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 have cancer, likely to always be tired, unless it kills me.

I take naps as part of my regular routine. I also really protect my energy. I say no to anything I don’t really love, so I have energy for what I do.

I’ve got a neurological disease. I press on as best I can.

Errm....no.

I don't really manage 😂

Yes it is a bit depressing.

And very boring.

I attended a CFS clinic about 12 years ago. That in itself was difficult. It did not help me mentally, as it was very much of the attitude that we would likely never recover. Not helpful and not what I needed to hear. The NHS went against everything I had read by Dr Sarah Myhill, except with regards to resting and pacing. The clinic reinforced that for me. Its the only 'medicine' available to those with chronic fatigue. Eventually had to leave work and we have struggled financially along the way, but I'm now back at work 2 days a week in a job I love. I know I'm running on adrenaline when I'm there; I'm not able to pace and the adrenaline drops as soon as I leave the premises. The exhaustion that hits me as I'm safely home is like nothing else. You all know that feeling. Sometimes the exhaustion makes me sob, but its worth it. I know I'm likely to always have cfs and not recover fully, but I'm able to have a life, albeit extremely structured. And I think that's the key. Any recovery is not linear and life events have a way of derailing you. Maybe I have been fortunate, but I was extremely disciplined and patient and only very gradually, over the years, pushed out the boundaries. I understand that a lot of people have responsibilities that do not always allow for this approach. Its the only time I've been grateful for not having children.

There's definitely a balance. If I do nothing I get fatigued, if I do too much I get fatigued. In-between there is a very narrow window. It has taken years to learn how to stay within it. And I still get it wrong.

I reduced my working hours. I was always off sick when I worked full time. And I couldn't do anything when I wasn't at work except sleep. I retrained in a desk based job that paid a lot less so reduced my salary to a quarter if what it had been, but being better off was pointless as I had bi life. Now we are poorer but at least I have some capacity for life.

Without DHs support I would be unable to work at all and would be on benefits for life.

Littleanchor I used a timer that my mum had given me, to time whatever I was doing. To begin with it was 10 minutes for a task; 15 minutes, and I gradually built the time up. I was strict with myself, but I did had the luxury to do this, as I had help and understanding from my husband. But I was responsible for the discipline, not him. Dr Sarah Myhills book was my bible and I turned into a detective with regard to diet and supplements. If you are able, look into diet with regard to inflammation. Once you've had your surgery, life should improve immeasurably from that aspect and then you can do your bit to recover. I have to tell myself that the bad bits are just blips ( I don't ALWAYS believe it🤔) and they will pass (they always do🙂). Take everything you are able to do as a little victory. It won't mean anything to anyone else, but it will to you x

I’m going to look that up, thank you. I never believe that the bad parts are a blip. I always think, that’s it, I’ll be like this forever, I’ll be bed bound. Then I get intense feelings of guilt for my husband that I’m making his life worse and he can’t do as much with me, and would be better off with someone else who was normal etc.

I've had to learn pacing, have help at home, eg cleaner, gardener, I do some gardening it is one of my joys, but help trimming shrubs and lawn. The raised flower beds give me joy. Home hairdresser and chiropodist as my mobility is restricted.
Accepting my limitations, and accepting I have to miss outings at times. A slower pace of life, aiming to keep some friendships alive, I have time to think of others as I was medically retired.

Littleanchor it goes against the grain, but where possible, we have to be a little bit selfish and guard our energy. Those feelings are perfectly natural and I've apologised to my husband on more than one occasion! I have a backup male friend, for when I'm not up to going to things we have planned together, such as gigs, and I'm happy for him to go to other things without me, as I'm sure you are too. The anxiety of not being able to do something, that was planned way in advance, has been difficult to overcome, but I've mostly got there. If you have the choice, never push yourself to do something that you do not have the energy for. Especially housework; it can wait! And keep telling yourself, the blips really are blips x

Accept it. Learn to recognise it for what it is and that you’re not being lazy. This is the story that your life has become. My experience is that I have to learn this again and again because I seem to forget or think that this isn’t really me.

Also, a lot of the stuff about health and fitness has to be modified. Exercise is good but you often do what other people do, so don’t compare yourself with healthy people.

Learn the signs : if you find yourself going to bed at 6:30 then that’s what you need to do

Diagnosed Hypothyroid 3 years ago but been unwell since covid. Managed to stay working as I work from home part time.
Have a child at primary school and I prioritise doing the school run (in car), cooking dinner and work.
Have had to outsource cleaning!
Worried about deconditioning and can see my steps are down on last winter, so ive bought a treadmill to try and get more in during the day when I have the energy.

I think a selection of antidepressants are the main reason I sort of cope with it, having gone from being hugely active and very fit and training many hours pretty much every day in various dance and sports, to now be in about year 30 of ME / CFS and more recently nerve compressions causing constant extreme pain in arms / neck / legs / shoulders, without them I think I may well have given up and ended my life as it's often felt like it's not really a life. I've not been able to have kids, no real job so no career to celebrate like my sister who earns huge amounts and has a serious and responsible job and I've only just recently managed a few hours a week wfh (a benefit of covid era for me as before the same sort of roles were all in offices etc). Now live in an accessible annex in my parents garden and rely on them a lot despite being in my 50s now. So antidepressants and don't think about what I lose or am missing out on is my main coping strategy, and my dogs is what keeps me going even though sometimes it feels like it's not worth it, there is usually something coming that is worth looking forward too, even if it's not the things you wanted / planned / dreamed of.

I stepped back from life. I do what I can, when I can.

I try to keep my spirits up by reading good books and going on little adventures. These involve getting on a random bus and seeing where I end up. I then have to spend a couple of days recovering, but at least I had a nice time.

Ah yeah its tricky. I still over do it, but if I go and cook something fast, no major stirring and watching the pot stuff, I sit where I can and wait on it cooking, I then rest. I tidy a little, then rest. I put washing on, then hang it up hours later. I never feel amazing. I just do the things that need doing in ways I can cope.

I spent years in bed most of the time, even started using a mobility scooter in my 30s for outings.

During that time a G.P one day told me I had become too used to scooter and not moving and started feeling my thighs to tell me my leg muscles where going, and then I started to think about that.

I started not being scared to do small things but I have a lot of limits and rest after tasks. If tasks are too big they get split into chunks even if it makes 1 big task take days lol. or weeks, Who knows.

Used to enjoy walking and now I can do some shops and that's me. I cant really go on walks as such as I feel too "off" and it gives me anxiety. If that makes sense. I could not risk being too far a walk from the car (that my dh drives as I never learned, but it means I am home a lot during the day as he works long hours all week)

Hope that made sense. I walk on the spot at home some days for 5 to 10 mins very slowly while watching one of those walking tour of someplace videos on youtube. I often "go walks in" nordic countries lol. Its hard but I enjoy it actually so its worth it for some sort of movement. Helps the depression.

I have psoriasis so have good and bad days. However, I do get things done on the good days because it makes me feel better mentally. It's worth it for me overall.

Regarding exercise, as PP has mentioned, I sometimes follow a seated routine on Youtube. I have some light weights, which I sometimes use as well. I try to do this at least twice a week. Seeing as I am not very active, I figured that it is important to do a little something.

I have had to stop working six months ago and that's been hard to accept while I'm in this stage of my life. But my medication makes me very sleepy and finding a WFH part time job is seemingly impossible.

DW does a lot of the household tasks. We had a cleaner but can't afford it while I'm not working.

Guilt is something I battle with. I'm not working so I feel I SHOULD be doing all the cooking/cleaning etc yet often cant manage them.

I have to pace myself and accept I can't do what I used to do. If I have a busier day planned the following one has to be very quiet.
I read a lot which keeps me active mentally and is something to look forward to when resting.

Each day I make to do lists that include even basic things like "wash hair", "make lunch". It helps me see the "invisible" tasks which might get overlooked and I can better judge what extras I can add in. Also gives me a sense of achievement even on a very quiet day - I have still achieved things like self care, hygiene etc.

I try to look after my mental health with things to enjoy and look forward to, even if it's having a bath or tea and biscuits.

I saw a counsellor for a while, to talk about the situation and the feelings it caused. I'm aware it can make me feel useless and a burden. I try to be honest with my partner and friends if I'm feeling that way.

I try not to use negative language about myself, "lazy" "selfish" etc. I'm disabled and I need accommodations in life. I'm not imagining it or faking. I try to advocate for myself and treat myself with consideration.

I hope these are not too obvious to be useful. I find the psychological side of it quite tangled and it helps me to be clear in my head about it.

I’ve got Graves’ disease accompanied by thyroid eye disease which leaves me exhausted. I had to give up work recently partly because I was too exhausted to carry on as it was very physical. I find that taking certain supplements help. Also getting a good sleep helps which means I have to be really strict with my bedtime routine. I try to be very good with money so I can take work breaks when I need to. Most importantly I listen to my body. If I’m exhausted one day I’ll take it easy (I’ve got 3 yo twins so as easy as I can). It’s a new diagnosis so I’m figuring it out as best I can.

It's really tough living with an energy limiting condition.
Use an activity diary to work out which activities impact your fatigue and other symptoms. Activities will use high, low or medium amounts of energy. Other activities will boost energy levels.

Remember Social, Physical, Emotional, Cognitive and Sensory activities can impact.

Using the diary work out what level of activity you can do without impacting symptoms. This is your baseline or energy limit.

Avoid boom and bust. There is a tendency to try to do more than we are able leading to a cycle of booming and crashing. You need to aim to stabilise the amount of energy you use, spread it out across the day and week.

Use the 4 Ps

1. Plan your day / week so that you have a mix of high, low, medium activities and activities that boost your energy.
2. Prioritise the activities you need and want to do, rate them by importance and urgency. Make sure you prioritise activities that bring you joy, as well as mundane tasks.
3. Pace the activities. Make them easier take breaks, ask for help, do activities in small chunks, use equipment that can help.
4. Permission to say no and to say yes. Sometimes say no to others Sometimes say no to yourself too, don't set too high expectations on yourself. But, if someone asks you to do something that is important to you, but you don't have the energy, suggest an alternative activity that uses less energy instead.

But also say yes Sometimes even if you know you will be exhausted, but plan for that activity using pacing to reduce the energy needed.

Make sure you Pause before becoming exhausted.

Be kind to yourself.

Schedule rest into your routine, restful activities need to be mindful.

Inflammatory bowel disease. I work part time (know not everyone can) and lowered my standards for housework, fitness etc. When I'm struggling I think 'what's the least I need to get done today and what's not disastrous if I have to wait?'. Also realising my presence is more important to my DS than activities

Placemarking

I have 3 conditions that cause me to be fatigued one being inflammatory bowel disease that’s been flaring since last August but sadly I have to push myself as I have a mortgage to pay for . Getting Uc and pip isn’t enough for one person I have no idea how people live on it. I couldn’t. I rest as and when I I can.

Factor in rest breaks before you get tired

I have Hashimoto’s & PCOS. The fatigue is unreal. I currently work 32 hours a week. Would I qualify for PIP at all?