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I hate this disease Aaaggghhh

Hi all, I have been wondering whether to post or not. But after today I felt I needed to do this. I am feeling so angry towards MS and how my llife has changed so much. I feel I have lost all my independence. I can’t go anywhere without asking someone to take me, I can’t get myself food can’t have a shower. I started going back to work on a phased return two months ago sfter being off for 2 months. This has been really hard a lot harder than I thought which is why Iam getting more angry and frustrsted. Today had a meeting with my boss, and I was fefeeling totally drained from several hours training. Then it came round to last year’s performance dialogue ehich should have been done in march. So I wasn’t around for these. It was not a positive outcome and I felt totally dejected as it had never been mentioned that I would get this outcome. I was told that the fact I was ill didn’t make any difference. But the reason I was given didn’t add up. This has made me feel really rubbish and have struggled to stop crying since I got home. I feel that the MS has contributed to this and has really knocked my confidence on being able to get back to work. Sorry for the long post

I am sorry that you are having such a hard time and many people here will understand your frustration. Clearly from what you say MS is effecting your ability to work and I find it breathtaking that you are not been given the support you need. Most large employers have a separate HR department who are used to dealing with this kind of situation but smaller businesses can be a bit hit and miss. Most of us don’t deal well with stress, so the lack of compassion is likely to make matters worse. I hope that you can get a more sympathetic reviewer to listen to your issues. All the best, Peter.

Thanks for your reply! Having issues with big company red tape

Hi, this is so sad for you. I know how much my condition has robbed me of things I used to do.

Having such a chronic illness does take a lot of handling.

What it does to our bodies and minds is impossible to explain to those who are fit and well.

We cant really expect them to know how we feel…but what we do ask is for understanding and patience…we dont want sympathy or sad looks or comments like.I knew someone with MS and they were so and so or whatever.

Do you think you need to reduce your working hours, if it all causing you extra fatigue and stuff you could do without?

I am surprised that the talk with your boss and the appraisal didnt allow for your condition. That can`t be right, can it?

Perhaps now is the time to re-evaluate your working life.

luv Pollx

Thanks Poll. I always like to read your posts they make me start to think positively. Iam going to see how the next few weeks go and then really start to evaluate everything. The really good cry helped to realease the tensions that have been building up. So in a better position to look at moving forward. Going to spea with occupational health again to see how they can assist.

That sounds really tough. You need all the positive support you can get - a medal for being so brave and persevering with returning to work maybe!!! People have no idea. Occupational health are a good plan. I have just returned to work on phased return and do feel less confident. I worry I am going to forget things. My job is very intense and to be coping with MS symptoms AND busy job is so hard. Especially when others have no idea how hard it is to even get up in the morning. I feel exhausted just getting dressed! I think it is worth persevering as I am sure symptoms will be up and down and work does have many benefits. Keep on going Bea xx Ps keep fighting the ‘monster’ - turn that anger into fighting back, someone said on here “you might have MS but it DOES NOT have you!”

Oh ladies, so many of us in this same boat, it’s soooooo hard as you say Bea just getting up, dressed, ready and out to work, before you even start your job, nevermind actually performing at work in the manner that’;s expected of you, to the standard that’s expected and surviving the day, only to try the same to survive and achieve home and family life and demands as needed too…then the whole cycle again the next day!!!..but also as Bea says, we persevere, plod on and keep going…and we have this forum to help keep us going!..I’m not facing the work juggling these past 2 weeks as I;m off with a relapse, but aiming to get back next week or so, need the money :frowning: hang in there barney_owl !! Jools X