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?

I used to be really frustrated and depressed about it all (I have ME, ASD, PoTs and a neurological disorder)

I pushed myself to try and be what I thought people would think I should be. I was hospitalised then I gave up work, dh did too as we have a SEN child. I now have a quality of life and a pace of life I can cope with.

CFS is so hard because you need to avoid deconditioning yourself further.

When mine is really bad i usually have a very hot bath to help with pain (cfs is never usually a stand alone illness, i have HSD and arthritis as well) and then rest as well as i can in the evening before getting through the next day. I genuinely believe if i properly stop ill never recover and get back to life and be bed bound (anecdotal stories of this everywhere)

How did you and dh afford to be able to give up work though?

This, do not stop completely, it makes cfs worse I believe. Steady pacing of life. No hiit workouts and stuff though gentle walking as movement.

I applied for PIP and then because ds gets DLA already dh could give up as well we get UC with a carers element and no work commitments. Prior to that I was so ill and was hospitalised for quite a while. We are planning to do this for another couple of years as I’m on the waiting list for some surgeries and then dh will likely go back to work but in a WFH role when im in better health

I have a disability that causes me to be fatigued very easily. I take each day as it comes, as some days I will have more energy, and be able to do more, for example, go to the shops. I know that it is very important to plan ahead food wise, so I batch cook, so when I am low on energy, there is always a healthy cooked meal, that I can take out of the freezer for my evening meal. I don't push myself, and know my limits.

I have a condition called myasthenia which means that the more I use my muscles the less signal gets through so the weaker I feel. This affects my speech and vision as well as my limbs.

It's not always easy because I'm definitely someone who wants to have a lot of get up and go and it feels like my body is in battle with my mind.

I've switched job to one where I can work nearly the whole time from home and which is supportive of me having flare-ups. That has made a huge difference because it means we can afford help around the house and meant I could afford to buy myself an electric wheelchair.

I try to keep moving within reason so will try and get out every day for at least a short walk or a swim and try and do something around the house whether that is a bit of cooking or sorting. My husband does most of the housework though and that makes the most difference.

It's definitely also about finding things you can enjoy doing well resting. Obviously I am helped because my condition doesn't really involve brain fog, or at least that's not one of my symptoms. So I do a lot of reading and listening to audio books if my vision is bad. I've made a nice space at home where I can lie down (my neck gets very weak) that isn't my bed and I keep some nice candles there and a selection of books and blanket s. It's by a Window so I get lots of natural daylight

I have joined book groups online like on Facebook and also enjoy the mum's snapchats about books

I have also found ways to volunteer online doing things like reviewing Grant application for a grant giving charity or reviewing fact sheets for a charity which provides information to people. We have regular zoom sessions which means I get to see people that way too.

My husband is understanding of my condition and if it is bad we were just go out for a drive to sit somewhere to give me a change of scenery

Getting the electric wheelchair has really helped, I don't use it for short walks and I do make sure I exercise, but it means I can take my daughter around the shops and not feel worse and worse well she tries on endless clothes. And it means I can go to a museum with my son and be happy to stay there as long as he wishes to look at the exhibits without worrying about how tired I will be the next day or whether I will be safe to drive home.

No advice for the OP but wanted to comment as I’m currently being investigated for suspected myasthenia and it’s great to see a post from someone who is able to manage to positively! So far my symptoms are all vision/speech/eating related and I’m hoping that it won’t progress further.

I found it hard to accept for quite a long time tbh. Now I think I'm getting the hang of it I try not to over schedule my day and pace as much as possible. For example, if I go to the shops then I won't cook that evening or plan anything else for then.
I try to eat well but honestly speaking, when i'm too tired I will eat crap.
I have teenage DC , and have to work to pay bills so really struggle sometimes.
I have had to let a lot of things go, such as a clean house, social obligations, meeting up with friends etc.

Pacing and a near non existent way of life. I have to be very careful what I do.
I was retired on ill health grounds so no longer work but although that helped me pace it meant financial insecurity and jumping through hoops for benefits and all that repeatedly entails. The mh side is difficult loosing the purpose of work and routine was/is hard.
I try to keep to little routines but still need to be flexible if Im bad. I can just about manage around the house as long as most of the day is spent layed down I can cook tea, wash some pots, put on a load of washing as long as I pace. But if like on Saturday morning I needed to leave the house (was out 3 hours) I ended up in bed yesterday and today. Was it worth it? Yes because it was for dc but the pain and fatigue are hard to manage.
Dc keep me going and are very helpful and understanding (late teens so independent). I do worry about how I'll manage when they leave home both physically and mentally. Most weeks they are the only people i speak to as getting out is difficult so if I lived alone it would be worse.
I think acceptance has helped over the years. Just accepting this is life and theres no miracle cure (I did live in hope but 11 years on and deterioration of condition meant acceptance of current situation is better mentally than hope of a cure).
I still have a lot of guilt-parental guilt that I'm not doing parenting how i hoped and planned) and that dc was 5 when they became a young carer, guilt I'm claiming benefits and not working, guilt it may seem ive given up (I haven't but I have to accept the current situation because thats better for my mh).
I have a medical report which is an assessment by three Dr's two nhs, one independent describing my condition and concluding I'd never work again when I originally read it l couldn't accept it/take it in but now many years later I accept and I think thats come with time and a grieving process.
So I think its a process, sometimes you need time, maybe therapy (I had emdr which helped) and definitely just acceptance of this is where you are now.

Hello! Have you been pointed in the direction of Myaware yet? https://www.myaware.org/

They have a Facebook group too which is really helpful as you can chat to other people with the condition but myaware also review the posts which means you don't get any real nonsense on there

I really struggle when my speech and swallow are bad it's a really isolating feeling and stressful too. Learning to make peace with the fact I need to really curtail the amount of activity in order to manage symptoms has been a hard battle but making those changes and accepting that has made a big difference. Rest really is the best medicine for myasthenia. My family know the warning signs now like droopy eyelid or my speech slowing and will order me to rest (even the children!)

I am not sure if they have prescribed you pyridostigmine yet or if they are waiting further tests, my swallow was so bad that I was prescribed in advance of full diagnosis and it definitely helps.

Happy to chat anytime you're welcome to pm me 1 no

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I had to leave my last job six months ago because the commute, lack of support and toxic environment was making my health even worse.

I now work freelance and mostly from home and it helps me manage my chronic fatigue better and avoid completely burning out.

I also do daily short meditation session ( just using YouTube 10 minute guided meditation video) and regular exercise when I have the strength.

I must say that my social life is very limited because of my health but I have accepted that. I also make sure I get enough sleep.

I have also stopped comparing myself to others and thinking about what my life "should" be like instead I accept my limitations and focus on my health.

I have an underactive thyroid
, high blood pressure and a slight tachycardia, I have RA also (all genetic). My weight is good (9st and I’m 5’ 3) I’m also coeliac which is new and makes me lethargic also.
I work 39hours a week and have 2dc.
I do yoga once a week.
i have a hot bath most nights.
I go to bed at 9:30 most nights.
I rest as much as i can
I walk 2-3 evenings a week also for cardio.

It also helps that I have flexi time and can wfh 2-3 days a week. I can’t afford to not work, giving up/reducing is not an option.

I learnt to listen to my body, not what I think I should do.

Prioritise. Initially cut back to all but the essential- whatever that looks like for you- and spend time on getting fitter/recovery/health.
relaxation, stress management.

Don’t just slow and stop, redirect into health boosting stuff- fresh air, moving yourself however you can, which may be a gentle walk or sitting in the sun waving your arms about. I had physio to help me assess what bits needed work. Breathing exercises. Candles. Meditation.

I didn't do much social/leisure stuff for ages as I didn’t have the capacity. I have gradually built it back in. My brain is gradually working better so cooking and knitting are becoming possible. I range between the different things I’m working on- sometimes physical fitness, sometimes adding in fun stuff, sometimes challenging my brain or addressing a household ‘need’.

I have Parkinson’s roughly stage 3, all reasonably ok, till new year, trying to sort out meds, with Parkinson’s nurse.
Not much joy, my body responds well, then doesn’t after a couple of days.
Before I was fairly active and could cope being out 2/3 hrs.
Live alone with cat, unfit for work, mentally and physically

Thank you so much. I really appreciate the advice - I’m a teacher so the speech difficulties have been so challenging to cope with. I honestly thought I was going mad when it started. I haven’t been prescribed anything yet but have an appointment with my neurologist next week when some test results should hopefully be in, so I’m really hoping I’ll know more then.

Everyday is different I can be fine for a couple of hours then whoosh a brick wall of pain and tiredness hits me and I have no choice but to lie down, I tried pushing thru it and ended up with migraines and vomiting. Our kids know when mummy needs to rest it's not me being awkward, always have meals prepared in freezer so older ones are good at sorting those if or when needed if dh at work. When I take them out they know I'm not feeling great if I sit around a lot so will happily play together. I was fine till I got covid and and life totally changed for us, I went from a very active life style to just plodding along each day sometimes I feel like barely surviving in a cloud. I got extremely depressed at first as it as very active with the children, cooked a lot, did horse riding etc and had to drop most things as it's just to much. I feel like I sit on the sidelines now. Hubby is great, taught himself to cook proper meals, do all washing,housework etc designated certain jobs in the house to older kids after we sat and chatted with them about how my health wasn't going to get better. So we've all had to adapt to a new way of life but it's working and everyone seems happy enough now it's been in place for a while. I've just had my thyroid removed with radioactive treatment recently aswell which is currently making cfs even worse atm

Severe endometriosis. Multiple surgeries, now so rampant in my bowel that it's basically inoperable without leaving me incontinent. Self employed so I can work from home, set my own hours. I wouldn't be able to cope with a normal job. I try to exercise for an hour ish every day which does make a big difference to pain levels. Relaxation techniques and breathing exercises, also for pain management. I go to bed early. No alcohol. Try to eat as well as I can (when I'm not shitting myself inside out). I dumped pretty much everything that wasn't necessary or adding anything to my life, including stressful relatives. I try to appreciate the small things as much as I can. Oh, and private healthcare so I can actually see a specialist when I need to.

I didn’t know this! I have read about pacing though so how does that come into it at the same time? For example, I went to a CFS clinic and the lady told me, if I have energy to not use it all up thinking I can do things. So even if I feel like I COULD do certain things, don’t do them because I’ll suffer for it the next day.

for me, I have endometriosis and also a heart defect. My heart and lungs are very overworked and there’s a lot of stress on my heart. I am waiting for surgery. Plus endometriosis is a full body disease which causes inflammation in the body. Sometimes I go through awful stages where I just feel like I cannot function or do basic daily tasks. Then I go through phases where I feel okay (never at the same level as other people, but at least manageable). I get very down and depressed when I go through the bad phases and not sure what I should and shouldn’t be doing

I brought a wheelchair and became entirely SE (I do consultancy work). I also prioritise a nap each day. I was initially ambulant but since getting my chair my health needs have progressed and I'm now non ambulant. Zero regrets about my chair- if anything its been the very best thing I have done and has made a huge difference to my life.

Also outsource as much as possible. I have a cleaner, I pay someone to do my ironing, I have a stock of Cook ready meals in my freezer for when cooking really isnt happening and an equally large supply of frozen vegetables and ready roast potatoes.

'Pre pacing' is absolutely a thing as well but not often mentioned when the likes of the NHS teach pacing/energy conservation. I met a friend for coffee this afternoon so spent the morning on my sofa resting and doing not much.

For me, pacing is about never overdoing it. I used to think it was having a quiet day after a busy day- no. That’s boom and bust.
Pacing is doing less than you think you could cope with. Over time that increases your capacity and you get better at knowing what you can cope with.

And as @borisjohnsonsliedetector says, pre pacing- saving up your energy ready for doing something later.

I worked for as long as I could, to build up pension and get closer to state pension.
That meant that I had energy only to work and all the things I wanted to sort out in the house had to wait. So retirement has meant a great deal of work, unfortunately, even though I’m a lot happier.
I manage by having a cleaner, pacing myself very carefully and having frequent rests. And saying no.

The word 'accept' seems to feature in a lot of replies, and is very apt. I used to compare myself to other people, when I was younger, not taking into account that they were not disabled, and that I was,(not that I saw myself like that as a Teenager). I did not understand why I was always tired, and could not do 'normal' things without needing to rest so much, the next day, for example. Learning to accept my normal, has freed me from so much. I am grateful for what I can do, and take pleasure from small things, such as sitting in the garden, on a warm Summers day.