How do you cope with frustration and limits from chronic fatigue syndrome?

[CFSFrustration]

How do you overcome frustration with your own ability to do things/anything with chronic fatigue syndrome ? I’m so frustrated and fed up of it. I’m in a waiting list to see a specialist but could be 18 months or more apparently and I don’t even know if they’ll be able to help.

Not a huge amount of advice but just wanted to send some solidarity.

My DH has chronic fatigue and this is one of the hardest things - his frustration that when his days off work finally come he is too exhausted to properly enjoy them.

It's something that people who don't live with the condition really don't get - it's not 'just a bit tired', it's something else.

Really I think the only thing that helps for him is just trying to accept it. When he needs to sleep, sitting there being annoyed that he needs to sleep just takes pointless time and energy - better to just go for a nap.

I try to help by being as supportive as I can. It's hard for example when I have to look after the little one more than I would if he didn't have this condition, but I try to be understanding and just listen and encourage him to rest when he needs to, and we just enjoy the times when he does have energy as much as we can.

We tend to mostly do low key things like going out for a walk, lunch etc, rather than massive days out.

It's a slower pace of life than it would be with someone else but I love him and he is 100% worth it!

Thankyou. I get the sleep frustration I’ll suddenly feel like I can’t stay awake and get annoyed at myself rather than just have a nap and the level of frustration is so huge and that in itself is mentally exhausting. It’s so hard

Not CFS, but I have cancer and am on long term treatment that causes fatigue, so not the same but the same result really (plus mine might kill me).

I plan in rest and I force myself to have a lie down even if I think I’m not that tired. So my days, our holidays, whatever are planned around the time I’ll most likely need to nap. Like a toddler’s would be.

I also go to bed early. 8:30/9pm I’m heading upstairs to bed with my youngest. I don’t go to sleep then, but I do at least lie down.

And on the flip side of that, exercise. I get 10,000 steps a day most days. I also hike and swim and lift weights. May be more tricky if you have any joint or muscle pain. I don’t at the moment, but have in the past, and I’m so grateful not to be in pain right now, so I absolutely make the most of it. My approach is to use it or lose it. If I truly don’t feel well, then I don’t. But if I do, yes, I’ll walk 5 miles. I keep very intentionally active to the limits of what I can do.

I also have a very involved and supportive Dh. I am not working at the moment, so from my perspective, I need to do the stuff that supports him being able to keep us afloat, if I can. I do most of the school runs, the cooking, a lot of cleaning, but anything I can’t do, he is there 100% doing it so I can look after myself.

With great difficulty. Actually its dh not me that has the chronic fatigue but is so very frustrating both in how little he can do and also the unpredictability of whether today will be a day when he has a little bit of energy to do something or whether it will be a sit on the armchair and stare vacantly into space kind of day. I think the key is to be prepared to have plans changed and make the most of the good days (whilst not doing so much that you destroy yourself for the next week).

May I please suggest the Dr Sarah Myhill book. I followed it to the letter and was disciplined with resting and pacing. I was so ill at the beginning, I had no other choice than to be patient. 12 years later, I now have a much fuller life and back working 2/3 days a week; resemble a rag doll when I arrive back home, but worth it. Sleep is still rubbish, no matter how exhausted I am and know I will never recover fully. Some people do. Also 12 years older, which has a bearing. Days and nights out have to be paced and yes, it is frustrating, but at my worst, unable to get out of bed, I never thought I would reach this point. Is has not been a linear route, bereavements, ill parents and every nasty infection/bug knocks me back, but I've never, thankfully, gone right back to square one. Acceptance is key, as it makes you look after yourself, but my word its hard. I always put every person straight, politely, including Drs, who refer to 'tiredness'. They have no idea.

It’s very hard. These are my tips ( long term sufferer)

Think of rest, not as wasted time, but as time when you’re replenishing your body and banking energy. Make your rests as restful as possible- lying down, ideally no mental stimulation. If you can’t stand having no stimulation at all, listening to music or the radio is much more restful than scrolling on your phone.

Create a routine for every day, of small/very small bursts of activity separated by rests. Try to avoid, as much as you’re able, longer or more intense activities which leave you absolutely flat out exhausted and needing to rest for hours or days. This approach is known as ‘pacing’

Have goals, however small. This may require a lot of rethinking about what you think
is a meaningful goal, but it can be done.

Find things to do that occupy you but don’t exhaust you.

Give yourself a lot of praise for surviving a frustrating situation, and for looking after yourself.

Agree Myhill’s book. Learn as much as you can for yourself, be your own specialist. I learned the most when I got a smart watch and started watching my heart rate. Keeping it under 90bpm helped me recover to where I can live comfortably, although I still have to be very careful and I can’t do much of the fun stuff, nor exercise.

Sorry, meant to say! Also meditation helps me feel happier, peaceful and accept life as it is. Family learned about it and are great, which gives me great feelings. I enjoy nature, and paint. It all helps 😎