Is there really “mild” cfs

Blog entry posted by lnester7, Mar 25, 2018.

If you would have asked me, I would say I have mild cFs. But I think we understimate the little compromise we do day to day to adapt to CFS.
I went to a classical music concert ( trying to behave as a normal person) first thing, I was like wow I used to feel so miserable just by being sitting here. And I was impressed how I sit in so many events in the lasts years and wonder how did I make it? Secondly, I saw those women stand and sing for 2h ( while wearing hills) and all I thinking, something as simple as wearing hills would be a dream, let alone stand for 2h, let alone standing on hills for 2h.
I realized all the little things I cannot do, and how fragile my state is. That was 3 weeks ago and I am still crashed. Just to be a good friend and have a date w a friend. I tried to be normal and the payback is a bitch.

So this is hard for me to
Think there is such a thing as mild.

I am also struggling at work, I had a very schedule live and a huge project came my way and my routine has gone to heck.
The problem is I felt I was doing well becuase I was on a unrealistic self managed routine where I could rest in between and work from home mostly.
The worst is IBS at work is do darn embarrassing. There is not a elegant way to run to a bathroom when you are in the
Middle of some important issue at work.
Also, I had to make a presentation: standing, raising my arms above my head pointing at the board, I was blacking out, I thoguht I was faking it well but plp noticed becuase at the end a person came to talk to me about heart disease.
I have been struggling also driving, I passed out while driving fortunately I was at a light and blackout a few more times before I reached the safety of my home. I had skipped breakfast becuase was stuck in meetings.
Anyways when I am thrown on the reality of live, w not safety net, I fail miserably.
CedarHome likes this.
  1. sissypop
    I agree with snowdrop. I consider myself mild compared to some others affected by it. But if I would compare myself to a totally well person it would be an entirely different thing. I've often said if people I know that don't really understand this ( which is really everyone I know in real life ) felt the way I do they would freak out and be going to the doctor if not the ER. In fact I think that's why so many just don't believe I'm that bad because I'm not aggressively pursuing treatment. They forget that I aggressively pursued treatment for decades and it didn't help or I felt worse.
    lnester7 likes this.
  2. lnester7
    thank you all for feed back. I am going to be back on my full dose OI meds so my fellow drivers are ok. I will talk to doctor in the symptoms when I am on full dose so maybe he can change some things
  3. tabbyj29_11
    thankyou for sharing your experiences and how you try to push through such symptoms to keep going towards your goals. i am concerned though that for your safety and of others on the road-driving sounds too dangerous for you at this time when you are blacking out. perhaps try to find another way to get around until that symptom is more settled down(wouldn't want you to be in accident). personally i can't drive due to blackout during driving test i haven't gone back yet to try again (not until other stresses down and health increased more than currently having some times of more abilities-but still homebound alot to cope). that is great you were there to socialise with a friend-they don't understand thought the impact such has on you? any other way to catch up with them less draining in the future? good you can reflect on your progress and acknowledge limitations. all the best with improving in health and wellbeing asap. ! :) take care :)
    lnester7 likes this.
  4. CedarHome
    I have days when I feel so much better that I forget.... how many medications I'm propped up on and how fragile I am too. The pull to feel capable and competent is so strong!
    Somebody in the Books forum recommended Toni Bernhard's books- I got the How to Be Sick one from the library and it's really helping me mentally re calibrate.
    You are doing amazing well if you can keep a job by the way! And if you still have a friend ;-)
    lnester7 and lafarfelue like this.
  5. Snowdrop
    I think 'mild' ME is not comparing ourselves to well people but to the range of how the illness incapacitates those affected. Going out anywhere would be a milder version than for someone bedridden in a dark room where they can't be disturbed.
    lnester7 and tabbyj29_11 like this.