All of the above, especially the MS nurse taking for ever to reply to my messages.
I sometimes feel IF I get the chance to talk to the MS team in person that they are bored of listening to the same thing day in day out from people with MS.
Even the consultant just seems to sit there smiling and agreeing with me without actually offering anything positive.
My wife has been a tower of strength and will help in every way, but I can see lately as things have progressed and I’m constantly talking about the MS that she is getting fed up of hearing me talk about it, well moan about things is a more appropriate word.
The problem we all have is that MS is with us every day from the time we wake up, every step we take it is all consuming, we cant just switch off from it, at least I cant anyway.
In the 4 years since being diagnosed it has completely and utterly changed not only my life but also my wifes and son’s.
In the early years I could almost get on with everything that I had always done, and I never really let it bother me, in fact after being diagnosed the MS settled down to almost non existent, and it didn’t really have any real impact on my life but over the last 18 months things have gone a little worse, and the last 6 months worse still, so now I’m constantly trying to deal with it physically and mentally.
It’s on my mind every minute of the day, even whilst I’m sitting down trying to relax thoughts are niggling away in my mind.
Unfortunately MS seems to be one of the illness’s that makes you feel your on your own out in the cold with no answers…
I guess there’s plenty of places to go for advice and talk about your problems, but personally, for me anyway, talking and getting stuff off your chest might help in the very very very short term, but as the physical problems of MS are always there these days, I don’t think a “chat” is going to make me feel any better.
You might be different, so councilling may help, I guess it’s down to the individual how they feel about that sort of stuff ?
The only bit of advice I can offer is, your not on your own, what your going through is pretty much “normal” for anyone with MS.
One other thing, if your not happy with your MS team look for a 2nd opinion, you will be surprised how much treatment and support differs here in the UK.
I’m seriously thinking of taking other advice, as my local MS clinic here in Swansea are not what I would expect and are a little too laid back in their support and offer of treatment, especially medication.
I’m always the one chasing them for advice or help but their response is just so slow it takes for ever to get a reply and when it does come it never really offers anything positive to grab on to.
At the moment it’s now taken them over 3 weeks for them to contact my GP to alter a prescription, 3 bloody weeks and still waiting !
It’s things like this that makes having MS worse, if your having a bad time you need a response NOW, not have to wait weeks struggling and getting even more stressed, which is something we really do not need on top of the MS.
Anyway oddly enough I feel a lot better now after getting that off my chest !!!
Hope all goes well for yourself.
Your employer has a duty of care to accommodate you in your work place or role, it’s the law.
I’ve very recently approached my employer and explained that I’m struggling with my duties due to the MS, within a week they had taken me off shifts, had completely altered my role, and are still altering things to find a suitable role/hours ect.
You can take “disability” leave, which is NOT sick leave, so wont go against your sick record if you need time off.
Theres loads of things your employer can and must do to help.
Work with them, be open and honest, dont struggle it’s not worth it when you dont have to.
I held back telling my employer for over 3 years because I was worried about losing my job, the truth is the opposite, they have been very very good, in fact it was them that told me how they have to act within in the Law.
Try looking at the ACAS web site, or search disability and working rights.