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chronic fatigue

Posted , 4 users are following.

betty98863
betty98863

 This is the first time I have posted, but have read some of the discussion, and as I  Have diagnosed with CFS, wonder people cope with  it, I am able to do my own shopping, is that the best i can expect, i have given up work,  I need to know that the future will be brighter and how do you manage to pass the time.

thank you

0 likes, 12 replies

12 Replies

  • Beverley_01
    Beverley_01 betty98863

    Posted

    Hi Betty,

    In a nutshell- evidence suggests that pacing yourself helps and also finding ways to relax. Its a balancing act between doing things and resting. Diet is important too. Lots of people recover from this. Be gentle with yourself as much as possible.

    Hope that helps

    Beverley

    • betty98863
      betty98863 Beverley_01

      Posted

      it's just hard to get the balance right, as i seem to do thinugs that are not too tiring, butt i get so exhausted, this gets me down, i do so hope i recover, i try and remain positive, I WILL GET BETTER!!!!!

      THANK YOU BEVERLEY,

    • Beverley_01
      Beverley_01 betty98863

      Posted

      Hi Betty,

      The balancing is difficult but, see cfs/me as having a faulty battery that needs extra charging. A little seems to exhaust us and I've been there too with that feeling of, is that all there is? My advice is, be gentle. On down days/times, which many people get on here, do things that are nice but not too demanding. A warm bath etc. Something that makes you feel ok.

      Hope that helps

      Best wishes

      Beverley

  • Bunnyhugger
    Bunnyhugger betty98863

    Posted

    Instead of doing everything all at once, work till you tire, then rest, do a bit more.  There is no pushing through with this disease .  You may want to research graded exercise therapy.
  • toni62403
    toni62403 betty98863

    Posted

    Hi Betty, 

    I can understand where you're coming from. I personally found CBT really helpful for finding my 'baseline'. It's not a cure but it helped me to find the level of activity that I could maintain without feeling worse. It also taught me to have regular short rest periods (rest = sitting/ lying down with eyes closed in a quiet room). 

    Also, I found it important to acknowledge the sense of grief I was experiencing from losing my ability to live and feel as I had prior to becoming unwell. So I'd really recommend counselling if this is something that is really getting you down. Some places offer it over the telephone if you struggle to get out and about. 

  • onebratt08
    onebratt08 betty98863

    Posted

    I take a medication called Midodrine, which helps give me energy because it raises my blood pressure. If you have symptoms like dizzy when standing, you might have the same BP issue.

    Otherwise, it's all about learning to portion out your time. For instance, if you know you will be shopping, don't plan anything else for that day. If you end up with enough energy to do something else, consider it a gift. Just be careful of overdoing it or it could ruin the plans you have for the next few days.

    • betty98863
      betty98863 onebratt08

      Posted

      thankyou for taking the time to reply i have learned not to plan, as i have made plans and cannot keep them, so i ltterally go more hour by hours, which is so sad, but saves letting people down.  I may try and get out for alittle while later, just for a little drive, as it would be nice to have some .me. time and not saving energy for essential jobs.  Sad isn't it!!
    • Beverley_01
      Beverley_01 betty98863

      Posted

      Hi Betty,

      I'm wondering what your essential jobs are you need that energy for? Not sure if you live alone or with family/partner? It took alot for me to have a cleaner come to my home. I was fiercely independent and did everything, diy-the lot. But, I can't do things now and I've had to accept that. I want my energy for better things. I don't want to be in pain from doing something trivial. I have children and have had to rely on them more too. That has been difficult but, again-something to accept. The nhs guidelines are that we need to find our baseline then build our energy back up. That means stripping right back to basics.

      Best wishes

      Beverley

    • betty98863
      betty98863

      Posted

      sorry continuing.

      I do live along , my two daughter live not far away but i like to try and do my  shopping etc., to maintain some independence, as i was working until Christmas = so find this very hard.

      I also find ot difficult to know how to get energy for something important to me, hard for me to gauger, this illness unpredictable and leaves me unable to make plans.

      hope your having a good day

      regards

      betty

    • Beverley_01
      Beverley_01 betty98863

      Posted

      Hi Betty,

      I guess in one way I'm lucky because I can't lift things so shopping had to be with my children. Now, most of it i do online. If you could do this it could free up a little energy for something else.

      Hope today Is good for youtoo

      Best wishes

      Beverley

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