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.

"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.