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?

You can’t live and work with chronic fatigue. You rest and if you’re lucky can go to work but for large swathes of the time you can’t even muster the energy to go to the loo. There is very little living going on.

Imagine your entire body is encased in concrete and you’re trying to lug that around from the moment you wake up. The weight of limbs becomes unbearable. Now just to compound matters your brain is filled with cotton wool. Thinking takes up more energy than youve ever considered. It’s going to work at 8am having been on a weekend long bender without the fun or the bender beforehand. You just wake up (if you manage to sleep because surprise! Doesn’t matter how tired you are insomnia likes to creep in) with what feels like the worst hangover in the history of hangovers and no great stories of the weekend.

And all this is when you’re functioning. When it flares you can’t even do the above. It’s a million times worse. You need alternatives to getting to the loo, you struggle to have the energy to eat and drink and your brain won’t cooperate with anything. Even reading a screen can be impossible. Itis quite possibly the worst and most depressing part of chronic illness for me (my diagnosis os different to CFS/me but the chronic fatigue is the same). I’ve lost my friends, careers, self esteem, any self worth and life itself often just goes on without me. My kids don’t understand and my partner gets frustrated but tries his best.

I feel like a total burden to everyone and life is fucking miserable.

Nobody chooses to be like this. I’d pick work every single time I don’t know anyone with chronic fatigue who wouldn’t choose working the Saturday pub kicking out shift at McDonald’s after the cup final, while walking on Lego bare foot with a screaming child sat on your shoulders over chronic fatigue.

Thank you all for sharing this with me. It sounds absolutely awful for you all and I'm so sorry you are experiencing this. I hope people around you treat you with love and kindness.
Its definitely made me realise what my colleague is trying to get us to understand. I'm not sure if she is at this stage but obviously needs a very slow return to work and normal activities.
Really hope you all get some relief from it soon :(

All of the above; plus if you look up 'spoon theory', that might be a simple but helpful way of understanding it. What, to most people, are mundane little tasks that they do without thinking in order to get ready for their day, can represent the sum total of your physical capability for the whole morning/day.

I think a reasonable analogy might be if you worked in the same (professional) job for the same pay as your colleagues and you told them that you couldn't afford to buy a loaf of bread until the next payday.

They would probably respond with incredulity and ridicule and insist that you must be shockingly bad at budgeting and a terrible spendthrift, alcoholic, gambling addict or whatever... but what they don't know is that the only bakery in your remote village will only ever sell you bread for £1,000 for a loaf whilst everybody else just pays £2.

Thank you very much, OP, for caring and taking the trouble to ask and tey to understand. Most people, even if you have explained it to them, still just reconcile it in their minds as 'Yep, extremely lazy and making pathetic excuses, just as I suspected'.

Thank you for asking and trying to understand OP. You sound a lovely person. Reading everyone's posts makes me feel so sad but also solidarity, you all get this!
I don't tell anyone I have M.E or Fibromyalgia and all the secondary conditions because it sounds like I am a hypochondriac 😂
For anyone reading this thread who has doubted anyone who have this condition, please read up on it before dismissing them.

Hi OP. I've had Myalgic Encephalomyelitis since the age of 13 - I'm 46 now. I refer to it in its entirety because, as someone else rightly said, it is so much MORE than 'chronic fatigue '. When I'm in relapse mode, I feel like I have full-on flu: body aches, EVERYTHING HURTS, right down to the bones in my fingers, horrendous headaches, my throat swells up, I sneeze, bone-crushingly exhausted but unable to get refreshing sleep, unable to regulate my body temperature, NOISE sensitivity, light sensitivity, the list really does go on.

It can be a life sentence for many of us, and certainly is for me. It has robbed me of anything I could've been. I still grieve for:

The girl that never got to grow up without this dreadful disease.
The girl that was told she just didn't want to go to school and was lazy and a malingerer.
The girl that never was able to go to university.
The girl that started college but had to give it up, including the qualification.
The girl that would start working and then had to give the job up or be fired.
The woman that never had the chance to become a mother.

The last one hurts the most. Most days, I barely have the energy to look after myself, how could I ever properly and successfully look after another person, dependant on me and me alone?

I am left with the grief of the life that I never got a chance to live, but not just that, there's currently no treatment and no cure. Believe me when I say: I wouldn't wish this on my WORST enemy.

To all my fellow sufferers and survivors: I see you, I hear you and I have nothing but the utmost admiration, respect and affection for you. 💐🫂

This thread has scared the life out of me. I’ve just been off work for a month with post viral fatigue. Week 2 back (mornings only) and I’m exhausted.
is this my life now? Am k going to be like this forever? I’m so scared. I can’t live like this. Tired, nauseous. Anxious. I will have to end my life because the thought of existing like this is unbearable. My poor kids.

It completely buggers up any sense of a normal life, and that's with a part way recovery. People previously have explained it very well. What its not, is 'feeling tired'. I left work as my colleague didn't understand it and she was unpleasant. I was never off sick after my phased return, never talked about the CFS, and she did not need to carry me once I was back. I'm a tough cookie, but was too ill to cope with that on top of work. It's an illness that for the most part, cannot be seen. Try to imagine being so unwell, that if your house was on fire, you couldn't get out of bed and save yourself.

Its like dragging 3 ton weights along every step. So fatigued its hard to think. Grieving what could have been. Deciding on the day if I can manage an outing. I've had to re-arrange hospital appointments on the day because it has felt impossible to travel there. Missing events, just a coffee with a friend.
I had Access to Work payments which contributed to taxi fares to keep trying to work, after seven months off, but it was too much, and boy I did try. When I was interviewed by the works doctor, he said 'I have seen enough' just from observing me and he didn't even contact my consultant to get information. Lots of medication, sleep doesn't really help, its in the body.
The office did get temporary cover though and that really ought to happen in your case to help to cover the job. I hope you are able to get some support in this way.

I have ME and it's the most debilitating thing I've ever experienced. If I stand up for a bit too long my limbs get heavy and I can't move them and have to rest until it passes. If I get stressed at work or overdo activity, my body fails me - I get dizzy, have palpitations, am exhausted like I've got flu. My lymph nodes swell up and I get painful ear infections, as well as debilitating nerve pain and migraines.

It's such a poor quality of life and I wouldn't wish it on anyone. I work and have a lot of time off sick. Work policies are discriminatory and the workplace isn't set up for this type of chronic condition.

Oh and getting ill even with a cold can make my symptoms flare up for months. I was housebound after covid 2 years ago because I couldn't tolerate being in the car and I couldn't walk. It was truly awful.

The more you push, the more you crash. You're at the mercy of your own body.i used to worry about what id do if my house caught fire because I was essentially trapped. Ive never felt more vulnerable in my life. Doctors cant do anything to help.

Miranda Hart wrote a book about it didn't she? I can't remember what it's called but Google will know!

Post viral fatigue is very common and self-limiting. Your kids need you, sick or not! Mine are grown up and I’ve had ME most of their lives and they’d definitely say that they want me in their lives.

Try not to spiral. Just rest as much as you can outside of work and focus on your recovery. Only a fraction of people with PVS will go on to develop ME. Try not to worry yourself! Sending you lots of healing wishes.

My friend has exactly this. Honestly, she is a completely different person to who she was before. Awful illness.

@Youllnevergetabetterbitofbutteronyourknife Your post has made me cry in sympathy. I too was unable to have a life, let alone kids. I'm sorry you have been through all this. Sending love and hugs. 💐

Fatigue isn't primarily sleepiness, it is more muscle exhaustion if you want to simplify it down to one thing.
Imagine that even something like moving the length of your hallway at home was changed so that the hallway was tilted at 75 degrees and you had to use ice-axes and haul yourself up it. And while you did that, you were dizzy and had brain-fog.

TBH OP, I'm amazed that after 6mths of also doing her job, you are only now being bogged down by it! I would have cracked months ago if my manager hadn't provided any additional support, even though they knew she'd been signed off for 6mths!

Have you raised your additional work load with HR? Their money issues are not yours and if they aren't careful, you too might go off sick with stress. No first hand experience of CF, but I'd be directing my anger at my manager/company. You need to look after yourself OP before you burn out x

You are so incredibly kind. Thank you. As you can tell, I’m really struggling xx

@PainterInPeril I am so genuinely sorry to hear that you've suffered the same fate, it really is shit, isn't it? It's the losses that we suffer that hit the hardest, especially when I see my peers with everything I wish I'd had the opportunity to experience. Then you get the people that say "just think positive"! 🤦🏻 If only I'd thought of that! 😂

Post viral fatigue may become Mecfs but it's not a given. I think the good thing in seeing this thread is perhaps to heed some advice to make sure you do not push too hard and rest well. That might make a big difference for you.

A lot of people with MEcfs do not know what is wrong with them until it's too late. They get bad advice or else push themselves (because actually it's often highly driven people who get it, contrary to what some would have you believe).

Please don't panic. I have had it for 5 years since COVID and though it sucks, I still have a decent enough life. I have kept my job. I manage being a single parent. I see friends now and then. My life is different to what is was and it's hard but it's certainly worth living.

It's worth reminding everyone that it is a fluctuating illness. Sometimes we will all feel despair (as well as better days) but not all of us are severe or will become so, thankfully. We must get better research and awareness though for people with MEcfs.

Didn't get chance to post this earlier and haven't managed to catch up on all the comments yet.

Thank you @Orangeducks for asking this and for everyone who has replied. I am interested because my doctor has been testing me for various things but cant find anything so has been talking about looking into CFS diagnosis, but i have been thinking it cant be this because i do work and do do a lot of (local) driving round for my children, but i have realised how much i have reduced the rest of my life in terms of activity because if i dont, i feel like a complete zombie all the time and this is not 'normal' for me because even 4/5 years ago i was very very active, whereas now it can take weeks of extra sleep/rest to make up for one busy weekend.

I recognise that if i have this, then i am nowhere near as severely affected as others here. Can I ask, is CFS degenerative, so if i have bouts of feeling this way and then periods of being ok (albeit with reduced activity) does it then either symptom wise get worse or more frequent, so effectively i could be at the early end of this?

I have found it is fluctuating but not on a constant downward slope. For example in my teens I couldn't manage school, in my early twenties I was in a wheelchair outside the house, but in my late twenties I managed to be a stay at home mum and take my little boy out every day even on very reduced sleep.

Then I worked part time for ten years in a job out of the home while also being a Mum.

After COVID my capacity severely reduced and now I work from home, but full time. Still all the parenting stuff but more sleep now he's a teenager.

So it's not a constant downward slide but I have never really been free of it completely.

I have CFS (amongst other conditions) and I think your example of cells not having enough energy is absolutely spot on. That’s exactly how I would describe it on bad days. I’m so sorry to hear you’re going through cancer treatment sending best wishes!

OP, absolute kudos for attempting to
understand her position. I struggle every single day and although I know I should not be, I’m embarrassed by my limitations, especially my inability to complete a full days work. I work full time and have a child and it’s bloody hard and sometimes seems impossible. I hate talking about it but threads like this are so very helpful for those with the condition and those impacted by it, family, friends or colleague's.

After 35 years of varying degrees of difficulty I am so ashamed and embarrassed still.

My friends are planning a meet up and I agreed as we were going to someone's house, but now they want to meet in a park closer to where one of them lives instead, where there's very few places to park the car and I'd have to walk to where they want to be and I can't find a way to say I physically can't do it.

I have a blue badge and am embarrassed every time I use it.

I feel shame when I use my walking stick or can't go to the office when I said I would.

I avoid family outings e.g zoo because I can't walk round and am embarrassed to use the scooters they rent out.

This is all because for years and years almost everyone said I was making it up. Even my sibling recently asked me why I couldn't travel to London on the train on a Saturday having been at work the week before, and needing to be back at work on Monday. I don't tell the truth.

If I didn't have a child I think I would just stay inside forever until I die.

I’ve had MECFS for 35 years. I was very ill at the start, for about five years after I had glandular fever. Then I got quite a bit better and worked pt and studied pt for the next couple of years. After that I worked full-time for the next 15 years. I had to be really careful with my pacing and rest completely at weekends. I had lots of ups and downs over that time, but always managed to get back to baseline.

I had a massive crash about 14 years ago and couldn’t work at all for a year. Then I went part-time again until Covid. I had surgery over lockdown and I’ve not recovered since then. In fact I’ve got worse over the past five years. I’m classed as moderate/severe now. I can only go out in a wheelchair, and can no longer drive. DH is my carer and he does everything for me. I’ve not given up hope of seeing at least a bit of an improvement. I usually feel worse over the winter so this time of year always gives me a boost knowing I’ll likely have a few more good days ahead.

I haven't had CFS or ME, but have had a head injury and post concussion syndrome, and i think it's quite similar in terms of symptoms, inflammation, mitochondrial dysfunction etc and how it impacts physically, mentally etc. As PP have said, think of it as having a huge block of concrete in your head and body 24 hours a day with no respite.

I had such severe physical symptoms from my bad concussion a decade ago that I had a severe breakdown after 6 months and it was horrendous. My thoughts slowed down and it felt like there was a huge block of concrete or cotton wool stopping my thoughts from actually being there and forming. The best comparison I can make is like wading through treacle in your head, with no restorative sleep or respite at all.

Any of the activities that took effort or exertion to do were literally post fatigue crashes, and my concussion syndrome was similar to CFS in that my efforts to push through to recovery actually hindered it.

Doctors now think that CFS will be treatable in similar ways to.post concussion syndrome (which is something they have changed advice about in recent years, and now say that some activities will probably help to an extent).

I'm going to see if I can find helpful articles for you, OP.

My bad - the BBC article actually compared Long Covid and Long Concussion, but the similarities are still there I think.

www.bbc.co.uk/future/article/20240606-how-long-concussion-could-offer-new-insights-into-long-covid