Wednesday, 31 August 2011


Well, last week I finally posted off my ESA application form.  All 20 pages of fun and frolics were finally completed in my teeniest and tidiest handwriting, so it would fit in the boxes.  I made sure that when random questions were asked, I answered them as fully as possible.  For instance, there was one question that asked "can you go up and down two steps, with a rail, unassisted" to which the correct answer is yes.  However, the full answer is "yes, but I can't move my wheelchair or rollator up or down those steps, so when I get where I'm going I can't actually move any further as I do not have my wheelchair or rollator."  I would imagine that is a very common answer on this form!  It just seems so limited in scope when illnesses are so wide in their effects.

I hate filling in DWP forms at the best of times, but I found myself particularly hating this form.  I think it is because of what it represents, that if the Government has it's way I will have my benefits withdrawn from me, simply because my partner earns too much.  In theory this is fine.  I won't starve, I won't be homeless, I will be warm and clothed - but I will be completely and utterly dependent on my partner for EVERYTHING

Currently my partner pays the mortgage, the bills and most of the food shopping.  He pays for holidays and little extras, like my new tyre for my mobility scooter and my new rollator.  He also shops, cooks, cleans and drives us everywhere, pushes me in my wheelchair and generally worries about how I'm doing.

When I have no income at all, I will have to go to him with my hand out to request money to pay for a haircut, or some new shoes.  I will have to ask him if he minds buying me some shampoo or deodorant (and praying he buys the right one).  I will have to ask him to pay for me to go out for lunch with my friends, on the rare occasions that is possible.  In short, there will be no element of my life that is independent from my partner.

I hate that idea.  There will be nothing that I can manage without my partner being involved on some level.  That is a horrific weight to have on a relationship.  It is hard enough knowing that he has to manage all the physical things in our lives, and that he has to keep earning a good salary so we can continue to live in our home and run our car.  To add that extra burden to him, of knowing that without him, I would be completely stuffed, both physically and financially is so unfair.  To make me completely dependent on someone else is unfair too.  It is horrible to go, like a child to a parent, for "pocket money".  It just feels wrong and I know I won't do it.  I'll just go without, unless it is essential.  I will hate asking for money.  It was hard enough applying for the benefits, that I had contributed to, by paying National Insurance and Income Tax for 10 years.  Going to someone I love and asking him for just one more thing feels impossible.  He already gives me so much. 

The anger making thing is, he also pays his Income Tax and National Insurance, and he's expected to pay out more because he chose to share his life with a sick woman.  It would certainly make a lot of people think about getting involved with a sick or disabled person if they knew they would have to support them, without aid from the Government, for the rest of their lives.

Tuesday, 9 August 2011

Feeling Trapped

This weekend I had another reminder how life just gets more difficult when you can't walk very far.

I was visiting my in-laws, who had a local music festival going on.  We had arranged some time previously that we would go, and tickets had been bought and arrangements made.  We travelled down the day before so I could rest adequately for the big day and I decided that I would go for two sections of the event.  I would go for lunch when it started and stay for a couple of hours to sit in the sun and enjoy the festival atmosphere and then go back to the in-laws for a rest.  I would then go back for the last couple of hours between 8-30pm and 10-30pm.  That way I would get to experience the whole nighttime and headline atmosphere.

Can you imagine my dismay when we unloaded the scooter from the car and found I had a puncture?

The other half quickly leapt into action calling round several mobility shops in the area, to find none that could help us.  While this was going on I was so upset I had to go inside and take some deep breaths.  I was so angry at this simple puncture because it seemed to sum up everything about my life that is extra hard.

It took a great deal of soul searching before I bought the mobility scooter.  I didn't want to do it and my other half didn't want me to have to do it, but after we moved into this house, my health deteriorated and I found I couldn't get to the corner shop.  We live on a hill you see.  Going down a hill isn't that hard for me, but coming back up again, that is impossible.  Without a mobility scooter I became trapped in my own home.  If I wanted to go anywhere I had to ring for a taxi or ask for a lift.  With the scooter I could go to the doctors, buy a loaf of bread and even get a haircut, without having to ring for a taxi.  I could go out on a whim, you know, the way healthy people do.  I decided to get a scooter and once I had it, I knew that I could never manage without one again.

Having a puncture at the weekend meant my in-laws having to drive me to the festival and back.  They had to wait in for me to call and tell them when I had reached my limit.  When I reached my limit I tried calling and there was no answer.  In the end my other half had to walk back round to the house to find that his mother had taken her hearing aids out and hadn't heard the phone, while his father had popped out for a bit.   She had forgotten to put them back in when he went out, and that is why she missed my calls. By the time I eventually got back I was in a foul mood because I had to rely on other people and they had to adjust their day to accommodate my health, and it hadn't even worked properly.  I was also in more pain because I had stayed longer than I intended and had got myself worked up and angry.  I never did go back to the festival to enjoy the headliners.  I think I knew that if I had rely on the in-laws I would be worrying about being stranded again because of some strange and unlikely coincidence.

So whilst my whole weekend wasn't ruined by the puncture, it certainly limited my enjoyment, and probably increased my pain levels due to pacing inadequacies and stress.

Everything in my life is so much harder than it would be if I was healthy.  I do believe that most things can be achieved if you apply a little lateral thinking and clever scheduling, but quite often it also includes applying money to the problem, like buying a scooter or paying for taxis. 

I finally got my scooter tyre inner tube replaced today.  The scooter repair people came out the day after I called them.  I am now mobile again.  It cost me £48 to get my freedom back.  I only had one day of being stuck at home with no way of getting out, but it reminded me of all the things I hate about being trapped in my house, it feels a little bit too much like being trapped by my own body.  It's another example of why it is so expensive being disabled.  I think most of that £48 cost was call out fee.  Because I am disabled, someone has to come out to me to fix the scooter.  It fills me with horror what would happen if I didn't have the money to repair the only thing that gives me true freedom. 

I feel guilty for feeling so frustrated and angry at my situation when I have the benefit of a supportive partner, family and friends and mobility equipment that helps me and is repaired when things go wrong.  But, whilst I know that lots of people have it worse than me, I can only tell my story and how my disability effects me, and this really made me upset, so I'm sharing it.