To make sure you will never be a burden to those you love?

[atrcts]

I have Multiple Sclerosis (neurological disease where brain lesions form on the brain and cause damage to that specific related bodily function.

I am currently able to get around but struggle a bit when excessively tired with memory and concentration, balance and weakness.

Part of the reason the fatigue is so bad is because when the brain is scarred, messages don't get through very well (if at all, in some cases) and so every normal function requires the body to work about 3 times harder than a normal person.

I only usually need help with babysitting to allow me rest for an hour or two each day. Actually I could do with more than that but can usually get by (survive) with just 1-2hrs sleep.

Today I was told that, because of my MS, I am a huge burden to everyone who I know.

While that hurt, it made me think practically about how I can best avoid being a burden. I can't bear that idea.
So any useful ideas would help.

Well, whoever told you that is no friend! I think we all need support, whether or not we have an illness or disability, and I'm sure you do your share of support, even if its just being a listening ear.

If the person who is babysitting finds it a "burden" then look elsewhere or pay for help. But please don't feel you are a "huge burden to everyone you know" because it's not true.

It was my husband

Totally agree with AP. I do a lot of work with carers and in general they feel privileged to be in a position to care for a loved one( with help/ respite/ financial support.

www.mssociety.org.uk/ would be a good starting point for you.

Me again- if you are in the UK both you and your husband sjouke be entitled to a separate assessment of your needs.
Your occupational therapist should be able to arrange this

I should probably explain more than that. He wanted to sleep as well, and wanted to have a sleep when I was about to go for one. It ended up with me not getting one, and us falling out over it, so I think he was possibly deliberately hurting me in the spur of the moment (I don't really feel much like asking him at the moment though).

But whether he meant it or not, it did get me thinking about putting in strategies in place to prevent being a burden on ANYONE that I know, much less those who I love (like my sons, my family etc).

How do you mean assessment for my needs? My need to rest would be taken seriously by anyone helping in a professional capacity?

www.nhs.uk/CarersDirect/guide/assessments/Pages/Communitycareassessments.aspx
Has general info on assessments but think MS Society would be your best starting point.

Thanks

I work with carers and people with long term illness. I think that one of the ways you could reduce the risk of feeling like you are a burden is to accept help from outside agencies if a time comes when you can't be on your own or your family want time to themselves. Some people I see will only accept help from family which can cause problems.
Also keep active socially and do things with friends and not just family.
Have you also thought about finances and sorting out a lasting power of attorney?
Sorry reading this back it sounds a bit practical so I also wanted to say how sorry I am that someone could even think of being so insensitive to you.

You make a good point - the confusing part is I've been trying to sort outside agencies to help, but he won't hear of it as "no one looks after your child like family would".

Apparently our DS's nursery preschool doesn't count because he 'knows' them - but he sticks to his guns when I point out that he only knows them because he was willing to place him in the care of (what was then at the time) strangers!

On its own I agree, but I think he's saying it's not in isolation. It seems that needing it every day is different and do he feels it's a burden.

I know what you mean about his attitude being the problem though, as he was ill for a few months this summer and I couldn't do enough for him, I really wanted to help as an act of support. I think that's what a partnership is all about!

My beautiful father has chronic progressive M.S, and whilst that has made me rethink my choices for my life, he is never a burden! I love my father, and despite all the changes that a person with M.S can go through (as I'm sure you're aware) he is still the man who made me, and if that means I take a few years out of my own life to make sure he is fine, fed and happy then so be it. It's a choice you make, if your husband can't support you as a husband, and an equal then get rid, again I'm sure you're aware that M.S symptoms can be exacerbated by stress. There is lots of support out there for sufferers and for families of sufferers, you'll never be alone.

I am really heartened to hear that, as a child with an MS parent, you don't see it as a burden. Part of my concern was that my children could learn to view me negatively as I deteriorate over the years - if they see their Dad view me that way. So thanks for that

I just wanted to give you an accurate account of what it's like in my house! Don't get me wrong though, there has been times where I've had huge tantrums and wished he was 'normal' but then again, I'm sure he and my lovely mother have done the same about me! :D I love my dad, he's amazing. I ran a 10K run in summer on behalf of the ms society, because they do an awful lot of good work in research, with people who have ms and their families! :) it's not all doom and gloom, your children will love and respect you as any other child with any other mother would, circumstances differ from family to family! :) it'll be okay x