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Hi. I am a mum of two very energetic boys 8, 3. Diagnosed with cfs in July this year so in the very early stages of trying to recover. In denial, currently in a cfs crash and struggle to do anything. Took my little one to nursery which is 20 min walk round trip thinking I was a little better and have delayed my recovery. Husband is having to do school runs and grandparents have done it when hubby at work. I feel absolutely USELESS. I remain in good humour but this fatigue along with muscle pain is overwhelming.

I fall into the trap of when I feel well, I want to go out to a shop. Or I will clean a cupboard or do just do something a normal human being would do. I have now decided to trial not doing that. When I am better I have to just stay doing nothing. But it's so boring. Your head wants to do something your body says, er, no forgot about that.

I want to be able to laugh and have fun with my boys. Clean my house, Go to the shops for a mooch, maybe have coffee out with my husband, but I can't cos I know I will have to pay a heavy price. How frustrating. This is not living.

I have a pacing course comng up hopefully shed some useful light to aid my progress. No start my progress???? Or is that to much to ask?

Yes I'm cynical, frustrated but definitely not depressed.

9 Replies

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  • I fully get that - I hate doing nothing and try and push myself when feeling anyway good to at least try some house work.

    I have to walk slowly everywhere, (the little walking I do!), and would dearly love to be able to get a full physical days work done without it near killing me.

    Hope the pacing goes well, post any tips so we can all benefit. Remember that when resting it means to really rest not sit and watch TV/read a book or the like.

    Also it may be worth giving up dairy and Gluten for a bit, I was advised this by one of the leading people in the UK on ME and within a couple of days a lot of my aches and pains were gone and the bowl problems I had developed had cleared up.

    Also worth getting your Vit D levels checked as they are normally low in people with ME and that can make mood and energy levels much lower.

    Good luck.

  • Thanks for the tips. Resting is tv watching. What do you do to rest? I have taken to having a bath each day, ladts all of 10 mins then you use energy drying off and getting dressed. But I find it hard to switch off and that's where most of my energy goes. Cognitive energy, how do you switch your brain off when you have a family to care for without just giving up?

  • Meditation is the key to switching off the mind. Watching TV even if its only something banal that you are not really following takes effort.

    The specialist I saw recommended Transcendental meditation but any will work fine. Turn all phones, TV's, etc off, (bar some peaceful music if you prefer) lie flat or sit upright in a straight back chair and focus on your breathing. When you find your mind wandering bring it back to the breath, and repeat. Set a timer for 10 mins or so. It takes time but when you get it good its GOOD! Focusing on the breath allows our minds to rest from worry/thinking which slows recover and can energise our bodies. f you can do 10 mins twice a day, (morning and evening not too close to bed time as it can have an energising effect).

    Some info here:

    how-to-meditate.org

    You should also try mindfulness, living in the present moment and fully focused on whatever it is you are doing:

    mindful.org/meditation/mind...

    that should get you started.

    I like the hot baths too - works great for pain but I normally need to lie down afterwards as it drains me, but after that I feel good for an hour or so. You could have the bath, let the water out and lie in the bath resting/drying.

    If you have any questions about meditation/mindfulness ask and I'll do my best to answer or point you in the direction of an answer.

    Good luck.

  • That's great info for me to start on

    Thank you very much.

  • You're very welcome, as said if you need any other help on it let me know.

    Good luck.

  • Hi there. Just a little tip to add to Raffs very good advice - When you get out of the bath put on a towelling gown and take two large towels back to bed with you. Wrap yourself up and dry and rest under the duvet until you feel able to get dressed. Do everything slowly and thoughtfully which will calm your nervous system done and help you to be more restful.

    Good luck. Let us know how you get on. :-)

  • I like the sound of that idea thanks.

  • Hi,

    I feel your frustration with the 'good days' and knowing that you can't do as much as you'd like because of the consequences.

    I've had CFS for about 2-years and am waiting to be seen by a specialist clinic in January. I'm working 3-days a week, having had several months off. It's taken a lot of time for my partner to adjust and on rest days we have to really clear expectations of what I'll be able to do.

    Boredom is a problem but so is guilt especially when there's housework piling-up, it just takes time to adjust and set realistic goals. I cleaned the bathroom yesterday and it sparkles but I'm paying the price for it today, it's a rest day thankfully.

    I got a bit tearful when collecting my partner's son from a summer camp seeing all the activities and the time and attention I can't give him, but I can and help in many ways and there are moments when I am more involved.

    I have a routine to get through the week and my three days work are in the middlle. Occasionally it goes wrong and I have to shuffle the days.

    Take care I hope the pacing is useful.

    Antony

  • Thank you its reassuring that even after 2 years you get it wrong. I discussed with my husband the need to sit down and schedule school pick ups and things to do to share the load. It seems to be trial and error to see what works. Wishing you well for your recovery or management of cfs.

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