My worst was when I’d had MS about 5 years and I was still working. I had a patient, a man who’d had MS several years. He had new symptoms, and I’d done VERs, Somatosensory and Brain Stem Evoked Responses. These take over an hour, and require much concentration and moving about, changing electrodes, positions, equipment etc. I was pretty knackered, and said in conversation that I too had MS. He looked at me with apparent contempt, and said “Huh, you must have it very mildly then.” I was undecided whether to burst into tears or just turn up the stimulation! He made me feel a complete fraud, and that lasted for several years. What a git! I should have turned the stimulus up!
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I used to feel irritated when my neighbour asked me the umpteenth time “are you getting better?” despite my previous explanations that I have a chronic progressive condition. Ignorance is one thing but after repeated explanations my patience starts to wear thin.
M
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Most offensive thing was said by a Neurologist 5 years ago ‘Do you think it could all be in your head? I bet now I’ve said that, all your symptoms will go!’ Of course, doctor, I am just imagining that I am numb down one side and can’t walk properly (no, I didnt say that,I just burst into tears!). Another 5 years on I have been diagnosed, just that the lesions are on my spine and not in my head so didn’t show up on scan. Never felt so small in all my life, I was so embarrassed!
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thinking about it… has to be WELL YOU LOOK WELL… so i now say well I am not ill am I just NEUROLOGICALLY CHALLENGED, and boy that shuts them up. i was even thinking of having a tshirt made with that on lol. cos i aint ill I am probably healthier then most of them.
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Someone once laughed and said why are you walking like that, I replied I have a neurological condition and continued to stagger past him. Later in the day he approached me and said I had made him feel awful, I simply glared and said you are unbelievable!
Jan x
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Hi JJ, I only have lesions on my spine too. This was only dx`d last month, after 22 years and 16 previous neuros! My neuro at The Walton, Liverpool, said it is rare to have spinal MS. I am just the 2nd person he has seen with it. xxxxx
You made him feel awful! Priceless! xx
For a number of years, I worked with a man who was struggling to keep going in spite of serious gait issues. He was a furnace installer, and you wouldn’t believe the number of times we got complaints from customers telling us that one of our men was drunk on the job. Either the boss or I would have to explain that no, he just has MS.
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“Well, even if it gets really bad, at least you’ll still be the same person inside. You know, just like Stephen Hawking!” (said cheerfully by a jr doctor who was clumsily trying to get a spinal tap to work - she was poking the needle around in my back at the time)
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“Would you like to join me to attend a lecture about assisted suicide tomorrow?” (a friend’s response to hearing of my diagnosis which I’d just received the week before)
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“How much sooner will you die? Surely you won’t live as long as you would have otherwise!” (said with a grin by my horrible ex boss - seemingly savouring my impending demise??)
I could go on but these ones are my ‘favourites’
You know some real sweeties don’t you? What thoughtless muppets…
M
unbelievable all 3 and oh so callous!
Not that we’re competing here, but I think I have you all beat today. Mum took me on a necessary run this morning to fax 36 pages of documentation to the gov’t, and she let me know that she’s looking for a burial plot for me.
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“Oh my friends dad died of that” “Don’t tell anyone at work. Keep it a secret and say you were in hospital for something else” Also sick of hearing sarcastic “oh you’re feeling better then!!!” Whenever I’m out and having a good time, dancing etc. I hate it, makes me feel guilty and makes me want to punch the person saying it! I can suffer with bad fatigue, but when I’m feeling good I love a party!
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I recently got a blue badge and when I told a colleague she responded ‘do all your yolks turn up double’. Someone, I do not feel lucky to have MS and the need for a blue badge.
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LOL shouldnt laugh, my sisters mother in law had MS and lasted until she was over 85 lol. it was diabetes that got her. I think perhaps its the wrong disease your mums worried about. xx
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The one that hurt me the most and has stayed with me longest was a friend that was reluctant to use my blue badge to park in a blue badge bay because ‘what if there’s someone that really needs it?’ and then asked if I was ‘hamming it up because we’re in a disabled bay’ when I had to lift my right leg up with my hands to get it out of the car. I didn’t even say anything because I was so hurt. A year ago I was telling someone about it and they pointed out that all of that was on her and it was her problem not mine, it really helped!
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I can sympathise . The ms nurse in my area is so not understanding. . She made me feel I was making up how I felt…I am not going to see her again. It was causing me to feel more unwell. She should not be in the job.
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I can understand all the posts a send you all a gentle hug. I’ve had so many different things said that are so rude and ignorant- I must admit if feels no one will ever understand what it is really like having ms and all that can go with it…no matter what info you give them. The only friends I can relate to now have ms.
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I was at the Doctor’s the other week for something unrelated to MS, at the end of the appointment I happened to say I didn’t know where the MS had come from just unlucky I suppose. She replied ‘You’re not on any medication and you’re not doing too bad are you?’ Felt like saying come into my world for a week and then make your decision. The best one though was when I hadn’t been diagnosed long and I was speaking to someone who said ‘A friend of ours had MS, you need to keep fit, exercise and go swimming like him’. I said ‘So he’s quite mobile then?’ The reply was ‘No the MS affected his lungs’. Me ‘Oh, can’t do so much now then’. Reply ‘Once it hits your lungs that’s it he died’. That someone who I was talking to was my Brother-in-Law, needless to say he was crossed off the Christmas card list! Doesn’t matter how hard I try to forget that comment and I can forget quite a few things, that has stayed with me over the years. I have told my husband that when my time comes I want my ashes put into a firework and all the people I really want to annoy should be invited so when the rocket is lit and explodes high into the sky I can drop on their heads!
Hi, Igobsmacked, really I am! Particularly in reaction to thewould you like to join me to attend a suicide… Think Id have strangled him…mentally anyway! Some people!