For those with long term illnesses that affect their daily life

[MoneyBall1]

I wasn’t quite sure where to put this. I was a very fit and active person. Ran 5km a few times a week, did long dog walks and had a full time job. Had a busy and active social life. And then the last bout of Covid I had in 2022 destroyed me.

I have accepted I will never go back to the way I was. I can’t walk more than around 15/20 mins slowly in one go. I’m back working full time (I need the money) but at the expense of being able to do anything else. Every day I am extremely fatigued - I wake up every morning and the only thing I look forward to is going back to bed as soon as I can.

slowly but surely, almost all my friends have disappeared. In a way I don’t blame them. I can’t do evening meet ups as I’m in bed by 8/9pm every night and if I do something on the weekend, it really needs to be near where I am as I can’t travel much so that means I’m dictating most of the conditions. I had such a full and wonderful life before and now I am just existing.

Some of my friends are pissed off with me because they feel like I have prioritised work over them and they are right - but I don’t know how they expect me to pay the bills if I don’t work. I own my own house and the benefits I could get if I didn’t work are not enough to even pay the bills. I would have to sell the house and move away to a cheaper area. Some just don’t believe me because I look fine - I think they think I’ve just dumped them. If only I felt fine!

I just wondered how others have adapted from being well to being essentially disabled. How did you cope? How did people around you react?

Losing all your friends is a common experience sadly. People just can't understand that your 'tired' is very different from theirs. I think most of mine assumed I'd had a breakdown and just needed "encouragement". They didn't/wouldn't understand pacing. Find new ones by joining your local ME or long covid group. It's tricky going to meetings if you are working, but some groups meet at lunchtime in city centres and some meet at lunchtimes online. ME is legally recognised as a disability so your employer may make the reasonable adjustment of allowing you time off to attend meetings. Or you can make friends entirely online.

In general, how to cope: toughen up. Put yourself and your health first. Pace ruthlessly to avoid getting worse. Another mumsnetter recently defined pacing very well as " It's not resting after a strenuous day, it's never having a strenuous day"

Keep your job if you possibly can and do everything possible to claim benefits, pensions and insurance payouts if you can't.

Protect your mental health: antidepressants, meditation, CBT, counselling, religion, distraction, new low-energy hobbies, whatever it takes.

Thanks. Yes I meet the definition criteria for ME now. I only going into the office when I can which isn’t much - sometimes 1 day a week, at most 3. The rest of the time I’m working from home.

LDN has been a miracle for me and allowed me to keep my job but it’s not done anything for the physical fatigue (but did have massive brain fog benefits for me).

I don’t think my employer gets it at all. I keep explaining myself (I’m a senior employee) but recently they did a charity day and wanted me out all day painting park benches with the team. It just shows how little anyone understands about this. The thought of me being able to even paint one bloody bench is laughable let alone being able to be outside all day!

thanks for your words - I agree that toughening up seems inevitable (at a time when you least feel like it)

Yeah I lost a lot of friends as they just didn’t get it.

i wound up moving to a cheaper area when I finally couldn’t work any more (went part time first) but I have found new friends who are honestly much better and accept me as I am.

@MoneyBall1 I have been where you are now. I have ME, diagnosed 15 years ago. I’m a type A personality, I had a job I loved and I clung on to it until my health got so bad from constantly trying to push through, that I had a severe collapse and I’ve never recovered.

I lost my job (disability protection only takes you so far), all of my close friends, my freedom (to pacing) and everything else. I’m now a type A personality stuck in a tired old middle aged body. I now rely on benefits. I hate it.

On the flip side, losing my job gave me the time I needed to learn to pace and give me opportunities to live a little for fun. I still only exist and have to be very careful about what I do, but sometimes I also throw caution to the wind to attempt something I enjoy and factor in the post exertional malaise in to my plans.

ME is an awful disease and the stigma around it is very difficult to handle. I still have dreams, I won’t give up, but I also recognise that the chances of recovery are slim (confirmed by professionals).

My mind is still sharp, I’m still a very capable person (for part of the day at least!), but my body is weak, fatigued and frankly useless.

You need to have a hard think about what your long term plan is and adapt your life to fit your goals. They aren’t the same goals you had planned and you need to change your path.

You might find something amongst the ME Association factsheets that would help you explain things to your employer. All free to download from their website.

If you aren't under the care of a long covid or ME clinic you could try to get a referral. They are all crap. BUT if you can get a written OT report about reasonable adjustments you need for work, and/or a care plan detailing what pacing regime you have to stick to, that would probably be helpful in talking to your employer too.

Yep, lost all of a certain type of friend.

The worse bit was where I was still trying to turn up and do stuff, but was becoming catastrophically tired, incompetent and snappy, and my need to rest RIGHT NOW and/or go home was disrupting everyone else.

They were basically glad to get rid of me.

Some were unexpectedly good, though, so it wasn't everyone.

Oh, and I also acquired some acquaintances who are like the cartoon of the Boy Scout randomly hustling an old lady across a road – to the wrong side – in order to fulfill their Good Deed of the Day. "Helpy" people, was the great word I learned on here. They don't care whether they're being helpful or a PITA, I'm just a venue for their virtue. But they do get nasty when thwarted.

Yes, sorry to say "toughen up" so bluntly. But @OnlyPostingAboutME puts it very well. The sooner you get your head fully around the catastrophe that has befallen you, the quicker you can start to enjoy life and work again, even if it's a different life and perhaps a different work. I wasted two decades being sad and grieving for my former life. There is light at the end of the tunnel though. Most people do improve, albeit slowly and most likely if they fully accept what has happened and what needs to be done (ruthless pacing!) If you are working, you are not as severely affected as many, which is also a good sign that improvements are possible. Being happy does wonders for anyone's health, so avoiding stress (when you can) and having some nice things to enjoy/look forward to is important.

I don’t think my employer gets it at all. I keep explaining myself (I’m a senior employee) but recently they did a charity day and wanted me out all day painting park benches with the team. It just shows how little anyone understands about this. The thought of me being able to even paint one bloody bench is laughable let alone being able to be outside all day!

Oh this rings so many bells!

See also, "Oh I'd love to have a day off and take it easy, just like you."

And the ones who nod and smile and look sympathetic while you explain you can only do one minor activity a week... and then lose their minds when you explain this week's activity ISN'T GOING TO BE THEM.

(Because the boiler's being serviced this week, or you have to make a trip to the doctor this week, or the toilet hasn't been cleaned for two months now and you really can't leave it any longer. Fun stuff like that obviously you're really enjoying having to prioritise over a nice meet-up with a mate.)

I have hEDS & POTS, not as bad as some, but it flares up and down. Some days I’m pretty good, other days can be a real struggle to even do simple things. It’s a big change to go through personally, but agree the biggest hurdle is getting others to understand how disabling it can be on bad days and how pacing yourself and having to choose what you do to keep it on a manageable level health wise frustrates friends/family. Problem is all these conditions are hidden illnesses (not overly visible) so people think it’s either in your head or made up as you look ok.

After a good few years of this now, I’ve realised if I let myself get pressurised into overdoing things, I can become very unwell so have got better at saying no and pacing myself. For years I tried to hide it, fit in and soldier on which caused enormous stress and illness. I think some sort of acceptance of the situation has helped me and like others have suggested, I found online groups and reading up on my condition helpful with managing it. I definitely can’t do anywhere near what I once could, but try to enjoy life as best I can and stay positive. I try to see it as now I have a different type of life than before, rather than having lost something and I think that came with acceptance and when I stopped trying to be who I was before and pleasing others. .

After a good few years of this now, I’ve realised if I let myself get pressurised into overdoing things, I can become very unwell so have got better at saying no and pacing myself.

Yes, this. I've benefitted hugely from MN's "No is a complete sentence."

I've had to learn to just say no, and mean it. I don't need other people to be happy about me saying no, or to agree with me saying no.

I just need to do it.

If I lose friends over it, well, that's extremely sad they turned out to be people like that. But making myself unwell to please them REALLY doesn't improve the situation.

Thanks all - it’s incredibly validating hearing your stories as so few people understand this in real life. Yes I completely relate to the ‘I can only do one thing this week and I have a doctor appointment and that’s the thing I have to prioritise’ conversations.

the long Covid clinics were shut down near me - I went to see a private specialist who was great but ultimately there is nothing they can do. I had all the tests to check for other illnesses. Like many, all my blood tests are totally fine. I’ve just looked up and there is a local ME group so I will contact them and see if they can be of any assistance. As you mention, at least it’s good to be in contact with people who understand as no one around me gets this at all!

Also I was bedridden in 2023 - took a lot of pacing and patience to get where I am today so I don’t take anything for granted at all. Back in 2023 I couldn’t tolerate noise or light - now at least I can sit outside for a spell which feels like massive progress. So hard to explain to people!

Do you get PIP? Have you applied? It would help to employ a cleaner - I’d find one that changes bedding and does washing etc.

Mh ds has a degenerative condition that means he can no longer walk around without it absolutely wiping him out. It taken him time but he’s got use to using a wheelchair (electric is even better).

He still gets burned out if he over does it but having someone do those daily jobs (currently it’s me and I work a few less hours than PT to take it on!) and not pushing to walk around has meant he can buildup to more time out and about and needing less recovery time.

He absolutely still had to okay a game of Tetris with regards what he can manage - it’s totally the spoons theory.

as for friends. No one deserves to be called a friend if they don’t accept you for who and what you are and what you can do. No one asks they adapt their lives around yours but any decent friend will arrange something at times that includes you and your disability.

DS is very lucky that if - for example - they want to do a theme park his friends will help him and push his wheelchair if he’s tired. They accept he’s asleep before they’ve left the car park at the end of the day! They are true friends who bend over backwards to make sure what they do is accessible to him.

I really hope joining the local ME support group helps you find a decent set of true friends.

I have CP and over the last ten years have resorted to using 2 crutches to walk.

I still struggle to accept the physio telling me to pace myself or the consultant and doctor saying to take more morphine.

The three things that have helped are:
1 Working part time from home at times to suit me - I am very lucky to be able to do so.
2 Downsizing radically but locally to a tiny property- it is wonderful to not have the space to worry about.
3 Accepting that I am not the right friend for those who want to walk up to a mile ahead of me - their loss not mine.

If you can change your mindset to thinking about the positives it does help - despite all the frustrations . I hope a radical downsize might free up cash for you and make life easier?

@MoneyBall1 I am in exactly the same boat, full sympathies. What is LDN?

@itsgettingweirdi haven’t applied for pip mainly because I wanted to find my baseline and I suppose until this year, there’s always been a part of me that hoped I would recover. But past 2 years, there’s little hope of me getting better. Sorry to hear about your ds but I’m so pleased to hear he has a lovely bunch of friends!

@Reginald123thars very good advice. I think you have all made me realise that downsizing is probably necessary. A complicating factor is Dp. My kids are adults but dp’s are still younger and visit us. I have to say if it wasn’t for Dp, I probably would have sold up and moved somewhere cheaper and freed up some cash. I think I need to think seriously about what my next steps are. I haven’t been prioritising myself and my needs at all.

@StartingAgainFGS

low dose naltrexone - you can get it from Dickson’s chemist in Scotland. It’s worth trying if you haven’t tried it yet. It really helped my brain fog and made me feel more like me. I got the specialist to write a letter as the GP was frankly hopeless. I don’t think it’s even on my GP record that I have this.

Mines no where near as bad as yours but I have a rare disorder and one of the symptoms is fatigue. I look totally abled bodied so people "forget" a lot. One friend in particular who has two small kids makes throwaway comments about being jealous of my sleeping in the afternoon (I work PT). I don't actually WANT to sleep every afternoon haha. Id rather be doing something.

Acceptance of the situation is a huge thing. Acknowledging that this is life now and even the best will in the world won't make it go away helps to take some of the pressure off yourself.

Friends-wise, I'm "lucky" in a sense as I have a brain tumour, and no one wants to be known as the one who abandoned their friend after a brain tumour diagnosis, but I definitely lost a few friends afterwards as I can no longer drive so can't meet up etc. I've made new friends since diagnosis, though, so they've never known me any other way and that helps.

As for colleagues - easier said than done, but smile and nod (or give them a withering look and then look away, maybe make them realise how ridiculous they're being) and ignore. They'll never realise how lucky they are, so trying to make them see that is a waste of energy!

Ooh, thank you @MoneyBall1 . I'll look into that LDN in case it looks suitable for me too.

Thank you @MoneyBall1
There's an interesting testimonial on one of the ME sites from someone using that too.
I have been referred to a specialist in Stirling but I don't know who that is or when the referral will ever come through

Hi @MoneyBall1 . I'm placemarking as I'm too tired to give a proper response just now. But you are not alone.