two steps forward three steps back

Hi does anyone feel like they are managing to cope for a few days then bam back to square one and can't get out of bed again. I can cope with being in pain everyday but I feel like i am going backwards and forwards with thinking I have got to being able cope with fatigue and confusion. to then be laid up in bed til lunchtime feeling so heavy i can't even get out of bed. I am currently appealing against the esa decision to say i am fit for work and when the man phoned to explain things I just told him to cut to the chase as I was getting confused.

I was so confused he said that the question about consciousness on the form was for people with epilepsy I thought whatever I havent got the energy to discuss it at the moment with anyone.

To have to fight with the system is ridiculous when two appeals previously have been successful as i have tenosynovitis RSI in both wrists as well.

ramble over lol i can't think straight to put my points across today or any other day for that matter it is good that i have a good sense of humour as i have to laugh at the ridiculousness of the extremes of having fibromyalgia.

6 Replies

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  • Linksy,

    I couldn't agree more. I have severe Fibro, chronic M.E., cervical spondylosis, and arthiritus. I have just spent a week with my Sister, she lives in Philadelphia, USA. My symptoms weren't as severe whist I was there, that was until we went into New York on the Saturday, and boy did I suffer afterwards!!!!! I get home and have jet lag, and arms, neck, knees, hips etc are so painfull.

    I really wish we could have a long spell of good weather!!!!!

    Soft HUgs,

    Sue x x x x

  • hi soulsusie

    Do you find that the weather really affects you ? i have had a few days of sunshine and felt a bit easier i was still in pain but could manage if i paced myself. it is really raining here all day and most of my joints are giving me jip today. Here's praying for sunshine again soon. hope your jetlag settles soon i once went to the usa and had jetlag for three weeks. I don't book flights any more and we just caravan locally as i find the travelling totally exhausting. Hope your aches and pains ease soon i try salt baths,epsom salts and aromatherapy massages by a friend to help ease and soothe me.

    gentle hugs lesley xxx

  • Yes lesley,

    I have some good days but i know i will pay for it. If i dont get my ten hours sleep i am good for nothing. Pacing is the key but soemtimes things need to be done and you just cant slow down. I have had a few busy days at the start of the week and now i have done absolutly nothing today as i am so tired i could sleep for a week. Bed time cant come fast enough lol.

    Hugs, kel xxxxx

  • hi all ,

    i bought lavinder to sooth the aches and it helps to relax you ,it does work got it from the chemist ,only mange a soak once a week as needs help to get in and out of bath ,with boyfreind helping . ,a nice massage given before hand ,

    have a good evening xx

  • This is normal for me nowadays. Do what I can on the good days and rest on the bad days. Thing is they expect you to work when some days you can't get out of bed!! Can't plan anything either - just incase I'm having a bad day!

    It is a step forward though - better having a few good days than none at all.

    Take care and enjoy the good days (hours lol).

    Ruth x

  • Thanks all for your comments I haven't been able to get out of bed yesterday or today before lunchtime. I think my body is trying to heal itself through sleep at the moment. you do have to make the most of the days you can function. I have enjoyed the days of sunshine this week before the rain lol take care and enjoy your moments.

    Lesley xxx

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