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What does one do? have you ever had one of those moments when you just don’t know what to do? things are changing so much for me lately I am having problems keeping up with it all. I hope by writing some of it down it may help, however I did the other day and after writing 10,000 words I was totally lost and just didn’t know what to do. So I am writing this a little different as I would a blog in the hope you can help me.

The thing is this, my disability is changing so much the last year or so I not even quite sure just what I can do anymore. As a child pain and barriers never ruled my day and even with limits I could do pretty much anything. I am finding more and more now that I am struggling to last a whole day without having to lay down as I am in too much pain. Normally its back pain as I can’t walk straight my back gets twisted and it makes it very hard to do stuff. I never had these problems until I broke my leg in 2005 I was quite happy standing on my right leg with it taking all my weight but now I am finding that I can only stand for about 30 minutes before I have to sit down as its just too much. This is the same for walking. I also having problems sitting down too. While writing this I am sat in a open back chair with no support on my back, as shown in picture and I am in so much pain I am having to rock back and forth to stop my back from going into spasm.  I used to use a wheelchair most the time when I was at work before and this helped as when I got home I could do stuff I wanted without having to rely on my wheelchair. Since changing jobs I am unable to use my wheelchair at work, plus my new flat is not wheelchair accessible so now I can not use my wheelchair at all on a general day to day basis. This has meant that when I get home I have to lay in bed most the time and get up when I can to cook food, go to the toilet and do house work.

oh ouch! I have to move. Going to sit on sofa too much pain. Lets see how long I last here. The problem I having is dealing with every part of my syndrome is just too much. There are areas that I can ignore and concentrate on others. Having to deal with it all is just too much, it just wears me out. So I am guessing I am having to list just what I can and can’t do and work out which areas I can ignore and which I have to deal with.  Walking seems to be a big area that causes me pain so by getting out my wheelchair causing myself discomfort by doing this and should I say “no, I not going to do it?” the problem I have with this choice is its limits me in so many ways and as well as not keeping my strength up in my legs it means that it limits me within the work I do. The other areas I have problems with is hearing and speech. I have to concentrate so much on other peoples speech and just what they are telling me it makes it hard to understand just what they are saying. This is made worse by finding the right words to say back to people. I will often not know how to construct a sentence and have often said things that people have looked at me back and said “what?” I quite often get ignored as being stupid because I haven’t been able to get my point across. I get really hurt when this happens as I know what I say is a clever idea  but only need someone else to see it is also. I will think that sometimes I am stupid and what I think is a good idea is stupid, I just not seen that.

With both my mobility and hearing being my two most visible impairments. There is more severe hidden impairments that people don’t see, ones I battle with everyday. The most frustrating for me is the difficulty eating. It really is one of my pet hates and I really do hate every minute of seeing food, eating it and then having to recover from eating it. It really does knock me out and I really do struggle having to keep focused afterwards. More or not I have to lay down and give myself time to rest. Talking of which I need to do now.

Back again! Where was I? oh yes food. Anything to do with my mouth and swallowing just really pisses me off. I like to talk as I think its good to get my point across but the effort it takes to understand people is so hard and with not knowing just how they are receiving me makes it so much harder. I normally come away after talking to anyone thinking, Oh God what just happened? I became so confused with this at one point I stopped talking all together as it made life so much easier just having one way conversations. It also meant because I wasn’t talking the ability to eat better was there as I wasn’t placing so much strain on my muscles to talk and swallow. One thing I have notice is that when I talk I dribble a lot and this causes an additional effect of chest infections and feeling heavy to breath.

I have been looking at jobs that I can do with my limitations its been really hard. I think I need to work alone doing some sort of repair job. this could be building computers or process line work. The problem I think is most manufacturing is done by computers these days. I have been looking for companies who need someone to do testing or something. maybe design or research could be good but I tend to find that design or research is done as part of a team. I like working with teams but I also think that sometimes I struggle to understand others.

I guess the first question I had to ask myself is do I try and keep my current job? I think my employer doesn’t want me there as they feel I am putting my health at risk and as an employer they do not what me to do that even if I am happy to do that myself. I have always had an understanding that every day for me is a struggle and its that struggle against my disability makes me a stronger person and gives me respect. By stopping that struggle people would just give up on me and I end up getting worse. If I thought I could give up on work to earn a living and carry on doing voluntary work I would jump at the chance to do that. I love doing the voluntary work I do as I can take a rest when I want and still get the same amount of work done if I was working full time. The way things are with the government at the moment I can not see the job centre allowing me to give up work and claim benefits. I have never claimed benefits apart from DLA in my life. Now I am 38 and feel that I am beyond the point of being able to work for someone else without them getting worried about my health.

The only choice I have left is to work for myself. I have been thinking of trying to learn how to write programs for android devices. I think I maybe able to use my skills working with people with disabilities to make them more accessible to everyone. I think there is so many for Iphones or Ipads but these cost a lot. I would be able to make something for android. I haven’t looked into how easy it to learn the language to program but its an idea. What do you think?