My voice is now quite noticeably affected by this condition, ever full of surprises. Dysarthria, it’s called. Yesterday we went for lunch to friends 30 miles away, all very nice except we were based in the garden in baking heat, with everyone except me getting some shade from the umbrella. Plus friends were smoking - result, I could hardly get a word out, as soon as a whiff of it reached me. Why am I so feeble about saying please don’t smoke, or please let me sit in the shade?? Trying to pretend I am NORMAL, I guess, and not admitting that I can’t deal with discomfort. Actually, why should I ‘deal’ with it?? Final straw was the loo, impossibly low, but thankfully managed to haul myself up with the sink taps! So glad to get home, though I enjoyed bits.
That sounds very familiar Lynda.
I have to be quite clear and assertive about what I need. A lot of people just don’t realise. I used to be tolerant and take it but now it’s a case of survival. We should be able to enjoy ourselves. Sometimes we have to carve our own path.
Best wishes, Steve
If I am going to an outdoor event and I may be sitting in the sun, I take a brolly…a golf one, so I make sure I can sit in the shade!
Smokers…mmm, as my hubby is a smoker, that one is a bit more difficult.
But if you know these folk well enough, why arent they more considerate? I dunno!
pollx
As Steve said, a lot of people just don’t realise and won’t until you say something. If you don’t speak up, how can they know the smoke/sun/heat affects you? I’m sure if you’d spoken out these friends would have rallied round and acted accordingly. Speak up for yourself. No good pretending you’re “normal” 
Folk with ms are just a different kind of normal!! :-)
I wish! These friends are not the most sensitive! After croaking ‘sorry, I’m afraid the smoke’s getting to me’ they either didn’t hear or didn’t choose to hear, and kept on puffing! But you’re right, I should have been more assertive and less of a martyr!
Yep, good for you! Next time a smiley “could you just move over there while you’re smoking? I really have a lot of trouble with it”. If that doesn’t work I’d be reconsidering the amount of their invitations I’d be accepting. :-):-)
You probably were brought up to not say anything like me. At my grand âge I still find it difficult being assertive. I end up feeling I have been rude. But slowly slowly I am getting there. But now I am called aggressive!!!So you really can’t win. As Steve says. We have to carve our own path. I really didn’t think this disease “would get me”. Not that I have ever been in denial. Or scared. It is just difficult to imagine yourself getting worse . Well. Here I am much worse. Quite rapidly after many years of plateau. It really takes the wind out of yr sails eh? I have always been very outgoing. Found it easy making friends. A people person.Now. I can see my life changing drastically. I went to a party this afternoon. So very very hard. A combination of heat, cog fog, too many people, too much noise etc.etc. I can easily see me either not going out so much or just sitting quietly in the corner at these events. I find that very sad. I can’t change it though so I will just have to adapt. Carve my own path. Hope you are all doing OK. Night Anne X
Anne. I get accused of being aggressive. But I always argue that I have to be clear about what I think or want. Then I get to;d that my illness doesn’t give me the right to be rude. F****** **ll.
Best wishes. x
I can admit that being fairly flexible before diagnosis has helped me tremendously - not pleasant but I’ve managed to get up from the loo by putting my palms on the floor so I can push my tush up and they hands on the walls to get up
Tell your friends what you need, you have to look out for number one I went to my sister’s on Boxing day last year, I won’t be going there again in a hurry. All floor surfaces had me slipping/sliding apart from huge rug in the living room which is so thick I tripped stepping onto it & the stairs. I can cope with stairs on occasion if needed but it’s not dignified (crawl up & come down on my bottom).
Sonia x
Sorry Sonia but you have made me smile. Your account of going up and down stairs. My Mum has to do that too. Not far behind you !!
Just writen a massive missive then deleted it instead of posting. Damn it. Too tired to repeat - too hot to sleep. Night Anne X
You are all making me smile! Yup, don’t we all know about stairs and loos, as well as treacherous rugs, which I imagine having a malignant life of their own, lying there quietly then suddenly rearing up to grab your ankle! Well, on Saturday we are going to a friend’s son’s wedding in London, so we shall see what that brings. The venue is all accessible, but we know what that means…Intend to leave once the ceilidh dancing starts, which I used to love - OH glad he has the excuse now for not being dragged to his feet for the Eightsome Reel!
Glad to make someone smile, the embarrassing stuff we just have to deal with and if I can help others feel not so bad then it’s worth sharing
Sonia x