Down but not out... just asleep

I have turned into the incredible sleeping woman. There's pacing (which I am still trying to get my head around) then there's just stopping. I have two kids and a stressful part time job, I don't have time for this.

It's not like I haven't slept. Week before last I started with a flare, then I had a virus on top. But my boss let me work from home, my husband let me sleep in very late all weekend and I did NOTHING except iron the girls' uniforms this weekend. Yesterday I did my pilates DVD but then rested the rest of the day. Today I took the kids to school, came home, made some porridge then slept from 9.30am until 2.30pm! And I only got up then because it was nearly time for school pick up. There's been no over exertion and yet I can sleep for England! The only reason I am up now is that I am waiting for the meds to kick in. Sometimes it's a toss up as to what is worse - the pain or the fatigue. At least with pain I can take meds and do odd things, the fatigue is so overwhelming I can't move. I can't think that the rest of my life will be like this. I am down, but definitely not out. Like a weeble, I wobble but I don't/wont fall down. Just someone pleeeeeeeease tell me tomorrow will be better!!

9 Replies

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  • I'm sure it will.I'm filing abysmally with pacing,just as I think I've got the hang of it I have a flare and it all goes pear shaped.it's so frustrating!!!

  • oops that should have read 'failing' sorry!

  • Yes I am failing miserably too. My physio has now referred me to OT to see if they can help. But not sure what much more I can do. I just feel like I am going round in circles from one medical team to another but none of them live my life. If I was single with no kids then perhaps pacing would work better but life doesn't stop while you sleep! And don't worry about the typo - I do them all the time and knew what you meant!

  • There are CFS Clinics around (Chronic Fatigue Syndrome) where an OT can teach you Pacing Therapy correctly and it can prove invaluable when living with Fibromyalgia. I was referred to one by my GP and it helped me enormously. I have slip ups and flares like everyone else, but I know how to get myself back on track again.

    It might be worth enquiring with your GP about this possibility for you.

    (((hug))) xxx

    Libs

  • Thanks Libs, I think that is what my physio has referred me to OT for - hopefully they can help me pace a bit better because right now I am clearly rubbish at it! I do try to be sensible but maybe there are extra tips that will help, fingers crossed any way.

  • I suffer badly with the constant fatigue, my oh helps me in the morning to get downstairs just so I can say I have got up but then I will sleep on the sofa, I feel I have lost so many hours/days to it but never feel any better, i'm not sure what is worse either the pain or the tiredness but it's not a choice, I just get both all the time. But who knows what tomorrow brings, we may wake up tomorrow feeling refreshed with the pain easily managed.

    Best of wishes to you xx

  • Yes I know what you mean, me and my sofa have developed a close relationship, though I am hoping to file for divorce from it at some point, it doesn't give me much in the way of conversation.

  • l also fail miserably at pacing. l find l have a good day but l want to get as much done as l can as l don't know when l will have another good day. l am always in pain and exhausted and with 2 youngsters pacing is difficult anyway. l find as soon as I get up I'm waiting to go back to my bed. l hate fibro. Its horrible. Want it to just go away and leave me alone. xx

  • That's me too, though am learning now it does more harm than good. My physio says I a setting myself back days, weeks by doing packing everything on a good day. I am now at the point my body often stops me and I don't have much choice, the good days are few and far between now. But with two kids you can't just not pick them up from school, you can't just not give them their tea, I can't just not turn up for work. It's probably why we get sick in the first place - overdoing it. I hate it too. Have decided to treat me and my eldest, who often gets overlooked, to a lovely afternoon tea with scrummy cake and sandwiches. The small things and all that...

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