Rarr, just rarr.

Tonight I am incredibly angry and frustrated.  Everything that I do to manage my own impairments and over all health is judged by the medical profession. No matter what I do, it will never be right.

I still have no diagnosis.  I pretend this is ok but it isn't.  The more time goes on the less likely ME seems (my provisional diagnosis).  I want and need to know what this is in order to deal with it, in order to feel as if what I'm doing is the right thing.

I know that I shouldn't need validation for how I manage my own life but do I really deserve to be constantly judged?

It occurred to me the other day that my follow up appointments at the gender clinic are half an hour - more than double that of the first appointments I've had with each neurologist I've seen.  At my last gender clinic appointment we mostly discussed how the psychiatrist liked my shoes and coat and that the tories were a bit mean and yet in a 10 minute outpatient neurology appointment a neurologist can supposedly change my entire medical record and make me sound like it's psychological and I'm resisting treatment.

If you don't know what it is, how do you have any basis for telling me how to manage it?  It's my body and I know it best yet I am made to feel as if every single decision I make about how I pee, shower and move etc is somehting that warrants judging.

No doctor seems to understand how my symptoms interact - just that my walking can't be severe enough to use a wheelchair.  Aren't they supposed to understand that walking is about more physical processes than just putting one foot in front of the other?  'Someone else is dealing with that I'm sure' is not an adequate answer.  Neither should you make any judgements about me without taking in to consideration the whole of my health.  Not least anything as damaging as suggesting it's psychological/psychiatric.

I have such mixed feelings about everything at the moment. I had a massively triggering conversation the other week about conversion disorder that has just thrown me off balance.

I've stopped self propelling which freed up a few 'spoons' which i used a few of on walking.  Except even though the fluidity of my movements seems to be improving, I actually feel more ill.  I'm not going to completely discount the fact my mobility might be improving but I do need to take better care of myself and not just use it as a means of proving things to myself/self harm.

I just wish I had answers.

I also need a GP that's willing to help me out in terms of letting me try various treatments.

My sleeping pattern is completely messed up.  Why does everything just seem so horrible at the moment?

A noobs guide to potential equipment/adaptations - part 1

I was talking to someone the other day about how there's a prevailing attitude within parts of the chronic illness community of cure over adaptation.  This seems to be quite prevalent in those illnesses for which campaigning centres around 'cure' and/or those where 'recovery' is the socially expected outcome.  Don't get me wrong, I'd really like to get better but I'm trying to be realistic here.  


I've spent a long while feeling guilty about adapting my life rather than aiming to 'get better'. In reality my illness was very much progressive up to a point and now I can't tell if the progression has stopped, or just slowed down.  Either way, guilt does not help me with anything.

So...I thought instead of talking about how bad I feel and *insert internalised ablism here* etc etc, I thought I'd talk about some of the awesome adaptations I've made which have changed my life.  I think this blog would be way too long if I included everything so I'll attempt to make this in to a mini series of some sort.


I'd like to point out that I am both very lucky and very crafty in terms of the equipment and adaptations that I have.  Many of the items I own would not usually be prescribed for someone with my impairments.  However, that's not to say that they are not needed.  I wish it was much easier for others to gain the things they need.  However, as I said, I've also been quite crafty in terms of getting equipment so hopefully some of you may get some ideas on obtaining things.

Adjustable bed

Note: stock photo: I don't have granny carpet

This was one of those items that I initially felt very uncomfortable about having but that made such a massive difference to my life that I felt silly for ever doubting it once I started using it!  (This happens a lot!)

What is it: An electronically adjustable double bed with  massage function.  I use my own ikea memory foam mattress on top instead of that supplied.

How it helps: 

- Sitting up from a lying down position is either impossible or very very difficult for me so this helps me sit up and means I can get out of bed with minimal to no assistance unless very ill.
- One of my impairments is what I like to call the 'upside down woodlouse'. In layman's terms: once I'm on my back it's often very difficult to change position.  Being able to adjust the legs and back means I don't get uncomfortable lying in the same position.

Why I like it

- I like the fact it's a double. I can take advantage of being a single adult and take up way too much space/duvet.
- It doesn't look like a hospital bed.  It's designed for crips and lazy people alike.
- I spend a lot of time in bed and it's nice not having to lie completely flat to get the benefits of being in bed.

- It's really freaking comfy.

Disadvantages

- It's a bit old and creaky.
- Anyone in bed with me needs to put up with whatever bizarre position I need to be in.
- Unlike hospital beds you can't adjust the height of the bed which makes changing clothes/pads from a lying position more physically demanding for a PA/carer/nurse.
- The massage function is more like a giant, loud vibrator.

How I got it:
- The community OT prescribed me a pillow lifter to help me sit up in bed but I found it far too uncomfortable.  Instead she converted this to a 'direct payment'.  This meant I was given money to buy something which fitted under the (intentionally broad) description of "a piece of equipment to rise from lying to sitting in bed".  A bit of crafty ebaying and I had myself a double adjustable bed costing less than the direct payment.

wheelchairs and choice

So, I've decided to take part in National blog post month.  Wish me luck. I'll try and post something even if brief each day.  It will all be about chronic illness, neurodiversity and maybe some queer theory thrown in. Here goes! (WHOOPS! That failed....)

People are often seem a little confused that I use a wheelchair. Like most wheelchair users I often get asked by total strangers “what happened” to me. The assumption being that I've had some sort of interesting accident resulting in paralysis. I don't generally bother answering these sorts of questions (I've not yet remembered to say “shark attack”). It gets more complicated when it's people I know well enough to answer though. Every time someone asks, I find myself sighing. “It's complicated”. My emotive response often leads people to thinking they've offended me, but that's seldom the case...I just don't know how to answer. “an illness – still working on a diagnosis”, “Maybe M.E” followed by “severe M.E” (to try and justify myself) and “ME is more diverse than you might imagine” (to try and put off any stories about someone's “friend who had M.E”).

It's now becoming more well known that people use wheelchairs for a variety of mobility needs, and that many (most) wheelchair users are able to walk at least a little. However, I've still experienced much prejudice by the medical and social care profession as well as from family and friends. So, whilst being cautious not to justify myself, I'm going to attempt to share my reasons for using wheelchairs.

So why do I use a wheelchair?

About 2 years ago my health started declining. My brain was causing some pretty weird symptoms, the most scary of which related to my ability to walk. The room span, any slight change of light effected my spacial awareness and my legs would do different things to what I asked. One day I woke up with a limp, then quickly this progressed to both legs. Walking became slow, tedious and took a huge amount of energy, energy which was already limited by my illness. Every time I left the house I'd end up stuck in bed for days, barely able to move for hours at a time and needing to crawl to the toilet and living off cereal bars stashed down the side of my bed. My body didn't seem to tolerate being upright in any way. The previously 5 minute walk to the tube station started taking half an hour and before I knew it I started needing to take the bus just to get to there, then even getting to the bus stop became impossible. In June I experienced my first severe periodic paralysis episode. I told a friend who told me to call for an ambulance. I did as I was told though regret it to this day. A doctor came for a short period of time and then dismissed my symptoms. I was then repeatedly asked if I could “walk properly yet” before being discharged with no offer of transport home. I didn't even have my walking stick with me. The nearest cash point was not working so I had to force myself further away from the hospital. I had to cancel my weeks plans and stay in bed, all because I tried to do the best thing for my health.

I decided to get an electric wheelchair after realising the only way I would be able to attend a music festival was if I used one. It was cheaper to buy on ebay (well, until the batteries stopped working!) than to rent, so I made an investment,planning to use it for “long” distances. I came back from the festival very unwell, but had still managed to do it, something which would never have been possible without the chair. I quickly realised that if I was to keep my health in any way stable I would need to use the wheelchair at all times outside my home.

My wheelchair use then had to increase after a severe UTI caused took away all walking ability. My ability to put one foot in front of the other has returned and has steadily improved thanks to more adequate care (though remains more impaired comparatively), however, my wheelchair use now remains near full time due to the extreme impact that standing upright has on my health. Until this is resolved, any work on my gait is of little use. Currently, it remains better for my health to use a manual wheelchair indoors in order to “pace” my energy levels. Also, in my opinion being mobile around the home in whatever capacity is far better than staying chained to the sofa.

Reading this back, my decisions to use a wheelchair seem pretty fair, however my decision has repeatedly been met with resistance from the medical profession and used against me. Rather than recognising my walking problems, doctors decide that they're not bad enough for me to use a wheelchair. I've experienced relapses after taking a “specialist”'s advice on this issue. More recently I was denied access to social care and treated like a fraud after a social worker spread lies about me within a hospital telling staff that “If he really needed a wheelchair, the nhs would have provided one”. This lead to an extended stay in hospital as I tried to prove I would not be safe without adequate care provision. Even since leaving hospital I've had to repeatedly argue that my illness is not psychological, and recently won the fight for a wheelchair service referral after a physiotherapist wrote an inaccurate report leading to refusal of referral (she helped me transfer in to my wheelchair, left me stranded without my controller and then wrote a report declaring me safe to go home and not needing to use a wheelchair). All of this has understandable had an impact on my mental health.

There is a general attitude that disabled people need to “do their best”, “overcome obstacles”, “work towards independence”, “avoid deconditioning” and try and resist wheelchair use for as long as possible..but I think for a lot of people, the medical profession has it completely wrong. When it comes to chronic illness, sometimes accepting as much help as you can is the only way forward to balancing a baseline of health whilst still retaining some control and quality of life. Many of those resisting wheelchair use remain bed bound or housebound. How can that be better for their health than getting out (within their own limits) and remaining partially mobile?

So, no, I have no badge of honour, no moving story of overcoming illness and disability but I didn't give up either. Wheelchair use may have been a choice for me, but really, it was common sense.