Trying To Live A Normal Life with CFS Doesn’t Work

I am a very stubborn person and no matter how hard I try, I still try to be “normal” while having CFS to a certain degree.  I’m definitely not as bad as I used to be and I have slowed down a tremendous amount, but I still have this yearning need to try and prove that I can be a normal person while dealing with all of this chronic illness crap.  I’m failing at it miserably, however.  I feel like I’m failing at it anyway even though others would probably see it differently. 

I had really gotten myself to a point where I had accepted my illnesses and was making major improvements in how I viewed myself.  But I’ve started to slip back again into my old thinking and I need to get those thoughts out of my head and get myself under control or I will be headed for another major physical downslide.  I can’t afford to do that to myself or to my family.

We are always a work in progress and can never stop working on ourselves emotionally as well as physically.  I continue to have this desperate need to always try and prove myself for some reason and I can’t figure out why.  I don’t know if I’m trying to prove my worth to those around me or to myself.  I know that having CFS and trying to live a normal life doesn’t work.  It just makes the CFS worse and life worse in general  – the total opposite of what I want to happen.

I know that CFS is in my life and will probably be in my life forever, I just still have days where I don’t want to accept that.  Acceptance is something that I have also found is something I have had to struggle with over the years.  I guess when we are sick for so long, we tend to go through the grieving process many times and I’m going through it again and right now I’m dealing with the acceptance part.  After 20 years, it is still hard to accept the fact that I can’t get up and go, work, play, and just live like everyone else.  It’s not fair.  That sounds childish, I know, because I realize that life isn’t fair.  But that is how I feel.  It’s not fair to all of us who are sick every single day, struggling every single day, trying to get through all of these emotions every single day, without understanding from others.  Without compassion from doctors who took oaths to show care and compassion to all patients.  Without love and respect from our own family members who know us better than anyone else but are the least sympathetic to our problems.  It sucks and if I want to have a five-minute pity party for myself every few months, by golly, I’m entitled to it.  I’ve earned it.  We’ve all earned it. 

I’m tired of people telling me that it is going to be okay because the people that say it is going to be okay are normal, they are okay.  They aren’t sick, they aren’t suffering, they can get up and go and not have to worry about whether they will be able to get out of bed today or not.  Pep talks and rah rah speeches are not what we need.  We just need people to listen to us – that’s it.  Just someone who will listen and show some care and compassion.  I don’t think that’s asking for too much.

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  1. Great post, Sandy! Yes acceptance is critical simply because we really can’t live fruitfully in the present while ruing the past and what we’ve lost. Its a tough road for sure but acceptance really plumps us right down where we are and lets us come to peace with it and then carve out what life we can. I just came across this phrase “Happiness is accepting what is” – I agree with it completely. Good luck on your journey!

  2. Sometimes when flares go on for days, I seriously wonder if I’ll ever feel anything close to resembling normal again. Then when I have flashes of “normal” (or close enough I can remember what it was like) it’s almost depressing because I know it won’t last more than a day or two or three. While it’s nice to have someone to listen and understand, there’s really only one person in my life to does “get it” — that’s hubby. Others are concerned and they ask “how are you” but I don’t elaborate cause they really don’t know what to say. So my blog friends who do “get it” are my sounding boards :-)

  3. I’m reading your post as my body is screaming…tomorrow another fruitless MRI. For today, I HATE this illness, and I know acceptance is the answer. Some days I have that acceptance and others I vacillate through the stages of the grieving process. Happiness is a by-product of acceptance. I know that intellectually. It’s in my best interest to incorporate that emotionally as much as possible. So, for today, as I’m on meds, bedridden except to use the bathroom, wracked with pain….I hate this. Perhaps tomorrow I will be on a more serene level of acceptance. My husband is also the only one who can understand and even he has his days. He’s human. I’m human in pain/illness. Some days are rough between us, but we’re deeply committed to one another.

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