Rambly post about DLA renewal forms

As a disabled person, I spend a large amount of my time filling in forms, writing complaints, chasing up medical and social care professionals.  It feels like what little time I have left is overshadowed by the constant knowledge that the to-do list is getting longer and longer. 


At the moment I'm filling in DLA renewal forms.  They didn't send them to me so I had to call to ask for them...and they still didn't send them. Thankfully the form is the same as for initial claims so I managed to download it and am filling it out on my computer.

DLA forms require a lot of mental/cognitive energy - something I really don't feel like I have at the moment.  It also takes a hell of a lot of emotional energy. The forms can be quite distressing. In order to fill them in properly you need to spell out what care you get and what would happen if you didn't get it...something I don't particularly want to think about, especially as social services are messing me around so much they could take it away at any time.   The form also requires me to put down all of the care needs I have that are not covered by social services care provision. This is definitely not somethign I want to think about. I prefer to pretend dealing with the things I do is normal and it's upsetting having to think about how different my life is now + how often I have to deal with slightly gross stuff.


The forms are also stressful because although I know what I'm entitled to, no matter how well I fill the forms in, I can't guarantee I will get anything near what I'm entitled to.  Last time I was awarded a lower rate than I deserve (thus missing out on various financial premiums) because the fact I'd lifted my arms up once in a medical assessment for a completely different benefit apparently means I have no functional upper limb disability and can complete all self care independently...It could be worse too.  They could take all the money away, and trust me, being disabled is expensive business.


I'm also concerned about a gap in my benefits...can I live without the money whilst the renewal is being processed?

On the plus side, receiving DLA (even at a lower rate) has allowed me to pay off some of my debt meaning that when I doget DLA I'll now be able to use it for disability stuff without guilt.  Also, if I win my appeal in the autumn then the backpay will be pretty massive.....like my own little DWP savings account ;)


How do others deal with the emotional side of filling in these forms?

 

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.

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.

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.