Have never done a blog entry via an IPad before neither have I done
one sat next to a pool in what I would call paradise. I am currently
spending some time away from work and homes, spending it with my best
mate from Portland college Kevin in the Algarve in Portugal. This was
a very last minute decision for me as I didn't know if I needed to
return to work or not. After hearing nothing on monday night I thought
to myself sod it, I'm going. Not knowing when the best time to return
I've booked a one way ticket. I would be nice to know how long this is
going to last but I am just enjoying the sunshine while it lasts.

It would be very nice to live out here all the time. I know Kevin
would support me with the process but I don't think I got the bottle
to do something which is a mad as leaving the UK. I think if I was to
move anywhere it would be America or Oz. This would be just because
off my computer skills I think opportunities in both those countries
would be better. It seems specially here in the Algarve people in
generally don't have much money unless you live in the very posh
villas.

I think it's important to have a place to come and relax and chill out
Portugal does this for me. I would love to had that chill out factor
at the caravan but I am always trying to fix something there or pay a
bill, the place just costs me so much I could come out to portugal
once a month for the same cost it takes to run the caravan. Most the
time I spend just reading here, I would love to come here to write my
book it's so quiet and peaceful it would be prefect to sit here on a
lovely MacBook Pro. iPad has been nice to use out here but not sure I
would want to write a whole book on one.

Download | Duration: 00:04:45

Well, this probably wasn’t the cleverest thing I done. What is more worrying is my doctor has allowed me to do it. Is she trying to teach me a lesson? Maybe she understood my reasons behind what I wanted to achieved and thought to herself what’s the worst thing that can happen, Mark could end up in hospital. Being I have asked to keep the same doctor every time I go to the surgery she should know my case well enough by now to know just how much of a impact coming off such strong medication would do to anyone.

So what was I aiming to prove?

There is a few reasons why I asked my doctor if I could come off all my medication. I not sure just how much it was helping me. The last few months I have been feeling pretty shit and I wanted to know just how much of it was side effects from the medication and just by coming off it things would go back to the way they where. I have been put on so many tablets it takes me about an hour to pop them into my dispenser, until I get the medication right its pointless getting the chemist to do this as if I took the full dose of all my medications everyday I wouldn’t be able to move. This should have really given me an idea coming off them completely was a incredibly stupid idea. This is why I asked my doctor first was it safe to do so, she said yes. Well, apart from the ones for my blood pressure but to be honest I think they are the ones which are causing the nightmares hence given me broken sleep and making me even more drowsy so when taking pain killers that also make me drowsy it becomes next to impossible to drive.

In an ideal world I would just give up driving and say I don’t feel save. I know this would cost me my job and something I am not allowed to do. people say I am strong for doing the things I do. I maybe but that’s only because I am scared of what happens if I don’t. short of doing something stupid everyone believes that the job I am doing is the best job for me apart from my employer who seems to think that if they don’t help me then I will leave and they can pass that blame onto me. This is what the DWP will also say that I have made myself unemployable therefore to get lost and find another job.

Realizing just how much medications have been helping, I guess now it’s a stupid idea to come off them. My muscles have gone into such a spasm you may as well be stabbing me with a knife, talking of which I bet that wouldn’t even hurt me anymore. I have grown so used to being in so much pain I don’t think anymore would matter. That brings me onto doing something stupid. Whole question is just what. All I want is someone to help me. The last month people have just sat there doing nothing. Work have being a total bloody arse and given me no support to return to work. All I have seen from them is them standing there with their legal stick waiting at the door too beat the shit out of me. I don’t want another legal battle. I have had 3 of those already and I hate it. The only people who lose out is them. All the companies I have worked for that took me on have either lost staff because of it or have just gone under.

What makes all this just a load of shit is there is no reason for it. I have no reason fight. I have no children no partner or family to fight for. The only thing I have is the friends I have made but are powerless to do anything. It upsets me you are powerless to help as I know just how you must feel, I am powerless to help myself. I wish I knew what to do, coming of the medication wasn’t the answer I know that now. I don’t think I am on the right tablets but this is all that is on offer to me so I either take them or give up. My real concern at the moment is I don’t want to snap I am so close to breaking and have been for so long now something needs to happen. I just don’t want to do it again on myself just thinking of it has put me into a state of tears and I am so stuck in a corner with the shit being kicked out off me from ever direction I am hoping one of them will give up and stop. The problem at the moment I don’t thing each person has realized just how much they are hurting me and just how much they have kicked the shit out of me the last year. I also feel that most people are just sat watching either ignoring it or just powerless to help, or even worse is too chicken to help. To translate that into something you will understand if you are one of those who say “Mark, will pull through he is strong he always does” you are one of those who are too bloody chicken to help me, unless you are just one of those who don’t know me in person and are powerless to help. Either way it looks like I am doing this on myself again whatever I decide to do.     

Download | Duration: 00:04:13

Right as I have a moment of clarity I going to write some of this down. I am able to think straight today as from yesterday I decided I just have to take matters into my own hands. So I went to the doctor yesterday and they have agreed that I can come off 95% of my medication which is works main cause for concern. I am very wary about saying too much on here as I got a feeling after receiving a copy of a report sent to my GP yesterday I now have the written evidence I needed to show this to my solicitor and turn this saga into a legal battle.   

For too long I haven’t had much in writing from work the very cleverly worded emails and a few patchy supervision notes but on a whole on the face of it seems like they were trying to help me remain in employment with them. Reading between the lines the report sent to my GP yesterday it appeared like they wanted me to return to work. The underline issue they have is that they are insisting my disability is stopping me from doing my job. They have no vision or understanding of my disability what so ever. Under normal circumstances this wouldn’t be a problem. They told me from the start they didn’t want to know what my disability was and how it affected me.  There was a small issue about the time I had off sick in my last job. They told me there was no need to explain but asked if this is normal for me to have this amount of time off. I said no and gave them the main reason I was off sick and asked if they wanted more information, they said no.

Throughout my time there I have been scared to take time off sick especially if this has been linked to my disability. The only time I have taken off is due to an ear infection. I thought this would be ok considering the company supports people who are deaf they would understand this is an unavoidable part of deafness. Even on returning they did not believe me that it cleared up and asked me to get a fit for work certificate from my Doctor for having 5 days off work, my doctor was happy to do this and I returned. I am not sure if it’s normal to have to now get a certificate for every time you have had time off work?

My employer has become increasing lacking in confident in my ability to do my job,  I feel they have been so unjustified in it. I have seen other staff make much more mistakes than I have but because I can’t question what happens to them so could never prove that I been treated any different but one of them got a promotion. That was until I received a copy of a report send to my GP. I now believe I have enough to ask them why? They are saying that my disability is now their business and they have a right to know. I have only ever fallen over twice while at work and trip and broke my finger once. I have been 100% honest and reported these to work and filled out the correct reports. I have been asked twice to attend a medical by my employer, both medicals have come back with the same result that I am able to do the job and I have enough ability to assess my surroundings that I would not take unnecessary risks to my health or the health of the people I work with.  On both reports my employer has said I have fed the assessment force information and not told them the whole truth, so they are ignoring advice in the reports.

I am yet to see how my disability becomes my employers business unless I have taken time off sick because of it. These are issues speaking to my solicitor today she feels the report could be seen very clearly as potential harassment and bullying. Work has no grounds to say that I am unfit to do my job and have been advised on more than one occasion to carry out an OT assessment which they have only accepted to do. Work has told me even if I get a fit to work certificate from my doctor they will refused to allow me to return. She said if they do this then go home and if possible get this in writing but if they refused and are willing to pay you then go home.

Download | Duration: 00:03:20

 I quite often get thoughts rattling around in my head but rarely get the chance to put these ideas onto paper. This is normally because I am too busy trying to deal with a spas attack or just unable to move.

I was determined to get this one down into a blog. I have been struggling the last few weeks to come to terms that I may not be as abled as I think I am. I have spent most my life being told that I can’t do stuff and this normally leads me to prove them wrong and go and do it anyway. So far in my life I have found this has worked for me, like they say live your dreams.  I have noticed many of my fellow disabled counterparts are losing their independence because of cut backs made by the government. This is having a knock on effect on me. I used to get very little support before, I had the occasional physio sessions here and there, sometimes a bit of counselling from time to time but on a whole I was pretty much able to do what I wanted.

I have noticed now I am not getting this help the only help I am getting is being prescribed medication, the side effects of this is its making my CP worse. I am now getting to the point where I am unable to look after myself. The problem this is cause me is that now when I get told I can’t do stuff I really can’t. No one wants to help me achieve it and no one thinks I should. A big example of this is work. 10 years ago I was able to manage other people and track all over the south east of England attending service calls. Has my disability got worse? Has it heck! If anything I think it’s got better my speech is much better than it was 5 years ago, my throat infections and ulcers are much better than they used to be, I used have a ulcerated throat nearly all the time before. I now have digital hearing aids allowing me to understand more of what people are saying. I am spending more time out of my wheelchair.

So what is going wrong? I am seeing from what other people are doing the more they help myself the less help I getting from others.  So should I just sit here and do nothing in order to get my independence back? What does it take to make people listen to you? I would love to say to myself bollocks to them all and just go and do things myself but I know in the long term that’s likely to cost me my life. I know in the pass when I have really pushed myself to do something I ended up crashing the car or something as I just not been able to react quickly enough to something. My car is the only real independence I have left. I know I could easy say to doctor or medical professional I am worried about the effect my medication is having on my driving and they would take my car away from me without a moment’s hesitation, do I really want to do this? Will it make people realize that I have now lost all my independence? Am I just being over dramatic about it? After all what I really want is some help with the things I had before and maybe some help at home. Maybe if Social services refused to pay for care support for me I should pay for this myself out the little DLA money I have left.   

http://www.guardian.co.uk/society/2011/may/15/disability-living-allowance-scope-cuts

Further to my story published in the Observer newspaper last Sunday 15^th May. I received a phone call from the BBC Surrey Radio program who said they would like to interview me. I spoke to a presenter on Monday who spoke to me in length about how I get treated by the public with an attitude that all disabled people are just living off benefits.

I have been trying very hard to hold down a full time job with very little support from the government to carry on working. I have had to take a massive cut in wages since going part time as my employer is unable to employ me full time. I refuse to give up and carry on working part time and doing voluntary work when I can. I have so little money after paying for my own care and bills around the home. I know I would be better off on benefits but I think it is good to show employers that disabled people can work if they are given the correct support.

My disability is often getting questioned both by my employer and the general public. I feel quite upset over having to justify why I need some adjustments made both within my work place and when I am out shopping. I try really hard to hide my disability as I don’t like it when people give me that look, to all disabled people reading this will know the look I mean. It is even worse when people shout out abuse at me. I have had to come home in the pass feeling unable to go out sometimes because abused has been thrown at me.

You would think it would be just teenagers who would do this. Well, you would be wrong a middle aged lady felt the need to question why I was parked in a disabled parking place at the local supermarket the other day demanding to know what my disability was.

Here is a recording of the radio interview I had with BBC Surrey.

Download | Duration: 00:08:32

Full program on BBC Iplayer for the next 6 days scroll to 1:37  to listen to me

Surrey Breakfast with Nick Wallis

Download | Duration: 00:07:09

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?

Download | Duration: 00:08:10

Being signed off work this week hasn’t really helped my state of mind. With the Hardest Hit protest on Wednesday facing the prospect that I could be job less scares sweet living Jesus out of me.  I have been quite lucky I have had enough energy in my time as an employee to fight for my right to work by standing my ground when employers have used my disability against me.  I try my best to hide the effects of my disability from people and manage the after effects when I get home in the evenings and weekends.  This has only ever become too much for me once before back in 2003 when I had a mental break down and decided to give up and never to try that hard again.  This affected me in many ways. The two which people noticed the most was because of my difficulties with swallowing and eating I decided I must rest my throat muscles to use them only when I needed too primary for eating and drinking. I was very underweight and need to eat better foods. So I stopped talking and became a selective mute in 2004.  This gave me a chance to rest my voice and by not speaking up for myself I was able to blend into the background and be ignored. I totally lost my confidence and I was ready to give up on life. I knew that I could no longer achieve what I hoped for as a child and everything that was told to me as a child to push myself was total bollocks.

It took me a long time to recover from the trauma and I was able to cover most of it up. Most people didn’t know I was a selective mute and those who did didn’t care to help me.  I ran away to Nottingham and spent 5 years there in isolation from my friends and family. I thought I could manage with my online friends from AOL but this was quickly disappearing and I was feeling quite low. This was until I met my girlfriend who changed my life for ever as for the first time in my life I thought that I would stand a chance of leading a normal life and get a job near her house in Worcester and we could move in together.  I spent 2 years from 2007 to 2009 trying to find work but no employer wanted to give me a chance.  I knew this was because I have now ended up in a wheelchair and this is all they could see.

I had to fight again. I knew by not pushing myself I would never get what I wanted which was the job that I was able to do and live with the girl of my dreams. I was totally gutted when this didn’t happen and after trying everything my relationship broke down with my girlfriend and my dream of moving from Nottingham to Worcester was shattered. I had reached an all-time high and it was taken away from me again. One for not giving  up I knew my ability to whole down a full time job was possible and by now I have managed to stay out my wheelchair for most the day and only really using it to go shopping in Town and food shopping at Tesco’s, those stores are so dam large.

I looked for another job anywhere in the country and found one back down in Surrey not far from my old home in Sutton Surrey. I applied for the job and got an interview, before I could even get back home to Nottingham they rang me up to tell me that I got the job. Woohoo! Great I thought I working for a great charity who support people with Learning difficulties. I was sure I wouldn’t get any problems after-all they are a charity who understand disabilities. What could go wrong?

It didn’t take long for things to quickly go downhill. Questions where being asked about my ability to do the job and health and safety was brought up that I shouldn’t be walking if I was a registered wheelchair user. I couldn’t see what the harm was. I have accepted that I wanted to walk and all I asked for is maybe in the winter when it cold I would need time to rest as the metal plates in my leg cause me problems in the cold. My employer wasn’t happy with this and after already having one medical before I started there they asked if I would have another one. I agreed and went along to the medical. The doctor who did the assessment felt considering my impairments I managed my disability very well and signed me fit to do the job. This wasn’t good enough for my employer they said that I mislead the doctor by not going in with my walking sticks, wheelchair or hearing aids. I told them the doctor assessed me without my aids and still passed me fit to work, so with the use of my walking stick and hearing aids etc I should be more than able to do the job. They disagreed, my hours where cut from 37.5 to 22.5 hours a week. Even with Tax credits this was a drop of income for me of just under 7 grand a year.

I have been struggling ever since to convince my employer that I am able to do the job. I feel they have been setting traps for me to trip up. Most of them I spot but some I don’t and with no one behind me to support me going into supervisions at work is very stressful time for me. To sit listening to just what I done wrong even though the things I do are not wrong just different. I called scope in to help and they have tried their best to help me but even from first contact with Scope my employer became very defensive towards them.  I have had an uphill battle for the last 9 months to keep my job and even if I have to go off sick for 1 day my employer questions whether or not I should come back to work and send me off for another medical.

I had a massive personal disappointment 2 weeks ago while on holiday and it really knocked my confidence. I was due to return back to work but as I was only working 2 days the next week I decided that I would take the two days off to get over the disappointment and anxiety I was feeling so I would be fit and ready to return to work. On returning to work after having the two days off my employer refused to allow me to return to work unless I had a medical certificate from my GP to say I was fit for work, I was gob smacked.  I only took 2 days off and now they are questioning my ability to come back to work. Anyone else they wouldn’t have said a word. I went back to my GP quite upset that I had to justify why I taken only 2 days off. My Doctor felt because of my employers concerns and to help install some confidence into them maybe it would be best if I took a week off to make sure I have fully recovered. I said I was ready and with the new pain killers I was on helping my muscle pains and spasms I feel it would be best to get stuck in. she disagreed and signed me off work for a week.

That week is now coming to an end and I am due to go back to the doctor as even with my sickness note running out on Monday my employer wants a fit for work note before I could return. Well, this is what I thought they wanted as it is what they asked me to do last week. I received a letter this morning from them saying even if I do get a fit to work note from my GP they are refusing for me to return back to work until I have another medical and OT assessment. This will be my third assessment by my employer. I am getting rather fed up that I have to keep jumping through hoops to prove to them I am fit for work.

All these tests and assessments are really getting me down and I have been feeling quite depressed and suicidal about it. I want to give up and not try anymore but I know if I don’t try to pass these assessments again I just end up on the jobless list and then having to go through the whole process in reverse with having to prove to Atos that I am unfit to work so I can claim benefits. From what I have seen its going to be very unlikely they will make me unfit for work considering my doctor thinks that I should work. Just why will my employer not just accept that I can only do so much and be happy with that? It seems to be all or nothing with them.   

I attended the “hardest hit” March in London today. I was very nervous whether or not I would make it into London. My pass experiences have taught me getting into London is not an easy challenge for me. However I felt it was important that the government took notice of us disabled people. The cuts that have already been put in place have affected me at work as Access to Work no longer pay for equipment. I have had to pay for this myself. Cuts to my medical support means I am no longer able to see a physio, I used to get physio once a week to help with my muscle spasms caused by my cerebral palsy. The government are saying we are not going to get effected by the new welfare reform but we are already been hit by cuts made by local councils and central government.

I work in social care and I support many adults with learning difficulties who will lose their Mobility component because they live in Residential care this money goes towards paying for my services to take them out into the community to access day centres, shops and social events. I have been struggling because these cuts have been made the people I support are no longer able to use my services and with my employer being a charity they are unable to fund my job full time. This has meant I have had to take a cut in hours and work part time, leaving me 100s of pounds short in wages every month.

If the government decide to take my DLA off me this would leave me without a mobility car that I use to get to work. With the cut in my wages Tax credits doesn’t replace this loss income and I am having to make cuts myself. I am totally shattered by the end of the day, by the time I get home I am far too tired to cook. I used to be able to eat out or buy takeaways but with very little income I am unable to do that now.

I have been very pleased with myself today that I have managed to get up to London to show my support to say how these cuts are going to affect me and many disabled people like me. I didn’t manage to do the whole route of the March as it was just too far for me to walk. I joined the march at Big Ben and walked pass the House of Commons down to Victoria tower gardens where I was able to sit down and catch my breath. Today has shown me just how hard I would find coping without my Mobility car if I had to rely on public transport.

 I am very lucky I have had a week off work to recover from today but it will be back to work as normal for me next week struggling with very little support from the government and the fears there is more cuts to come.   

Download | Duration: 00:02:32

There are many reasons why people volunteer. I want to give you all a personal account why I love Volunteering at MERU. Being disabled holding down a full time paid job I find really hard.  There is so much pressure for me to perform and complete tasks, I find this really difficult. I now only work 3 days a week in a paid job so in my free time I can volunteer for MERU. My background is engineering and computers but because of my disability I found it next to impossible to find work within this sector.

MERU gives me a fantastic opportunity to use these skills and give back a little to the community that I am unable to earn in wages.  There is a lot of talk these days about benefits being cut and I am very worried myself if my benefits like Disability living allowance get stopped. I have tried really hard to work full time but my health has suffered because of this.  My benefits allow me to do voluntary work like working at MERU. My disability living allowance provides me with a car so I am able to drive to the MERU workshop a few miles away from my house. Without these benefits I would have to attempt to work a full 37.5 hour week. Something both my Doctor and Employer say is putting my health at risk and was making my Cerebral Palsy very hard to manage.

By Volunteering I am able to do really cool stuff like join the Design team and factory workshops. It gives me a chance to work with great bunch of people and really feel part of a fantastic team. If I am having an off day and not feeling well this is not a problem as I am volunteer I just let MERU know and they are totally fine with me not being able to attend. Volunteering has given me a real sense of achievement without the pressure of having to worry about targets, taking time of sick and worrying about who is  going to do my work when I am not feeling well.

MERU is a great charity that makes equipment for children with disabilities. They helped me when I was a child. They provide equipment that otherwise would not be available on the market. Coming up with ideas too enhancing the lives of children and making such a difference to their life’s as it did to my own. If you would like more information about MERU take a look at their website www.meru.org.uk

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Has really be struggling to write this blog this is mainly because I have new followers  on Twitter and friends on my facebook and I don’t want you getting the wrong idea about me. Another real key factor has is I haven’t been feeling myself lately, so much so I have been off work now for nearly a month. Most of this is because my doctor doesn’t have a clue just how to help me. they have had to refer me to mental health services just to get to the bottom of things as I now have point blank given up trying to explain to so many different doctors just what the problems are. None of them talk to each other and have no idea just why I am on so many different medications and what effects they have on me on a daily basis. My employer isn’t much help either and is in total panic on where they stand. Despite saying they are not like other companies as they work in social care so understand my needs. They are acting very much  the same or worse than other people I have worked for in the pass.  They don’t want me to do anything that could in any way affect my health so without lying to them, something I really crap at doing, it’s hard to hide my disability from them.

The question I had to ask myself is why am I hiding my problems of my disability in the first place?  This is quite simple really and something which the Independent on Sunday are going to publish in the newspaper next Sunday. I was hoping the article would have appeared in this Sunday but looks like maybe next week. That is people just don’t want disabled people in their work force. To be quite frank I don’t blame them. Why would you employ someone who needs adjustments in order for them to carry out their job when there are queues of people without any impairment willing to do the same job?  From a personal note I know what job I can do without little adjustment and it’s been proven that I can do it well. That is teaching ICT. I was a Cisco certified instructor and the students I taught said that they found my method of teaching very hands on and liked working with me. Noticed I used the word ‘With’ this is something I have always done ever since I started work leaving school, it’s something that managers find difficult to deal with. I don’t believe anyone should have the attitude they are better than anyone else. I have had to manage people before and I always give people respect and allow them to make their own choices. It’s something within my current role as a social care worker I thought would be really useful. Giving the service users the choice to do what they want is something the company I work for say is their primary target. In practice it is quite different. I have not yet been allowed to make any mistakes without getting a right ear bashing off my manager and get constantly reminded of those mistakes every week.

Realising that my work isn’t helping my mental state of mind I decided that I must do something else, something for myself.  I tackled this in two ways. One was to volunteer for MERU a wonderful charity that makes bespoke equipment for children with disabilities. I love Volunteering for MERU and it’s a charity that has helped me when I was a child, so volunteering for them now really gives me a sense of achievement and I am learning new skills every time I go there.  The only problem I have with volunteering at MERU is my energy levels. I never have set hours I work every week so fitting these around the times I can volunteer at MERU is hard but they are really great and allow me to come in when I can. I only wish more companies where like MERU.  The other thing I had planned was to do a flying scholarship. I love flying, well ok! I only done it once but have always liked the idea of how free you feel in a plane. I get the same sort of sense in a car but in a car you are limited to road and traffic living in London isn’t a great place to go out for a drive. Sadly for me I didn’t get the scholarship so that great idea didn’t work out. It broke my heart not getting it as I put so much effort into getting to RAF Cranwell for the final selection process I am pretty sure I couldn’t do that again. Maybe this was the reason why I didn’t get the scholarship. I am pretty much on the edge of breaking point dealing with my disability maybe they thought it would be too much for me.

This brings me onto another point. Being able to do something and wanting to do it. I have always been the sort of person if I have wanted to do something I will, being disabled or not. It is an interesting word ‘Disabled’ one I have refused most of my life to consider myself to be disabled. I have grown up with my impairments and I totally understand just how they limit me doing stuff every day. It may take me a little longer to do stuff but I get there in the end. This attitude is changing today. I am no longer allow to take longer to do stuff if I can’t do it first time and correctly people don’t want me doing it at all.  So this really comes back to the question if I am pushing myself too much then why am I not achieving the goals and targets set to me by work? Am I doing a job that I shouldn’t be? If this is the case then why will no one admit it? My employers told me they had no problem employing me as a disabled person so why is it a problem now?

My primary focus at work has always been to earn enough money to live on. I enjoy good things and I like my toys and gadgets. I worked hard when leaving school to obtain qualifications so I could do this. My School never believed in me either this is why I was never allowed to take my GCSE’s little ironic considering 2 years later I left college with 4 ‘A’ levels.  We would love a job that we enjoy but its rare these days that happens as a disabled person I really don’t expect it but as long as I am earning enough to live on I don’t care. The reason I don’t care is because if I am earning enough money I can do the stuff I want when I get home, providing work doesn’t take too much out of me.  Where does one go now? I think my days are numbered within my current job. I have tried to work in social care before in a residential home and it didn’t work out. The company I work for no say they are different but it’s clear they are just like everyone else.  What worries me getting anyone to admit it, they would hate me talking about them openly on the internet but personally I don’t care. I approached scope to help me within my work but they seem to be really snowed under with cases. They have sort of made my employer realize they cannot be treating me this way but as yet nothing has been put down on paper. The fact I been off for a month and still waiting a reply from them is not good.

The future! I have approached another charity about employment and I hoping they are not going to take the same view as scope did that I can do my current job and it’s all about adjustment. My employer has made it very clear they can’t make these adjustments it’s not reasonable for them to do it.  They feel by cutting my hours is the best adjustment they can make and that if I am unable to do these hours then I should consider leaving. Scope where not prepared to consider the fact that I can’t do job despite following me around for 2 days and recommending adjustments my employer refused and they just left it. I have been desperately looking around for other work. I have also been asking myself should I be working at all? I would love to be in a position where I could live with someone and not have to work. The only person who is willing to allow me to stay with them is my parents and I don’t really fancy moving back home, not that it’s ever been my home.