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I've posted a few times in here about my CFS/M.E and always had caring and genuine advice back so i hope this time will be the same. I am just learning all about the condition having been recently diagnosed. I realise that the clue is in the title so-to-speak, but why is the fatigue side of it so overpowering some days? My biggest issue is work. I can have 2,3 or 7days off and feel tired, but still able to push through it if i need to. But as soon as i'm back to work it just takes control of me. The pain and disruptive sleep, along with the depression is enough to have to handle but the fatigue on top just makes it all so much harder to cope with. It makes no odds how much or how little i rest, the moment i get home after a full days work it's as if someone has literally sucked all the life out of me. It's far more than just being "tired". I sit at my desk, and i'm literally fighting with myself just to keep my eyes open. This is exactly what i am doing right now as i type this. There has to be a way of managing it, or something i can do to find the strenght to push through it?! I'm slowly going stir crazy with it all -_-
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I think you need to look at some longer term sick leave. I can't work with this, my friend can't work with it and many people on here can't. It really isn't helpful to "push through" this. I know you just want your life back, me too! But we have this chronic condition and need to be kind to our bodies till it lessens. Check to see if there is a specialist cfs/me clinic you can be referred to so you can get as much support as you can. In regards rest, if you are pushing yourself, then resting but then pushing yourself again, you're undoing the rest you had if that makes sense? I share your frustrations, I really do.
I have struggled in the exact same way that you explain. I have worked a full time office job for the past 2 years after University and I completely understand what you experience when you say you sit at your desk fighting to keep your eyes open and how after work there is literally nothing left inside of you. Every time I would go back to work after being signed off ill I would experience this, and it became more frequent the longer I did it. In the beginning I would have days were I could concentrate and didn't feel so fatigued. I have now been signed off work for 3 months and towards the end of my time in work it was unbearable. I was so tired I felt drunk, I couldn't concentrate, couldn't have normal conversations, felt dizzy just trying to keep my eyes open. I would look away from my colleagues to rest my eyes and would just fall asleep at my desk. No matter what I did to try and prevent this I still felt the same. In the end I resorted to going to the toilets every 30 minutes or so to close my eyes and ended up falling asleep in the toilet cubicle for a few minutes each time. This happened regardless of my efforts, I could have a full 8,9,10 hour sleep the night before which felt uninterrupted and I would have rested sufficiently, yet I would still struggle. I tried having more caffeine, having no caffeine, having short breaks in the toilets, going outside for fresh air, eating regularly in work, tried to completely focus my brain on my work and ignore the overwhelming fatigue but none of this was successful. I was also travelling 3 hours a day to get to work and back which of course did not help, but once I would get in I would literally collapse on the couch. Everything ached and felt heavy and painful particularly my arms and legs, I often felt very nauseas, dizzy, so weak, too tired to string a sentence together. I felt literally like the life had been drained out of me and I was just a shell forcing myself to move through the pain.
I think the best advice for you may be difficult to accept, it has been in my experience. It took me so long to accept that right now, work just isn't possible. I would say that if you're feeling like that regularly in work, you need to speak to your GP and look at taking the time you need off from work to rest. This time 6 months ago although I was struggling so much and was so aware that working was making me more ill, the thought of being signed off for a substantial amount of time was just unthinkable to me. However, I have since found some sort of acceptance of the fact that no job no matter how fulfilling, no career, no amount of money is worth your health. The way I have come to terms with it is that I WILL get better and in order to do this I need to rest now to prevent any long term damage. I believe that working now is counter productive to your future as it's my belief that the longer people push through it, the worse they become or the longer they spend trying to recover. I wish that I had come to this realisation earlier in my illness and perhaps I would have spared myself some damage, but I feel I'm doing the right thing now. When I look back to the time I was pushing myself through work I realise that I am better now than I was then and my hope is that I will keep improving as time goes on until I am me again.
Hope some of this helps, I know personally I find it comforting hearing that other people feel what I feel. It can be very lonely being the only person in your life who understands fully.
I'm not a native english speaker, so sorry for mistakes.
I haven't been working since four years (except from a short thing) and even then I stayed in this push-crash circle until june. My GP was supportive, but the advice was too vague for me: "take good care of yourself", "take enough rest" etc. Apparantly I really needed someone to sit me down and tell me very resolutely "you need to get out of this cycle, as from tomorrow you will take at least two resting breaks a day, one in the morning and one in the afternoon. If you are really tired/sick/aching/... you will sleep for max. 45 mins, if necessary, 2x45 mins in the afternoon. If you are not feeling sleepy you will still stop all activity and input (so no music, television, books etc.), lay down and close your eyes for at least 20 mins. If you get bored (which is often the case, because my head keeps telling me I'm a sissy and I should make myself useful etc.), you do a relaxation exercice like a bodyscan."
I needed someone to tell me that so clearly. I've been doing that since june and two months later I started to feel the difference. Of course, every situation is different, that's just mine. I'm a little less tired, I'm less cranky, my concentration is better, I have fewer fevers, my muscles and my throat ache less, my belly is working way better.
Mixed feelings, sure, because I do even less than before, but finally I'm getting the feeling I'm somehow recovering a little bit. So I think it's working and I hope some day in the near future it will be stable enough to add a little more activity to the mix. Not there yet though.
Take good care!
I struggled for almost 10 years working. I tried adjusting my hours, working part time, finding a less stressful job, etc. I was told by several doctors that I might want to consider not working. I have 4 children and felt like work was my saving grace- a respite from a sometimes chaotic home life! I would also say I didn't have a choice. We needed the money. My last job changed from a less-stressful part time job to the complete opposite and 2 years into it I had what looked like a stroke. At work! I now know it was an episode of sudden severe weakness.
I was never able to go back to work. This was almost 4 years ago and I was diagnosed 3 years ago. I made it my full time job to manage every moment of my life. Do the dishes. Rest. Do a load of laundry. Rest. We can't listen to our bodies like the average person can. We have to proactively avoid crashing or you will go backwards. My experience has been that if I stick with this I can prioritize and enjoy life. If I decide to push myself it's only for something important, like a family gathering and I rest a couple days before and plan for the crash afterward .
I just recently got approved for federal disability (Canada) Which was a 3 year long very difficult challenge. Financially it has been a major struggle but we the thankfully do have my husband's income.
When I look back and thought I continued working because financially I didn't have a choice I was wrong. I DID have a choice. That choice was taken away when I over-did it just one too many times. At some point you may lose that choice as well. I think human nature and society keeps us pushing ourselves, which is counterintuitive to dealing with a disease that requires the exact opposite.
All that negativity aside... there can be hope. I don't know how long you were I'll before being diagnosed but there is a percentage of people who can lead somewhat normal lives if they start taking care of themselves. Look up "pacing" and it might give you some things you can do now to maybe stop progression.
Best wishes to you
Above all, know your enemy...read the Hummingbird Report. It will explain a great deal. Many British gps know little of this disease but you must know. Disability Allowance can be claimed for ME which will help with the bills. Don`t push yourself, it`s the worst thing you can do. Take care.
i can only thoroughly corroborate the essence of what each respondent has suggested - i.e. rest/rest & more rest.
unfortunately GP's have only a rudimentary (blanket like) understanding of ME. they know little of the variable expressions of the condition. that means we have to become experts in the management of the condition ourselves.
i've been repeatedly & unsuccessfully through the ''push & bust'' cycle. i erronelously hope that i can push through each challenge. however, all i do is damage my body further.
i do hope you get some professional advice & support as you go forward.
positive thoughts on the journey.
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