Allthough am still waiting to get a diagnosis, on which has been a very long process…
My neighbours just don’t understand what we are going through as a Family. It’s the unknown part we don’t like.
So, when the kid’s went to bed, we left the wi dow open as it was a bit sticky and humid in bedroom. This was around 8pm. At 9.10pm, our second oldest Son came down crying, we thought oh, it’s maybe been a bad dream…Once we got him calmed down and talking!!! He then said “that the Neighbours were out the back, and they were slagging off my daddy” we then asked, why, what did they say? They were calling you a lazy bastard, and that there is nothing wrong with you!!!
We got my Son to go back to bed, still sobbing lightly, poor thing having to go through that…
Is this the way Society is now. No, respect for someone else’s private life.
Will go the now. Its now 10am and jow my son is refusing to go out in this bright spring morning. Just wish it would all end…
“Well I broke my ankle and I was fine within 6 weeks” - Well it’s been three years, two operations and operations for the rest of my life with it
“Just because your sick note says MS, I need a note from your neurologist” - On my first day back at work after diagnosis from the ASSistant manager
“If I was you, I’d want to feel hazy” - When I explained why I wasn’t drinking as why would I want to feel hazy when I’m having medication and trying so hard not to feel hazy
“You don’t need more than 8 hours sleep”
and then yesterday from my supervisor at uni:
“I really admire you”
I will be making sure I never forget that comment. We need to remember amongst all the crap people say, we are strong
I only told the people i care about and a couple of others i didn’t care for one bit (my old boss) My family are great about it but if anyone else has found out through gossip or other means,i couldn’t care less let them believe what they want to .The people i care for and care for me know the truth. My old boss actually tried to make it all about her as usual and was probably envious of all the medical attention i was getting as she tried to compare my illness with her age related problems.
I know some people feel better for telling people about their illness but i don’t,sometimes the more people know,the more they have a go!
Two ridiculous things in the last week - I’m a teacher. 1. ‘How can you be tired when you finish work at 3.20. Try putting in a full shift’ AAAAAARRRRRRGGH!!! Ridiculous on so many levels. 2.‘You can’t teach a class sitting down’… Erm… If they (the kids) respect you, and your lessons are good you can!
Most of mine have come from gp’s in the run up to diagnosis. The first one was “How do you expect to feel well when you are overweight and you smoke?” Needless to say I left that appointment very upset but I suppose I kind of need to thank her because it was the impetus I needed to lose weight and stop smoking. Only problem is even after doing both I didn’t feel any better. The next was " What do you want me to do? Poke a stick at it til I get an answer" Not much you can say to that one!! And finally from a consultant in general medicine ( because they couldn’t seem to work out which dept they needed to refer me to) " I don’t know what’s wrong with you. We might never know what it is. I suggest you go home and learn to live with it" Aaaargh I still get angry every time I think of them. You would think that members of the medical profession would at least have some sensitivity. Ann Marie
Not long after I was diagnosed I started Rebif. I was talking to a colleague (I thought he was a friend) about rebif, then he was talking about the cost of drugs like that. At the end of our conversation he looked me in the eye and said “people like you are the exact reason why euthanasia should be legal, a complete drain on NHS resources”. At the time I was too shocked and upset to really respond - I have since let him know what a narrow minded a*sehole he is.
My husband was having an affair with his secretary [personal assistant as they like to be called] she was desperately trying to get him to leave me for her. At the time he was working miles away - and l was trying to cope looking after my little girl - and also my mother who was very ill. This woman told me - over the phone - that my ‘disability’ was my problem and l should not expect others to have to suffer because of it. This was many years ago - and alas he is still here. And l know she eventually went to work for a Primary Care Team in Manchester. Where her insensitivity would come in handy!!!
@hayley894 o.0 I would have tried really hard not to punch him after that and probably failed would have said, “funny, I was thinking that about you actually”
I can understand my mother-in-law being relieved that whatever was up with me, the doctors didn’t think it was a brain tumour: my symptoms were similar to her mother’s, and her mother died of a brain tumour. So I share the sentiment that while MS is not good, it could be worse.
I haven’t had ‘but you look so well’ often enough for it irritate yet, I am still boosted by that.
I am doing the Cake Break, and I am going to take the booklet ‘What is MS?’ in to work and leave it in the kitchen in the hope it in the hope some of them read it so I don’t have to respond to some of these idiotic comments.
One of my bosses compared me to cancer and told me that there are people that are worse off than me.
Yes I get that but its not comforting when I’ve just been in tears at work coz it was all getting on top on me, and they were giving me next to no support.
Has anyone noticed that people dont ask how you are for fear you may tell them…one comment to me was…youve only bin dx two yrs and now you cant work jeeze, that was quick, Spinal and brain leisons will do that to a person. little do they no iv bin keeping the pain to myself for 6 yrs+
I know what you mean Paula, I’ve gone through some stuff recently work made me feel changing roles was a better option for me, since I’ve changed roles no one in management have asked me how I’m getting on. Not even my so called friends. Sorry one friend was good at asking, until he started seeing someone. I guess if they can’t see anything then they don’t think anything is wrong
has anyone else found that people sometimes say things along the lines of
… ‘oh, MS, yeah that’s that thing they call yuppy flu isn’t it? don’t doctors say that they don’t really know if that’s a real thing?!’
i must have heard this at least half a dozen times at this point. it just makes me want to howl at the people who’ve said it, that, apart from the fact that it would be bl00dy offensive if MS WAS chronic fatigue syndrome, to use the proper name, IT ISN’T, and there is absolutely no controversy about the existence of ms.
i just feel like i have to explain all the time why my body doesn’t work properly. or i’ve temporarily mislaid a word or two.
hells teeth i feel fed up… roll on that lottery win, eh?
In my back to work interview yesterday i had my Manager say to me “oh does MS affect your immune system”, and believe it or not they work in the medical profession. Think they were doubting the fact that i had been off with a virus, which had obviously affected the MS symptoms…Why don’t people get some knowledge of MS, before their mouth goes into gear?. Beggars Belief i think !!!
I only noticed this one today, and I can’t stand it: “You can’t be still tired” or “You only need 8 hours” I guess I’ve always been an excessive sleeper with fatigue but since diagnosis, now we know why. I wish I didn’t feel tired and could function on 8 hours a night, and every time someone says one of those comments, it is just rubbing it in :(.
would have said, “funny, I was thinking that about you actually”