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?

It is like wading through wet cement when even the thought of adding a number to your mobile it too exhausting

Imagine if you had to carry 2 pillowcases filled with bricks everywhere you went, plus a backpack with weights in it. That should give you a rough idea.

Are we talking about Chronic Fatigue Syndrome or they have just been fatigued for an extended period. There is a big difference.

I would focus on getting your line manager to arrange cover for the extra work. Whether or not your job share is legitimately off work is for their manager to worry about. You shouldn't be under extra pressure as a result though - not when it's long term like this.

Thank you for your responses, it does sound awful. She has been told it could be Chronic fatigue syndrome. Currently told its Post Viral Syndrome. My manager is trying to address it but ultimately the finances are so tight (public service) and there just isnt the money to keep getting temporary cover so im picking up a lot. I think my boss is getting frustrated with her and she is finding the really difficult. Its hard for everyone. For people who have it, does it seem realistic thay she could.come back to work in a people facing role 9-4. Will it improve or become manageable ?

I have ME/CFS (CFS=chronic fatigue syndrome). I always explain it by comparing myself to a mobile phone that has been on charge all night but is only on 10% when I wake up. This is a massive oversimplification though. If I do too much, I start feeling ill and dizzy. Like going down with flu or having a hangover maybe. Bizarrely, I also can’t sleep if I do just a little too much. OP, is is VERY limiting and debilitating. I look incredibly well so people don’t believe how unwell I am, which makes it worse. I am constantly getting dismissive remarks from so-called friends. Eg on Monday I had to go to a hospital appointment. Nothing out of rhe ordinary. Not stressful. I had a short train journey to get there and spent about 2 hours in the hospital, getting advice from nurses and doctors, having an ultrasound and an x-ray. Nothing major. Due to this, I couldn’t sleep and felt awful tbe next day. I told my friend I was exhausted due to this experience and she said “anyone would be tired after that”. Well, not really ‘friend’. A normal healthy person would take that in that in their stride and would certainly not have to take extra rest the next day. I’m really fed up of people telling me that they are tired too. Yes of course, everyone gets tired, but a normal healthy person can have an early night and will be back to normal the next day. That does not work for me. I have also spent months in extra deep exhaustion just because I had a cold. Normal healthy people bounce back from a cold quickly.

Does that help, OP?

Thank you, it really helps me to understand. It sounds similar for my colleague, she described a trip to the hospital as having very similar consequences the next day. I'm sorry it is so difficult for you, its horrible. I really try to be understanding and empathetic and hopefully not making her feel like your friend did. Are you able to work?

Like flu, all the time. But you are expected to keep going and people get annoyed with you.

also it’s frightening, you can no longer trust your body.

A close relative has it. It is never-ending, debilitating tiredness and aches and dizziness and I wouldn’t wish it on my worst enemy. This is an otherwise healthy woman in her late 20s I’m talking about.

She has been told by the doctors who are overseeing her case that her best prognosis for the rest of her life is an average of 3 working hours a day.

“Working” is anything that requires an output of energy. A job, shopping, cleaning or looking after her pets, medical appointments as PP mentioned. Everything that you or I find normal and part of life, becomes a hundred times harder for someone with ME/CFS.

This person looks healthy, is incredibly smart and bright, but will suddenly have to sit down from dizziness or blank out because of mind fog. If she catches a normal illness, she can be out for days. After a normal routine surgery, it took her 4 months to achieve the recovery normal
people would expect after 2 weeks.

I don’t know how severe your colleague’s potential CFS is. It is very likely it will be impossible for her to ever work in a 9-4 job on a regular basis again.

I have ME/CFS after having shingles years ago. I tried to continue working FT and run a home for many years. Many people imo push themselves to try and regain some normality and end up in a Boom and Bust situation. With each flare/burnout i had i never managed to get back to my original baseline.

The condition is very much misunderstood and dismissed, there are various levels too. I can understand your and your employers frustration but you need to look after yourself too. It isn't your responsibility that finances are restricted, you should have adequate support at work.

To answer your OP, there are days I can't string a sentence together, it is too much to often talk, reply to messages or do anything. Have you ever had the flu? The pains all over your body, the breathlessness, brain fog and exhaustion is happening daily with CFS.

On a day you might feel relatively "normal" is when you push to get daily tasks done that people take for granted. Shower and wash your hair, but then you need to dry it and dress yourself. Forget about leaving the house BTW because that shower has fucked you. Your social circle dwindles, chatting and interacting can leave you drained for days.

Have a look at The ME Association for some insight. There are articles for employers and employees amongst the archive.

In hindsight I wish I had listened to my GP and managed my body better, went PT etc. I just wanted me back.

Hopefully your colleague has good medical and family support. Maybe if they're very lucky it could go into remission. The fact they have been off for 6 months already it sounds bad. When the phased return is introduced then you will know how it is going to affect them.

I don’t have chronic fatigue syndrome, but I do have chronic fatigue due to cancer treatment.

Before I started treatment, I was reading about side effects and one person described the fatigue as being too fatigued to chop a carrot. Like she was trying to chop a carrot to cook dinner and literally could not continue. Her arms and hands couldn’t chop the carrot and she needed to sit down. I thought that seemed absolutely bonkers. Who can’t chop a carrot? I get it now.

It’s like wearing a moon suit. Your arms and legs feel like they weigh a thousand pounds. Walking takes like 10x the effort it used to. Some days I can’t chop the carrot. I can’t stand to cook for more than 10, 15 minutes. Walking up stairs feels like I am dragging sacks of flour behind me. It’s not tired. Like I can’t sleep (though I do force myself to lie down so I’m not moving around). It’s like your cells run out of energy.

Imagine (assuming you aren’t a runner) that you had to get up right now and go run 2 miles. You might manage most of mile 1 okay if you pace yourself. But at a certain point, your body will give up. You won’t have enough oxygen or energy getting around to your muscles to run 2 miles. You will start grinding to a halt. Muscles will be burning. You will be breathless. It’s like that, except just trying to take the dog for a 5 minute walk.

I have a sedentary office job that involves a lot of critical thinking (well, I don’t anymore because they didn’t renew my contract). I could physically sit at my desk all day. But cognitively, I couldn’t think to do the work. Plus the pain, that’s a whole different thing. Cognitive effort and pain also run your battery down, so even if I’m sitting for an hour, if it’s painful, and I’m thinking, that will require me lying down and resting after.

I can do stuff. But there is a price to pay for everything. A busy day at work means I have to go lie in a dark room and I can’t cook dinner for my kids or drive them where they need to go. I need to conserve energy in one area in order to function in another, whereas previously, I’d just have a flat white and push through.

Doing too much means I can completely knock myself out for days after. For example, we went on holiday, just like UK self catering beach holiday. I did a lot of walking, but no naps, still in bed by 9pm. I made it 6 days. Came home and on day 7, my heart rate shot up, got a fever, ended up in hospital. There was nothing wrong with me. I just pushed it too much and made myself ill.

I had to stop work over a year ago and even then I was only working 13 hours a week spread over 3 days - very easy job too.

By the way, OP, I’m impressed that you are asking about this. Nobody in real life, not even my family, has asked me this. All credit to you.

I have suffered since I was a teenager and the severity fluctuates but I think working a full time people facing role is very unlikely to be possible at this stage. Maybe if the person is lucky enough that it's not a lifelong thing, they might manage it in a few years.

I work full time but only because I can work from home (often from bed) and do long days so I can have a Wednesday off. I spend every Wednesday and weekend horizontal recovering. Daily tasks fill me with dread. Any threat of something stressful/needing extra energy sends me into a panic. Fun things (invitation to a meal out etc) become a worry - will I be able to go or will I have to back out and upset people at the last minute?

Can't go on holiday as the prep and travel is too much to cope with. Can't make decent meals for myself. Can't walk anywhere.

It's utterly miserable and people get bored of you saying you don't feel well enough for x, after about 3 months. "Still??"

Unpredictability of symptoms is horrendous. One day feels reasonable (why? Don't know) next day feel like I've been poisoned.

It feels like there needs to be so much more understanding and research in to this as its completely debilitating! Sorry your life has been so dominated by it :(

Last week I found myself lacking empathy for her as I was overworked and tired and felt frustrated by it. I've been on AL for a week and rested and feel bad that I felt like that so am trying to learn more and get an understanding of what she is dealing with.
How have you found your relationships have been impacted if you dont mind my prying? I feel like other colleagues are being very dismissive towards her and I wonder whether others in her life are the same. Must be tricky for her husband and daughters (both mid 20s but live at home). When she in at work, she seems very flustered, flat and low which is understandable. Its quite tricky to work with because it can be quite draining as I already feel my work load has increased. Its a no win situation really. I wonder how long she can continue to work as I expect management will start to.apply pressure soon to a return to 'normal'. But she surely just cant not work for the rest of her life financially?

As someone living with MECFS, thank you for asking this question.

In short, I'd say work on the basis that your job share partner won't be able to step back into the role as before. Depending on severity, many people with MECFS cannot work at all, as just surviving the day takes all their available energy.

As PPs have so eloquently described, MECFS is a devastating condition, and very poorly understood especially as people don't look ill. There are levels of severity, but even 'Mild' MECFS is defined at losing 50% capacity. While people who are 'Mild' can sometimes do some work, it often leads to long term deterioration in their health.

While recovery from Post Viral Fatigue is possible, once you have been ill for a year, it's likely you are in MECFS territory, where full recovery is unlikely. Some people do improve but it is often slow and unpredictable and most people actually just plateau, functioning at a much lower level than before.

If I were in your shoes, I'd be thinking about how to ensure you are protected as it's unlikely your job share partner will return at full strength, if at all.

I appreciate that makes it harder to emphasise with what she is going through but it's great you are trying. MECFS is a truly awful condition, made even worse by being disbelieved and dismissied by others.

I have found it shocking that I have become disabled, there is no health care at all, no treatment and yet people think I can will myself better, as if MECFS is some sort of character flaw. It's not, it's a biological disease, with a proven genetic component, often triggered by a viral infection, and research has shown it has a greater disease burden than (for example) MS.

I think because it doesn't (in the main) kill people, it isn't seen as that bad. But it has taken away my ability to live my life, work, move around, maintain a normal social life, think straight, so many things. Chopping that carrot sums it up. It sounds bizarre and ridiculous, but that's what MECFS can do to you.

💐 💐 💐 to my fellow sufferers and those with loved ones blighted by this cruel condition.

It's good that you want to understand it but it's not going to improve your workload.

You need to tell your manager that you have every sympathy with the whole situation, but that management cannot keep regularly pushing more work onto you, than you're contracted to do.

Otherwise you could well end up going off sick with the stress of it all.

Are you paid extra to cover your colleague's work/hours?

My daughter has FND rather than CFS but it has a lot of overlapping symptoms.

It’s not all the time, but when she’s having a flare up, or she’s over done it a bit, the fatigue can be absolutely crushing. Arms and legs feel like lead weights trying to walk through treacle. She’ll sleep 12+ hours straight and still be absolutely bone crushingly knackered when she wakes up.

Brain fog is awful, will forget what she’s saying half way through a conversation, finds it difficult to follow conversations or a TV programme or something like that, forgets words for every day things.

She also gets a lot of pain that painkillers don’t touch.

She’s at uni and coping ok, has reasonable adjustments and has to be careful not to overdo it, or if she does overdo it has to allow a recovery period - a night out with her friends means the next day or so is a complete write off. She has to be careful planning assignments as too much stress is a trigger

She likes the spoon theory - she has a set amount of spoons a day and has to be careful she doesn’t use more - however, sometimes a shower costs 1 spoon, another day it costs 5. She really has to listen to her body and not ignore it and try and push through.

I had chronic fatigue when heavily pregnant - not sure it counts as "CFS" really because my heart rate was sky high and my heart was struggling to function, so there was a physical cause - and it resolved post pregnancy. But my friend with CFS said my symptoms were the same as hers, so I do think it was a similar experience.

I couldn't sit up, I was too tired. Sitting up in bed caused me extreme fatigue. Trying to get to the bathroom took hours - trying to shower, sitting down in a chair, was so horrible it would exhaust me for about three hours afterwards. I used to cry as I felt so useless and didn't know why I couldn't even stand up without so much fatigue I got dizzy.

My CFS friend actually gave me lots of tips on how manage the symptoms/stop beating myself up and feel better. My symptoms resolved post pregnancy and now I'm back to normal - but having fatigue like that was the worst time of my life.

I don't have personal experience but I it sounds like PPs have given good examples of how it impacts them. The spoon theory is a good way to explain a similar invisible disability.

https://itpaustralia.org.au/spoon-theory-what-is-it-and-how-to-use-it-to-manage-chronic-disease/#:~:text=The%20spoon%20theory%20is%20a%20way%20to,because%20they%20have%20to%20plan%20their%20day.

@Orangeducks I've had M.E for decades after my first bout of glandular fever aged 11. I refuse to call it Chronic Fatigue Syndrome simply because it's like calling pneumonia a bit of a cough!

The physical fatigue is bad enough, but then there's the mental exhaustion. The inability to think clearly. Brain fog. (I was good at maths when I was young but not anymore).

And the pain that goes with M.E..... Sharp stabby pain. Everlasting acheyness. Weird little prickly pains. Very tender skin. Feeling as though insects crawl over your body. Stiffness. The inability to move properly. Headache, backache, pain right through your whole body. Even down to fingers and toes. The clumsiness due to losing your balance. And the difficulty of fingers that struggle to hold things, open things etc.

Oh, and the nausea! The digestive problems, such as Irritable Bowel Sydrome which then becomes an additional issue.

Then there's the depression/anxiety that goes along with it. Feeling so vulnerable and feeble. Feeling that no one understands and that everyone is judging. That they think it's just laziness. That you need to make more of an effort. Feeling like a burden to friends and family, if you're lucky enough to have help from them. Feeling judged for not being able to work and needing to receive benefits. Feeling stupid and useless.

Missing out on life. Being stuck at home except for the occasional doctor's appointment that leaves you out of action for a week afterwards.

The lack of support. Knowing that it can't be cured. That it goes on for the rest of your life.
The worry that you'll be forced to look for work even though you struggle to make a cup of tea, or take a shower.

M.E. affects every single part of the body. The muscles, joints/bones, the nervous system etc.

If you know someone who is totally incapacitated by it, please send them your love. Offer support, even if it's just a card or flowers every now and then. Or text them. They need to feel seen and heard.

If you know someone who is working through it, especially if they have a family to take care of, please encourage them. Again, if possible, offer support. Be a good friend to them. They need it. Give them a hug. They deserve that, at the very least!

Love and kindness goes a long way to help someone whe is struggling with a long-term illness. A lot longer than you may ever realise.

Sorry for the essay, but I hope it helps others to understand the condition better.💐

I don’t have CFS. My experience is of the overwhelming fatigue that accompanies inflammatory arthritis and other chronic diseases. It’s like nothing else. I get into bed and I’m too tired to turn over, to scratch my nose or anything. It feels as though I’m existing on a state of suspended animation. I can’t do anything and I don’t want to do anything.

Ask as much as you like, OP. I’m happy to answer questions. Yes you are right it is certainly difficult for those around somebody with ME/CFS. My DM often comments that I seem flat when I am with her. That is because I find it utterly exhausting to talk to people. She is more tiring than most for me because she is deaf and I have to raise my voice and repeat myself constantly. I have a friend who I also find particularly exhausting to be around because she has verbal diarrhoea and listening to her is also exhausting. However, the friend has a major redeeming factor - she is very kind and understanding.

As far as relationships go - yes ME/CFS definitely affects them adversely - partly because most people don’t understand or are unwilling to accept how serious it is and partly because I do not have much energy to devote to other people.

exDP was a narcissistic abuser. I was still with him when I was diagnosed. He used to tell me I was lazy but he told me that before as well. If if had stayed with him, I would probably bave become far more ill pretty quickly. I moved out about a year after my diagnosis. I was too ill to do all the housework etc which is what he thought I should be doing because I was only working very part time.

I have had a mixed reaction from friends. The one I mentioned before has been very dismissive. She used to be one of my 2 best friends. I have virtually nothing to do with her now because of this. Unbelievably, she is actually jealous of me because I have been on a few nice holidays. She has her health and can do anything she wants - I would give anything for that!! I have come to realise that she is very similar to exDP - self centred.

Other friends who are a little more understanding have become closer friends than they were before.

As for money - I no longer work. I just can’t. I get Universal Credit with the disability top
up (I have been very lucky). UC also pays my rent but only because I have moved to a tiny studio flat. They will not cover a 1-bedroom flat, at least not in this area. I also get PIP, which I am incredibly grateful for. However, I live under the constant threat of having it taken away or reduced. Only yesterday, I had a telephone appointment with someone from the DWP about my UC. I sat by the phone waiting for them to call and after 10 minutes, they messaged me claiming that they kept on calling me but I didn’t answer. I have no missed calls (I told them this). I am now expecting a fine because I didn’t attend my appointment. I have told them when I am available for another appointment but no reply. They make it as stressful as possible.

Thank you for trying to understand. There have been some good explanations on here. Someone with dementia may decline in steps, within each step there will be some fluctuations. Certain things are more likely to push that person down to the next step - moving home, illness etc. People around those with CFS sometimes try to cajole them - doing more than they can handle is equivalent to pushing them down a step level, often permanently. I had to stop work. I’ve decided not to apply for PIP as the likely drop in baseline will mean husband has to take even more time off. Your colleague will already have had to give a lot up, whether that’s frequency of showers, available time in a day, freedom, the life they thought they’d have, hobbies, trust in their own body. My kids are in single digits - a run of the mill covid infection stole their mum.

I am bookmarking this for later.

I have a huge, important and overly long meeting this afternoon.

I am eating early because I know I will have heart palpitations soon because my body will use energy to digest it. Early afternoon is always a bad time for me. At home I go and lie down in a dark room for a bit.

The meeting is more than I will manage. Fully expecting to crash after and be ill all weekend. I'm anxious because I know I will struggle towards the end of the meeting especially. Brain fog will kick in.

Right now my heart is starting to thump, all my joints ache, I have internal buzzing like bees because it is neurological, my tinnitus is loud, I have a headache....this is my normal. I have mild MEcfs.

I'm doing badly because I was unable to finish on time yesterday because colleagues ran over in our pre meeting despite me saying I couldn't. I felt the impact overnight. I was utterly exhausted and couldn't get upstairs in one go last night.

Anyway, back later after this afternoon's torture!

If your colleague has ME/CFS (As opposed to PVFS which she may recover from), pushing her to do more will cause an immense amount of harm.

’CFS’ is a misnomer that a lot of suffers object to. It suggests that it’s a condition that just comprises of chronic fatigue, when in fact that is just one symptom out of many. There is so much more to it.

Scientific studies show that ME/CFS have a worse quality of life/pain levels etc than every single disease other than end-stage AIDS, yet they get among the least empathy. For years it was thought that we were imagining our symptoms. It’s now been proven that we’re not, but people get stuck in their old views. There is no treatment or cure. The recovery rate is 5%, and while people will have ups and downs, the general trend is a downwards trajectory over a lifetime.

That doesn’t mean that you should be forced to carry her workload. If she’s struggling the best thing for her would be to stop work, try and find her baseline, and then go back to work once she knows her own capabilities, to a job that she’s capable of doing. Pushing herself is absolutely the very worst thing for her right now.