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accepting my CFS and brain fog

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niki_90453
niki_90453

HI I've had CFS for over 4 years and slowly learnt to manage my symptoms. To the point where all I needed to do every few days is lie down for half an hour, perhaps medidate. I was working part-time during the worst of it but last year was made redundant, and worked one day a week. To be honest I learnt to slow down and love life. But being A type personality always felt that I wasn't achiving and of course I have my dreams that need finances to support them. I finally pushed myself enough to land a job in a career that I really didn't know enough about (but ofcourse presented really well in the interview) and got the job.  After only two days it is clear to me (albeit reluctantly) that I can't do this job. As an achiever and having lots of trauma around being good enough or not, this decision of bailing is incredibly painful. The reality of accepting that maybe I pushed too hard to get a job I clearly am going to struggle to get my head around (where once I would push to make that happen-now I can't), and that full time work will excacebate my condition, is a truth I'm finding difficult to accept. I feel a lot of trauma looking at the work involved and feeling my brain going into scramble shock and fear, and of course the brain fog starts. I also want to add I don't know that I like the job, or that it's me. But bailing makes me feel like a failure none the less.  Part time gentle work is the logical answer and I see that that reality is riddled with shame around my capacity these days to live a full life where I can feel intellegent and capable. I own my own house and have a partner who doesn't earn a lot but is really patient and supportive. Ideally I want to buy an investement property for retirement but am frustrated that maybe that will have to wait. How have poeple come to terms with their life, accepted their limitations and lived with it all without shame?

0 likes, 8 replies

8 Replies

  • karin65289
    karin65289 niki_90453

    Posted

    Honestly Niki,  

    I've had ME/CFS for 17 years and I haven't found an answer to your question. I think that the most useful advice I got was "You are a human being, not a human doing".  I'm sure you will find the right answers for you - my mantra is pacing, pacing and then pacing (half the time I forget it and end up crashing).

    I wish you peace and self acceptance.  Blessings

  • jackie00198
    jackie00198 niki_90453

    Posted

    Niki--For one thing, celebrate the fact that you're not bedridden or housebound, as are many people with ME/CFS. From where I'm sitting, you're doing quite well if you can work part-time. When I first got ill, years ago, I pushed myself because I didn't want to accept my illness and its limitations. The result? I got so much more ill. What does not work is pushing through the fatigue because of some idea of what a full life should be. Through the years, I've learned that I can make my own definition of a full life. I'm housebound, but I can enjoy great food, read great books, watch movies, follow politics, listen to music. The list goes on. I refuse to let ME/CFS make a victim out of me. The idea that this illness could cause me shame because of limitations? That never occurred to me. 
    • GeorgiaS
      GeorgiaS jackie00198

      Posted

      Me too Jackie, I find the idea of being ashamed because we're ill and limited to be appauling! I've been virtually bed ridden for 10 years but I have nothing to be ashamed about; I'm studying for a degree and I have the amazing capacity to feel happy and optimistic despite my condition.

      When I told my sister on the phone that I had ME and a bit about what it was like, before she even came to see me she said 'Your life's sh*t!'

      I was stunned and told her it isn't! eek

  • Ravenwood
    Ravenwood niki_90453

    Posted

    Truthfully, I haven't. I have been sick for 11 years and have not work for the last 8 months. I am now primarily housebound and often bed-bound. However there hasn't been a week in the last 5 years that I haven't felt like I should do more, be more. I have been very hard on myself, and I cannot seem to stop.

    I hope that you come to better grips with this illness. Learn to be kind to yourself and love who you are, not what you are. Take care.

  • Beverley_01
    Beverley_01 niki_90453

    Posted

    Hi Niki,

    Seems a couple of things going on here that may need separating out. You recognize yourself as a high achiever and wanted to be back in the world of work and have taking a job you're not 100% happy with and now you have doubts. And that's ok. Anyone can take a job and realize afterwards that it wasn't the job for them. It seems the issue is how you are perceiving this. You mention "guilt" and feel you would feel you're "bailing" if you leave. You sound quite self aware and so I wonder if you sit with this in a favourite chair or somewhere you find comfortable, close your eyes, let your body relax, breathe calmly and ask yourself where that thought is coming from. It sounds like Its from the past? Past achievement thoughts? But you are Niki now. Niki who was loving life not so long ago and managing her cfs/me pretty darn well it sounds! Its not a failure to go back to that, see it as a temporary situation (this is hard but I do this on good days and it helps, it really does) part of you can see part time work would be better for you right now, that's ok too. If you are similar to me in your cfs/me-having the feeling of being overwhelmed is part of it. Its a symptom that's difficult to manage and its hard to tell how much distress that is adding to the mix.

    Could you ask for part time hours at the new job?

    Next is wanting to think of the future. That is hard because at present, you are still in recovery from what ever triggered your cfs/me, even though you have managed your symptoms well and are needing to rest less. Again, the situation is temporary. You have a supportive partner, full time isn't for you it seems right now even if the money is towards this dream of the future. You dipped your toe in the water to see what you were capable of. It feels too much at present.

    On Wednesday I was quite upset because I couldn't attend a two hour event as I felt too ill. I became so overwhelmed and felt guilty. My daughter put it in perspective by saying I was measuring myself by my past self and that part of me was wanting to attend, wanting to be there for others but, right now, I needed to be there for me. She could also hear my sense of guilt and told me to let that go. She was right. It made me quite tearful, my yearning to be the old me, my need to be well all welling up inside. I felt less overwhelmed, less guilty and more in control again. I went back to bed cancelled my attendance and rested. At present I'm in bed most of my days but, have not lost hope of recovery and, like today-can see going out when I feel so ill is counter productive.

    I hope this helps.

    Be gentle with yourself

    Best wishes

    Beverley

    • niki_90453
      niki_90453 Beverley_01

      Posted

      Hi Beverley

      Thank you for hearing me and the feedback was interesting. There is a past event that has triggered the symptoms. You are right. And it's something I now have to face. I will be asking to see if they want someone part time. There is, inside of me, a level of resistance perhaps to rapid change and to any job where I might feel pressure or too much responsibility. I recognise and love the idea of working part time and something gentle and perhaps creative. It's hard to not feel like I'm sabotaging an amazing opportunity here but the old Niki really isn't around like she was. And I may have to accept myself as being enough that way. That's a huge process for me. I've discovered my nervous system is quite fragile and everything is super sized in my mind but I can't discern what is the middle. And it might take a fee more years to heal that. I don't know. Anyway I'm sleeping again and know not what awaits me over the next few days. Just one day at a time.

  • elaine62759
    elaine62759 niki_90453

    Posted

    Hi - I've had ME/CFS for 21 years and used to be like you. Went to uni, worked long hours, exercised a lot,etc then I got glandular fever but was determined I was going back to work even though I knew I wasn't really up to it. Got diagnosed with ME but still determined to try and go to work. Managed to work part time on and (mostly) off  for 10 years till I had a HUGE relapse and got paid off on health grounds. Have never been good or worked since. Got CBT at the hospital and the specialist said I had probably made my condition worse by pushing myself all these years. Looking back I was not even happy - I was working or sleeping/resting to have the energy to go to work again. Now I accept my limitations and am probably happier than I was when I was working. There is no shame in not working - you did not choose to be ill!. You should choose to do what you think will make you happy and not worry about what people think of you. There are lots of part time jobs/voluntary work/local courses you could do if you feel the job is not for you. You could also take up a hobby you could do at home. You should do what feels right for you.....  
  • Tidsel
    Tidsel niki_90453

    Posted

    ".. being A type personality always felt that I wasn't achiving and of course I have my dreams that need finances to support them."

    Niki, it is known that what many many ME people have in common is over achieving before the illness struck. Maybe it is even part of the whole picture, that we have had some frailty in our system that got pounded on for too long, and then an illness triggers the ME.

    Facing ME is facing that though we are still the same Person, we do not and can never again have the same Life.

    You had it in your hand! "To be honest I learnt to slow down and love life." Many ME people and people with other chronic illnesses never make it to there. They get bitter, or depressed, or suicidal and in fact the suicide rate is much higher for us. They yearn for what they had, work, maybe dancing or swimming or riding or travelling or pursuing interests now denied. They Never find peace.

    But you niki, you had it. Please, wring the neck of whatever inner thoughts from the past are trying to steal your peace, and go back there.

     

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