Disease progression

Hey guys, feeling somewhat overwhelmed at the mo & wondered if anyone has any suggestions ?? I’m struggling to come to terms with the fact I can do less & less physically. Daft really as this has been happening for over a decade, I guess I never imagined things would get quite this far … It’s how to cope mentally with things I could use some help with, any wise words welcome, LouLou :slight_smile: x

My very recently assigned OT is currently zero-ing in on the mental side of MS …I honestly don’t think that’s an issue of mine, having had more than 15 years to try getting my head around this (…and if I’m an intolerant so-and-so, maybe I was always like that anyway?!!)

Anyhow, it may be worth asing if an OT could be of help to you ?

Best of luck!

hiya ll

what u are asking is (i believe) the key to coping with ms!

long term condition means just that-it is here for life! i am fairly disabled now-wont bore u with the details!

things that have helped me include knowing the the plaques are not my fault-i have no control over which areas they damage.

be honest with friends/family re own capababilties.

i find that separating body and mind is beneficial but not everyone agrees/can do that.

erase guilt from your vocabulary and daily life-it breeds so many other issues that u can do without.

eyes going skelly now but thats a start…

take care, ellie

Hi Loulou, soory to hear you’re having a bad time of it. This is just how I’ve been feeling for the last couple of years and for me it’s been happening for about 25 years! I don’t think that it matters how long we’ve had to “come to terms” with having MS, I think it hits us hard when we get to that point when there’s so many things that have slipped away from us that we begin to feel that there’s not much of us left! The last two years have been made especially bad for me as I lost my mother to cancer a year ago and I found that, along with all usual bereavement stuff, I was forced to look very closely at my own condition. Bereavement, especially of a parent, brings our own mortality in to shape focus which if you have chronic health problems is even more painful! I was really struggling to cope emotionally but thought that this was just all part and parcel of life with MS. Luckily I had a routeen appointment to see my MS nurse and she was worried about my emotional state. She said I should go to bereavement counciling and get the bereavement stuff sorted before I see a councilor about the MS. She said that she didn’t think that I had finished grieving for all the things that I have lost because I have MS and I told her that I had only just started! Anyway, I have only been to the “bereavement” councilor 4 times so far and I have been coping so much better, we’ve move a little away from all the stuff that the death of my mother brought up and are spending on more time on the losses I feel because of my MS. I never thought that it would be so helpful, just talking (and crying) really has made a big difference. I think that as, for most of us, MS is a progressive illness we are forever trying to cope with new difficulties and without help it’s increasingly hard to keep up. Sometimes it just gets too heavy a load to carry on our own, so my advice would be to ask your GP to refer you to a counselor. It really does help! Sending you hugs and support Teddie PS sorry about the lack of spacing, it’s because I’m using a tablet which (because it’s just an oversized phone) removes any spacing when I post!

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Thanks for the reply, I will give that a try ! :slight_smile:

Thanks Ellie, I think your right and half the problem is that I’m not in control of it & I get so frustrated that all my efforts ( & I feel I do make plenty ) go unrewarded as I don’t get better. The body & mind thing is a cert as a few people have mentioned it, I need to crack on with doing it, I do know how , so I should put it into practice. Sorry your eyes went skelly, thanks for taking time to reply, take care, LouLou

Ah bless ya, so sorry abut your mum that must be a tough one. I will defiantly take on board what you’ve said, I feel really fortunate to have had so many people take the time to offer their advice, I feel quite humbeld. Thank you, LouLou :slight_smile:

Thank you all so very much for taking the time to reply to my post, some sound advice & also reminders that I really needed. I hope everyone got the personal reply I sent to them, as I mentioned in my profile me & technology haven’t quite got together yet !! I feel very lucky to be able to have access to this kind of support , it’s brill , thank you :slight_smile: xx