Lack of sleep, and the hazy, uncontrollable, unrelenting exhaustion that zaps every bit of energy from my body – a CFS flare. It has taken over my body, mind and soul and I feel it in everything I try to do and it is in every thought in my head. It’s hard to explain to people but when a flare hits it is almost like becoming another person. When I am not in a flare, I am bubbly, happy, always smiling, positive, and have tons of goals and dreams that I am ready to shoot for.
When the ME/CFS flare hits, I become depressed, detached, lifeless. I have no drive or no desire to see anyone, talk to anyone, be around anyone – I just want to be alone. I don’t care about anything and the only thing my body begs for is to sleep. I don’t want to eat, I don’t want to drink, I don’t want to deal with the normal tasks of everyday life because everything is so overwhelming during a flare.
With ME/CFS, we are surviving on only a small amount of energy and that has to last. When that supply is gone, it’s gone – there isn’t anymore left. I’ve said it many times before – we have to plan our days so that we have enough energy to make it to the end of the day so that we can get done what we need to get done. If we have a flare, we’re screwed because guess what? There is now no energy reserve at all – there is nothing to take from. We are running on empty and because we don’t sleep, it takes so much longer to build our energy reserve back up.
That’s when the overwhelming feelings kick in because we still have responsibilities and things to do and our bodies are fighting us every step of the way. We break down because our illness has once again taken over our lives and we have no option but to give into it. There’s no use trying to fight and push against ME/CFS because it wins every single time. The disease always wins – no matter what.
I hate feeling like crap – like nothing. That’s what I feel like during a flare.
I’m sick of not feeling like doing what I need to do. House is a mess.
I can’t even get paper work done for our taxes. I hurt so bad and want to sleep 12 hrs at night then 3-4 a day. It’s not a life. Did feel some better this week-end so I could spend a little time with my grandboys.
I feel your pain, because that is exactly how I feel. I just recently had people say “oh you don’t look ill”, or “you look like you have energy” but I don’t, I just put on a face during the flare up and push through it with a smile so that people don’t get tired of hearing me say “I’m tired, I’m exhausted, I can’t do it, I have no energy”….
But only I know how I feel everyday. If only one could walk in your shoes.
I happen to have multiple schlerosis which also has a reputation for making you very tired. And then there is the Vitamin D deficiency that may also be related. I am so tired that taking Provigil makes only a short lived, minor improvement. I will ask my Neurologist as soon as I can get an appointment and would appreciate any other input about this. Gotta go to bed now…
Thanks.
All my friends think that I am lazy….but thats NOT true. I’m just too exhausted allways to do something…its very hard to explain it to them.
Have had ME for 35 years & I too am exasperated when people (with kind intentions) say to me ‘well you look fine’. If only they could experience for 35 minutes what I have endured for 35 years, then perhaps they could begin to understand the overwhelming debilitation & feeling of awfulness that a relapse brings with it. I’m fortunate enough to have intermittent spells of remission but am so frustrated at continously having to let people down, knowing full well that, what should be a pleasure, will turn in to the most tortuous & upsetting ordeal.