Could really use some positive reinforcement, folks!

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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.

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  • Posted

    I hate the boredom of days like that and can only offer what helps me in no particular order!

    Remember that not all days are like it.

    On those days I've found laying stock still in silence for half an hour gives me enough in the tank to be able to read or watch something good - maybe a TED lecture online.

    Thankfully I've a wonderful wife who listens. Other friends too, though we also talk about other things as well. Sometimes I can be monotonously dreary and it's not fair on them.

    I have a range of low energy things I can do - variety helps! From listening to music, the sounds in the garden, watching TED lectures, NETFLIX, knitting, sitting and weeding, going out on an electric bike....

    But I still detest the times when only laying flat will do!

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    • Posted

      I admire the sense of peace and acceptance you seem to have going for you. I can't seem to find that for myself. But I'll keep looking. Thank you for you.🍀
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    • Posted

      Well don't read too much of that into me!

      Here's a brief history, two years in:

      I used to be very active and got ill overnight, one month in acute ward.

      Previously, a good hard work out solved most minor things - but I quickly discovered that hardly any exercise wiped me out.  So early on before I had learned that, I made myself walk slow for two miles.  The next day was bad, the one after, worse.  Ten days before I could leave the house.

      After a year, I'd finally got it.  If I did too much (and that might only be walking slow for five minutes) I got deeply drained physically, mentally, emotionally.  So I take great care to avoid that.

      Obviously, inactivity leads to physical downturn even if you are healthy.  I was getting weaker, but worked out that the two worst things were being upright, even sitting at a table - and walking more than ten minutes even really slowly.  That's no good for physical condition.  So I started some 20 second strength exercises, bumbells, doing a plank, sitting against a wall.  I think it's stopped me getting weaker.

      Then somebody taught me a hard but simple lesson.  My reaction to a difficulty is often more of a problem that the difficulty!  So I started to watch my emotions and attempt doing stuff to make them better.  I aim to enjoy what I can do without dwelling on what I can't.  But even then, if I've got too tired, sometimes only a little cry works!

      So, I enjoy watching clouds, feeding sparrows, growing things from seeds, even watching (don't laugh) indoor bowls while knitting.  It's totally different from my previous stuff like cycling flat out for hours, or walking moorland - and I'd love to be able to do those things again - and earn a living.  But I can't - so I try to enjoy a range of little things every morning and every afternoon.  I've also found out drinking water most of the time helps me.

      But, I still do have bursts of frustration and get annoyed easily.  Saying sorry is required too much, too.

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    • Posted

      Oh boy, do I understand those sheepish "I'm sorry"s. My poor kiddo has gotten a few from me.

      Thanks, and these are for you🌻🌼

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  • Posted

    Hi Sassylass;  TOTALLY agree.....I'm in one of those frames of mind, too.....soooo pis....off................and just want to know that I can DO something, without feeling rotten the next day.................and just want to stay  in bed all day....but know that others don't understand that..................xxBron
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    • Posted

      I know, between the frustration with your exhaustion, the anger that no one really "gets it", and the guilt of feeling like you should do more, and then the shame because you see people who seem to be dealing better with situations so much worse.....aaaaaghh.

      Tomorrow's got to be better, right.?

      Actually, it is tomorrow isn't it? 12 :34 am My time. Guess I'd better get to sleep. I sleep for 45 minute to 2 hr intervals, lately, which sure doesn't help matters.

      Keep on hoping for better days, Bron, my sister in sleepiness!🌙

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    • Posted

      actually yes Sassylass; the depletion of sleep, I think, is when I start to "get frustrated/angry/question myself...generally Just down"....like ALL of us....the constant tiredness/sleep deprivation is the main cause I feel for me, to start the "self-pity".....????? as for the "thoughts that others are coping better",    I think is Only a Facade that others put on when either blogging/out in public, for we are all human, and I am yet to meet someone who "is happy all the time"....they don't want to bring us down, further, so do their best to be "happy"......I've very much got the proof that these same people, also have the same issues, whether ill or  not...it's life......Bronwink
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    • Posted

      I agree Bronwyn, some of the most 'up' people I have known have been troubled souls... merely good actors/actresses. Mostly people's expectations of me can greatly exceed my capability, but I do what I can when I can and sod them who don't like that! But if having a rant on here helps sassy, you go for it, when I feel bad sometimes reading posts on here helps just to reassure myself I am by far not alone xx
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  • Posted

    Ah Sassylass, you will have realised that you are not the only one!!  I think one of my difficutlies is in really grasping that CFS is a valid diagnosis not just a label that says 'no-one knows what's wrong with me'.  There are times when I feel so ill that I'm thinking 'surely there must be something wrong with me' and I am not satisfied with the CFS label. And this is after living with CFS for over forty years! Although mine does seem to be hormonally rooted/affected.... my pituitary gland doesn't work very well. In many ways I am much better now.... even ventured to take a part time job two years ago (after 15 years on the sick), and I'm still managing it. I sometimes have to use my holiday to cope with relapses or dips in my condition, but I couldn't have done this fifteen years ago. But working (just 15 hours a week) takes all that I have. I'm fortunate that i don't suffer from boredom..... on bad days bed rest feels so welcome, and if I'm in so much pain or discomfort that I need distraction, I listen to talking books. Through this forum I'm realising how many of us there are 'out there' battling through our lives with CFS/ME, and its good to know you are there.
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  • Posted

    Dear Sassylass

    That at anyrate is a brave name you have chosen. Yes, I have been there when I was in my forties. On a broiling Summer's day in Devon I was huddled in pulovers and greatcoat, unable to keep warm and unable to keep up with my father-in-law who was in his seventies and not very well. 

    You are right about no couselling and no antidepressants. This CFS/ME is real and cannot be talked away and there is no evidence that antidepressants do anything but complicate a bad situation. Patience, intelligence and dogged determination over years are the necessary weapons. Finding and eliminating triggers to the condition is very difficult but very very important.

    I wish you well - mostly it is up to you

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    • Posted

      Hi georgeGG,

      I remember admiring your persistence in tracking down allergens in your home. So ironic that trying to figure out why we're tired is so totally exhausting.😴😷

      But you give good advice..."Patience, intelligence and dogged determination over the years are the necessary weapons.".....

      Well, OK, as long as it doesn't take too long!😃 Sass

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    • Posted

      So cruelly true. A committed helper is a tremendous boon and essential if you have brain fog. Wishing you well.
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    • Posted

      Without a support system of any kind. The worst part of this illness for me right now is having a daughter who is 15 and missing out on a lot because of my fatigue. I refuse to really tell her the whole story, as she stresses enough over the fact that I am older, 53, and we have only each other. It terrifies me to read how debilitated some of us have become. I honestly did not know how severe it could get, and I was diagnosed with CFS 20 years ago. I am still mobile, but slower, and the fatigue is horrible, but in light of some of the stories I'm hearing I don't know if I should be feeling fortunate or scared to death.
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    • Posted

      I bet the flipping menopause doesn't help either. Sympathies on your daughter although you are NOT that old at all of course. My best friend has a JUST 16 year old daughter, like you they have only each other and like me she is coming up 57. The daughter gives her a hard enough time just for the menopausal symptoms she has (no ME) so I think I have an inkling what it's like for you.
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    • Posted

      Let's just say it's pretty hard to lead by example when you can't get off the couch.

      Wow, that sounds humorous.

      Wish it was.

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