Monday, 16 January 2012

How I Became Disabled & How DLA Helps Me

This is a very hard post for me to write, but I think it is important to explain how disability often creeps up on you.  Most of us don't get hit by a bus and end up a wheelchair, we start having symptoms of disease that take a long time to develop and get diagnosed.  We often spend years of uncertainty and trying different medications, fearing that we are becoming more and more dependent upon our loved ones.  There is very rarely a day or even a month that you can point at and say "this is when I became disabled" and acknowledging that you are disabled is a very hard step to take.  This is why it takes people so long to even consider applying for Disability Living Allowance or a Blue Badge, or even buying a walking stick or wheelchair.

Eleven years ago I felt that I was finally getting my life on track after spending a year and a half learning how to enjoy being single.  I had an interesting new job that was challenging me and I had just met the man who is now my partner.  I was taking part in amateur dramatics which meant rehearsing two-three nights a week and I was working a couple of nights a week in a pub to help pay off some debts I had accrued during my split with my ex.   I was on the go constantly and had a tiring but fulfilling life.

Within six months everything changed.  I had become pregnant and it wasn't a normal pregnancy, it was an ectopic pregnancy.  After several weeks of going back and forth from the hospital almost daily to have blood tests done they decided to operate and they removed the pregnancy and one of my fallopian tubes.  After the surgery I was off from work for 6 weeks and then was told to only go back to work part time.  My new employer had been reasonably patient but my work hadn't really been tackled in my absence so I didn't really go back to work part-time, despite my resolve to not overdo it.

Instead of getting better over time I seemed to be getting worse.  I was having incredibly painful periods that caused agony for around 2 weeks out of every 4.  I was struggling with my work load and I began to sink into depression.  In the end, my employer asked me to leave as they couldn't afford to have me there only every 2-3 weeks out of 4 and to have me struggling so much when previously I had motored through the work and been extremely competent.  They had hired one woman and ended up with a 1/3rd of one, within 8 months.

Within 2 years I had been diagnosed with endometriosis and treatments were started.  I also got counselling and I thought things were looking up.  The pain was becoming less after about the third different set of treatments and I was feeling much more together.  I was starting to feel like I could possibly start looking for work again once I had built up my stamina.  I was doing well on this front when I suffered a ruptured appendix.  It knocked me for six.  The wound got infected and I became quite ill.  It took months to recover from this surgery.  Just as I thought things were getting back on track I started to experience extremely bad pain.  Worse than I had experienced before, in my abdomen.  I eventually had a laparoscopy to discover that I was suffering from adhesions, which are straps of scar tissue that stick to your internal organs and often pull them out of shape. 

I was scheduled for another key hole procedure in a few months to remove the adhesions.  Within 6 months the adhesions had grown enormously and the surgeon ended up taking 5 hours to remove all the scar tissue that had wrapped itself around my insides.  I felt so much better within a few weeks of this surgery because my insides were all untangled.  I still experienced high levels of pain which were due to the damage that had been done over the years to my nerve tissue through operations and constant pressure of adheisons and endometrial cysts.  I was told that this pain was never likely to go away.

Despite the unravelling of my insides, I couldn't sit upright for longer than 20 minutes without feeling sick with the pain, so going out was a very rare occurrence that required much planning and reconnaissance on my behalf.  I certainly couldn't stand up, unaided, for longer than about 10 minutes without my legs giving way because of the pain.  It wasn't unknown for me to lay on the floor during social occasions because I couldn't do anything else to ease the pain.

It was at this point that I decided that I needed help.  I decided to apply for DLA, mainly so I could have a Blue Badge.  I was really unable to walk very far without collapsing in pain.  I was fighting the use of a wheelchair but eventually decided that I needed one for when I went anywhere for longer than an hour or so.

I applied to DLA and was rejected.  I decided to appeal because I knew in my heart that I was eligible for DLA and was surprised that I was rejected.  I had read that I stood a much greater chance of winning my appeal if I attended the tribunal.  I turned up to the tribunal and I was asked questions and I won my appeal.

As I had to wait 6 months for the appeal to be processed I had a substantial back payment which I used to buy a second hand mobility scooter.  This became my best ever purchase.  I could get around my local vicinity without having to get help.  I became independent again.  I decided that I needed to learn to drive and used most of my DLA to learn to drive an automatic car because I couldn't manage the clutch on a manual.  I learnt to drive within 6 months and I then got a car on Motability which completely transformed my life.  I could pop to the shops.  I could take a short trip to a friend's house, I could even drive myself to see my family 90 miles away.

Within a year though, I had to give up my car because my pain had increased to such levels I had to increase my pain killers to very high dose.  I didn't feel safe driving with that amount of drugs in my system, to be honest I didn't feel safe sitting still with those level of drugs in me.  I've mainly got used to those drugs now and have even added different pain killers to the mix.

I've had another batch of adhesions removed since then and I've had to give up more and more of my social activities.

I have also had to reapply for DLA twice since my first application.  I get it awarded for 2 years each time, as I have what is considered a variably condition, though as far as I can see it has only varied by getting worse.  The second application I made was also rejected and then appealed successfully.  My third application actually went through first time.  I was stunned at not having to appeal because I had got so used to having to jump through many many hoops to get what I was entitled to.

I totally rely on receiving my DLA now.  As I am unable to drive because of my drug intake, I use my DLA to pay for taxis.  Taxis are my sole method of independent transport.  I always have to have at least £20 in my purse so if I get stuck anywhere I can ring for a taxi to get me home.  In order to get to a hospital appointment it can cost me around £15-£20 to get there and back depending on traffic, and the same if I need to go into town to buy anything.

My scooter has been replaced since my original purchase because the old one blew up.  It is so scary being stranded in the middle of nowhere with a broken down scooter.  Thank heavens for the kindness of strangers.  So my DLA also pays for parts replacements and repairing punctures.

I have a rollator now, rather than a stick which helps keep me walking.  It cost £175.  I can sit down and rest when there is no other seating available, for example between the door of the hospital and the clinic.  My wheelchair is no good for when I'm on my own as I am unable to propel myself.  I have a step for getting into the bath (£40) and seat for sitting down while I shower (£30).  I have a heat pad (£45) which I can plug into the wall when I'm at home and the heat helps with the pain.  When I am away from home I use adhesive heat pads but they are not renewable so I can get through quite a lot.  They cost approximately £4.00 for a pack of 3.  I have to pay £10.40 a month for my pre-pay prescription but I'm not allowed to use it to buy paracetamol or lactulose, both of which I need.  DLA helps pay for these costs.

DLA helps me have some degree of independence.  I don't have to ask my partner to make sure I have food in the house before he leaves for work, because I can go to the local shop on my scooter.  I don't have to ask people to give me lifts if they want to see me because I can get a taxi to them.  I can get in and out of the bath without asking my partner to help me, because I have a step with a hand rail. 

Without DLA I would be trapped in my home.  I would have my scooter until it got a puncture and then I wouldn't be able to afford to pay the £45 to have it repaired.  I would slowly and surely sink into depression again as I faced spending all my time alone except when my partner came home.  It would put enormous pressure on my partner, who already shoulders the costs of running our home and does all the chores around the house.  He would have the sole responsibility of cheering me up.  I don't think he would be able to do that for long without becoming depressed himself.

It is a hard and lonely business being disabled, not to mention expensive. DLA enables me to feel that I am able to join in with my friends and family to a degree that I wouldn't be able, were it not to exist.

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