Now on half pay and I am stressed :-(

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Hey guys and gals,

Just wanted some advice from people who understand this condition and people who have/are at the same stage as me.

My symptoms started just over 1 year ago now and to date I really haven't much progress and still waiting for my appointment for the cfs/me clinic where I am hoping to be able to talk through all my issues with someone who understands as so far nobody I speak to has any idea of what is going on with me.

I had an occupation health meeting last Thursday where she has documented that she wants my gp to refer me to a neurologist as my left arm and leg are really playing me up, I cannot do some of the tests with the left side as well as I can on the right and most the muscle pain I get in on the left side. I am waiting on the report from this to come through to be able to speak to work about what we can try to ensure that I don't end up going off sick again.

I have been in and out of work since last February and thankfully all the time I have had off has been paid. However this month my pay has been cut in half; I knew this was eventually going to happen but it has hit me hard as now I am realising how much this is effecting everything.

I am now at a stage where I am trying to prioritise my bills and it is so hard, i can feel the stress is starting to have an effect on me and I can't stop worrying about everything from my finances to my career and it seems that everything in my life is no longer in my control and it is hurting so much. I know that my job is hanging by a thred and I don't know what I am going to do if I lose it.

Has anyone dealt with this and what did you do? I don't know where to start and it is making me feel so down and I don't want this to start setting me back as I am just starting to feel that I can start looking into a phased return to work.

Any advice would be highly appreciated.

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10 Replies

  • Posted

    Hi Shane, I had 9months off work last year due to a multitude of chronic health problems including osteoarthritis, extreme fatigue,diverticular disease.

    During the 9months, the financial strain was immense and made me worse. I returned to work in November last year and now been off again for 4 weeks as I'm exhausted, in constant pain and resigned to the fact that I simply cannot do my job any longer. The job entailed standing for 8hours a day and a lot of stair climbing. I spend some days in bed as my body literally hurts so much. I'm trying not to worry about money and focus on looking after myself. I had cancer 4years ago and my body hasnt recovered from the treatments.

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    • Posted

      Hi Janie,

      Your situation is excatly where I am, the whole worry about keeping a job and keeping the finances coming in is a real struggle on top of everything we are dealing with.

      Like you I know that the main thing to be concerned about is our health, the rest will have to fall in to place (That is what i'm hoping anyway) I wish you well with your recovery. 

      If you have any worries or want to talk feel free to contact me and I will see if I'm able to help.

      Take care

      Shane

       

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  • Posted

    Shane: Do you live in the UK? I'm in the U.S., and had to leave work on long-term disability. I was able to get disability through the help of my doctor (who documented by condition) and my own documentation of how the illness affects my daily life. I'm not sure of how the disability system works in the UK, but maybe others in this forum can help you. In the meantime, if would be very helpful for you to find some way to de-stress, because--as you know--stress can worsen symptoms. I use meditation. Also, to maximize your chances for a full recovery, it's important to get plenty of rest, pace yourself, and not try to push through the fatigue.

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    • Posted

      Hi Jackie,

      I am in the UK and I really don't have a clue where to start with our benefit system, it is something I never thought I'd need to know about as I have always been in work.

      We have something called citizens advice where I am planning on going to discuss where I am at the moement and see what help is available or even what may be available if things worsen.

      I have tried meditation as i have read here that this helps alot of people but so far I have not been too sucessful as my brain does not seem to allow me just to sit with a clear mind. I think that is why the hospital is pushing for my specialist appointment as I am not getting any support on how to manage this condition.

      Thank you for your advice and I wish you well with your recovery.

      Shane

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  • Posted

    Hi

    I was in a £40000 job which I recently lost due to the M.E./CFS so I know how it feels. It scares me when I think how much I was bringing in compared to now but my health was suffering. As the main wage earner it has put a tremendous amount of strain and pressure on my already weakened body, but I am just taking it one day at a time. It's amazing how little you can spend when you need to. I listed all the essential bills/outgoings - obviously got rid of any non-essential ones. I then divided the total so that I knew exactly how much we needed to make per month to cover the basics. It is made doubly hard because although I couldn't do my full job, I could have done elements of it, but my ex-boss has blocked any attempts to get employment in my area  (I think - no real proof but it's pretty likely) and engineered my job loss after a phased return, so I am having to think outside the box whilst trying to recover from a very severe relapse. I hope you get more support in your field whatever it is.

    I am currently getting counselling to deal with the loss of my job and everything else in life that I have lost through this illness. It's a hard slog, but one day at a time and little steps is the best advice I can give. 

    Hope this helps in some small way!

     

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    • Posted

      Hi Mazpaz,

      Like you I too have been the main wage earner in my relationship so the extra stress thats comes with that is very difficult and like you I definately feel the strain on my body everytime I look at my bank account and bills.

      Like you say I just need to take one day at a time and see how I handle the reduced pay instead of going straight to worrying before seeing how I really can survive on it. I will be ensuring the weekly shop is planned and stuck to to ensure I am budgeting well and not adding those extras that I just don't need. ;-)

      It is a terrible thing what you have experiensed with your employer, I do worry that things like this may start to come against me but thankfully so far work have been good and I have ensured the union are kept informed to ensure I am not pushed in to something I don't want like role change ect.

      I wish you all the best with your recovery and I hope you manage to get the help and support you deserve.

      Thank you again for your advice.

      shane

       

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  • Posted

    I am sorry that I have not posted here since submitting this discussion, unfortunately it seems that the stress of everything took its toll on me as yesterday I was rushed to hospital after suffering with an expected stroke.

    Thankfully after 6 hours, blood tests and a brain scan I was given the all clear and discharged. 

    My left arm and leg completely went, i couldn't move either of them and all I could feel was severe pins and needles in my hand and foot. I couldn't move them at all for an hour or so, this happened straight after getting temple pain followed by a heat sensation down to my chin. I was unresponsive and unable to move or even open my eyes, within a couple of hours I was coming around but had a major migraine which is what this was all put down to along with a possible anxiety attack and the m.e and stress.

    It was very scary that something like this can happen and it has really made me think about not letting my situation stress me out.

    The hospital have put a urgent request to the m.e clinic to get my appointment arranged as they say it has been too long for me not to be getting the support from a specialist.

    I had a brief conversation with my dr. today and he has added another 6 weeks to my sick note which is good as I feel that is probably what I need so that I'm not stressing about having to start trying to get back in to work but it seems like another step towards me losing this job as this time round I would of been of since November and this note will take me up to April but it is necessary for my health and that is all I really care about a this time.

    I think the next thing for me is to book an appointment at the local citizens advice to start getting some idea of any financial support that may be available which I really am not looking forward to but I must be prepared for the worst.

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    • Posted

      Dear Shane, so sorry to hear you're having such a rough time. The main thing is getting the medical care that you need and getting the rest and recuperation you need also. I've just submitted another 4 week sickness certificate as I still feel exhausted after a bad diverticulitis flare up. I'm literally about to lose my job any day, but I'm powerless to magically get myself fit enough to work. I've decided not to fret as this makes me feel more ill and just to concentrate on day to day getting myself better. Sending you all the best xx

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    • Posted

      Hi Janie,

      It sounds like you are at the same stage with your employer as me. I love my job (yes it can be a royal pain in the backside sometimes) but it keeps me very busy and allows me to really use my brain and give support to my team who depend on me and the knowledge I have after being there for so long.

       

      I get the feeling that as a business they need to start moving on to ensure my absence is not effecting their needs but I cannot just roll back up and hope my body adapts as I went back too soon before and was off again within 4 months and here we are now.

      Like you I have decided to take one day at a time, be blunt with work (yes they are pretty supportive but they still try to give a push to get a commitment from me to return and i know it is not the right time). If the time doesn't come around quick enough for them then I guess they will do what they need to do. As long as we are following the correct procedures there really isn't anything else we can do.

      My manager wants to see me next week if I am able to pop in for an informal chat so I may get a bit of an understanding where I currently stand with them, then I can speak to the union to ensure they know what is being said.

      I have notified work that any formal meetings planned in the future that I will be bringing a union rep along with me as the last time I left very angry with how they were pushing me to speed appointments up even though this is out of my control and really pushing me to commit to some hours even though I have made it clear that I really don't want to commit to anything as I don't know what I will be like the next day and don't want to let them down after making a commitment. 

      I feel for you but the main thing is is to look after yourself. Things may get worse in the sence of keeping in employment but if we can recover there will be new jobs to walk in to.

      If we make ourselves worse now by pushing too hard we never work again so one day at a time and not let the things that are out of our control stress us out.

      Please let me know how things go and I will keep you up to date too. 

      Look after yourself.

      Shane

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    • Posted

      Thanks for your lovely message Shane, it's always reassuring to know others are going through same experiences. My job entailed standing long hours and a lot of stair climbing, which I just cannot manage any more. I need regular rest periods and simplest of tasks often leave me exhausted. I do my best to eat well and take vitamins, but my body continues to feel constantly fatigued. I don't want to write myself off at 49 and in the future I would like to do some fundraising for animal charities as they are my passion. Wishing you all the best xx

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