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Could really use some positive reinforcement, folks!

Posted , 14 users are following.

Sassylass
Sassylass

CFS, ME, SEID, whatever it is. Been dealing with it, trying to stay upbeat, even given advice to others. But I've got to tell you, having a really bad day today. Well, longer than that but....

I guess I've just got to vent and so here I go.

I'm 53 years old and my life is just passing me by. I cannot resign myself to feeling like this for the rest of my days. Trying to be as proactive as I'm able most days, Well, some days, but jeez it just seems so ridiculous to have to DRAG yourself through the day.

But then I look at other people who have far more to overcome than I do, and I feel guilty for feeling sorry for myself. I look at elderly people with complete Awe because I see so many of them out doing what I am not. I get angry at myself and think that maybe I'm just being a wimp, but I know that isn't the case. I don't need counseling, or antidepressants, BTW, I guess I just needed to write it out. Just so tired of bein tired, and I know about pacing, acceptance and all that but I just really hope for a miracle instead. Anyway, I end this day as I do every day, hoping for a better day tomorrow.

5 likes, 50 replies

50 Replies

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  • ChrissyC
    ChrissyC Sassylass

    Posted

    Before I was diagnosed when I hadn't a clue what was going on I felt so horrified with myself that I must be an incredibly lazy person. And even now I care a lot that I must appear that way to everyone who either doesn't know what is wrong with me or who chooses not to understand. I shouldn't care, the important people in my life are there for me, but I do. 

    It's about enjoying what you CAN do rather than getting upset about what you can't. I KNOW it's easier said than done. Sometimes it's relative to other things. E.g. I've just got back from the doctors because I have a small lump in my armpit. I've been wiped out with anxiety. But it's just a sebaceous cyst! Right now this second in the aftermath of my relief I'm thinking, actually I'll take CFS instead of the cancer this could have been any day. But I know another time the old frustrations will rear their ugly heads again. I do try to enjoy every little thing that is still possible for me but freely admit I don't always succeed.

    • Sassylass
      Sassylass ChrissyC

      Posted

      Yep, ChrissyC,

      I have had a few medical false alarms myself so I know what you mean. Suddenly everything looks not so bad to you in that rush of relief, doesn't it? I know that I promised myself that I would keep on feeling that gratitude and new found optimism forever! In the wake of my good news. Easier said than done. Time and troubles faded that feeling, and I'm glad you reminded me of it. I'm also happy for your good news.

    • ChrissyC
      ChrissyC Sassylass

      Posted

      Ah thanks 😀. But I suppose it has to fade in this way or else it wouldn't fade when something bad happens either. You know how time fades something nasty and makes it more bearable? Has to work for both respects to happen at all. Eh we're all entitled to wallow occasionally. Having each other here really does help doesn't it?! Hang in there Sassylass X
  • Ravenwood
    Ravenwood Sassylass

    Posted

    Oh, I agree with you.  This have been a truly horrible summer in the Southwest.  Instead of being hot and dry, it is hot and muggy.  I don't think I have ever hurt as much as I do now.  Last week, I laughed (cried?) because an 80 year old woman who is disabled is able to do more than I can at 43 years old.  My husband held my hand.  I keep hoping that the symptom deterioration that I am going through this year is temporary and that I will bounce back a bit.  I am scared that I am getting sicker.  Hell, if I get any sicker, I'll end up in an electric wheelchair to maintain any level of pacing.  It is total crap. 

    I really understand where you are coming from.  This disease seems to take away our lives and our ability to enjoy life.  I get so frustrated when I am so tired and in pain that I can't even read a book or watch TV without making things worse.  I want a CURE!!! 

    • ChrissyC
      ChrissyC Ravenwood

      Posted

      Aw I'm so sorry you feel this bad just now. I don't know what to say, certainly won't bother you with platitudes. Just I really really hope you feel relatively better fairly soon. And keep talking to us when you can manage it.
    • Sassylass
      Sassylass Ravenwood

      Posted

      Hoping this is a rough patch which passes quickly, Ravenwood.
    • Sassylass
      Sassylass Ravenwood

      Posted

      🌷🌻🌼🌺🌹🌸

      Ravewood, sending you a garden.

      Sassy

    • Sassylass
      Sassylass

      Posted

      Ravenwood,

      For hope.

    • Ravenwood
      Ravenwood Sassylass

      Posted

      Thank you! That's the prettiest garden I've ever received!
  • lucy14282
    lucy14282 Sassylass

    Posted

    Don't give up, keep going. Iam about to turn 60 and was diag. 3 months ago.

    At least I know I definatley have something now, before I thought I was just turning into a lazy, neurotic woman! Its such a frustrating illness. Today I just had my first nap...I was told not to give in to it and keep going thru the day, but the legs went today so I had to lay down. I must say, after 40mins dozing, I do feel a little more human.   BTW what is with the nausea and headaches? So irritating!

    Cheers

    • artistmike
      artistmike lucy14282

      Posted

      Lucy, take my advice, give in to it, it will make you feel a lot better than trying to keep going when you're feeling rough.

      I have a regular short nap in the afternoon as I'm sure quite a few others do. I know that I couldn't get through the day without it and I bet that the ones telling you no to give in, haven't got ME/CFS so it's easy for them.

      It always amazes me how much they think they know about it all, without actually having to go through it all on a daily basis.. rolleyes  .... smile

    • Ravenwood
      Ravenwood lucy14282

      Posted

      Lucy, I agree with Mike.  Naps can be quite essential.  Often I am so tired half way through the day that I see double.  A nap, even a long one, can ease the exhaustion and pain.  I would go for it.  Sleep . . . .

      p.s. the nausea and headaches are normal for we sick ones.  You'll just need to find what foods you can eat without upsetting your stomach.  Also, if you keep your head supported throughout the day (pillow, lazy-boy, etc.) the headaches will abate.  Also, if you are a medication person as I am, there are a few decent meds that will help if the headaches are too severe.

      Take care.  Sorry you got to join our lot of sick ones.  Hugs.

    • lucy14282
      lucy14282 Ravenwood

      Posted

      Thanks everyone for your advice and support. I just posted some text but it dissapeared with a power failure, so not sure where it went. Not to worry will write it again here. Thanks for the nap advice, it sounds good to me. So many times in the past weeks I have wanted to nap, but kept going. Now I know better.  Perhaps in time, we can help each other out of all this, it certainly helps to chat with people who are suffering the same thing.  Thanks again, Cheers
    • Longtallval
      Longtallval artistmike

      Posted

      Hi Mike,

      I totally agree with you, very wise words.  I have tried to give a similar response to Sassylass, as best i can, but you've put it better than me and in a nutshell!!  Haven't heard from you for a while.  i hope you are alright as can be?

      I haven't been on my PC very mush lately though.

      I truly agree with you, that Sassylass should give in to it and take it easy and step-by-step.

      Take care everyone.  xx

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