How ill do you think I am?

[SantiMakesMeLaugh]

Ok, so I know it is a strange question but I just cannot see the wood from the trees there. (Sorry long...)

I have a chronic illness and I am restricted to what I can and can't do. Somehow I still feel I ought to be working (more!) and doing all the things anyone else does. But I also can't physically do them....
If I am listing what I can/can't do, where would you say I am on the spectrum of very ill/bedbound to well/in good health?

• Can't prepare meals bar breakfast (as I can't stand for that long wo being in pain)


• currently working 2 half days, between 3 and 4 hours. I can sort of cope with 3 hours but after 4 hours, I am in pain, struggle to get up, very slow moving. It also takes me 2~3 days to recover from those 2 half days (exhausted and in pain)


• can't go up the stairs


• can't drive more than 1~1.5 hours (tired so gets dangerous). That's on a good day.


• manage one food shopping trip in the week


• doing about 2 500 steps a day. Above that, exhaustion and pain


• Can't walk more than 50m at a normal speed. Will manage 200~500m at a much slower pace (prob not even half the normal speed). Only if the path is totally flat though.

I think that, even though I have been ill for more than 10 years, I am struggling to accept it and judging myself as if I was in good health. So I'd be interested to see how it looks from an outsider's pov.

I don't mean to be rude, but very ill. You are in pain a lot of the time, can't perform basic tasks, and when you do, you're left wiped out and more pain.

Chronically very unwell with a disability. Please don't beat yourself up about it.

Agree with both previous posters.

At my lowest point with long covid I was as you describe, I felt chronically very very unwell, completely compromised quality of life. Do not compare yourself to someone in good health

@Jeansgoals , not rude at all.

I think I've been unwell for so long that I just don't know what it means to be well anymore. So I tend to assume that my normal is much closer to other people's normal that it actually is.

Thank you all btw. It's all helpful.

The trouble is that with a chronic illness, the increase i symptoms doesn't happen overnight so you keep making little adjustment after adjustment and before you know it you ARE sort of getting through a day, if you had gone from full health to how you feel overnight you would have called 999. I say this as someone who also has a chronic illness.

Fact is that you are unwell, are you getting enough medical treatment and support to manage your symptoms?

I'd say you were very unwell.
Hope you're getting the right support ❤️

Very little support re my symptoms.

I have ME/CFS and basically there is nothing available that will make a difference. I am managing my symptoms through pacing, acuuncture and some supplements.
I went to see the GP a few weeks ago, was referred back to the ME clinic and ... the ME clinic has no appointment at all available. It's like it doesn't exists any ore (You have to wonder why I was referred)... I suspect the ressources have been diverted towards long covid instead. (They did that with counselling when I was getting my 10 sessions of counselling about 1.5 year ago...)

i thought ‘not too bad at all’ then realised I was comparing to lots of bedbound and housebound people I know and that your quality of life is shocking compared to healthy people. No matter what people view your illness as though there’s no reason to be beating yourself up for not doing more, you can only do as much as your body allows. Despite what people looking in see, try and let go of that guilt and recognise you’re doing the best you can with what you’ve got

Yep. There is always someone worse than me etc... so how can I say I'm unwell compare to them...

I've had those thoughts too.

And as @HGC2 said I've put so much stuff in place to allow me to do things (includding narrowing down my world to very little) that it feels like I can do things/go through my day. So it can't be that bad can it?

What does it matter how bad it is? Has someone said something? Are you looking for validation (quite understandable with an illness that many don’t believe in)? Struggling to comes to terms with it? Looking for ways to improve your situation? Just want a rant?

As I said in my OP, I'm struggling to have an objective view of myself.

Yes I'm looking for validation that I am unwell because very few people really akcnowledge that. That includes HCP. This then makes hard for me to feel truly confident in myself that I'm not making it up (yes I know it sounds crazy but here we go).
It's not about others.
It's about me and how I see myself, my future, my abilities.

I think that often, to be able to cope with the situation, it's easier to ignore the feelings. Ignore the struggles, the limitations just so you can get through the day to day stuff.
But when you step back (which is what I am trying to do just now) and avoid the tunnel vision to look at the (bleak) reality, it ends up feeling false because that's not how you see yourself on a day to day basis.
(pretty sure it doesn't make sense but here we go..)

That’s is a long, long way from normal. I had ME for a long time so know the feeling, thankfully recovered now.

I don't know your age but that level of ability sounds way below the level that most working age people function.
Are you able to help yourself by eliminating some of those tasks or using aids to help? Eg use a perching stool for food prep/cooking (usually loads going cheap on ebay) and getting food shopping delivered so you save energy for other tasks?

Pretty unwell by my book.

I do understand though OP, I have MS and you just get used to the symptoms and they become your new normal.

Without reading any other posts I’m guessing you have ME. You’re ill, functioning well below ‘normal ’
cut yourself a break. Take care of yourself

My daughter has been bedbound with very severe ME fur almost 9 years. She is constantly worried that people think she’s malingering. Yesterday I washed her hair. She can’t shower or bath. Today she can barely talk she so tired from the effort

Very ill. I'm sorry you're struggling so much. As somebody upthread said - if, overnight, I went from my current life to the one which you're describing, I'd be turning up at A&E as I would consider myself seriously unwell. One of my in laws has ME and I really feel for her. She struggles with things which I wouldn't even have to think about. I think she's had similar reactions before with people thinking that she's exaggerating or even making it all up. Why would she choose to live like that if she didn't have to?

Why would she choose to live like that if she didn't have to?

it’s a good question isn’t it?

Can I ask you how you recovered? I have fibromyalgia ( 4 years) and I really identify with the op. I have a friend who was diagnosed with ME 26 years ago, he hasn’t worked since. I had to give up my job 3 years ago now.

I have ME and I’d say that I’m managing to do a bit more than you physically, but there’s no way I’m able to work. I’m ALWAYS finding myself comparing my life to heathy people’s and feeling like I’m failing. I forget that the playing field isn’t even!

It’s a horrible thing to be this ill. Be kind to yourself and remember that nobody truly understands unless they’ve lived it.

You're exactly like me. So very unwell.

It's very very difficult.

I read this thread out of interest, then realised it described me. When I wake up I feel a bit achey, but think 'oh I will do this or that today' and as soon as my feet touch the ground I know I won't be able. That's my dilemma -in my head I'm still 'normal' but various bits of my body tell me I'm anything but. From my feet up to my waist everything hurts. I recently had a TKR which hasn't gone as well as expected so walking, stairs, even small steps are still very problematic. There are other chronic issues too which all contribute to the overall shittiness.

I would say you are disabled tbh.