Hi Mark

What do you actually do as a job? I have spastic diplegia cp affecting both legs. I used to work but started getting a lot of pain and suffering from really bad fatigue.

I had a chat with the disability employment advisor at my local jobcentre and she told me I could get taxis to go to and from work under the Access to Work scheme, before that I was walking to and from the train station each day.

I was working for my local council at the time and the disability employment advisor suggested I let her ring them to talk to them about options. I was working 25 hours a week and through the Access to Work scheme they put in a support worker to support me for 20 hours a week.
It helped as it meant I didn't have to be standing up and walking about and carrying so much especially when I was tired (I worked for the library service). But it didn't make the problem go away completely.

I changed jobs twice and in my last job I was working 20 hours a week this was just in the afternoons and I thought having the morning to rest would help. But I was always taking on extra shifts!! In the end I spoke to my employer because I was going sick every 3 or 4 weeks for a day or two due to pain and fatigue. Again they were good and reduced my hours down to 16 hrs a week, after awhile the same problems started. This time there wasn't any more my employer could do and I was eventually advised by the jobcentre to stop work for health reasons.

It might be worth seeing if your local jobcentre have a disability employment advisor and having a chat, also talk to your employer again. If worse comes to the worse maybe look at doing a different job?

As for the fatigue I don't think there is a quick fix for it if there is I haven't found it yet!! I've learnt much as it annoys me to live life around it but sometimes that's easier said than done.

Good luck
Helen

Hello Helen

thank you for your reply. I work with adults with learning difficulties in the community. it means I am out and about visiting them in their own homes day centres and take them out into the community. I used to work full time at 37.5 hours a week but it soon became clear that I could not manage this. I got scope employment service involved who spoke to my employer on my behalf as I am not very good at admitting when I have a problem. I have found every time I do it ends up with me coming out worse off.

I have only given up employment once and tried to change career into a different field. I have had a few jobs and lost them all due to fatigue. I am a fairly experienced driver and like driving but it becomes more and difficult due to the pain levels and having to take medication that just makes me tired it makes driving unsafe. I am very aware of my limits and will stop when needed but it means I have to work long hours to get the work done as it takes me so much longer than everyone else.

I have spoken to my employer and they got quite upset and angry that they felt I did not mention to them why I left my other jobs, I did but I don't think they fully understood just how my Cerebral Palsy effects me. After the meeting with scope and my work things settled down a little at work and I was reduced to working 22.5 hours week which accounts for 3 days, or so I thought but its more like 4 as they only pay me when I am with someone so most of my travelling time and rest time is not taken into account.

I have tried to change my diet and see if that has helped and also cut down on my medication only taking Paracetamol rather than Co-Codomal. It has helped a little but I am starting to struggle again. Scope suggested a support worker to help me with carrying things or someone who could drive for me but work rejected the idea saying that it is pointless to get a support worker to support the support worker in a job. I can see their point but I have many more skills and experiences I can offer to the people than just someone who is supporting me to drive or carry things. the idea was brought up again in my last review and I just got laughed at again.

When speaking to the job centre they just referred me back to scope. I have come to arrangement with the employment advisor at scope that the next step is look for another job as they can't see that there is anything else my employer is willing or able to do. I do like my job as I have a lot of experience working with people with learning difficulties but its a very challenging role both physically and mentally, I think it is a role that I will not be able to do much longer unless I can come up with any more ideas on how to give myself some more energy. I am awaiting for an appointment to see pain clinic so hopefully reduce my medication, I am also on Baclofen which I think is a big cause of making me even worse. I hoping after these appointments I will come up with a solution.

Thanks for your advice, like you say I don't think there is a quick fix, the more you do to fight the fatigue the stronger it comes back to bite you.

Mark

Hello Mark

Sounds like you have an interesting job but that your employer is no longer prepared to make allowances/adjustments for you. So maybe it is time to look for something else.

I really loved my job when I worked for the library service at the time of looking at options to keep me in the job my employers even suggested that they would buy an electric wheelchair, one that could raise up so I could reach all the shelves to shelf books. On the condition that it stayed at the library and if I left it stayed the property of the council.

I really wish that I'd gone down that route now rather than the support worker if I had I may of still been in work rather than having to go to an ESA tribunal this week!!
But I just wasn't ready to accept the use of a wheelchair at that time I didn't even have one at home so I wasn't ready to be using one permenately at work.
The support worker idea worked at first I had a really good relationship with her and she let me still do my job, but when she had to leave the second support worker took over too much and I felt the job wasn't mine. My employers couldn't see the issue as they were saying your sat down more so what's the problem. But I suddenly hated going into work when it had been a job I loved. Iwould happily go back to a job in the library service if there was any vacancies but this time I'd do it as a wheelchair user!!

That's how I knew it was time to look for something else although I think it's hard trying to admit to yourself when maybe you should move on from a job and find one more suitable to your current situation.

I've seen that you've read the other post I've answered about muscle spasms have you considered looking into different medication to help with the pain? I don't think my tablets make me more tired. Just day to day living does that! I only notice the difference if I have to add the codiene in on a really bad day. Might be better looking at alternatives rather than coming off medication and suffering.
Unlike you I'm unable to drive as I also have epilepsy but as I don't notice my medication makes me more tired I'm sure you could find something to help you with out too many side affects

Good luck with pain clinic I did both pain clinic and pain management but neither of them felt they could help me so I didn't gain anything from them. Apparently with regards pain management I was managing to well and they didn't know what to say to someone with cp anyway.

Let us know how you get on with things.

Helen