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?

Disability, gender, body image and generally hating everything

I've been meaning to write on the topic of disability and body image for quite some time.  Of course, the intention was to write something eloquent that people would relate to - with a hint of academia to boot. Alas, no.


I generally think I'm quite good at dealing with this crip shit, but not today.  Today it just really bloody hurts.


*trigger warning for transphobia and bad hospital experiences*


Also, this is a bit long I'm afraid but it's important for me to voice this.


You see, I've been filling in my DLA and ESA renewal forms.  For those who don't know, DLA forms request an intrusive amount of information about things like how often you go to the toilet, how long it takes and what help you need.  All fun stuff.

The thing is, I spend most of my time living - not counting the amount of times I shit.  I also try and ignore a lot of the times I probably need assistance and try and pretend it's normal to put up with certain things. The thing is; it's not normal.  DLA forms serve as a reminder that your care needs are not only higher than you originally thought, but that the chances of you getting those care needs met by social services or the NHS are slim to none.  


That's right! You're a smelly cripple but we're not going to help with that - here's £20 a week compensation. p.s we ignored most of your needs anyway.


It's also pretty bloody impossible to fill in those forms and not feel like some degree of a fraud.  After all, the daily mail says so!  Last year I made myself very sick repeatedly attempting to walk short distances and timing it. The thinking went the lines of "Bugger! Today I managed to walk 5 metres in 2 minutes but I put 2 metres on the form!  Will I get done for fraud?  Am I taking money away from others?  Am I just fat and useless?"  I wish I was joking.

Today I had a doctors appointment in the same department of the same hospital on the anniversary of my month long stay in hospital last year.  That stay was traumatic.  I was accused of making things up, ignored by nurses leading to several completely avoidable embarrassing wet beds, told that one single test could decide whether I was telling the truth about my care needs and general treated like some crazy person who was making things up (because you know, mental health issues are something to ignore anyway.)  That hospitalisation has left my medical records scarred and my body image in shreds.  


In that hospital they taught me that I was worthless, that my care needs were worth nothing because I lacked the back up.  On hearing my gender history my validity on a male ward was loudly questioned, calling the gender clinic psychiatrist became more of a concern than the fact I couldn't move or empty my bladder (13 hours in total without a non silicone catheter). I was assigned an endocrinologist (on the assumption gender is more relevant than impairment) and left writhing in pain when the urinary retention inevitably lead to infection, agonising abdominal pain and vomiting. After finally responding to my buzzer the nurse simply replaced the kidney dish without asking why I was vomiting.  I had to buzz again to explain that this was not normal.  Throughout the night I was told that the doctor was dealing with 'far more sick people' despite the fact if I was at home I would have called an ambulance by now.  When I finally did see the doctor I was told I didn't need to catheterise, apparently just pushing on my bladder would do the trick!...because you know not pissing for 13 hours is normal let alone when you're partially incontinent....kinda weird for it not to find it's way out.

It's one year since I left hospital and I'm still feeling the affects. I have care but no care package which means no guarantee the care will last till tomorrow and no choice over whose hands wash me each day.  Social services have no understanding of the need for a 'safe' carer when you're trans, autistic, have PTSD or have other body issues.

Arriving at the hospital today was enough to set my heart racing.  Thankfully a quick stroke of the hand from an understanding friend and the reassurance that swearing at the nurses who mistreated me would be back up by them saw me through.

Then to urology.  I'm fairly open about this stuff with my close friends and perfectly able to be lighthearted about it but there's still that voice at the back of my mind saying "you're not good enough. You're not adult. you're disgusting."

Then there's the nerves about potentially disclosing and the inevitable:
"so when were you diagnosed with MS"
"urm, I don't have MS, I have a diagnosis of 'possible CFS'"
"So why do you use the wheelchair?"
*facepalm*
....it's like the diagnosis means everything.  My experience of living without a diagnosis is one of being judged at every angle. Someone with MS can have exactly the same impairments as me.  The only difference is an MRI scan.

Yet again I find myself emphasising the seriousness of the issue in order to get any on going monitoring, being careful to say "oh yes, thank you, that's really reassuring" when really I'm thinking "what the hell is wrong then?" and being careful not to mention specific issues that sound too damn weird to be believable.  One day, I hope that even if my healthcare is not straight forward I can at least see the paranoia lifted and feel able to be honest.

Whilst feeling pretty damn awful about my body image already given that I feel infantalised, deligitamised and like a fraud I headed in to sainsburys.  One comment was enough to knock me to rock bottom.
"yes madam?"
This has happened a lot since I started using a wheelchair.  People don't look at me.  As soon as they've looked they apologise and change to 'sir'.  I feel bad. This shouldn't bother me.  I happen to think gender is a massive undefinable blob but I also have to live in that blob. I know if I wasn't trans I'd probably shrug it off as me being a bit effeminate and him being a bit lazy....but I can't.

Those words just reminded me of everything atypical about my body and made me feel like I'm not good enough.

I wish I could say 'enough, no more.' but I can't because it's all so ingrained...and I'm not the only one.   None of this stuff is anything to feel ashamed of but it's really hard to feel empowered about having a body that's different when you're constantly met with resistance and disgust. 

Independence

'Independent' is not a word many people would likely use for me these days, least of all doctors or social workers.

I have been repeatedly accused of becoming dependent on carers and this is (supposedly) the reason why I've been denied a personal budget or even an official support plan.  As if denying me any support would be a route to 'independence' (rather than a route to hospitalisation).  I've been made to feel lazy, a fraud, a scrounger and unworthy of 'their' money.  This has now been going on for 16 months.  This has left some deep scars to my self esteem and over all mental health and continues to grind me down - though thankfully I now posses more tools for dealing with this.

I've been so overwhelmed by all of this - by their accusations, their lies and abuse, that I've not really taken an objective look at just what I have achieved.

I have been fighting for 16 months to live independently, control my own care/assistance.  I've been fighting for the right to take part in hobbies and  volunteering with a view to further study.  I've fought for a wheelchair. I spent a month in hospital fighting for my right to care on discharge despite the lies being spread about me by staff whilst there.  That month was hell - but I still fought and left with care provision.

I live by myself.  After being of no fixed address for 4 months I moved in to my own adapted property. I kept pushing and pushing until this was confirmed.  Despite increasing impairment I refused to move in with parents 'until I'm better' because I knew realistically that time may never come and I would be stuck there with no financial means to move.

I am fighting for the correct level of benefits too, and fighting for a diagnosis.

Looking at this objectively, there's no wonder I'm exhausted by it all and no wonder that my mental health has taken a beating.  Many of these issues remain unsolved but one thing remains true:

I am sat in my own flat and whilst things may not be perfect, whilst the last 16 months have been hell, I have far more than 16 months ahead of myself to enjoy and I will keep fighting until I win the right to live the life I deserve to lead.  This is something I should probably give myself credit for.

I think I'm far more independent than they will ever understand.

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.