Hi, How do I accept my uselessness?I have had CFS for 28 years and was managing it Fairly well until last year, even going out occasionally and then I had a major relapse and feel so useless.I have a beautiful grandson who is 3 months old and so want to help care for him it breaks my heart.
I am having sessions again with my CF therapist who is really good and helpful but just cannot do the acceptance thing. Can anyone help me with that please?
Hello,
Sadly, I'm still working on the whole issue of acceptance, so I'm afraid I won't be much use there.
Something springs to mind, reading your post.
Have you had any recent bloods done?
I only ask because it's so easy to put everything down to CFS, when there may be other things going on (I've done it myself, so I'm not judging).
If you have and all was fine, feel free to ignore the above.
If it helps, at all, you definitely aren't alone 
Thank you so much for replying. I was anaemic and my B levels were low but not as low a previous tests. GP wasn't going to do anything until I reminded him that one needs a higher iron level if you've got CFS and that my B's were better because I was taking B supplements. Finished course and cant take B's or Iron for 6 weeks so they can test again. It gets so tiring keeping on top of all the health things.
I don't think there are magic answers, but personally I've found the Buddist idea that attachment causes suffering helpful when things I really wanted in life turned out not to be possible for me. When I'm aware I'm causing my own suffering and changing my ambitions can remove it, it's the start of positive change. But letting go of unachievable desires is a lot easier if there's something else to turn to that's an enjoyable or fulfilling thing to focus on instead.
Thank you
i've gone through similar and still do from time to time.
resistance to our situation, it's exhausting, it's like fighting.
acceptance drops that struggle.
acceptance doesn't mean our situation is okay,
it surely isn't, we just have a reality check instead of wishing for what was or what would be,
and can then move on film there with plans and possibilities
♡
Thank you for replying, logically I know that's what I need to do and am getting there, albeit slowly
yes, it is terrible to lose the self who DOES things and interacts with the world. We do have to go through a mourning process, I feel. I personally have found it really helpful to join some of the many Facebook communities for ME/CFS - and Long Covid, for those who develop ME. I think the group that works specifically with acceptance is Toby Morrison’s CFS group. These are all closed grous in the sense that you have to apply to join, the actual content is not publicly accessible. Wishing you all the best, a fellow sufferer.
Thank you for information
It is hard when you have been managing long term health condition at a certain level and then it gets worse. I had a bad relapse of ME in 2007 and found it impossible to accept at first. It took time to adapt and to manage the different level of symptoms and energy. I was fortunate in being referred to see a Clinical Pyscholgist who had experience of people with long term health illness. She was able to help me understand that it is entirely normal to feel frustrated and at a loss when faced with this. (I think there is a kind if grief at the loss of the life we had). As I talked it through with her I recognised that old adage that while I couldn't change my condition I could learn how to manage it and live with it in the best way possible.
I did find somethings have helped including pacing. But it is worth checking your symptoms aren't caused by anything else. The ME Association have a load of useful information. I found Dr. Charles Shepherd's book on ME / CFS very helpful. I aslo have allergies (food and inhalants) and have found managing these helps. They also have a free support / helpline.
I know how hard it is having a grandchild you want to enjoy and be part of their lives - and yes help care for them. These days I recognise what I can do and work within those limits. That way I can enjoy some time with him without exacerbating my illness. When he was a baby (he'll be five this year) I used to record nursery rhymes and send to his mum to play to him, and made him a small felt booklet - it took me months doing it a bit at a time! Take care of your self and do only what you can, even if it is only a wave via a mobile. It was hard during Covid not being able to see him.
Be gentle with yourself. It is okay to be upset at what you can't do, but try to look for the smaller things you can do to enjoy your grandson. ME / CFS is a beast; hopefully you will improve and be able to help with his care, while remembering to care for yourself.
You summed up how I feel exactly. And yes the hardest bit is not seeing my grandson as often as I would like but I have decided to roll with the relapse and live in the 'what I can do now stage' rather than where I should be. Thank you so much for your support.
it has changed some of the family dynamic.s John does the food shopping and planning, and often the cooking, which helps, I had time in bed just before they came sso that i hd enough energy while they were with me, and sortred the bed linen. Beng clear what you can do and asking for help when you need it, IT means talking and listening to plan what is workable between you
I do find it difficult to ask for help yet have done so the last week as have a bad chest infection. It's as though CF isn't a real illness yet I know it is. People's reactions are very different to the two in my head. One of my brother's understands but the other just says I need to get out more. Does he honestly think I want my life to be as it is ☹️
Please allow yourself grace; I am struggling to be positive, and pacing when I DO have the energy is very hard.
I am sorry to hear you are also struggling and thank you for replying. Everyone on this site is so kind, it really does help to know that other people understand.
This is really hard. I keep making my life smaller, so that I can manage it, and eliminate stress over things that are “too much.” I’m hoping that by eliminating things that are burdensome, I can focus on things that make me happy in my tiny little world.
I'm sorry to hear that you have had to cut back so much. I have also had to cut right back due in part I think to being unwell with cough, breathlessness and bad chest since 4/8. Had 2 lots antibiotics, steroids and asthma pumps which have done the trick as ok since yesterday but my fatigue is so much worse.I will start trying to build my activity up again extremely slowly.
I wish you well and hope that you are able to gradually increase doing the things you love
Just reread my post and date should have been 4/7 Not 4/8
CFS in every day living
Who diagnoses ME/CFS?
So what if I do have ME?
My boss thinks I am lazy!
Advice wanted - relatively new here
