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?

Guilt, grief and self doubt

Guilt has been somewhat of a constant companion throughout this illness.  From the niggling doubts at the back of my mind whenever I rest, to the all encompassing sense of shame and failure after meetings or appointments with social services or doctors.  It's always there - doubts about whether I'm doing enough to stay well and independent; guilt that I'm taking resources away from others.

For me, this seems to have been tied in quite strongly with grief.  Feeling ashamed and guilty about everything is a convenient way of ensuring I never accept the true reality of my impairments and illness.  But it's also about control - the control of others, namely social services, the NHS and the DWP.  They act as though if only they could grind me down enough, I would stop fighting for my rights.

Sadly, it's been working.  The main reason I've not written in this blog in so long is because I've felt as though nothing would be good enough, political enough, eloquent enough - because I've just not been well enough to write as well as I used to.  I guess I thought people would judge me - but this is a blog, not a holy book.  People do not need to hang on to my every word.

I had a realisation the other day as I was heading through a shopping centre in my powerchair.  There is no chance on Earth I would be able to walk even 1% of the distance I had in the short space of time I was there and yet others were strolling around casually.  I then thought back to my own guilt when I was given an NHS powerchair.  I felt guilty because I can walk 2 metres... occasionally.  If I'm feeling guilty enough I might even walk 5!  Looking back, this just seems ridiculous!  You can't survive without a wheelchair whilst only being able to walk 2 metres occasionally!  My flat is much bigger than even my forced sickness inducing 5 metres!

The system is broken.  It's scarred my thinking and hindered both my independence and my acceptance of  impairment, but I'm working on it.

I will try not to feel guilty about not working.

I will try not to feel guilty about using a powerchair.

I will try not to feel guilty about needing care.

I still have something to offer in this world and no amount of prejudice will stop me from doing so.