Today is really hard

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I'm just so exhausted today. I feel like I can't bear it anymore. I had 10 hours sleep last night and woke feeling as though I've had none. I just feel so broken. I've gone off sick from work in the hope that removing stressors will help but in the week I've been off, I think I've had more days of complete exhaustion. I expected to feel better, not worse! I've also had a couple of really good days, like yesterday, which I think makes days like today even harder.

I not really sure why I'm on here posting. I was looking for some advice, something I can do that would help. But I think I just need to off load. It's just so difficult.

I've mediated. I'm going to try do yoga later. I just do these things because they're supposed to help but nothing actually does. I know nothing will actually help in this moment of helping this way. I just want the day to be done. I know tomorrow will likely be better. It usually is. I usually only get one awful day like this and then I pick up for a few, then get knocked again. I know I probably did too much yesterday. I had a spa day. Something I thought could help. I swam 6 (short) lengths. That was probably all too much. I used to swim 100 (long) lengths before work!

I think I'm just having a pity party today.

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  • Posted

    Hi there bettybetter,

    You seem to be answering your own question here. You're acknowledging you did too much yesterday and tomorrow will likely be better. With this condition we need to balance rest and activity and that is hard when we were very active before. I too struggle with the feeling of I'm stuck in CFS/ME land with no way out when i get to such exhaustion. I spent yesterday mainly in bed and today aren't great. I know I did too much by going on a long journey tues-thurs and thinking I'd be ok. I find it hard to somehow remember how I will feel when I do things, even after 5 years of this!  

    Truly hope both our tomorrows feel more manageable.

    Beverley

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    • Posted

      Thanks Beverly. Knowing doesn't make things much easier does it?! I find the pacing part so difficult as what I can do and what knocks me sideways is so inconsistent. I had a spa day a few weeks ago and it was great and I didn't feel knocked afterwards.

      I usually manage to keep quite positive and don't let these really bad days get to me but for some reason today really has. I think it's the expectations I had; that not working would make an immediate difference as would resting loads and even getting the bonus hour's sleep last night would have me all bounding with energy! Being optimistic can have its down sides!

      Is just so difficult sometimes.

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  • Posted

    I completely understand how you feel! I feel the same way this morning. I slept at least 10 hours, but feel as though my battery didn't get charged at all last night. 

    I, too thought that cutting back at work would make things better, but they really haven't. The only difference is that I have more "down" time and more time to rest. 

    On days like these, I do what you do. I try to take it slowly. Get up, have some coffee and take a walk. Getting outdoors seems to help some especially if it is a pretty day. I am not a regular with yoga, but I'm sure that has got to make you feel better.

    Tomorrow may be a better day or maybe not. The unpredictable symptoms are the worse and we have the holidays approaching. That makes things even more stressful for me, especially since we are planning to travel..ugh..

    Anyway, I'm here just to let you know that you're NOT alone. We all have these days and things WILL get better. Have you tried doing some journaling? I really need to get back to it as it is reminder of what triggers these awful days and it helps to remind us that we will have a better day again. Good luck to you. Hope you feel better! KPD

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    • Posted

      Maybe there is something in the air today!

      I managed to take a short walk outside and just stood with the sun shining on my face which felt lovely. That helped.

      Is just crazy how bad feeling fatigued can be.

      I actually have just started journaling. Since I've been signed off work, I thought I would take the opportunity to get in touch with the emotional side of things. I think it's what I need to do and suspect it's underneath my cfs. It's probably why I've been more knocked this week. Hopefully once I've worked through everything, I'll feel the benefit of it.

      Good luck to you too! I'm sure tomorrow will be a much better day.

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  • Posted

    Agree that the weather turning colder can make symptoms worse. After my very negative comment this morning (as mornings are always the worst), I feel much better now. I actually went for a 25 minute walk and did some meditation. As badly as I feel in the mornings, I usually end up feeling better by about mid day and can usually count on 2-4 good hours. 

    I just appreciate those few hours where I feel like I'm not carrying a heavy weight on my shoulders and my head isn't burning! I think journaling is helpful to remind up of the good or better moments. Hope you are feeling better, too Betty!

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    • Posted

      I am feeling a bit better now thanks. Glad you are too. I find I usually manage better in the evenings, like you say the heavy weight and burning head lifts!
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    • Posted

      Glad you are feeling better, too! It is amazing how badly we can feel. It does feel good when the brain fog and burning brains lifts and we are simply left with "fatigue." It's not the fatigue that is that bad; it is definitely the burning brain, achy neck, headaches, and heaviness we feel that are all so terrible. It is like a terrible flu is about to set in. Anyway, glad you are having a better day. Just remember this tomorrow when you wake up feeling exhausted! KPD

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  • Posted

    Can I come to your pity party???! biggrin I so feel your pain!! I particularly identified with the 6 short lengths thing - I tried exactly that about a month ago and it was a DISASTER! I work part time and when I returned to work my boss very sweetly and politely suggested that I don't try that again biggrin sigh...

    Some days are just out the window from the get go. Just curl up, batten down the hatches, give up and collapse in a heap type of days! I have a rule where on these days I just focus on 2 things: 1. eat properly ('cause just eating cereal and biscuits is apparently not a good plan) and 2. do a load of laundry. I don't know why I do laundry. Part of it is that having clean clothes is helpful. I think though that I just like doing laundry. It's a low energy activity which makes me feel like I'm achieving something... taking control of my destiny... and socks. wink

    I used to have three things I focused on, but it turns out that some days I can only count to two :D

    I keep emergency meals in the freezer for such days, so I don't have to actually cook. I would also recommend audible (or other audio book provider!!) so you can just rest up and be read stories. If you can find something like that you can do on these days that you actually enjoy and that keeps your mind off things I think it does help. I think just having a plan for what I do on zombie days helps me. When I (finally) wake up and realise that the day is just not going to happen, I know what to do with myself, rather than just lying there arguing with myself for hours about what I should do??,,, whether I can do it???,,,why this is happening to me????! wink

    Here's to a better tomorrow BettyBetter!! smile x

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    • Posted

      You've very welcome to join the pity party! 😂 there's no dancing though (no energy) and the chat is just people repeatedly saying "I'm tired"! 😂

      That's a great idea about planning for the zero energy days. I'm a chronic optimist so always expect tomorrow to be better and usually have things I want to do that would take some energy which is probably why I struggle so much when it doesn't work out like that.

      I've just read about a book that's coming out called Daring to Rest which sounds amazing and as part of it the author suggests creating a rest cave, which is just a space for you to rest. She's put together a nice free guide for creating it and I think that could be part of my plan, especially for the bad days. Just curl up in the rest cave (which is just my to be on the floor behind my sofa!) and have a book read to me. Sounds like bliss! I may even look forward to my next bad day! 😉

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    • Posted

      What a great plan, Victoria! I think having a few things you can do on a rainy day is a brilliant idea. It sounds as though you know your limitations and have accepted this disease.

      Funny thing..but I find myself doing laundry on these type of days, as well. Definitely makes you feel as though you have accomplished something, and at the same time, you have clean clothes when needed. Love it! Thanks for the great tips.biggrin

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    • Posted

      I'm not a chronic optimist but simply "forget" I can't do things and then end up with worse payback. It's like the smallest burst of energy and my body literally forgets I have CFS/ME! I find myself doing something and forget the payback. It's a constant re visit of "why didn't I think that through? "

      Super strange condition we all share smile

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    • Posted

      Hi there I totally love your attitude to this, absolutely brilliant👍😁

      My cfs is murder just now and I'm feeling so low but you have gave me a definite boost this morning thank you.

      Xxxxx

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  • Posted

    Hi bettybetter

    It's okay to feel crap! frustrated, and irritable, it's a very debilitating disease.It will get better, and tomorrow may be a little easier, but for today, just be a grumpy fed up woman who is suffering from Chronic... Fatigue.. Syndrom, and if you feel better tomorrow, congratulate yourself, celebrate with a glass of wine or a bar of chocolate, Awful days are awful, and if people out there only knew what we really have to put up with, we would get gold medals, because we would deserve them! Hugs being sent your way, even if they are vitual. 

    Julia

     

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