disabled people are not useless!

I have grown up quite happily in Britain.  I might not have had the best of starts in life but I reckon I've turned out pretty good! Apart from the small issue of having MS and needing help with things around the house!

It really frustrates me when I can't do something! At the moment, my hip is playing up quite a lot.  I refuse to let this dictate to me how I should live my life, despite the dribble of money that the Government expects me to live on. The only good thing to come out of my illness, well two things really. My car, which makes my life SO much easier; and my now ex-fiancée. We both have unusual forms of MS and met through a mutual friend, who suffers with the debilitating illness NMO (Neuromyelitis Optica/Devic's Disease). You probably have never heard of this before in your life so if you can be bothered, Google it; if not, it's pretty horrible! Can end up blind and it can also be fatal.

My ex and I started to email each other, she was a shoulder to cry on when I was so frustrated about my body not managing to talk to my head properly! I would say one thing in my head and my body just decided to ignore my head! I know I probably sound mad, I'm not! I just had to let off steam when things were getting on top of me, which seemed to be happening a LOT at that point in time!

Anyway, long story short, about 6 or 7 months later, she told me she loved me in more than a friends type of way.  I was flattered and realised I felt the same way so we decided to make a go of it! About 8 months later we were engaged, living together and flying high...or so I thought!

It took me until I was with her to realise I needed anti-depressants. My head was so muddled up after all the hassle I had been through since falling ill! My neurologist kept putting me on weird treatments, like Cyclophosphamide (a form of chemotherapy) and was even looking at more complex treatments to try and 'help' me! I felt like a guinea pig! It made me more determined to beat whatever it was that was making me ill and live 'happily ever after'.

I smoke cannabis for the pain caused by whatever illness was causing me to have a complicated life! I got a fact pack thing from the hospital about MS because that was the way they were starting to look. My particular neurologist was the MS specialist for the region in my area so I thought he is probably the best one to trust! How wrong was I?! I soon realised (well 4 years later), that I was just going along with every medication he chose to 'try' me on. I didn't read side effects on ANY tablet I was put on because then I would never have left the house because the smallest thing that happened, I would be at doctors trying to get another drug to 'help' that side effect.

After meeting my ex, we smoked a LOT more cannabis because it was the only thing that we could both agree would help our pain, anxiety and mental state of mind! It was the BEST escape I had ever experienced! For those few hours every night I felt like I could do cartwheels if I wanted to. Generally, all I did was sit on the sofa, making stupid videos and watching stupid movies. For those few hours, I was so happy!!

My ex started wanting to smoke it all day every day. Sometimes, I let her but I had to drive so thought it was probably best not to smoke it until after our night time meal so we could actually have a life that didn't rotate around an expensive class B drug! I had my sensible head on sometimes! Haha

When you smoke too much cannabis, it makes you sick! I spent a week of just drinking water and throwing up, couldn't take tablets, do my injection for my MS or anything. But I didn't care. My head felt like it was about to explode! I started writing things down. Might have gone through a mini nervous breakdown, but in my head, I had never been clearer! Everything in my life had finally made sense! Was weird. In fact, I'm not sure how my ex managed to stay all the way through it without calling the looney bin! I don't blame her for leaving me.

Now though, I have a much clearer head and can see how to solve my life problems! I might have MS and be 'disabled' but it doesn't mean my head is stupid! I can still use a computer so life will be just fine! It's a lot less stressful to be disabled in Britain than be Prime Minister!

I do, however, think that the government need to look after disabled people a bit better.  Just because I got ill at a young age and don't use a wheelchair, I have been pretty much told that if I don't return to work then I am useless! I have tried MANY times to better myself.  I got struck down with MS just before 2nd year at Uni was about to start.  I had 18 months off and then returned, part time though.  I was happy to be back learning but, after 6 months or so, I was forced to give up for good because the stress was causing my legs to start getting worse again quite rapidly. It was a choice between body and mind really. I realised that I didn't have to be in University to learn things so decided it was more important to me that I was able to walk and have as 'normal' an existence as I could manage.

So, with my body not being able to handle the pressures of University, I was forced to give in and admit I have MS and would probably never cope with a job as my body is unable to handle stress! I claim benefits. Most people would probably say that's acceptable, well, most NORMAL people! Not the government! I was told to go to a centre to help me get around to going back to work. Nobody in the 'system' understood that to me, and many other disabled people in a similar boat, work was too physically and mentally tiring to manage on top of everything else we cope with on a daily basis!

I would LOVE to work, I have always wanted to be a primary school teacher! Instead of being depressed about the fact that I cannot fulfil my childhood dream, I now spend more time with the children in my family. It helps me forget for a few hours that I am so sore. Instead of doing lots of things that cost money, I tend to have them to stay with me for a night to give their parents a break and watch dvds and play games in the house. I also spend time with my best friend's two little ones too. My friend and I are in similar financial situations, we both have to live on benefits, so finding cheaper things to do is not as hard as I would have guessed. Today, for example, we went swimming. It does cost money but it is a great way to tire the little ones out and, as it is in water, it serves a dual purpose of helping me exercise without too much pain. Other days though, when I am not too sore, we take them to the park, or do craft things indoors, or just go for a drive and little walk somewhere.

Having my car, courtesy of the Motability charity, has made life a LOT easier. I used to rely on taxis to take me places. I live on a steep hill so trying to walk down or up the hill is painful, even when my hip is not as bad as it is now. There is an hourly bus service, which I tried to use as much as I could. However, I suffer with a form of Acrophobia so, being forced to stay out longer than I need to be in a busy place is my form of hell! My Acrophobia has only developed since I got ill, I was always a VERY sociable person, from a young age. My friends that are around the same age as me like to go out to pubs and clubs which is classed as 'normal' in this country and I never used to complain! :-) Since getting ill though, I have a panic attack style reaction to being in busy pubs, let alone a club! People are also very rude so it puts me off because drunk people are worse!

When I first got ill, I walked with one elbow crutch so people could see I was disabled but, through hard work at physio, and at home, I got off my crutch and was walking unaided after about a year or so. I am a bigger person so people can't miss me! I am also 26 and don't dress in a grown up 26 year old way because baggy jeans and hoody makes my life easier for getting dressed and going out so I choose to wear them. It is like I am completely invisible to EVERYONE! In a pub, people would walk in to me, barge past me, knock one of my legs or hit me in the back, not on purpose though.  In shops, the same things happened! Anywhere that was busy really. The thing that got me was that the same people would at least have said sorry if I had my crutch but I refuse to use an aid to walk when I don't have to! I know it would make people realise I wasn't just being grumpy when they walked in to me but I don't want to make my body get lazy and get a lot worse just because I was trying to show people I am disabled! I know MS sufferers tend to end up in wheelchairs but I don't want to encourage it to happen to my body faster than it has to, if at all!

Now the new Sativex drug for MS patient has been licensed, I thought I could get that and stop smoking cannabis as it is a cannabis based medication. I was wrong. I tried talking to my MS nurse about it and she said to try another drug first, as the rules said that a patient had to have been tried, and failed, on 2 antispasmatic medications. I never understood that rule seen as I had PROOF that cannabis helped me! None the less, I was happy to go along with it. When the nurse discussed it with my consultant, he said no and told me to go to physio again! It felt like I was just going in circles so...I wrote him a letter!

It was really long, telling him EXACTLY what I thought about him and that I would stop taking all of my prescription medications, including my MS injection, if he didn't at least consider letting me do a TRIAL on the drug. His response made me laugh. He didn't like my 'tone' of letter so I now have a new consultant! RESULT!!! haha. I haven't seen him yet but, when I do, he is going to discuss Sativex. Why do doctors play God with people's quality of life?! Nobody, apart from me, can tell me what to do with MY body!

So, after my letter to my consultant got him to LISTEN for once...I wrote one to David Cameron telling him my opinion too!! It was a loooooooooooong letter! Not in an offensive way though, that doesn't get anybody to listen!! I also wrote another letter, justifying my opinion using life experiences of me and close friends and family! I have still not heard from him! I do not want to blackmail him, or even claim credit for my opinion, I simply want him to realise that people who CANNOT work, are not useless, and treat us better!

Motability is a great charity! I would be lost without my batmobile (I have batman logo on bonnet). I agree with the government stopping rises in petrol prices, it's about time! However, they set VAT to 20% so prices on most other stuff has jumped up! I understand that the government have lots of hard decisions to make about budgets etc but they NEVER take pay cuts! Why can't they be paid a lower salary and give people who deserve the money a little bit more to live on! I'm not suggesting minimum wage, although that would make me happy too, I am simply saying they should not be paid large salaries for being a politician, if they really wanted to be in politics for the RIGHT reasons they couldn't possibly object to such a suggestion! All politicians should be more interested in creating a more peaceful country to live in for EVERYONE than about how much money they can con out of the tax payer by claiming expenses for the STUPIDEST things! Even now, there was a report not long ago about the new things politicians would be able to claim! WHAT?!! They don't get enough already?! If their expense claims were done as strictly as a shop or a bank, the country wouldn't be as money orientated as it is because our supposed 'leaders' wouldn't be showing the population that claiming falsely is acceptable!

Why did it not cross ANY of the people's minds that were claiming fraudulent expenses that what they were doing was wrong? Why did nobody feel bad about claiming money for staff or rent on a house they didn't even LIVE in? Why are such idiots in charge of the budgets for NHS and councils? That's a scary thought!!! Every party was guilty of it so why should we trust ANY of them?

Why does every person that isn't 'perfect' have to feel like a failure? Why are we so obsessed with 'perfection'? There is no such thing! Every single person in the world has their own flaw! It is NORMAL! Anybody that cannot admit their own flaw, is a liar! So the only way to appear 'perfect' is to lie?

My flaw is that I can't work! But, in order to get the benefits to live in this country, disabled people have to use their 'worst' day as a reference when filling out forms. My worst day is not leaving house because I am too sore to walk about in my flat, let alone go outside on to the uneven pavements or roads! However, if I am out and about people will say "you look well" or something as obviously stupid. Nobody sees me on a 'bad' day though, not even my mum! Writing stuff on the form is harder because I hate the feeling that I am lying but I'm not!

Disabled people are not benefit cheats but, without a wheelchair or crutch, people are so judgemental and prejudice that they assume they are a 'bum' that doesn't want to work! I would LOVE to have a degree and be teaching or at least training but MS is not a very easy illness to live with on a daily basis with all the 'invisible' symptoms so my dream will possibly NEVER come true but I am happy trying to just live life to the full and get on with the life I have got while I have it.

I hope David Cameron does reply soon, I will write him a new letter every month until he does if I have to, or every week! I just want him to consider someone else's perspective on life in Britain!