CFS = Chronic frustration syndrome

Category: By panda_eyed

It's one of those days. CFS has left me feeling weak, achy, exhausted, flu-ey and twitchy for about three weeks running now. My joints feel like they're made of wood and I move like an old woman. Sleep gives no reprive because of the constant restless feeling in every cell of my body, and I often wake up feeling like I haven't slept. You'd think I'd be used to it by now, but it doesn't get any easier.

I get by though. I work from home, I do nothing that doesn't absolutely need doing, and I'm bloody bored by it. People tell me that I'm brave, that I'm coping well, that I have a good attitude. I don't want to be/have any of those, I don't want pity or admiration. I just want to feel like a normal 23 year old girl. I want to be able to go out to work and still have enough energy to go to the gym or go out afterwards. I want to have days out and not be ill for the next week from post-exertional malaise.

I know it could be worse. Life has dealt me a pretty good hand so far, and I keep having to remind myself of that, to think of how much worse it could be. People think I'm coping; hell, even I thought I was coping, but this morning, just going through the normal morning routine, I felt tears running down my cheeks. They surprised me, because I hadn't realised I was upset until that very moment. I sobbed for a full fifteen minutes before I could pull myself together. I guess I'm just too tired of feeling overly-tired. I really thought I was doing a good job of living with CFS, but recently, I've had a lot of these little breakdowns and bad days, and I feel like I'm coming apart at the seams without noticing.

Imagine how you might feel at the end of a long shitty day when you have flu - your muscles ache, your body is tired, your brain is so exhausted that it hurts. You try and relax, but no matter what you do, you just can't get rid of this feeling. Now imagine having this everyday, 24 hours a day, 7 days a week, and facing the prospect of feeling like this for the rest of your life. You can't, can you? But I can. It's getting to me.

Current mood? Hopeless
 

13 comments so far.

  1. Boso 9:16 pm, February 22, 2007
    Hey hang in there babe. I don't know what to say, but just know that you're in my thoughts and prayers, everyday.
  2. nikkipolani 9:38 pm, February 22, 2007
    Are there no treatments that give you any kind of relief? I'm sorry you seem to be having more bad days than good with CFS... Hugs!
  3. Jia hearts Panda 3:03 pm, February 23, 2007
    u need a great big bear hug

    *hug*
  4. Olivia 9:53 pm, February 23, 2007
    Oh, darling...! What do your specialists say?
    I hope you come to the girlie thingy next weekend, coz you need big huge giant squidgy huggles xxx
  5. Flighty 10:32 pm, February 23, 2007
    Gentle hugs and lots of sympathy. I wish it was more! Take care xx
  6. Feathers 8:07 pm, February 27, 2007
    Just popped in to say hi! Hope you are feeling better. xx
  7. Crazy Lady 11:09 pm, February 27, 2007
    I know how you feel and just read this out to nags with a bit of anger in my voice. Anger that I suffer from it and anger that YOU suffer from it as it pains me to see someone so young with the same problems I had aged 21, it's not fair and not right, you should be out doing normal things and it pisses me right off! ARGH!
    Right, rant over *adjusts crazy hair and face ;o)* don't you worry honey you are getting help for it, it CAN go away and you WILL get better, it's damn hard at first but as time passes you will steadily return to a new normality. Have faith in yourself and the future sweetie, it will be alright. For both of us! I hope all will be well for you to still come over this weekend for the girls night, it’ll be very chilled out and you can pop off to bed any time you feel you need to sleep/rest ok? As you know I’ll completely understand if you need to! ;o) *HUGE MASSIVE huggles*
    xxxxxxxxxxxxxxxxxxxxxxxxxx
  8. Olivia 1:11 pm, February 28, 2007
    Looking forward to Girls Night In.
    xoxoxoxoxox
  9. panda_eyed 5:01 pm, February 28, 2007
    Thanks Boso, you're lovely xxx
    -
    Nikki, they won't treat it medically at the CFS clinic. I was sorely tempted to ask for medication last week, but I'll wait and see what happens at the session on Friday. Thanks for the hugs xxx
    -
    Thanks Jia, just what I needed :) xxx
    -
    Livs, can't wait to get my squidgy huggles :) Not long till I see you now :) xxx
    -
    Flighty, thanks for the hugs and sympathy. It really does help knowing you guys are here xxx
    -
    Feathers, I am, thanks for popping by! xxx
    -
    Diva, I didn't know you had it from the age of 21, how awful! Thanks for the encouragement, you give me hope as you deal with it so well and never let it take you over. I shall have to learn to be more positive, which is hard because it's not a natural trait, but I'm getting there. Thanks sweetpea and I'm looking forward to this weekend xxx
    -
    Livs, I shall see you there :) xxx
  10. Ames 1:15 pm, March 02, 2007
    Oh honey pie!

    Wish I was going to be there this wkend to help give you lots of TLC (plus I just got The Break Up and Just My Luck on dvd..perfect girly night material!)

    Lots of love and hugs honey.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  11. holllyberrry 3:09 am, March 07, 2007
    oh no! feel better!
  12. Catherine Morgan 3:25 am, April 09, 2007
    I have had CFS for over ten years, I recently started a site addressing CFS; with information for patients, family, friends, and health care professionals. I'm like you, in that, some days I think I have it all together, but other days I just want to (and do) cry.

    This is a post from blog:

    a poem

    Although I fight it, it is never far from me, because it is me.

    Living with chronic illnesses that ravage my body, and prevent me from being the person I have always wanted to be.

    My former self sits in the shadow of these illnesses, weeping with the sad reality that there is no escape from them.

    Suffering from debilitating diseases, that are virtually invisible to the outside world, but still hoping someone will see me….here in my own shadow.

    But even if someone did open their eyes and see me, it would still be impossible for them to grab onto the hand of my shadow.

    So I must learn to live here, living in the shadow of myself, and try to find peace.
  13. panda_eyed 1:36 am, April 24, 2007
    Hey Catherine, thanks so much for visiting and leaving a comment. I loved your poem because it sums up perfectly so many of the frustrations we live with - thanks for sharing it.

    I only recently joined a CFS group, and it's been a great help talking to other people with the disorder. I shall be sure to visit your site as I think it's important to have a good support network. Keep your head up sweetie :) xxxxxxxxxxxxxxxxxxx

Something to say?