Really had enough today, had an OH home visit to talk about my needs, the assessor “has a friend of a friend who has MS and she is ok” and I “look really well” Fed up with justifying my MS…I want to be as independent as possible, for as long as possible, I don’t want to give up work to be eligible, I have just reduced my hours again. I have lost ‘friends’ who said they would be there for me and my Father can’t even look at me since my diagnosis. Sorry for the pity party, it’s just one of those days X
That sounds like a crappy day. You’re entitled to a pity party. We all hate those people who ‘know someone’ who’s better or worse than us, doesn’t matter which. And I’m sure no-one (with or without MS) can stand people who tell us we ‘look well’. Its patronising and implies either that you look better than they expected, or that you look lousy but they need to give you a false compliment to make themselves feel better. Friends and/or family who can’t or won’t deal with your diagnosis aren’t worth your time and energy. Feel free to moan, shout and generally complain on here. Some days just suck all the positivity out of you. Hopefully tomorrow will be a better day.
yeah… humans can be idiots and the systems designed and put in place by them to manage the likes of us, can often be pitiful.
i can relate to much that you have said; not from my own version of this affliction, but from seeing how my mother had to go through it all when i was still growing up.
i have been blessed / burdened by both a forewarning of what might come, but also a foreboding of it. in either event, this has given me what i hope will end being the resilience to dispose of all those and that which fail to compliment my life’s path and aspirations.
i concluded long ago that no true altruism exists and that few if anyone can be truly relied upon.
but keep your chin up and do what satisfies your ambitions. no one in this life is guaranteed to feel tip top every day… you just gotta take the rough with the smooth.
I get where you’re coming from. I get the ‘You look really well.’ all the time. That’s because I do look really well and if I didn’t have MS, I would be really well, we all would. They just don’t get it. If they had MS, they would understand but they don’t. You have to bite your tongue and accept that they don’t .
I don’t really get the thing with your dad. My dad was brilliant, sorry. He was really ill himself and he died last year after being ill for ten years, so maybe he just understood what I was going through. Some people are not very good with showing their felling and us men are notoriously bad. So, maybe that’s what’s going on with your dad. I suppose you have to be patient, as with most things.
Sorry, you’re having such a crap day. I’m sure that it will pass and I’m things will look better soon. I hope it does.
No need for sorry Adrian, I don’t get my Dad either, it’s like it is happening to him, yet I’m lucky if we speak once a month and only if I ring. Thank you all for your kind comments, I live on my own I was ‘officially’ diagnosed last year on my birthday after 18 months of test. I was happy to have a diagnosis as I knew I wasn’t right but no one would believe me. I am still me and strong enough to live this life. I was to be part of the MS Enough campaign (I’m the one in the spotty top, no air brushing) it took 7 months to get a face to face assessment for PIP, which I was awarded after yet again justifying my MS and it being backed up by my Consultant, why would we lie about MS? I assumed that once diagnosed things would fall into place, and automatically be told where, when and how? Everything takes so long all we all want is to get on with our lives. Sometimes it feels like I’m just getting by while waiting to die.
Sounds like a crappy time. I can not understand your dads reaction, but I do know that my dad struggled to cope with my diagnosis. As the majority of people do not have any direct or indirect contact with MS so it is not that surprising that people don’t always think before speaking. It can be difficult to know how to react as the condition is incredibly varied and how people with MS feel about it is also varied and this can change frequently and rapidly.
There are times when I want people to know that I have “issues” and there are times I want no one to know that I am not the same as most people.
I hope that you feel less crappy soon.
Even my neuro does the: “You’re looking well!” thing. I try to take it as the compliment it’s undoubtedly meant to be, but you’d think they, of all people, would know you can’t judge the book by the cover.
I have to remember that they see absolutely all shades and extremes of MS, so: “You’re looking well!” may simply be neuro-speak for: “Well done, you still walked in without a stick!”
Hi sorry to hear how things are at the mo for you.
I`m surprised to hear how little help your OH has been.
I have used their service several times and found them to be very understanding, helpful and very knowledgable.
Today will pass…upwards and onwards, eh?