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 agree, I put a note at the end saying what percentage of bad days dd had and what she could do, the medium days and the ‘good’ days (relatively speaking)

@pizzaand there is nothing in my GP records though (I looked).
In part because I’ve hardly gone to see them - they have nothing to offer me.
In part because they haven’t recorded it.
eg the first time I contacted the GP in January because my symptoms had worsened so much, they didn’t record I had to stop work.
Why would they? Never asked for a sick note as I’m self employed so it’s not even recorded (or asked).

That’s one of my issues with PIP. I have no way to ‘prove’ I’m unwell. I’m ill but it’s unseen and unnoticed by everyone.

I would ask to see a specialist. I saw a rheumatologist that diagnosed my fibromyalgia. His report helped with claiming PIP.

There are no appointments at all with the ME clinic. Probably diverted towards LC instead…..

Can you get referred to rheum or at least make a gp appt to discuss it with them?

Who diagnosed me/cfs? Have you had bloods/scans etc to rule out anything else- autoimmune/thyroid/low ferritin/vitamin deficiencies

I'm asking because I was diagnosed with fibromyalgia a long time ago by a gp but I actually have a rare autoimmune disease

"That’s one of my issues with PIP. I have no way to ‘prove’ I’m unwell. I’m ill but it’s unseen and unnoticed by everyone."

You would be surprised how many people out there are in the same boat... I have an autoimmune disorder where I am often fatigued, limits what I can do on a daily basis. But I do have occasional good days too.

You do sound very unwell OP. I hope you can get a formal diagnosis so you can get assistance. It's horrible having any type of illness, but more so when you feel invisible.

OP re PIP, join this Facebook group: ‘UK ME and Chronic Illness Benefits Advice Group’.

they were SO helpful when I had to give up my much loved career and started the hell of claiming benefits

I get PIP, work full time and I didn't send in a scrap of evidence. Try it OP.

Yeah you keep saying that. Based on any evidence or just fomo?

Pardon??

If you can find an appointment for me, please feel free. I'd love to be able to see the OT from the ME clinic amongst other things....

@User48751490 , Yes I agree. I think fatigue is the hardest thing ever because it's so tricky to evaluate and 'see'. And there are many of us in the same boat.

When you work, how are you setting yourself up? Sounds a weird question but I find sitting at a desk completely exhausting, whereas if I can be propped slightly sideways against cushions in bed/an armchair whilst being on my computer I can cope for much longer. I find little choices like that made the biggest difference for me on my worst days.
I've had ME since I was 14, moderate for most of it, but had a really severe patch around 21-23 where walking to the bathroom was difficult and I couldn't raise my arms to wash my hair. I'm now working a full week in a physical job, so don't lose hope. I never say I'm recovered, it's like being an addict, you're never recoverd, always recovering. I still have to take it easy, rest a lot and manage my health but worlds away from where I was.

I know how it is to start doubting yourself. I would sometimes think, am I even ill? What if I'm making it all up? Sometimes I still do! That's because that is the narrative you're told. You are no less ill than someone with lupus, or MS or any other chronic condition.

When I went to a clinic at 21 they told me to plot our my energy in half hour increments each day, colouring in red orange and green. Do it for a week to track your high energy activity and your overall 'ability' per day. I worked out that showering was a real trigger, as was transport. Just being in a car, not even driving I found exhausting. I was at about 2.5 hours per day of activity as a limit at my worst. I'm now at about 9/10. And then you keep that as level as possible. Don't push when you feel better, as hard as that is. It's important to regulate and then slowly try to build. So rather than having a 'big' day when you're feeling brighter, you just increase your activity by maybe ten minutes (or even less!) and slowly build up that way.