If you live with an illness that causes fatigue, how do you manage?

[Littleanchor]

Just looking for other people’s experiences with this really. How do you get by, how do you not get down and depressed etc? Have you found anything that helps?

@PeonyPatch that's a hard question. If your illness impacts on your ability to live your life independently then I'd say yes go ahead and apply. Good luck

Determination and stubbornness! I had a stroke as a teenager and was told I'd be unable to do pretty much everything I've achieved (at least one medical professional recommended sterilisation for me as well 🙄).

I have arthritis, fibromyalgia and genetic lung disease. I work full time and have a family. Firstly, change your job to fit. I now have a desk job and I can work from home half the time. Take vitamins and supplements. It makes a lot of difference for me. B, D, magnesium, zinc, E, C. Get your sleep right. If you can’t sleep, get medication to help. Recognise your limitations. If I go away for a weekend, I stay in a city centre hotel so I can easily go back and rest mid day. I don’t do whole days of shopping or travelling. Don’t do nothing. No matter how much pain I have, the minimum is a half hour walk a day. Exercise little and often. Lose weight. It makes a difference. My worst fear is losing my ability to walk. I do knee strengthening exercises every day. Rowing, walking, small weights. It gets very real as you get older. My legs give way and I’m not 60 yet. Basically fight it.

See, I have had to learn not to be so determined and stubborn because all the time I kept powering through I was getting more and more unwell. With a condition where rest is a key remedy (like Myasthenia) often letting go of the determination is the battle we have to fight

It goes against my inner nature but it's essential

Pre pacing, pacing and one day at a time.

I have Long Covid/CFS/ME, five years on it is way better, I had managed to get back to working pretty much full time in a busy job. In a blip/flare at the moment, but I know it is temporary, caused by a virus and family related stressful circumstances. I previously also recovered from CFS/ME following glandular fever in my teens. I wish I had known about pacing in the beginning then as my recovery would have been faster.

This course is helpful.

https://www.uhdb.nhs.uk/fatigue-education-course/

This series on YouTube is very useful in breaking down how to do pacing. It helped me find my baseline and then pace and improve from there.

Interesting papers around over the years that suggest if someone recovers from ME then it was an incorrect diagnosis and must've been something else as ME is a life long condition.
Making no judgement on you here Choconuttolata, just remember reading various things about it over the years (but memory too shot to have retained much detail)

@CassandraWebb I also have myasthenia. Don’t normally read other comments about living with it.

I had never heard of it till I was diagnosed! I reckon I had had symptoms for 20 years by then. How are you at the moment? I hope not struggling too much

@CassandraWebbive been to a specialist in london as my regular neuro recommended it and ive been a lot better since I’ve started azathioprine and i have to regulate how much i do in a week as i have three daughters . But they help a lot when I struggle with things like cutting veg for dinner and lifting stuff . I’d never heard of it either!! It started as ocular MG and has progressed over a couple years to generalised . I also think I’ve had symptoms for years . Things in my life made sense once I’d received the diagnosis. How are you managing ? Do you have to balance how much you do ? Are you on medication ?

@allwells yes so much made sense to me when I got my diagnosis, like why I struggled so much to stand in queues. And why I would feel so unwell if I tried to do tasks like folding laundry or chopping veg

I am doing much better since I switched jobs to one that is largely home-based and reduced stress - I had quite a high profile job before and it involved a lot of long days out of the house.

I want to be well to enjoy things with my children but I have had to make peace with my limits. They are Really good at understanding this but I do feel bad

@AdarajamesAgain you can recover from ME/CFS, people do, it is in the literature, but recovery with pacing, reasonable adjustments and modification to lifestyle to manage is not a cure. I have recovered back to my normal baseline without needing to do lifestyle modification after 10 years of symptoms and maintained that for years. That is what they call recovery.

Here I am after another significant viral trigger over a decade after I recovered facing the same journey again, 5 years so far of pacing and lifestyle modification and still having relapses. To hold it in my head that I can 'recover' and get some of my life back is a positive mindset that helps with dealing with the sometimes soul crushing reality of dealing with these symptoms day to day.

Hopefully research in the future will identify the genetic, immunological, metabolic and other factors that put some people (and more women than men) at greater risk of developing ME/CFS and it will lead to some viable treatments that can help the many who don't get back to having a viable quality of life due to this illness.

I forgot to add @allwells I only use pyridostigmine now. The neurologist tried steroids and then mycophenolate but my body reacted really badly to both

So really to some extent my main treatment is just adjusting my life quite dramatically to reduce my activity levels to a point where I don't get really bad symptoms. My swallow and speech were worst affected so it could be quite scary when I choked on food and kind of embarrassing / funny when my speech slurred a lot at

@Choconuttolata having a positive mindset can be so hard though can't it? I find it hard not to slip into self pity sometimes.

Yes very hard @PearlTeapot I go through waves of struggling with it all. Having CBT therapy has helped me deal with the negative cycling and guilt/shame/blaming myself for not being able to do enough/be a good enough parent/be well enough to be at work etc... Although a bit like having a good cry helps, sometimes you have to acknowledge and accept those negative feelings and accept where you are right now (I fought it a lot at first) before you can move forwards.