to.

3. Stay connected to loved ones. I am terrible at starting conversations. I know I expect people to talk to me first, and I feel very alone if no one does even for just a day. I want to take that step and say hello to someone first.

4. Let friends/family know if things aren't going well. I don't need to bottle up my physical or mental health problems. If I'm in pain, it's ok to say! If I'm feeling down, it's also ok to say! That bit of support I hopefully get in return can really help my mood.

5. Take time for myself. Although I shouldn't isolate, it's ok to take some time out for myself. Being round people can be exhausting and overwhelming, so it is a good idea to have that time and space for myself.

6. Do a nice thing for myself every day. This could be watching a movie I like, playing a game, treating myself to a favourite snack, or putting on makeup and taking a few selfies! Whatever I consider a positive, mood lifting thing counts.

7. Stay hydrated! I know I don't drink enough water, so I often try to aim to remedy that. Apart from other drinks, I manage half to a whole 500ml bottle a day. I want to double that.

8. Try not to put too much pressure on myself. There's quite a few resolutions here, but I need to remember that these aren't set in stone. They are just guidelines, suggestions even. If I only manage one or two next year, that's fine! I'm not a failure if I can't manage to meet all of the above.

Are you setting any resolutions for 2018? Comment below with your suggestions!

Whatever you do, I hope next year is the best year so far for you. See you then!

Sunday, 10 December 2017

Please Help my Friend with his Independence!

I have a close friend called Daryl, who is one of the kindest, most supportive and most generous people I've ever known. He volunteers, does a lot for disability sports and manages a charity that helps get disabled people into sport.

He does all this, whilst living with Marfan Syndrome and Epilepsy. He needs more support than he's getting right now; which is why I am asking for your help. Daryl lives with his brother, and they are both wheelchair users. They have been living in a bungalow which is not suitable for their needs. It is not adapted and what they really need is to be able to move into a bungalow that has been specially adapted. Daryl also needs a specialist wheelchair, so that he is able to move about freely whilst using the strength that he has left.

This, of course, comes at quite a cost, so he has had to set up a fundraiser. His target is £9000 and he has raised £1505 so far. He really needs as many people as possible to donate and share so that he can reach his target as soon as possible. This really is a life-changing amount for him and if you could donate just £5, it would really really help.

I've embedded the link to his fundraiser below. Please donate what you can, and share far and wide! I know he will appreciate this so so much.


(If the above link doesn't work, then please follow the following link to access Daryl's fundraiser: https://www.gofundme.com/funddaryl )

Thank you so much!

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.

  • 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://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/


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

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.





Monday, 13 March 2017

Mental Health Questions Asked at Work Capability Assessments

(TW: Suicide)

Since my first Work Capability Assessment, my mental health has definitely declined. Throughout the process for claiming Employment and Support Allowance, claimants are treated as if they are faking/embellishing their disabilities. Letters from GPs, specialists, therapists etc are given little or no consideration in deciding whether someone is "fit for work", "fit for work related activity" or not fit for either.

There's a lot of pressure from filling in lengthy forms, gathering evidence (in the hope it will be considered), sending sick notes in on time, sending assessment forms in on time, being able to explain your disabilities to an assessor & hope they will not twist or completely disregard your words. This is all before a decision has been given, and already it is not surprising that someone's mental health will suffer.

A particular issue with Work Capability Assessments is how the assessor asks mental health-based questions; primarily suicide-based ones. Claimants are asked questions such as; "Have you ever tried to harm yourself or take your own life or needed to go to hospital?"¹, "do you have any intentions or plans to hurt yourself currently?"², and "what is it that stops you from acting on the thoughts that you have?"³ These questions are asked in a hostile environment; where the claimant is observed right from the moment they arrive in the car park of the assessment centre. To be asked such personal questions in that context is extremely distressing and has led to worsening of people's health conditions.

At my first Work Capability Assessment, I was asked if I have had thoughts of suicide, why I had those thoughts, whether I had attempted suicide, and what stopped me from attempting. It took a while for me to really open up about my suicidal thoughts to my own therapist, so being asked those questions so brazenly, by a stranger no less, was very distressing. I found it very hard to answer, and I burst into tears as I was made to think about my darkest times. The assessor was barely sympathetic, and was more interested in getting me to answer these questions.

Maximus has been criticised for the types of suicide-based questions they ask claimants, but their response has been that "Every healthcare professional we employ is trained to ask people with a mental health condition a series of clinical questions to assess how their condition affects their daily lives."

A spokesperson for the Department for Work and Pensions (DWP) said "If an individual has mental health issues or there is an indication of suicidal thoughts or intentions, this will be given careful and sensitive exploration to establish the circumstances"

According to a Freedom of Information request in 2014 (I haven't been able to find anything more recent unfortunately), WCA assessors get approximately 17 days' training if they are nurses or physiotherapists, and less than 17 days if they are doctors. I've looked through the PDFs released as part of the response to the request, & it appears that actual mental health training is only covered in just over 4 of those days for nurses, 7 days (including overviews of some mental health conditions) for physiotherapists, and just 2 days for doctors.

The British Association for Counselling and Psychotherapy (BACP) have ethical frameworks for working with suicidal clients. According to this, factors such as the following determine the best way of approaching the topic of suicide and what action to take:

  • The context in which therapy is taking place
  • The relationship with the client
  • The boundaries of confidentiality agreed
  • The confidence of the practitioner to explore the meaning of suicide

In the Risk Factors section of the BACP ethical framework document, it is stated that "Practitioners need to be aware of factors that might suggest their client is in a high-risk category" (for acting on suicidal thoughts). This doesn't mean that those in statistically non-high risk categories are unlikely to carry out any plans, but gives a guideline that can determine "the dialogue that then needs to take place with the client". Sources of information on high-risk category clients can also provide vital tools that support risk assessments. 

When exploring how to word questions based around suicidal thoughts & plans, the ethical framework document says "The wording of such questions is important and needs to be treated sensitively. Much will depend upon the setting in which the therapy takes place, the age, understanding, or emotional capacity of the client, and the individual approach of the practitioner" "It is important for practitioners to think about how they might ask a client about suicide. However, best practice suggests asking clearly, openly, and empathically"

This document goes on to explain that it is also important to explore protective factors with the client, and encourage them to use those support networks etc. If the client is at high risk of attempting suicide then specialist mental health services may need to be involved. 

And this is all within a therapeutic setting. A work capability assessment is by no means a therapeutic setting, & the vital resources for dealing with suicide risk are not there; which makes approaching the topic of suicide with the claimant potentially very risky. This could quite easily lead to the worsening of suicidal thoughts and even plans. As for the discussion of protective factors, this is only very briefly touched upon in Work Capability Assessments, so is very unlikely to counteract the impact of asking a claimant (for e.g.) if they have considered suicide, and what methods they would use/have used. If risk of suicide needs to be explored, as part of someone's assessment, surely the healthcare professionals involved in the monitoring/treatment of their mental health (therapists, psychiatrists, GPs even) should be contacted? This could also determine whether a face to face assessment would be necessary, or whether it would be likely to cause a significant deterioration in the claimant's mental health. 


Resources:

¹, ², ³ DNS Article - "Maximus 'admits' using brutal and dangerous suicide questions": http://www.disabilitynewsservice.com/maximus-admits-using-brutal-and-dangerous-suicide-questions/

Article in the Independent - "DWP's fit-to-work tests 'cause permanent damage to mental health' study finds": http://www.independent.co.uk/news/uk/politics/fit-to-work-wca-tests-mental-health-dwp-work-capability-assessment-benefits-esa-pip-a7623686.html

Freedom of Information Request: https://www.disabilityrightsuk.org/news/2014/september/wca-assessors-how-much-training

Nurses' training documents: https://www.disabilityrightsuk.org/sites/default/files/pdf/nurses.pdf (see pages 6-7)

Physiotherapists' training documents: https://www.disabilityrightsuk.org/sites/default/files/pdf/physiotherapists.pdf (see pages 7-9)

Doctors' training documents: https://www.disabilityrightsuk.org/sites/default/files/pdf/doctors.pdf (see page 8)

BACP "Working with Suicidal Clients" - Introduction: http://www.bacp.co.uk/ethical_framework/documents/GPiA042.pdf (see page 6)

BACP "Working with Suicidal Clients" - Risk factors: http://www.bacp.co.uk/ethical_framework/documents/GPiA042.pdf (see page 8)


Tuesday, 28 February 2017

"Not really disabled"

The other day, George Freeman (Theresa May's Policy Chief) gave some very insulting and trivialising comments about anxiety disorders. You'll find the details in this article . It seems he believes that those with anxiety disorders are "not really disabled". Apparently all we do is sit at home; taking pills.

After a lot of (very much deserved!) criticism, he responded with a feeble non-apology; where he expressed "regret" that people were offended. Now I do understand that he has had an anxiety disorder in the past & I would never invalidate his experience of that. I do think, however, he needs to educate himself on various anxiety disorders. He may then learn that the symptoms can vary in severity, are complex, and can be very debilitating.

Disability is officially defined in the Equality Act 2010 as this:

"A person (P) has a disability if-

(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities."

I cannot speak for everyone with an anxiety disorder/s, but here are the ones that I have and how they affect me.

Agoraphobia

I get very anxious about leaving the house; especially if there are people outside. To travel anywhere, I rely on my dad driving me. I get far too anxious to take public transport, and can't even take a taxi on my own. I can't manage group situations where I have to stay in the room/it'd be considered rude to leave suddenly (such as a class or meeting) and have to be near the toilet or exit if I'm in a restaurant/cafe etc.

Last time I managed to take a train by myself (years ago), I had panic attacks and had to wait for a later train than the one I'd planned to take. I felt very nauseous, dizzy, shaky and sweaty for the entire journey. Once I arrived at my destination, I was physically and emotionally exhausted. I found it very hard to focus, and when I had to change trains, I ended up lost for an hour and almost in tears at the train station. It's a good job the friend I was meeting was a patient one! In order to get home, I had to get my dad to pick me up (the journey takes over an hour by car).

Obsessive Compulsive Disorder

I've had OCD since childhood, and have tried hard to hide my compulsions. On a bad day, it stops me from leaving the house. It makes me irritable, snappy, and has caused arguments in the past. I take much longer to do things than I should, and am often late for appointments because I've had to complete compulsions, or repeat them until I am "reassured" enough to leave the house. This condition makes me feel trapped and, when I did work, it caused me to miss meetings and compromised my performance at work.


Generalised Anxiety Disorder

I don't react well to changes in plans. I need to know what to expect, Usually, my anxiety flares up in response to things, but I do find that I can randomly panic and not know what has set it off. I get panicky about hypothetical situations, and cannot just wait to deal with a certain situation when it occurs. I tend to think 10 steps ahead of myself, and think of the worst case scenario. I will dwell on potential problems; even more so if I cannot think of a solution.

I find I get very paranoid as well, and I worry a lot about people's opinions of me. I worry about losing friends and look for cues that they may be annoyed at me or drifting away. I also am constantly asking for reassurance.

Phone Phobia

Recently, my phobia of this has lessened and I can now cope with making some phone calls. I still find that I get very nervous when receiving phone calls though, and most of the time I will leave it to go to voicemail. I worry about not knowing the answers to questions I may be asked on the phone. I also worry about not having details like reference numbers ready when needed. I often mishear things and get very anxious (panicky even) if I have to keep asking the other person to repeat themselves. When I worked, I had customers react angrily over the phone because of this. I would avoid answering the phone in the workplace, and have been told off by my manager. I think this contributed to decisions not to carry on my temporary contract too.

I cannot think of a job where you are not expected to use a phone, leave the house, go to meetings, cope with changes, be punctual, have good attendance or be timely with tasks. Even without my other mental health and physical health problems, I highly doubt I could manage work of any kind.

So yes, George Freeman, I may sit at home and take pills but there's so much more to anxiety than that, and yes I am "really disabled".
    

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











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.

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.

Sunday, 24 January 2016

Big Changes

It's been a good couple of months since my last post, and I did mean to talk about my progress with the physiotherapy sessions! Truth is, there have been some big (and quick!) changes recently.

My parents and I moved house at the end of last month. Thanks to the letting agent rushing us along, we had less than a month to confirm we wanted the place, come up with deposit, and move in. Even without all of our disabilities, this is a very stressful thing to do! We are still surrounded by boxes, but we are much happier in this new place. It is easier to get round the house, the area is flatter, and the shops, GP surgery etc are nearer. It is a much quieter area too.

I only managed to have one physio appointment before the move, and am planning to ask to be referred to the physio place next door to the new GP's. Hopefully the wait won't be too long. I just want to be able to do a bit more (especially with my dad's health worsening).

The prospect of so many changes has been very daunting, but I'm getting a bit less panicky about it now. Things such as changing doctors, contacting various companies (including the Jobcentre eep!) to change address, the mental and physical exhaustion (not to mention the extra pain) from the move itself, have been very hard to cope with. So many things to consider, my mind has been racing. It is a change for the better, but it has involved pushing myself to my absolute limits in order to help out as much as I can.

Thankfully some of my uncles helped with the move itself. We had removal people come too. Without them, I don't think we'd have managed it!

Since my last post, I've noticed new and worsening symptoms. I put some of it down to overdoing things, but other symptoms have just been strange. I have a couple of nurses appointments, but I do need to make a doctor's appointment at some point. I did mention them to my previous GP, who has referred to them in my notes (hopefully). I'm finding that nearly every time I move my head, especially if turning to the left or right, I get a huge wave of dizziness. At the same time as this dizziness, I get pins and needles as well as weakness in my right hand. This has caused me to drop things suddenly, and has really started to bother me. My co ordination has been off too, and I'm tripping over more often. Now and again, when I get the dizziness, I feel & hear a sort of scratching in my head. It's very unnerving! This may be unrelated, but I'm getting more headaches & my eyesight is getting worse too.

As for the physio appointment, it went pretty well. There were a couple of things I wasn't happy with, but generally I think they understood the kinds of problems I had, and took that into consideration. I've not been able to keep completely to the exercise programme (the move, flare ups etc) but it is at least doable.

I'm sure there were more things I wanted to mention in this post, but I think I'll have to leave it here. I do want to blog more often. I've even wondered about vlogging, but I don't think I could cope with the mean comments.