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How true!

This is a great blog (from this site)… about learning to live with MS & how difficult it is:

http://www.mssociety.org.uk/ms-support/community-blog/2013/10/when-will-i-get-good-living-multiple-sclerosis

Pat x

A very good read. I particularly like the bit about having to re-adjust your expectations. This is what I’m struggling with at the moment. Am looking for a new job/career, and life seems to be telling me not to return to my old profession of teaching. Am having too many knock-backs and am getting quite depressed as a result. . Not really sure what lies in store next. Still, just keep buggering on as Winston would say.

It is bloody hard!

Some days I find better than others though. I obviously had MS years before I realised anything was wrong and really struggled with fatigue and cognative problems… so now I am at least able to enjoy NOT having to struggle like that any more.

But some days… well… yes let’s just say it’s not easy.

Hope you have luck in finding a new career. Have you thought about private tutoring?

Pat x

To be clear… of course I still have the fatigue and cognative problems… but I don’t work any more and also now I know I’ve got MS I’ve got an excuse!!!

Pat x

How true it is what he says. I lived for years thinking I was pathetic for not being able to keep up with what others my age or older could do. Like you I also started losing my cognitive abilities, I couldn’t even “find” names of people I’d been working with for years.

I now have a diagnosis and still find it hard; not being consistent, the fatigue, bladder and bowel issues etc… I too wonder if I’ll ever get used to living with it or if a time will come when I can’t be cheerful, telling people I’m coping fine. It’s a very funny illness and I think one of the harder ones to live with as physically I look well, except for the stick and clumsiness.

Does anyone else feel like that? You all seem to accept and adjust so easily, yes we all have a rant but who doesn’t? Sorry if I sound miserable, I’m tired that’s all, I suppose the “cheerful” part of my post has now been answered.

Take care.

Cath xx

Cath hon you are still newly dx and it does take AGES to start to get your head around it!!! It’s a huge thing to come to terms with. Give yourself time.

It does get easier… but I’m not sure if it ever gets so easy that it doesn’t bother you. I have days when I fully accept my disability and don’t really think about it and then all of a sudden I’m really quite shocked by it. How did this happen to me? I’m not sure if that question ever really goes away.

We may seem to accept and adjust easily, but we all struggle with it… good days and bad days… moments of panic… BUT the thing to remember is that in general it does get easier! Like with everything, you get used to it. Even MS can start to feel normal.

Remember, like the stages of bereavement, you have to go through each stage to accept your diagnosis.

Hang on in there Cath. You are doing brilliantly and we are all here for you.

Pat xxx

I’m looking forward to a good read later, I was going to read it last night but fatigue got the better… you know the story :wink:

Sonia x

Thanks Pat

Everyone keeps telling me how well I’m coping, and usually I can look at myself and think that I am very lucky, there are a lot more people a lot worse off than me. The surgeon who fixed my neck couldn’t believe I was still walking, and that was before I got my diagnosis. I have new hobbies and interests, supportive family and friends too.

I just have days where I get frustrated, want to question my Neuro as these illnesses happen to other people. But deep down I know enough to realize I’ve had this for a good few years, and accept it. I’ve accepted a lot of my limitations but fatigue is the hardest.

Take care, and have a good day.

Cath xx

Hi Cath, You ARE doing brilliantly…especially with all you’ve had to sort out. Pat is so right it does get easier…I think simply because it becomes the norm for us. Never the less even after twenty odd years of this c**p I still have days when I think poor old me…why me etc. All in all though I have to say that, even though you are quite right when you say it’s the strangest illness, I really am very content with my funny little life, I’ve learnt to appreciate the things I do have and not dwell on the things that have gone. If you get the chance to take part in a mindfulness course…or as I have done, read up on it on line…it does help enormously, if you can teach yourself to live in the now…it’s certainly not 100% better a 100% of the time…I expect you’ll always have the odd day where you can’t help but feel sorry for yourself but try not to be hard on yourself…lets face it…even “normal” folk get to feel sorry for themselves sometimes…without half of the reasons you have. Take care of yourself …maybe a nice chocolate treat, or some such thing is in order? Never forget we are all here when you want a rant. Very best, Nina

Hi Cath,

You are dong really well, remember it is still early days, it really does take time to accept , and even then we still have days when frustration raises its head, so don’t beat yourself up, be kind to yourself, it will get easier, , almost the norm.

Hang in there and keep reminding yourself that you are doing good, it does help.

Pam x

Good read Pat, thanks for posting the link.

I understood elements of every point he made and just feel that the irony of my situation is the other part I’m struggling to get my head around. …

Silly things keep cropping up, like helping a lady after a fall in the office and finding out she had MS - I’m so relieved to say she was OK but it frightened me as it was somewhere I’ve nearly fallen before too, not because of any hazards, I think double doors are just not MS friendly! As mum Mum said, it was pretty lucky it was me there. fetching help etc, as if it were a colleague saying “I just saw a lady with a walking stick have a fall” there’s every chance my husband might have rushed into the Ladies thinking it was me :wink:

I’m doing a contract at a bank at the moment, I asked a customer on the phone the other day what his understanding of his critical illness policy was and he something along the lines of “it pays out a lump sum if I’m diagnosed with a listed illness, you know something really bad like MS” that one knocked the air right out of my lungs but I managed to complete the call.

And at risk of repeating myself… I was so fit and now I truly struggle with even the smallest things, I get wobbly after hanging a single load of washing. I’m sure I will eventually accept my limitations BUT that is such a hard one…

Sonia x

Sonia you’re so right. When I told my employers who are nurses about my diagnosis their reactions were absolute horror and pity, as if this was the worst illness anyone could get, and my daughter’s gp was the same and every time I see her her whole manner changes to feeling such pity for me. I had worked with her so she knew me as a nurse for years and knew how active I was. But each time they look at me with pity I feel like a real invalid with the worst illness and because they’re medically trained I get anxious as if they know something I don’t, almost as if I’m terminal or going to be totally incapacitated very soon.

I’ve accepted many of the changes and am trying to live each day doing what I feel yup to doing. Some days are quite productive, others I might watch films etc. I just wish sometimes that people would see me and not my stick or my illness. People don’t seem to understand that ms is not the end of the world.

Enjoy your day.

Cath xx

Forgot to say thanks to you both Pat and Pam, yes you’re right it is early days for me, I will eventually learn how to be kind to myself, and take the advice I would give to anyone else, I keep picturing the patients I used to look after, telling them to rest, and now have to give myself that pep talk.

Take care

Cath xx

Sorry again, was meant to include Nina. xx

Cath, that made me checkle, it’s like carrying too many things, something always gets dropped and you only realise if you see where they fall lol. I’m thankful facebook has an edit button as I always remember something the second I press post!

I guess that most users here would forgive all sorts of omissions etc. as we all have our different wobbles - I read a post the other day that was directed at another user but went to great lengths to respond so something I’d said and I just shrugged… at least I mostly manage to correct my typing before I post (but would still love an edit button)

Sonia x