a ramble

Not sure  where I was going with this.  I may or may not work on it/finish it over time.  I'm just at my whits end with care situation.

Oh, are you going back to bed?

She said

Am I 'changing' you?

Are we doing personal care?

I have to 'do' Val next.

Like a conveyor belt of the graciously disabled

waiting for the luxury of being clean

in an allocated time slot

(or one hour either side)

What are you eating? A ready meal?

Other carers wouldn't do this you know.

It's just me. You'll miss me when I'm gone.

The office say I'm spoiling you.

You're a young man, you should try harder.

Guilt.

We don't want you to become dependent.

Shame.

We've never dealt with anyone like you before.

You have to think of the carers you know

it's unsafe to walk at night.

I'm doing you a favour coming so late.

(so I can come early if I'm going out)

Is it selfish not to want to hear about your life,

your mortgage, your insecurities?

Is it unreasonable to expect my comfort to come first,

And for you not to raise your voice?

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.

heading over to tumblr

I'm heading over to tumblr in a bid to try and get more followers.  I will be posting both here and on tumblr for as long as I can remember.  I've also started a twitter.

Look forward to more regular posts!

DLA forms, disability progression and arsehole doctors

My illness/disability has followed a progressive path.  Sometimes that's really hard for me personally to notice. Sometimes things do just stop you in your tracks and remind you though.


Guess who's currently filling in a DLA application?  Ok, ok I've been eligible for DLA for over a year now (actually I could have claimed low rate mobility for about 10 years). I know I've lost out on thousands of pounds, but, in a (as a friend put it) "tragic to the point of hilarious" turn of events, I was too ill to deal with DWP's mistakes with my claim a year ago. Yes, that's right, my care needs were too high to prove that I had care needs.  What a load of old...

There's just so many things on that form that really make it hit home how restricted I am these days..and how much worse things have gotten.  Of course, I'm now actually getting care too.  I knew I needed the help, but nothing brings you back to reality quite like a middle aged woman wearing a plastic apron and gloves stood in your bathroom. 


This is my reality now.  I mean, what the hell?  I wonder why acceptance can't just come in small bite sized chunks, rather than these massive realisations knocking me for six.

Don't even get me started on my mobility.  I have so many issues with this topic.  I've been told by doctors repeatedly that I have no problem with my walking.  Recently a neurologist finally acknowledged there was a problem but decided it was neuropsychiatric (code word: - all-in-your-head).  Despite the fact that there were positive signs of spasticity in his examination he's decided there's no sign of organic problems.  I'm dreading these muscle and nerve tests coming back negative.  It's like a never ending competition between me and the medical profession for who gets to say "I told you so".


The thing is, the neuro has a point...well sort of.  I mean, quite obviously I don't think this is psychiatric but I can see how he might be perplexed by my choice of mobility aids after watching me walk.  See, my walking is impaired, there's no doubt about that.  I look like a cripple when I'm out of my wheelchair too. But...it's not *that* impaired*.  What I mean is...if you watched me walk a few steps you'd probably think I could do with a walking frame and maybe a manual wheelchair for long distances.  Hell, maybe that would improve with some physio.  But, what the doctors seem to completely ignore is that the 5m to their bed is making me ill and that all the little 2 steps here, 1 metre there adds up and takes all of my spoons for the day, and the next, and the next whilst causing my mobility to deteriorate in the process.  If I want a life, I have to use an electric wheelchair, effectively nipping the symptoms in the bud before my mobility deteriorates so visibly.  Of course, this is very hard to capture in a 15 minute appointment (particularly when the doctor in question is not bloody listening).  So, rather than them looking at my walking impairment and seeing...an impairment, they see something incongruent with my own *choice* of mobility aid and jump to the conclusion that I must be perpetuating things.


I mean, I know I'm right.  I know if I push myself too hard I get ill. The problem is, a few of my care/mobility needs are imposed by these boundaries of being unable to push myself...and I guess I find it quite hard to trust myself when everyone around me is either questioning my illness or trying to insight me with hope for the future (as if there's something I can do that will improve this).  So, I can either push the boundaries knowing they're there for a perfectly logical reason, something I've realised is pretty much self harm.  Or, I can try and accept that whilst some things in life are a "choice", really if we're to live, there is no choice to make at all.


I really wish other people would realise that chronic illness is not really something you can fight.  That sometimes the best we can do to "fight" is to rest and to listen to our bodies.  You really can't push through this.  I know I need to cut myself some slack and get some self trust but it's really hard when carers, social services and doctors don't get it and just perceive me as giving up.


*and on this occasion having been well rested for a few weeks in hospital was at its best with any visible spasticity being overshadowed by problems with "initiation of movement" - something which is apparently indicative of neuropsychiatric issues (despite the fact it's really common in things like parkinsons!)

I have a lot of things to unpack after being in hospital (and I don't just mean my toiletries)

*trigger warnings for bad hospital experiences and death*


I've spent over a year fighting and I'm tired.


I've been fighting for adequate medical care and a diagnosis. I've been fighting to stop prejudice and diagnostic overshadowing getting in the way of that happening. I've been fighting for acceptance and support from friends and family.  I fought for my own home when I was homeless.  I'm fighting for adequate social care. 


I've spent so much time fighting that I've not had so much time to accept the fact that this is utterly, utterly shit.
Today I got home from hospital.  I was in for 4 weeks.  I should have been in for 2 days but they had a legal obligation to keep me in as it was unsafe for me to go 
home without care.
It's important to note that some of the nurses were respectful and helpful although many were easily influenced by my social worker's lies.

But....

In the time that I was in hospital:







- A social worker told lies about me resulting in the breaking down of communication between nurses, doctors and myself.  I was treated as a fraud.
- I was consistently misgendered including someone writing a female name on my records for no apparent reason.  I had my validity in a male ward questioned.
- My transgender status was initially more interesting than my acute health needs to both doctors and nurses.  Later, undue emphasis was put on this.
- I was treated as a fraud and a bed hogger.
- My notes now contain suggestions of psychiatric, psychological and somotisation issues.
- My neurology appointment was a complete waste of time as he didn't listen to all my symptoms so focussed only on my walking problems concluding they are rehabable.  Despite running tests I'm not seeing him again as "I think you've seen quite enough neurologists already".
- I was made to feel degraded about accessing help including a nurse having a heated argument with me about how I was lying/exaggerating about what I need help with whilst we were in a tiny shower room.
- I had to wait 13 hours to empty my bladder as the hospital had no non silicone catheters and I hadn't anticipated staying in at all.
- Staff took long periods to attend to buzzers.
- Staff could have been a lot more discreet when dealing personal care
- New health needs I presented with were largely ignored including an acute attack of abdominal pain and vomiting + severe bladder pain post catheterisation.  A doc suggested just pushing on my bladder instead of cathing....


I need to mention this because it has affected me but need to clarify I'm not suggesting any negligence but: 


- 2 people died. 1 of which I saw vomit large amounts of blood and had to call a nurse.




Let's just say I'm happy to have a counselling session booked for next week.

"hope" - is it always a good thing?

I realise I've not posted in a while.   I haven't had the spoons for writing anything that I would consider worthy of posting. However, it's 2.30am and my head is spinning with thoughts surrounding my future, triggered by recent issues regarding social care meaning that I am still without daily assistance.

Most of the people I know on chronic illness forums seem to base their own future hope and aspirations around being well.  Amongst the majority of posters there is a fear of a future where they remain as ill or impaired as they are currently, or become worse.  I beg to differ.

It's not that I do not want to be well because I do.  I wish I could lose the odd physical sensations that interrupt my trail of thought and I definitely wish my cognition wasn't so restricted by fatigue and general messed up neurology.  But, I can envisage a decent future for myself where I am still ill and impaired.  I think this is important.  I'm not going to waste the years and months away fixating on a falsely positive sense of "hope" to the detriment of any level of acceptance or adjustment.

So what are my fears for the future?

I'm scared that rather than my body and mind letting me down, it will be social services, the NHS and the government that does so.  


I'm more scared of these services causing my impairments to progress than I am of the progression itself; because whilst I can accept nature taking its course, injustice is always hard to accept.

I'm worried that I will always be hyperaware of my impairments because "if I had adequate support I could have done that"

I'm worried that I will never be a performing musician or work again, not because my health prohibits it but because I have been denied the support necessary to complete daily tasks.

I'm worried about what all the above is/will do my self image and that by the time I'm awarded adequate support, my mental health problems will prevent me from doing the things I want to any way.

Hope is useful to keep yourself positive, but not to the detriment of fighting for your future.

  

Working out how much help you need

In learning to take care of myself I've discovered that just because a task is not completely impossible for me to complete, that doesn't mean that it's something I 'can' do.  This is something I'm still struggling with.  I've tried analysing tasks to see if they fit in to boxes of "can't": things I literally cannot do and; "bad idea": things that would involve a lot of payback. 

Completely useless!

Tasks placed in the "can't" folder just get moved to the "do it in a different way" folder and equally, things in the "bad idea" folder get moved straight over to the "definitely worth it" folder.  The result is that I get no rest and become more unwell.

To illustrate this:

 I experience transient paralysis in my legs.  Walking and standing are a "can't".  The sensible thing to do here would be to rest.  Instead I "do differently" and start transferring using my arms.  The result - I soon start experiencing the paralysis in my arms too or, as has happened before, I pull a muscle and can't use my arms anymore anyway.

Or,

I really want to do something outside of the house but my heart is going crazy.  This is a bad "idea",  I should be resting.  I start to bargain with myself: "if I go outside then this will increase my mental wellbeing and that will be "worth it", regardless of the set back".  The result - My health worsens and I become so foggy that my mental health turns to jelly anyway.

I know that most of what fits in "bad idea" should really be a "can't", that "can't doesn't always have to mean literally impossible.  If you'd decided not to meet up with a friend for coffee you'd probably say "Sorry I can't" regardless of the reason behind it.  So why, when it's something relating to my own health can I not bring myself to use that word?

I guess I know that actually this would result in me doing a lot less than I currently am and since I don't know my prognosis, it might not even stop the progression anyway.  I worry I would regret not having done as much as I possibly could before my illness progressed too far.

This block has presented me with a whole bunch of barriers in accessing social care.  Social services have now accepted I have a need and have placed me on their (now compulsory) 'reablement' programme.  This means that every day whatever I need help with is recorded in a folder along with the length of time it takes and a numerical rating of the amount of assistance I need.  I also know that there has been talk about me in the office and that there is a general assumption from social services that I will not need support after this point. This period of time has become about proving to social services that I do need support.

So, why then am I only accepting the minimum amount of assistance?  

I'm scared.  I'm getting ridiculously anxious at the thought of accepting help with personal care.  I'm happy for someone to help with shoes, socks, trousers and putting a coat on but due to various body issues I don't feel able to ask for help with anything involving any degree of nakedness.  The result is that I am struggling to get dressed in the shower room quicker than I did before care, or I'm just not showering, telling carers I'm feeling "too ill" to do so.  A large part of this is because of the anxiety this whole process has caused but also because whilst I can keep putting personal care in to the "bad idea" folder I don't have to ask for help and best still don't have to have the anxiety provoking conversation about how my body differs to that of other men.  

If I could employ someone myself (as I initially asked to do) then I would try.   I really would.  It would be like our little secret that I was asking for more help than I want to need.  Instead I get carers with poor communication skills, a book recording my "failures" and an office that talks about how I'm just lazy and refuses to deal with issues with carers.

Somehow, I can't see my anxieties reducing any time soon.

Moving Drama

A lot has happened in the last month.  


With very little notice I got to move in to MY flat.  It's much bigger than I remembered and will make an awesome flat...once everything is sorted.  


On the first day I sat in the flat in my wheelchair staring out of the glass panels at the trains going past my window.  It must have looked bizarre to anyone looking in (which you can).  Just me, looking bewildered sat in a completely empty apartment in my wheelchair.  


Why was I overwhelmed?  Well, I'd spent so long trying to deal with the bureaucracy that was preventing me from gaining the flat in the first place that I'd point blank refused to emotionally accept that it was MINE.  Now, suddenly I was thrown in the deep end emotionally whilst also having to deal with the practicalities of a move.


It's been over a month since I started living here and I have still not dealt with the move.  Why?  Finances, health and lack of independence.  


Health - My health has taken a major turn for the worst of late...well it *feels* major.  I think all along I was a lot more ill than I realised.  The realisation came some point in the middle of a relapse. An awful relapse that stopped me thinking straight and made me feel like my brain was full of bubble bath...in the thick cognitive fog way but also in a literal sensation way.  I've had old symptoms return, baselines get worse and new symptoms appear too.  This has completely thrown my own ideas of my health.  I have an appointment with an ME/CFS clinic on wednesday but I'm not convinced in the slightest this is chronic fatigue syndrome.  Many of my symptoms are only generally found in the severest patients, those who are bed-bound.


Finances - I don't have enough furniture to fill this place.  I need to get a grant but that's a form and my health has not been allowing this.  Despite the fact that Christmas has just gone, this new relapse has meant I've needed to regularly buy medicines and medical items that I wouldn't usually, therefore all Christmas money has now gone and my debts are increasing. I am not in receipt of DLA due to a clerical error.  I have been putting off appealing because I didn't understand the process when it was their problem.  This may have cost me thousands of pounds but I'm hoping that, given it was their fault and my care needs are so high, I should be able to argue for it to be backdated.


Lack of independence
I've not been able to unpack my boxes because I cannot lift things or sustain much at all at the moment.    I've also been reliant on someone else to liaise with my old house and to be honest, they've been pretty useless.


So currently I have an airbed, a dining room table and some wheelchairs.  Well, it's a start at least.


I intend to write at some point about my experiences with social services, the appointment and how I feel about all of the things that have happened to screw over my healthcare.