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fighting fatigue

MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
edited May 2014 in Disabled people
Hi everyone

first time posting here. I spoke to a very nice lady on the scope response help desk, she suggested I post my question to you all here.

before I do I just tell you a little about myself.

I am 39/m I work part time 22.5 hours a week. the form of Cerebral Palsy I have is Ataxic. it effects the my left side of my body the most. I can walk but get very tired quickly, I have a wheelchair but it is difficult to use within my work place so I only really get some rest from walking when I am at home. I find both eating and swallowing hard and it also makes me tired.

I was wonder if anyone had some tips on fighting fatigue. I only have to be at work for about 2 hours and I am exhausted and need a rest. I have a fatigue management plan at work and it normally allows me to work a max of 3 to 4 hours before I get a break. mostly I work 2 hour shifts then I need a rest. the problem I am having is finding a quick way to recover within the 30 minute breaks.if I work a 4 hour shift i get an hour break.

the lady on the response desk suggested drinking plenty of water and eating banana's which I am going to try. I also going to speak to my doctor again to see if she can help. I don't really want to go back to my employer and explain that I am still struggling as it took me ages to convince them I was safe to drive within my job last time I went off from exhaustion.

I tend to sleep ok once I take my night time pain killers they tend to knock me out for about 3 hours I then wake up and then go off again for a further 3 to 4 hours. I am trying to come off a lot of my medication as they make me tired but it would help if anyone else has any other suggestions I could try.

thanks in advance

Mark

Replies

  • pantherpanther Member Posts: 251 Courageous
    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
  • pantherpanther Member Posts: 251 Courageous
    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

  • MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
    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
  • pantherpanther Member Posts: 251 Courageous
    Hi Mark

    Was just looking through posts and saw this one again and wondered how you'd got on.

    Since I replied to you my life has changed a lot as I've gone back to work.I'm now working in a supermarket on the checkouts. A big change from other jobs I've done in the past, but it's a job that is close to home and hours that are manageable most of the time.

    Hope things worked out for you.

    Helen
  • MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
    Hello Helen

    I just remembered I saw your reply the other day and hadn't replied. Best description I can use to sum up my life since posting this is "OMG, how things change" Not sure where to start really. I guess the biggest change is best place to start. My Mum died of cancer shortly after posting this message. Being the only person who knew me well enough to look after me when I got ill facing life without her was and has been massively challenging. I ended up in Hospital very ill myself and couldn't come home until some care was put in place. As for work I lost my job soon after and haven't really been able to work since. I started Volunteer for a charity local to me and they have offered me a few hours paid work a week so it doesn't effect my benefits. Its been good to be able to do something with myself as I have also been diagnosed with brain damage also after having a huge epileptic seizure, maybe brought on by the stress of trying to hold down a job and also cope with losing mum.

    I went through the process of claiming Employment Support Allowance that was really stressful because after months of trying to prove I was able to work I now needed to prove I couldn't work because of the epilepsy and losing my driving licence and being cut off to public transport. I have since got my driving licence back as I have been seizure free for 2 years now and it is controlled by medication. Looking back over the last 3 years I am thinking to myself now 'wow' so much has happened. despite all the problems I was having then and I am less stressed now than I was, things where not all bad then. I would give anything to have mum back. The brain damage has caused big short term memory problems that make doing any job really hard to put things into long term memory.

    On a whole I am healthier now and not been in hospital since end of 2013 apart from the occasional fall. I have a carer who comes and checks on me once a day to make sure I am ok and have cooked some food.

    Thanks for thinking of me and replying.. glad you are doing ok too.

    Mark
  • helpathandhelpathand Member Posts: 17 Connected
    Hi Mark, I am new to this site and just wanted to say thanks for putting your story up there. I was brought up in an era where it was about grin and bear it and to see others who have struggled and achieved in spite of the pressures is actually inspiring for me to keep going.
  • Lizzie DuttonLizzie Dutton Member Posts: 2
    Hi Mark. As with helpathand I am new to the forum and would like to thank you for posting your experiences. I am an expert on fatigue, as I have chronic fatigue syndrome. It is hard to say what works for the best but one thing I have found useful for getting valuable rest is mindfulness meditations. You can find some great podcasts on the Mental Health Foundation website. Best wishes. Lizzie
  • pantherpanther Member Posts: 251 Courageous
    Hi Mark I haven't been around on here for awhile don't particular like the fact that it now seems to general disability as opposed to CP. It used to be the one place you knew you could come to get what you needed when you specifically needed something that was cp related.

    All going fairly well for me still though I'm due more surgery soon. And unfortunately I'm at the start of the DLA to PIP transfer and trying to find the CP and ageing factsheet Scope had to submit as supporting evidence. But at the moment not having much luck. I can't use the current factsheet there is on the site as it's too general. And doesn't explain the issues that are CP related to ageing.

    Take care sorry to hear about mum but sounds like despite you going through a pretty bad time things are getting better. 
    Speak soon will try and come on a bit more often. Helen
  • MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
    Hello Helen 

    Long time no hear. I feel like I am going to waffle on a bit so I apologise for that.. 

    I know what you mean about the CP things everything is so general now and it hard to get people to understand, having a rare form of CP and being the oldest person I have found with it, the whole thing about getting older with CP doesn't really give people enough information. I still now get moments where my CP is so bad to manage I am exhausted by the afternoon. I keep coming back to the spoon theory but have spend most of my spoons by lunch time.

    I am also going through the PIP and DLA thing too. The stress is really difficult so know what you mean. My Doctor prescribed me sleeping tablets a while back to help me get back on track with my sleep but they don't seem to be working. Daily spasms attacks are not easy but as you know not much that can be done that doesn't knock you out and stop you from being able to lead a half normal life. 

    I am much better since I lost my last job when I first wrote this post, the fatigue was just getting to much and after a concern that it was effecting my ability to drive I got a nice pay off to f*ck off.. It worked for me as much as I enjoyed the job the lack of understanding of the CP and now i have been diagnosed with Dyspraxia they decided to let me go, I think I have always been dyspraxic but as I have got older and my coordination has just gone completely, it has helped having that diagnosis helps to some level. I was happy with just having the one label of CP but like you say its so general it doesn't help when making claims for benefits or support. 

    My new job are much better and make adjustments to help me and I had to go for a medical last Friday which was really nerve-racking as it is really hard to say on the one hand you feel able to work and want to work but on the other hand say that working is effecting your health. I have just learnt to accept my limits which is also difficult as you know like most of us with CP we are not stupid and want to work. I know that there are days I get home and feel totally worn out I do wonder if I done the right thing by over doing it that day. 

    I still have carers that come in and help but they can be difficult to manage at times as I get the feeling they think I don't have a life and can turn up as and when they feel like it they are here to provide me support to carry on working. The biggest issue I have is because how many staff they go through, getting any continuity is next to impossible. I have had 22 new carers the last year. My care manager seems to think it is my fault as they start off ok. the fact remains that just after 2 weeks they are just getting used to me and want I need them to do so I don't think its fair to blame me, Plus I am not the only service user they have so I don't think I can be held responsible for them leaving the company. 

    I know if I give up working I maybe able to look after myself but in the time I have been with this new employer my fitness levels have gone up and I feel much healthier, even if I am still fighting the fatigue. My manager has said so also that I am able to do much more now than I could 2 years ago when I was just volunteering one day a week. I know my mental health has got better especially since losing mum. The only concern is if I lose my PIP I will not be able to afford a car and as I live in the middle of no where I feel that I would lose the little independence I have. As much as I would like to believe that I could cope without having something to make me get up in the morning, I don't think I would. I know a few of my friends with CP have done that because trying to work is just too stressful, there is a part of me that would like to think maybe I would be better off and just volunteering as and when I can.

    Sorry I told you that I would waffle a bit. I was thinking when writing this maybe we should start a message topic off as just CP? Its nice to read other peoples experiences with their own disabilities and it has given me some ideas when applying for PIP. The one thing I don't like though is just how much all disabilities are being effected by the whole Benefit changes. It seems no matter where you look online these days it all bad press about people not getting the benefits they deserve. If I'm really stories about how people with what I think is worse disabilities than mine are not getting the help what chance have I got? 

    Anyway Carer has just got my lunch ready so going to finish. nice to catch up with you again. 

    chat soon 
    Mark 


  • pantherpanther Member Posts: 251 Courageous
    Hi Mark
    I started a new post this afternoon Old CP and ageing factsheet and they were able to locate the old one for me. If you take a look. It might be helpful for you as well.

    Let me know how your PIP claim goes
    Best wishes Helen
  • loopytloopyt Member Posts: 80 Courageous
    Hi everyone,
    I don't think there is a solution to the problem and certainly we all have our own way of coping. I just wanted to add that sometimes severe tiredness can be due to a lack of vitamin D and although it will not solve the problem completely if you are tested and are found to be low on this vitamin a supplement may just offer a little help. I do hope that you find a way of coping with work.
    Loopy
  • catherinerichardscatherinerichards Member Posts: 7 Listener
    Hi every one my name is catherine i suffer from an illness called meniere's disease and drop attacks they happen without any warning this has happend on zebra crossing and on eccelatores, so now all my doctors have said i cant go out on my own this illness is very dibilitating just recently i have been told i am suffering from cronic pain disorder like a lot of people i am suffering from fatigue, i have been having problems with the esa because im having to fill out the capability for work form every 6 months then i have to go to the face to face assesement only to be told im fit for work when theyv had letters from my gp hospital consultant and psychatrist all saying im not fit for work and im a danger to my self and other people because i black out without warning and i lose controll of my water works wich is very embarising, so i have to go through the mandatory reconsideration process and it's the same with the pip iv only been awarded low rate liveing componant even though i cant walk without the help of other people
  • sleepy1sleepy1 Member Posts: 299 Pioneering
    Hello all you party people ; ))
    Very interesting thread and one where I can completely understand what you are all going through.......hence the name Sleepy1.  Most people (even doctors) do not have much of a clue about chronic fatigue or how bad it can be and how it can totally destroy your life.  They just think oh so what we all feel a bit tired at times!!!  Not the same thing at all.

    I also blackout without warning which has made me very nervous about going anywhere let alone drive or apply for new jobs.  Its like someone pulls the plug out and when you do eventualy wake up you feel even more drained.  Then you have to try and find a bit of energy to deal with things your brain or body is just not really well enough to do, so have to wait for a better day.

    Pain saps so much of your energy but I have found that all painkillers in one way or another just add fuel to the fire with other side effects so try not to take too many.  The best way I have found is to try and take your mind off it by listening to music.....don't get carried away with the dancing though X

    One of my favs




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