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 have a chronic illness and can do alot more than that with rest in between - you are very unwell and do well to still be working at all.

I am chronically Ill with several autoimmune diseases and I'm also bipolar. I need two knee replacements and I'm on biological injections. Lots of pain killers. Typically I get 3-4 great days after my injection. Then 3-4 ok days. Then 3-4 low days and 3-4 crap days where I live on the couch taking opiate based pain killers. I suppose I could potentially work but then add in my mental health issues and the variable nature of AI flares and in reality I'm lucky if I get one good day in three. Nobody would employ me full time. Or even part time. Which is a shame as I used to love working

I'd say you aren't loving a "normal" life.
Not being able to prepare enough food to feed yourself, not able to move around independently - 50m is nothing, requiring 2-3 days to recover from half a days work, and not being able to climb a flight of stairs are all very limiting.

Personally, only going food shopping once a week is pretty normal - unless you are saying you would go without because you couldn't go back out and pick up e.g a loaf of bread.

Driving for 90 mins then having a break is good practice, but I suspect you mean you couldn't then do another 90 mins. I wouldn't say that is totally normal, but it won't limit your life in quite the same way some of your other comments (if I was ill enough that walking to the end of the road was difficult, I wouldn't be driving tho)

I'd say you are pretty ill.

I hope your future improves and you’re someone who recovers from it. Is there anyway of cutting down what you do to give your body it’s best chance of recovery? The number one thing that holds people back with ME is pushing themselves too hard which sounds so much easier said than done, especially when real life happens. Are you able to go privately? The nhs is so useless with ME, there’s no cure but at least a few things have helped people a little. I hope the validation on this thread has helped too, it’s hard when people don’t understand how bad ME is and when you doubt yourself

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.

oh yes!!!
I always have great plans, want to do things and then by the time I’ve had breakfast, got dressed etc… I can’t face doing anything at all.

Thank you.

Weirdly I still feel I’m not doing enough and ought to be able to work more than I do…

bless you OP, I’ve been there 💐

Ive been severe M.E thankfully now Moderate.

To help you work out where you are, here is a good scale. Its in 3 parts.

www.hfme.org/PDF/ME_Ability_Scale.pdf

I am in a similar situation. Good days and bad days. Have you considered not working and claiming PIP? With what you have said you might qualify

The trouble with ME / CFS is some people still think you're malingering / lazy / making it up. Even doctors sometimes. ❤️

Yes I’ve been wondering about that.
PIP would allow me some breathing space really. But trying to fill that form is the most depressing thing I’ve ever looked at.

Doctors are very hit and miss. The last one I spoke to couldn’t get rid of me fast enough - basically telling me I just had to go on amitriptyline to help with something that wasn’t really an issue. My issue is exhaustion. I’m in pain if I do too much. Avoiding doing too much gets rid of the pain. I don’t need medication, well not unless the aim is for me to push through and do too much (and then get worse). They don’t like feeling powerless.

@NotanotherboxofFrogs reading through the document you linked to.
This was an interesting comment to me

It has been observed that it is less difficult for a stroke victim to learn to walk and talk again than it is for an M.E. patient to discipline herself to rest

Its nice to see how hard it can be to ‘just rest’ acknowledged in this way.

And yes from that scale, I’m in between the moderate and severely moderate scale (probably around 40% on the physical and cognitive pov)

I’ve also realised that, at some point, I was around the 20% mark.

Holding onto that as a sign I’ve got better :) but I still classify as ill.

Shit. This post has got me upset because you are me. Well other then the fact I have to force myself to work full time everything else is accurate.

it scares me just how much of it is classed as a normal life to us. I don’t remember having a healthy life other then having no energy and being in pain all day. It sucks. I’ve just recently added long covid to my list Aswell. Hugs to everyone that’s suffering.

Hi @SantiMakesMeLaugh and fellow ME people!

Have you been on any support groups? I've had zero help from NHS and have just had referral letter response saying they haven't been able to recruit a consultant so I'm on a waiting list. I couldn't get a blue badge because they wouldn't accept a GP diagnosis...and all the self help is reliant on other people's willingness to help you help yourself...like reasonable adjustments at work, blue badge scheme or in my case, my exh doing his bit with our son!

The biggest help I've had is my line manager and the ME support group on Facebook. Having people who get it is so so important.
It is a disability. You are ill. And 'should' is not a helpful word!

Oh definitely apply for PIP OP, I'm surprised you aren't already claiming!!

You're quite profoundly disabled from what you've written OP. The not being able to prepare any meal apart from breakfast, not able to walk more than 50m - those things make you similar to a person in poor health in their 80s or 90s. My DF, who will be 80 next year, is in profoundly better health than you are and he's had heart disease for years, but he can walk miles (and does every day) and drive for hours without being too tired. I'm amazed you can't claim PIP with that set of limitations.

Well I’ve had my head well stuck into the sand on that one….

can’t be bad enough to warrant PIP
I should be able to work more. If I don’t it somehow is because I don’t want it enough
blablabla
and yes I would never ever even think that about anyone else!! Let alone voice it or expect them ‘to get in with things’

I totally get the not believing in yourself. I have a child with ‘Long Covid’ which manifests as severe ME and she is mainly in bed all day. The severity of her symptoms fluctuates and occasionally she feels well enough to do an activity that involves walking around the house. When this happens, I find myself doubting her symptoms and wondering if she is malingering. Later I realise that she is genuinely exhausted from the extra exertion and I feel really bad for having temporarily disbelieved her. It’s so hard having an illness like this which others may not understand. I think you are clearly unwell and I really hope that you improve on where you are now.

You know what I’m just realising that at my lowest, I was so tired that I couldn’t even read. I couldn’t go on MN. I didn’t have the energy so I spent hours just looking at the edge through our living room window, unable to think or do anything else.

And somehow I still dragged myself to work 2~3 half long half days. And then crashing the rest of the week.

And I didn’t see how crazy it was.

When this happens, I find myself doubting her symptoms and wondering if she is malingering

YY to that.
DH has been doubting of my ability (or rather inability) to do things for years. This hasn’t helped me accepting the severity of my illness.

Im really happy to see that you are realising the up and downs of the illness with your dd @Nature1nurture . She will need that.

My dd has ME, hypermobility and a probable autonomic problem (currently being investigated), she’s applied for Pip and had her in person assessment this week so she’s just waiting to hear, I’m not sure if she will get anything because on good days she can do things for a few hours but on bad days she can barely get out of bed, but it’s difficult to explain this, I did have to physically fill the form in for her because there’s no way she could have.

Just a helpful suggestion if you do apply for some extra help in the form of PiP,
always always describe your worst day, not what you can do on your good days, if on your worst day you can’t drive at all then say that, they won’t offer you any help otherwise, if you can push yourself for one day they’ll expect you to push yourself everyday!
(Speaking from a friends experience with their profoundly disabled child who was initially refused any help!)

Btw, they are only doing PIP for dd based on the ME because the hypermobility has only been diagnosed by a physiotherapist not a gp and the autonomic problem is still under investigation. It’s worth applying for PIP but get someone to help fill it in, once you have applied you have a limited time to send the form back.

Don't just describe your worst days - it's fraud. Instead describe your worst days and state how many days of the week this is. If you do things on a better day, state what happens afterwards and how long it takes you to recover. You have to be able to do the things they ask safely reliably and in a timely manner- if you can't then say why this is and link it to a medical document as evidence to back this up. You can get a copy of your drs records free from your gp.