Started the day well, very quickly gone downhill

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I had a wonderful sleep last night - fell asleep around 9.45pm and woke up at 7.20am. For whatever reason this seemed to give me a real boost this morning, I actually felt full of beans and whilst at work my brain was ticking away making lists of things to do this afternoon. Got home and walked the dog for 20 mins or so and since being home I've had wobbly legs, shakey arms and feel exhausted! There goes my list of things to do this afternoon! Don't think I'm really asking a question in this discussion, perhaps just seeing if other people get this sort of situation?

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12 Replies

  • Posted

    Hi I think sleep is the key to recovery . It's seems sleep problems plague all. My husband used to sleep but he would spasm almost like being given a little electric shock every 20 mins all night . He would wake slightly each time . I couldn't sleep properly either .. It seems you don't go into a deep sleep. 

    Since seeing a m.e. Specialist he was prep scribed a very low dose of notriptyline just before bed and he sleeps deep now .. And doesn't snore ( excellent) but he still struggles to fall asleep so he is following sleep hygiene no electrical devices in the bedroom and to listen to 10 mins of relaxation music before lights out. It is helping. But his occupational therapist wants to get rid of his afternoon sleep to help his nights sleep. Easier said than done as right now he is asleep on the settee can't keep his eyes open ... Trying to reduce the length of time he sleeps in the afternoon by 5 mins each day ... All slow but getting there 

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  • Posted

    Some specialists say it is because we tend to over do it on our good days.  We try to do all the things we can't do whilst having our bad days and then play catch-up on our good days.  Therefore using up the energy we have on our good days too quickly.

    I suppose if ME does source from us not having enough energy in each of our body bits (can't remember what they call it - Mito something). When we do have a good day instead of just asking for a 'normal' person required amount of energy we ask for a normal day requirement plus extra to wizz around catching up on jobs.

    However we need to wizz around cos the jobs didn't get done on our bad days. Or we want to do "normal" things which we would of done if we didn't have ME. Or we want to do them to show those around that we do try when we have the energy.

    They say when we feel good we forget to pace.  For me that is true. I find it hard to stop and rest when I don't feel like I need to rest just then.

    Next time you're having a good day, I recommend stopping and having a cuppa tea break, just to help the pacing bit. Good luck 

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  • Posted

    Thank you both for your replies. I had a sit down, felt not too bad and just go tip and rid some cleaning! But presumably I'm going to pay for that tomorrow. Fortunately I have the whole weekend off with nothing to do and a massage booked for Monday smile Julie, I think I need to take your advice and rest even when I don't think I need to, that's really good advice!
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    • Posted

      I'm no good at taking their advice either.  Although as I walk down the garden at a normal speed (therefore I'm having a good day, I do try to rest a moment) Not sure they would consider my 3 second stop a restlol

      I've got my second ME/CFS OT meeting next week.  Had to do a diary of last week for him.  Think I'm going to get told off!! I know their advice I just don't do it. Naughty meredface 

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    • Posted

      Hi, I'm in the UK. My CBT person helped guide me through the emotional side of things.  My OT is trying to guide me through how to physically cope with ME.  The first appointment I had to send in a week diary indicating what I did each day at what time and for how long. They need to see what activities I do physically, for how long and what breaks I take and what I do during my "rest".  I got told off alot (nicely).  He then suggested I try to take 5mins rest per 1hour work.  Then I need to take a further bigger break for lunch and another 40 min break on top of that.

      I'm failing!!!! So I'm about to be nicely tut - tutted againrolleyes.  

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  • Posted

    I've posted my Sleep Combo on the FM group, maybe something I take for good sleep could help any of you.
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  • Posted

    What you experienced is so so typical. It's happened to me numerous times. I feel good, so I overdo it, even if "overdoing" simply means I'm only doing stuff a healthy person would do. This behavior caused one of my worst relapses ever. I was feeling great, went to San Francisco on vacation, and ended up in bed for months. Pace yourself, even on your good days.
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  • Posted

    I wish I could sleep better. I never feel rested when I wake up. I have good days and bad days. Today started out good. I went for almost a 3 mile walk earlier today but then the fatigue started to creep back in. I get these weird headaches where I feel so much pressure in my head and my eyes feel so tired. Do you ever get headaches along with your other symptoms?
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