Husband and MS

Evening Everyone,

I am new to writting in this part of the forum so I will give a quick version of my story,basicly my hubby got diagnoised with MS on the 8th Dec 2011,it obv hit us like a ton of bricks as we are both so young (sorry if that sounds stupid but i hope you understand i did not mean that in a nasty way,just in a case of “we are both young and healthy! we wasnt expecting that news”)we have 3 children (6 8 and 1 so we have our hands full)

My partner has took it good but now he seems to be really struggling with it,esp as his ms seems to be getting worse (is this normal?) also he had a relapse at the end of june and his nan was dying of cancer and we was getting married in the aug so his gp signed him off from work for 2 months, he went back to work in september he was on reduced hours then went back after 4 weeks to full time. He was ok for the 1st week being back at work but then i slowly noticed getting him worse and told him,well finally last week he realised and went to see his gp (as his ms nurse is not very good) who has now signed him off for a month and said that he is going to write to his work to get occupitonal health in to asses his working conditions and his duties to see if he can do his job,the dr said this may take some time so go back to see him in about 3/4 weeks (as the gp will have the neuros letter to as we are seeing the neuro on thurs) and he will sign him off again.

my hubby has just been so difficult to live with these last 2 weeks and he has been so up and so down, i just feel like im about to blow,i know its hard for him i do really understand and my heart breaks for him,i just feel so useless and i feel i have to be strong for him the children and myself,i do talk to my friends but i feel like bore them with it and they dont understand as they are not going through it.

also can ms get worse quickly or am i just imagining it?

if any one can help with any of this,id be very grateful

thanks :slight_smile:

hello. oh dear, you do have a lot on your plate. Having young children is hard enough when we are well. So it hits doubly hard when the main bread winner is sick.

Your hubby is still quite new to being diagnosed with MS. I am wondering if he does have RRMS or another type. Having said that, there are many folk here who have relapses that can last for months. So I wouldnt want to alarm you with that statement. As far as I am aware, our employers are the ones who engage a private doctor to tell them if an employee is fit for the job they do…that`s how it hapened to me, after being on the sick for 8 months. It followed with retirement on ill health.

But perhaps your hubby`s GP is just talking about his working conditions./environment, to see what changes can be put in place, to make it easier for your hubby.

When serious illness gatecrashes into someones lives, the results can be devastating. You need support from family and firends. I do hope you have that available to you. If not, why not ask for a carers assessment (which is you), to see if you can get help from the Social Services.

Sending you a hug to warm you.

((((((((((((((((hug)))))))))))))

luv Pollx

I’ll give you a brief history of me and my husband - he had problems (“probable MS”) in 2003 - his work made adjustments for him - he had to have a nominated person in case of fire who was responsible for getting him out (it was me as we worked in the same building!). They also advised him never to use the stairs - only the lifts, as his balance was a bit off. Just their normal Health and Safety over-reactions - maybe that’s what they will do for your husband?

When he was finally diagnosed in Jan 2006, he was immediately offered/forced to take leave under their PHI scheme - to be honest he was a bit of a liability in terms of his balance by then and he will now admit that his concentration levels were zero!

I gave up work to care for him full time in May 2007 - our first child was born in 2004, and our second in 2007.

I’m not going to tell you it’s easy - my husband has a very fast progression (and in the last year has gone down hill massively). He is now bed-bound, doubly incontinent, and has no use of his right side, and limited use with his left. He has repeated infections - today he has been admitted to hospital again with another suspected urine infection (he’s only been home 4 weeks after the last one).

BUT - the point is, his progression is unusually fast. Yes, it’s hard work even with my carers who come in for about 1.5hrs a day - with the kids as well I’m continually exhausted. Last night I didn’t go to bed till 4.30am as he was restless and continually shouted for me to help re-position him. His prognosis is not good BUT most people do not progress this fast or even ever become this disabled.

You’re not alone in the “young family and MS” club! Message me any time - even if just to complain about your lot (I do a lot of that too!)

x

Hello

Reading your post, it seems that your husband could cope with the reduced hours. So I would strongly advise that when he feels better that he should explore the possibility of returning to work on a permanent part time basis. This might give him the ability to maintain some work. Obvioulsy I do not know how this will affect your financially but it it is at all possible then it might be better for him to be able to work psychologically.

He may well be depressed, which is of course understantable. Anti-depressants have helped my husband control his mood swings which are also a feature of MS.

With regards to your husbands condition, it is quite possible that his symptoms are much worse over a short period. It is possible that this is a relapse, in which case he should make a good recovery. It is possible that the physical stress of resuming full time work has made his symptoms worse. My husband was in his mid 50s when he was diagnosed and the most difficult thing was to understand how to manage the condition and to accept that you could not do the things that you did without even thinking about before. This must be much more difficult for you with such young children.

Its OK to blow now and then, I am normally a calm controlled person but once in while it can all get too much. Dont be too hard on yourself, but keep talking to your husband about how you feel.

I hope he feels a bit better soon.

Best wishes