Here i go !!!

Well after a very,very stressful few months,as expected i am in a very bad way, i have been feeling more and more weak and unwell for months now, i cant stand for more than a minute or so,if i try i just about collapse,i can just manage to get washed and dressed and thats my lot.

i wrapped 3 xmas presents this morning and after i finished i was a mess,and wished i had never started.

I have tried my best to stay strong and positive,even though my hearts breaking over my little grandaughter,but its all too much for me to deal with.

my partners due to have his hip replaced on 16th dec,and he thinks he might have to cancel due to me being so unwell,i told him not to cancel,but i don’t know how i am going to cope if he does have it done,theres so much going through my head at the moment.

i have some real bad episodes where i feel like i am about to die as i dont have one bit of strength left in me,it does pass after 20 minutes or so,leaving me so worn out.

i havent been as bad as this since a bad ‘do’ 3 years ago,and it lasted 4 months,i was bedbound,until i got going again,at least to the point where i could stand for a bit longer,and after a while i could do bits of housework.

each time i get as bad as this i fear i am never going to get over it,so i suppose i will just have to try, even harder.

J x

Hi Mrs J

Please ring social services adult care team now, it gives them time to put a plan of action in place, for when your partner has his operation, as possibly both of you will need help.

Wishing you all the best.

Pam x

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Hi J, so sorry to read your post. My heart goes out to you.

Please take the advice and ring social services for help when you’re partner has his op.

I did notice you said that getting washed and dressed is exhausting. I absolutely agree as is for me too… but why get dressed? Honestly if I don’t have to go out (which is almost every day!) I wouldn’t even consider getting dressed!

I don’t do anything that makes life even harder than it is! I live in my dressing gown! (Actually I’ve got 4 dressing gowns… 2 light ones and 2 warm ones).

The dying feeling is awful. I seem to get them less now… I don’t know why but maybe because I’ve simplified my life so much or maybe to do with high dose Vit D3… BUT when I did used to get them a lot I always had a banana to hand. For some strange reason eating a banana would make the meltdown pass much quicker. Worth a try?

You will get over this bad episode J but it will happen whether you try or not. Fighting it won’t help. Remember… the more you fight MS the more MS will fight back!!! And it was a neuro who said that.

Wish there was something I could do to help… (((((((((((((((HUGS))))))))))))))

Thinking of you,

Pat xx

Hello, Mrs J.

Adult care can help. They were right on the ball a few years ago when we had trouble with my mum.

Big hugs, Steve. (((((((((((((((((((((((((((x))))))))))))))))))))))))))))))))


Agree with all the other have said you really must contact social services the earlier the better, one thing at a time and your priority right now is the phone call.

Thinking of you and sending positive thoughts your way.

Jan x

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hello Mrs J ,

I’m really sorry that things have been hard for you. I have a social worker and was given 12 hours direct payments, sometimes they will ask you to make a contribution, i don’t have to i think it depends on if you get employment support allowance. I really couldn’t cope without my carers they are brilliant.

Like Pat says don’t fight it …Iv’e been in my nighty all day today, i just felt to poorly to be bothered.

Sending Hugs Michelle x

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Thanks for your support gang, we dont want to get social services involved, we are very anti social services,too long a story to say why, i am going to manage myself,and my daughter will also help if needed,

last time i had a bad relapse we asked for respite and they just told me there was nowhere for me to go because of my age !!!

I had a team come in,but to be honest i found that stressful, they just seemed to ask me lots of questions to fill forms in and then go,the carers got me a bowl of water so i could wash and that was about it, they were wanting to sit and chat,more than helping me,so thats put me off too.

J x

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Hello again Mrs J,

I understand, Iv’e had an experience with a disabled childrens social worker that that left me very upset…I don’t want to go there, again long story. All i can say is that adult and children are two separate departments. Two and a half years ago I was so ill that in the end Lee got in touch with adult social services and a lovely lady came out, she was very kind and not the least patronising…I hate it so much if people patronise me… Anyway i was so desperate,we had the children and Lee had to go back to work… At first she got me some help called Re-enable, I was worried how i’d go on but the ladies they sent were lovely the only complaint was that id get used to one of them and form a bond and then they’d send some one else, We had the re-enable support for 6 weeks and after that they gave me 12 hours direct payments, now i pick my own carers… Then once it was set up they closed my case, so although i have support, the social workers are no longer involved unless i want them to re open my case.

I hope that helps

Michelle x

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So very sorry Mrs J that you continue to live in the middle of a nightmare.

thinking of you and sending you hugs,

Nina x