If you have a chronic illness ... friendships

[Trilling]

Have name-changed for this.

Have ME/CFS. I have some times where I'm under part but as OK as I can be, but have alot of periods of horrible sickness that few people see, where I'm too ill to do anything. Generally, its restrictive and its pretty debilitating in terms of physical activity and also work.

I think its not the only thing, but it has had a real impact on my friendships and relationships. Either people ignore that I have this illness. Or they just talk about themselves a lot, one friend to such an extent that I felt it was insensitive, and I've distanced myself. I have few contacts and friendships left. Even if I was No. 1 healthy person I am sure I would struggle with some aspects of friendship. Its just with a chronic illness, they seem to be magnified. I feel I have to make my own inner life very much, if that makes sense .... but I do crave fun and friendship occasionally.

Rant away Offred. That's what we are here for.
I'm feeling quite flat at present. Tired of tests and drugs and appointments. Can't see properly. (Eye inflammation due to my auto immune disease) gaining weight from steroids.
I feel myself withdrawing from people daily.

Ha ha! You shouldn't encourage me! But thanks for understanding.

I lost vision (optic neuritis) last summer, it is what led to my diagnosis. I didn't have steroids but it improved on it's own and is completely back to normal.

At the time I read a load of stories online about permanent loss of vision and colours being affected in the long term and nothing about it just going back to normal... but obviously it does happen like that because that is what happened with me. Took about 3 months before was completely better.

But the last period of the three months it was fine most of the time but would go again when I got hot so most of the time was normal.

There's loads of horror stories about vision problems. I have had uveitis both in the front and rear of my eye and because I have an auto immune disease the chances of it recurring are high. My vision is still blurred which drives me crazy!
But I'm hopefully going on a new medication (that of course brings its own issues!) to prevent this happening again.
It's being dependent on others that I hate. Because I haven't been able to drive.
Then again if they don't ask to help i feel bitter and unheard. Haha my friends and family can't win.
I get so resentful when I see everyone just going about their normal lives and mine has changed so much and is much more restricted now. I still look normal and healthy so it's unreasonable to expect people to understand yet I do expect that.

I think I'm still firmly in the grieving process. It's only been a year since diagnosis.

And yes there's lots about the quality of vision as opposed to the visual acuity, that I had no idea of. Fortunately mine has been limited to blurring so far and only in 1 eye.

My mum has sarcoidosis and has had awful uveitis in both eyes but she has had a lot of treatment, surgery, new glasses and is fine and still driving.

The legal requirements for vision and driving are apparently very lax. Though that doesn't do much about you feeling unsafe to drive.

Offred (I know the thread's moved on) I just wanted to say - I was talking about MY tendency to pride not accusing you or anyone. I know realising this has taken me months to years too. It must seem so bloody unfair - I made it to a seniority where I can be shunted sideways - not riveting clinically but past the active rushing of the junior years in my field.
My church have been amazing - just throwing that out there as a source of potential understanding support.

True, I know I'm legal to drive but I'm not risking it for a few more days 😀

Roodolf - oh I know! Don't worry about that at all. There definitely could well be elements of that. I would be glad if it were that really because I can rationalise that and decide that it is silly!!! Ha ha!

It was a very helpful post, thank you.

I hope your uveitis improves gruffalo, my mum's was about as severe as you can get and whilst she isn't the same as before parts of her vision are an improvement on before as she was very long sighted and had astigmatism.

She was not as sensible as you are about driving! I had to ban her from seeing my dc for a while because she was trying to use driving them around (long trips even) to 'prove' that she could still see.

Was in both eyes too.

Anyway, what I'm trying to say is it can be resolved even if it has got really, really bad which I hope could offer you a tiny bit of hope even if it does nothing about the frustration of still being affected by it at the moment!!!

(Which is the kind of thing people say to me at the moment that makes me unreasonably grumpy )

Thanks Offred. It is comforting to hear good news.
I'm feeling a bit better today 😀

Have a good day everyone