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.

Afternoon i hid this by accident cos im a tool for those of you having a tough time it really isn't easy some days

I'm a bit late to this thread, sorry, but can related to much of how many of you are feeling.

I have relapsing remitting MS. This time last year I felt as if I was clinging on by my finger tips. I'd had several relapses close together, no treatment and my social life and most friendships felt like a distant dream. I could just about manage to work and do the basics to keep the DC fed and safe DH was little use

Fortunately, with the help of a (very) few great friends and my parents I clung on and was lucky enough to have a life changing treatment almost a year ago.

Life isn't, and never will be, what it used to be but I have learned what's important to me. I've found great comfort in renewing old friendships online - there's less chance I'll let people down if I'm not having to go out.

I still mourn the old me and my old life but I now have a much smaller group of friends, old and new, who are much more understanding and I try every day to look for the positives.

I still mourn the old me and my old life

YY to that. I'm finding quite hard to do that. I don't want my life to be 'an ME sufferer'.
I want to be me who also has ME iyswim?

I don't know any different iyswim must be quite hard trying to adapt to the new you and accepting illness

I was chatting to a mumsnetter who was fighti g to keep hold of her independence reluctant to use her wheelchair I said it took me 5 years to admit to needing one for long distance was the best thing i did you are not giving in to ... you are just getting on with life in a different way

I've been having NHS funded therapy to help me accept /come to terms with my new 'me'. Have found it very helpful.
Might be with a look in your local area?
Time helps a great deal too.

I agree about a changing mindset re:using aids but yes it takes a while to accept this. I'm only half way there I think - made a phone call about buying a wheelchair but haven't yet followed it up :o

Do it heymac bet it was you i was talking to

I talked to my friend today about this kind of stuff. When I say things like 'I appreciate your offers of support and please don't think it is a judgement on you but if I get to a point where I need PIP and carers and wheelchairs and walking sticks and people taking my children to school I will want to be dead' I really mean it. I can't really explain why I seem to be different to some other people who seem to be OK (not happy once) with accepting any or all of those things, even temporarily, I just don't feel that way. I do not want to accept that I do not want to live that way. I would prefer to die.

When my mum got diagnosed with sarcoidosis she actually felt as though the choice she wanted to make was to continue with her career even if that ended up with her dropping dead. Everyone else in the family was very shocked and upset but I got it. I got it absolutely and totally supported that as her choice. This was before my diagnosis.

I just think maybe this could just be about the kind of person I am. Just like where I got to with the end of my marriage - I just didn't want to try anymore, yes maybe we could have worked on it or tried things but I didn't want to and with this I just really strongly feel like I don't want to accept it.

I did bite the bullet and enquire about counselling from the MS society but it is just 6 sessions of CBT so no use to me...

You seem in such a sad place offred lots of what you are saying is quite drastic

Why would the 6 sessions be of no use? Would you really not cope with somebody dropping your children off at school ? Of course these are your feelings but i do think acceptence has avoided you I don't know if you will ever get there but I hope so

Yeah, I know it seems drastic.... not sure what to do with these feelings really. Is not a pressing issue really though as am not actually affected in any of those ways ATM.

I have had CBT before and find it a heap of utter bollocks - made things worse, felt invalidating and Di's empowering. 6 sessions is also nowhere near enough, with the NHS they can at least extend if required so would be better to fill in self referral form.

Looking after my DC is the only 'success' in my life. If I can't do that I don't feel like life is worth anything. It was traumatic having to concede to having help with the school run when twins were newborn. Is not a thing I have suddenly felt upset at the thought of.

You sound to independent it is actually ok to rely on people you can raise your children well and have a disability I am a believer in living the best you can. Being ill/disabled batters your mental health it really does.

Maybe. For me losing my independence would make my life not really worth anything to me. It's so personal a thing really. I know most people get some satisfaction from living the best they can. I think I just feel I am not like that. I won't find it tolerable. I have spent my whole life tolerating and surviving. I am not prepared to continue living that way.

And yeah I know there isn't any other way of describing that than extremely self involved and extremely selfish.

You know you feel how you feel and i am a supporter of how you control your own life and death how you feel is just as valid as anybody elses

@mrsjayy - it probably was me :o

@offred - I had interpersonal therapy on the NHS through our local iapt provider. It's a 16 week course but due to my me it's taken over a year to complete an the sessions. It's aimbis to help people come to terms with big life changes. Might be worth a search to see if this is available in your area.

Yeah, I tried the IAPT locally before which is where I had the ridiculous CBT but they cancelled the contract with that private company and gave it to someone else so worth a try.

Usually with the NHS though I have been told the 'you have great insight, we don't believe you are at risk of suicide just now and you cope really well so there isn't really much we can do for you'

Will try though.

Do you put a front on offred ?

In daily life, yes, absolutely. Not in therapy, no. Not on the internet either . Some therapy I have had has been wonderful and valuable but some has been downright damaging - mainly because I did engage.

The CBT was during abusive relationship and basically they wanted to focus on helping me to rationalise my 'irrational thoughts' which were actually perfectly rational TBH I now know. It deeply ingrained the things he was telling me - 'you are crazy' 'you are overreacting' and made me worse.

So that's the problem I have with 6 sessions of CBT really - don't think it is long enough to get to grips with the complex issues and if you don't get a grip on what is actually going on and you do the CBT based on incorrect etc info can make things worse IMO.

Get told that because of cuts. In the bleak NW, we have no money and no services. They wait till ppl are totally desperate or provide limited service to ppl without complex needs.

I have M.E and I feel really misunderstood and not taken seriously. I'm a nanny ( look after a family friends little girl) and they just don't get when I'm feeling run down and fatigued. My ex didn't get it either and I'm fed up of people complaining they are exhausted or tired to me when I feel like I want to die. Sorry for rant I'm feeling really upset today like no one does take me seriously so I'm really grateful I found this post

AyD0 rant away... make a change from it being me!

I think whatever is going on in anybody's life the biggest thing is if your partner is not supportive - that makes things so much harder IMO.