Can anyone explain what living and working with chronic fatigue is like

[Orangeducks]

I was wondering if people could help me understand what its like to have Chronic Fatigue. My job share partner has it and has been off work for 6 months and is on phased return. I have had to pick up a huge amount of her work and am starting to feel a bit bogged down by it. I'm trying to stay empathetic but as I have no experience of being chronically exhausted, I'm finding im getting frustrated more than I want to or think is fair. Has anyone experienced it and could explain what its like, how you work etc?

I also have ME. I can’t tell you how much it means to us people with ME when someone bothers to find out what it’s like.

One of the hardest things about it is that most of us look normal much of the time, but inside our bodies are very broken. I’ve been out this evening doing a hobby which I love with a good group of people. I spent most of the day in bed so that I had enough energy to go. But nobody sees that. It would be completely unthinkable for me to spend a day at work and then go out in the evening. I could no more do that than an average person could run two marathons in a day.

This link should take you to a brilliant little comic by Mahli Quinn: ‘But you did it before?’. It’s one of the best explanations around for what it’s like to live with ME.
www.facebook.com/103680791453581/posts/pfbid0zPrQYoAmMGCmuXg6roLw2jGwKWwCs3TEHTAphjRacKDhMdJtEU5ghAKVV2gVeaa6l/?

It's like waking with a hangover from a 3 day bender, you ache in places you didn't know existed, your limbs feel like they are full of lead & your brain is full of candyfloss.
You can have what you think is the best sleep in the world & still feel totally knackered, go back to sleep for a few more hours & still feel the same. When you eventually get up even getting dressed & making a cup of tea & some toast can feel like climbing Mount Everest. Your brain is full of fog, think baby brain on steroids, you forget words, names, sometimes can't even string a sentence together. The daftest things can affect you, clothes that look super comfy feel like you are wearing something knitted in Brillo pads, seams & labels can rub, a Jeans button can feel like you have a bullet stuck in you, everything feels restrictive & irritating. The only way I can describe a typical day for someone with chronic fatigue is using the spoons method, you have 20 spoons for the day, this is for both physical, mental & emotional energy.

Get up, showered, dressed 5 spoons
Breakfast & getting off to work 2 spoons
Working day 5 spoons
Travel home 2 spoons
Get home prepare a meal 2 spoons
Tidy house up & odd jobs 2 spoons
Try to relax & go to bed 2 spoons

That is a good day, then factor in getting stuck in traffic, a horrendous meeting with your manager or an argument with your partner or receiving bad news, these also count in spoons, but you have already used your daily allowance, you are running on empty, you can't borrow spoons from the rest of the week, you may get away with this once or twice a week but any more & you are heading for a major crash.

You can go to your doctors with your leg hanging off & the doctor will blame your chronic fatigue, there is no protocol for drug treatment to help your symptoms or give you extra energy, any treatment is off label, a stab in the dark to see if it will work, epilepsy medication, anti depressants, sleeping tablets, steroids & sometimes at referral to the chronic fatigue service where you will be told you need to move more, be more active, go for a long walk, a run or bike ride, that you shouldn't be resting as much as you do. Then you will be introduced to the joke that is pacing, have to go to a course where the leader has never suffered from chronic fatigue but thinks that pacing is like waving a magic wand & thinks that everyone should be brainwashed into thinking pacing is a magic bullet. During the seminar you ask a question, you have an autistic child who has meltdowns & is a persistent school refuser, how am I supposed to manage by pacing when I don't know if it will take me 2 hours to get said child into school or if there will be a massive meltdown when they come home. There are several other sufferers who nod in support, the seminar leader then asks if anyone else thinks it will be impossible to manage pacing, several people put their hands up, you are all asked to leave the seminar, obviously not candidates for the cult of pacing, a week later you are discharged from the chronic fatigue service.

You are referred to the pain clinic, attend several sessions with a nurse before you get to the holy grail of seeing a doctor who without looking at any Xrays or scans tries to make you say that the pain you are feeling is all in your head, you tell them that the pain is not in your head, it is in every muscle & joint in your body, they tell you this is impossible & discharge you.

I'm sorry I an cynical but that has been my experience of Chronic Fatigue, I've been diagnosed 13 years & I've not had one doctor do anything that has helped me, the only thing that does is listening to my body & resting when I need to, not pushing through the pain & fatigue, like today I've been helping ds with his campaigning to be a councillor in the May elections, I was only sat stuffing leaflets into envelopes I managed 2 hours & afterwards I couldn't walk, my hands feel like they have been crushed, my back is killing me, by 5.00pm I was in bed dosed up on painkillers.

I've got ME/CFS & Fibromyalgia, the Fibromyalgia started first after giving birth to ds, I had a horrific birth that left me in high dependency & a doctor telling me all my major organs were failing, the Rheumatologist told me that any kind of trauma can contribute to it, I had initially been referred because my GP thought I had Rheumatoid Arthritis. 9 years later I was diagnosed with ME/CFS, overall I've been diagnosed for 22 years, it has cost me my job, my friends, my hopes & aspirations & the life I wanted to lead.

@Quercus5 that comic strip isn't something I've seen before. It's v good. I had the exact issue with the phone call this week but with a video call with colleagues. I said I had 20 mins. It was already extra to my end time. I couldn't stop the meeting without feeling v rude (just hanging up). It absolutely floored me doing an extra half an hour when it overran.

I know it's my issue but some of them are quite selfish and will push to get my time because they want it rather than hear me when I say I have x minutes. They know I'm a team player and want to do it so I'm fighting them and myself. When I am feeling PEM after, I feel really cross with myself. I wondered about trying to explain this stuff to them a bit more.

@Orangeducks I wish for your colleague's sake that her line manager was the one asking. It's wonderful you have asked. Having a good line manager is essential to staying in work. Stripy Lightbulb do work in this area.

@MewithME I manage the fixed time meeting thing by telling people at the start that I have an hour (or whatever my limit is), then I’ll have to leave. Then when the time comes I do literally hang up. As people got more used to me doing that they actually got better at fitting in all the topics they wanted to cover into my time. I got the impression it actually benefitted others for being a more focussed meeting.

Hahaha...I love you for that. I am going to have to get tougher!

OP I think it’s really lovely that you are trying to understand what it’s like for your colleague, that’s a credit to you really.

I find setting an alarm that’s loud enough for the people on the call to hear helps too. It does make it feel a little less rude. When it goes off I wait for people to finish their sentence then we say a quick goodbye.

I went through a ‘radical acceptance’ after decades with ME, where I lost the ability to care what other people think or worry about the consequences. No I just say “No, I’m sorry I can’t do that, it’s too much”, or “I’m sorry I’ve got to go now/sit down immediately”, or whatever. It has really changed my life. I used to worry so much that people might think I was lazy, now I just don’t care. I know I’m not lazy. You know you’re not lazy. Don’t ever put your precious little energy in jeopardy trying to pretend to be a healthy person so others won’t make judgements. x

@Nat6999 I really hear you! I went through the same when mine were little. It really does get easier as they get older, hang in there. Even with young children, even though you can’t rest and pace completely you can still apply the concepts of pacing and making life as easy as it can be. If that means sticking them in front of a film with a bag of crisps so you can get a rest in, so be it! Needs must.

I was re-referred to clinic last year, and they no longer advocate movement and exercise (unless you can manage a short walk). They were very much about not doing anything you don’t need to. I got a right bollocking from them for getting a shower every day, even though I’ve got a seat in my shower. It’s good to see times (and NICE guidelines) are changing.

I have Adrenal Insufficiency which causes chronic fatigue along with other symptoms. I've never known anything else as I was born with it. I suppose the biggest difference for me is that some people can "push through" and it makes them stronger. If I "push through" there's a good chance I'll end up in crisis and be hospitalised. As an adult, I've had to work hard to ration my energy and not take on too much. I've been judged by a lot of people as not being ambitious or determined enough and considered lazy. They don't understand how much I would love to be a "dynamic go-getter" if I wasn't restricted.

@ImImmortalNowBabyDoll That’s the hardest part - for most people, pushing on will make them stronger and more resilient. For disorders like ours, it would make us much worse. I spent years listening to people tell me I just needed to move more, get more exercise, get out and get some fresh air. Or that I was just deconditioned because I sit round doing nothing. I get that it’s a difficult concept for healthy people to understand. Our bodies don’t work the same, and if they did we wouldn’t be ill!

My DH used to say all those things. Since he has retired he sees me all day every day. He sees the effect that pushing myself has, and he’s done a complete 180. He doesn’t let me move now!

They just had that advert on TV for Revitive - the one with Claire Balding in it. The basic premise is that the woman Claire is there with is just unfit/lazy/a drama queen or whatever, because they've 'only' walked 20 steps from the car park.

I get that, for most people, that may well be the case; but for some, those 20 steps really would be a genuinely significant achievement after which unavoidable exhaustion would be the invariable result.

Thank you for sharing your stories, it sounds so difficult to manage on a dialy basis. If anyone has any experience of working closely with others and managing this, is there anything you find helpful from others? I feel like I send very bland texts a couple of times a week saying 'Hi X, how are you feeling?'. The response is usually fairly similar about feeling tired and low. I make myself cringe with responses like 'hope you feel stronger tomorrow ' but am not really sure what to say?

I'm glad your DH has improved. Mine is incredible tbh. Never once questions why I need a nap, or if I'm "pulling my weight." He just quietly picks up the slack. Makes sure I get my morning coffee in bed and time to drink it, offers me tea, checks I've remembered my meds. I couldn't ask for more.

A friend has long COVID with equivalent of chronic fatigue symptoms. She went back to work full time after a long period of trying to regain her strength pacing etc exercise holistic interventions meditation etc. Over four years I would think she started from the premise that her job and work colleagues would adapt the work to her capabilities. Everyone tried their best. By the time she took voluntary redundancy I think she understood that even though she wanted to work to the standard she had previously it was like squaring the circle and not compatible with the job. Every day she couldn't do what she set herself goals to do and failing apologising letting people down agonising actually made her feel worse. So she changed her career path and is now a thousand times happier.
I think we all thought her misguided for imagining it was mind over matter and thinking she could keep her full time position; in the end it was a matter for HR not for her colleagues which is why the voluntary redundancy was mooted.

But I feel to have to take the slack for someone else's health condition in the long term is not what you signed up for. It's not marriage it's not parenthood.

I haven’t worked for 26 years due to it. Totally debilitating. My life is so difficult. Everything feels too heavy so some days lifting a cup of water is too much. Chewing uses energy I don’t have so I have to have liquid meals. I fall asleep all the time .

I agree, and think it's not fair for a parent or spouse. I've felt guilty for my DH when he's been doing all he can to support me and my health issues (concussion, post concussion syndrome, medication induced movement disorder.)

But equally, I think it's quite hard for the person with the disabilities too, as that's not what they chose. So it kind of works both ways I think 🤔

I have many of these symptoms too. GP dismissed as a normal reaction to extreme stress.

I have chronic fatigue due to psoriatic disease and fibromyalgia. I’ve been off work a year and have just been accepted for ill health retirement. Essentially I wake up feeling exhausted almost every day. When I was really bad last year I literally worked and slept. I went to bed not caring if I woke up, I’d walk from my bedroom to the lounge and be so exhausted I’d need to sit down, I could hardly even dress myself, I couldn’t walk more than a short distance so stayed in most of the time as I couldn’t function like that. It’s still bad, I sleep every day, sometimes like this morning I had 2 hours after taking my child to school and before taking my older child to counselling because I knew I couldn’t even sit in the cafe downstairs for an hour waiting for her without a good rest first. I’m actually here now and can’t wait to get home and sleep again… and that’s after a year off work! I’ll occasionally meet my friend at the pub and I have to brace myself for this and have the next day completely off everything. It’s debilitating, if she’s unlikely to get over it I hope she has a good pension, luckily I have, they’re able to give my full pension had I been working another 13 years too my official retirement date, so it’s less of a blow

Traditionsal wedding vows are "in sickness and in health." In DH's case, he knew what he was signing up for as I have always had AI.