I’ve been to the surgery this morning - not about my MS. For once I got a GP who actually wanted to talk to me as a person! He’s a locum so probably won’t stay long and he hasn’t been here long enough to be jaded with all the OAPs in the area …
Anyway, he asked how my MS was and what my main symptoms were at the moment. We discussed how I had barely been able to walk last year but am making real progress now.
It turns out he has a friend with MS. He also doesn’t know as much as he thinks he does. He asked if I was on ‘the injections’. I said I had been on Rebif for 4 years but had switched to a daily tablet because the injections had stopped working for me last year. He said ‘Don’t you have the daily injections?’ I said, ‘No, I injected three times a week but that drug stopped working which is why I’m now on a different drug.’ So he told me his friend was on daily injections and had gone from being almost paralysed and in a wheelchair to being better and able to walk again!! I didn’t have the time or the energy to begin explaining about RRMS … And this from a GP. Sigh
“But you look fine!” Actually love I am hanging on by my very last bit of willpower to not a) fall over b) cry c) thump you so hard you wished you were the one in the wheelchair!!
Or “oh look you have got ANOTHER new car wish I could have one like that” Be my guest love - Oh I couldn’t drive that - no dear you would need a brain!!
I’ve heard them all but there like water of a ducks back.
Only once did someone say something that bugged me I didn’t say anything at the time I wish I had but It took a while to set in I couldn’t believe the person said it, I was down at the shop a couple of years ago there was a young 19 year old fella that committed suicide and his sister worked in the shop he’d only done it the day before I was saying to the shop keeper that it was so sad to hear he’d done it a lovely healthy young fella and the shop keeper said to me it was a shook him doing that and he’d understand if it was me because I have MS I walked out of the shop in shook I couldn’t belive what he’d said.
Sorry to bring this one up again guys, but I just remembered another one …
After explainings my symptoms to a work colleage, she said to me “Ahhh, the MS Hug … that sounds nice!”. Who gave it this stupid, unempathetic name? It gives the uneducated completely the wrong impression!
My mum last time I saw her - ‘Why did you come out?!? It’s raining and you’re not well, you need to be indoors and resting’.
My mum a few months ago - ‘it’s far too sunny out, go home and rest, heat isn’t good for you, it’ll set you off’
I wasn’t having a relapse either of these times nor was I unwell. Apparently I am ill all the time and cannot leave the house all all, come rain or sun. I shake my head in despair sometimes at my mum. Love her to bits but she doesn’t really understand MS or that I am able to lead a (relatively) normal life!
Colleague at work - (whispering) ‘are you ok? are you a bit funny today? you’re walking funny and look like you haven’t slept in days’ Trying to politely ask if I was having a relapse which was appreciated since not everyone at work knows about me. His choice of words on the other hand, not appreciated.
Worst one so far for me - Fatigue gets me really badly and sometimes I cannot stand up for long periods of time. I have to get a seat on my train journey home because I won’t make it otherwise. I was going to faint or collapse onetime and decided to ask a young guy if he wouldnt mind letting me sit down as there were no seats available. He looked up at me and said ‘I didn’t realise you were pregnant. You should get a baby on board badge’ Honestly, albeit stupidly, I said ‘Oh I’m not pregnant, I just really need to sit down’ He responds (still sitting down) ‘Oh, well then I don’t see why I should give you my seat, you’re capable of standing up, the end of the line is only a few more stops’ I try to exaplin to him that I have MS and am suffering from fatigue and need a seat - I’m not just being lazy, I need a seat more than I need to breathe! He tells me that he doesn’t believe me because MS means you are confined to a wheelchair. I blew my lid, I’m stilll standing and really struggling now and am starting to feel dizzy. With my last ounce of strength, I told him all about MS and my dx and told him to be more respectful of other people because you don’t always know what it going on. Long story short, someone else got up and gave me their seat (half way through my rant to this guy). What made me the angriest was his assumption on MS. It is often ‘invisible’ and just because I don’t show symptoms outwardly, doesn’t mean I’m not suffering!
Grrr!! He made me so mad - still makes me mad thinking about it now!
Crikey hun…that train journey sounds truly horrendous. It probably only lasted a brief time, but reading it made it sound as if it went on for ages. What a rude and ignorant man! Pregnant indeed! Take a folding stick with you and if you see him again, trip him up put the stick away!
pollx - yeah the ‘argument’ if you can call it that only lasted a couple of minutes (although felt like a lot longer!) Haha, I haven’t seen him again but think I am going to use your idea of a folding stick to trip him up with!
The one i am really fed up of hearing is “you must stay positive”. Now don’t get me wrong i’m not a negative person in any way, but remaining positive all the time is a bit hard when you fee like cr*p.
And the usual…“you look so well, i never would have guessed you had MS”…i really want to reply “No you wouldn’t know, because i haven’t found a t-shirt printed with my illness yet”.
Why do people think they can have an opinion and voice it where and when they want?