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New member - Carers UK Forum

New member

Tell us a bit about yourself here.
I seem to have spent most of my life caring. My Mother ( who died nearly twp years ago) had RR MS and once diagnosed my father went, so I - being the nearest child - did most of the caring - though she was amazing and determined to be independant. Then I did my stint as a mother ( which was great). First husband could not cope with disabled mother in law and small child so reinvented himself as single man. After 9 years met a new man - soul mater - everything I had hoped for. 3 months before wedding he was taken ill ( we brought it forward - managed to reorganise withing 2 days and had very very small wedding) and was diagnosed with PP MS. 5 years on we are coping (just about). I am now only wage earner - and also suppporting neighbours who are going through a cancer crisis. P is fairly immobile and needs either wheelchair or scooter. Biggest problem is his mental state which is either very grumpy or even more confused. Feel very guilty but could do with some people to talk to who understand what its like and don't spout platitudes. I knwo I am lucky to be able to earn a good living etc - but I do get very frustrated etc - and don't want to be disloyal
My oh has ppms also diagnosed 5 years ago, symptom onset nearly 10 years ago. Boy were those 5 years stressful and frustrating!!
Lost our home and our business then on top of everything else.
Oh is not very mobile, balance problems, fatigue, one leg works, the other drags, but gets around the house usually ok with frame, stick, hanging on to furniture etc. The house is not wheel chair friendly Image Outside he uses a scooter.
Mental state, tired, confused, short term memory loss and often grumpy.
I, too am the sole wage earner and that is not a lot as I can only work part time.
Welcome to the club Image
Hi Sirius,

Just want to add my welcome to forum too.
The site has so much information so please take a look round.
Always someone around to listen and wont take you long before you feel right at home.

Look forward to reading more from you.
Welcome Sinus,
my oh has ppms, diagnosed some 20 years ago. He is now immobile, but remains very upbeat. At the beginning he was in denial, but inthe long term this has worked for him.
It is very wearing on the carer mentally, and it has taken me a long long time to come to terms with the fact that my life is no longer my own.
But this place helps, I don't post much, but read every day, and it cheers me up.
So visit every day and, as Myrtle says - welcome to the club Image
Just adding my welcome to the forum Sirius.

We're always here if you need advice, support or just get something off your chest, we also manage the odd laugh which we all need from time to time.

Look forward to chatting with you soon

Paula xx
thanks everyone for your support. I guess what I find hardest is maintaining some sort of enthusiasm when my oh is very negative. He has clinical depression because of the ms but refuses any sort of medication as 'real men don't take medicine'. Image . It can be very tiring!! Image
I find it hard not to laugh sometimes when I come across people who won't accept help because "real men" don't do it.

Are the ones who accept help fake men?

It's easy to fall into a trap that says you can't accept help: but I think the real problem is that to accept help requires you to face up to the truth - that you cannot stand alone and you need someone to help you. Getting over that hurdle is sometimes impossible.

My wife calls it pigheadedness. Mind you, she is looking at me when she says it, so maybe I need to think on about that too... Image Image
I guess its a bit like the old 'real men don't eat quiche' thinkg ( and no, he doesn't). Five years down the line he is still in denial. Don't blame him really as just as he gets used to how he feels he get worse and has to deal with a whole load more new symptoms with the knowledge that there is no cure. He is just desperate to hang on to his last bits of independance.

Me? I'd just like to hang on to my sanity - oh and.....go out somewhere without feeling guilty!
Going to bed now - night all Image
Ah, the G word.....guilt.
There is a load to carry all on it's own. It starts with the fact that you are fit and able while oh is not and as that gap widens so the guilt grows. It is nothing you have done, nothing you can change, nothing you could have done differently, but that does not change how you feel.
Then take any example you choose.........do whatever it is anyway and don't enjoy it because you know oh would really like to be doing it too and you feel like you are rubbing their nose in it. Don't do it and feel angry and resentful that you didn't do it, then guilty at feeling like this because it is not their fault.
Life becomes a balancing act.