I wish that I DID have M&S Ben - then I would be able to take it back no questions asked!
My last manager (but 3?! - they swap them around a lot where I work) told me that he “knew about MS” because there were people in his family and at church who had it then, when discussing reasonable adjustments, sent an e-mail saying “I presume that all of the symptoms and effects of your MS will be over in less than 12 months”
My reply - a bit cruel I know - was to reply (with a copy to my union rep) asking him “So you are suggesting that a 1 way ticket to Switzerland is the appropriate reasonable adjustment for my disability? Because that is the only way that me MS will “be over” in less than 12 months OR AT ALL.”
Like 2blackcats I was told by a medical doctor that she did not believe I had MS and she told me to get a second opinion as I told her that my main symptom is pain. I had only seen her once as my usual GP was not available and when I next saw my GP he apologised profusely.
I have also had people get confused with ME, but I have ME as well anyway.
there are a whole bunch of MS jokes which play on the old advert for marks and spencer, one of which i was going to post here, but to fall in line with moderator requests (btw its not sick or upsetting as i wouldn’t forward it if it was), please pvt me if you want me to send it to you.
A person i considered to be a friend once said to me hello are you still pretending to be ill, needless to say she is not a friend anymore.
I also had a elderly woman living in the flat above me, she made my life hell with comments like how come you,re doing that (sitting on a stool putting plants into a large container) when you,re suposed to be ill, and the best one was that the only people she conciderd disabled were children adults couldnt possably be disabled.
strangely, the dr in question had already established the meds i took AND most of my pain meds were prescribed by the neurologist who had dx me with ms, which was in my medical record that was sitting right in front of her. basically she didn’t know a certain part of her anatomy from her elbow. she worked at the medical practise where i was a patient, i never ever went to her, and wouldn’t have if my leg fell off. i’m in another town now, phew.
i forgot about before i knew i had ms, a physio very kindly told me that i was ‘thinking of my pain like it was an old friend that i didn’t want to say goodbye to’. WHAT? just in my head?! well i should have just gone with that, far better than having ms, huh?! i think i must have been blanking that memory out for a while there.
You’ve just reminded me of my physio. I took an instant dislike to her when we were trying to deal with intractable (and still unresolved) foot pain I’ve been having. I explained diazepam helps, and the first thing she asked was: “Are you sure, or do you just think it does?”
(a) How would I know? All I have is my experience. I have no way of judging whether it’s real, or just something I think. But:
(b) Does it matter? If something helps, does it matter if it’s chemistry, or placebo effect, or how the heck it works? All I’m concerned about is end result. If I feel better, I’m not too fussed whether it’s real or psychological - all I care about is the result. My view is that if I think I feel better, then I do - how we got there is of secondary importance.
I thought they were supposed to be multi-disciplinary? She made it very obvious she’s anti-drugs, and thinks her discipline (physio) is the way forward. But if the patient is reporting anything that helps, I don’t think it’s for staff to start being judgmental and question whether they just imagined it.
I know diazepam helps! I’ve had painful feet all day - I just popped one about 20 minutes ago, and already I’m beginning to feel some long-awaited relief. If it’s not really doing anything, and all some sort of psychological conjuring trick, so be it. If I take a pill, and 20 minutes later, I feel better, I’m not going to sit here taunting myself with metaphysical questions about how I can be sure I’m not just imagining it. IF I’m imagining it, it’s working very well, and I’m satisfied.
‘are you sure, or do you just think it does’… what the hell?! i just read that and burst into loud laughter, you might as well have been seeking help from some weird cult member… it’s all in our mind, the lesions are forgeries, we faked our LP results. before ms i rarely took pills, now i take anything (prescribed) that will help. it took ages to find the right combination to alleviate at least some of my pain. why would a medical professional not know that might be just a teensy bit of a WRONG thing to say to someone dealing with chronic pain issues, the numpty. i couldn’t agree with you more about if it works, it works. like my loon of a physio, i think yours could do with a reality check.
They were home appointments. Both times, he was a good 15 minutes late and each time no apology. I can forgive bad time keeping, if an apology is given but it never occurred to him I would be offended.
I told him to leave. I had somewhere to be and wouldn’t need anymore appointments. He has a lot to learn!
And he left me in pain the first time-he had to go.
Ouch, ouch & ouch again! Reading some of this stuff reminds you how stupid people can be
Wendy, I’d be tempted to say I have an ‘autoimmune disorder’ and embellish as required
Tina, general physio’s have down in my estimation a lot of recent, the specialist ones are good tho.
It was an Osteopath that wrote to my GP to say I needed an MRI. When I was diagnosed I emailed the clinic to say how amazing she’d been and she called me the next day to say thank you but I had confirmed her absolute worst fears for me and said book in with her sometime, free of charge so we could have coffee and talk
Oh, and I know a sports/physio therapist who is definitely NOT a friend…but she was very knowledgeable but she once told me she didn’t pass the required exams to be an osteo, so I know they’re good!
I’ve not had too many stupid comments to be honest but I think that’s partially due to me being so wide-eyed over it myself. I knew virtually nothing about MS when I was diagnosed, I just knew it was ‘the serious one’ and by that I’m not saying ME isn’t serious either - I know someone with ME and I know how rotten it can be but it’s not normally permanently disabling.
She was THE MS physio, so I assume she’s not just a general physio they bring in one day a week or something!
I’m never going back to her - that did it for me. I didn’t even know how to answer. What reaction did she expect?
“Oh, now that you mention it, I’m sure I’ve been imagining it all the time, and the drugs don’t really help at all! Thanks so much for your insight!”? Bl**dy dumb question. She obviously thought I am so high as a kite on my (small) nightly dose of diazepam, that I just stopped caring about the pain, and didn’t notice they weren’t really addressing it.
But they do address it. I don’t just think so, I know so. I’m not floating on the ceiling or anything with them, so I’m sure I’m not just oblivious to pain, rather than obtaining real relief. But even supposing I was, what’s the difference? Don’t care about the pain any more, or really gone? Either works for me!
Unfortunately I spilt a hot cup of coffee on my leg that got infected. It caused the heal of my foot to become inflamed and to cut a long story short it ended after 9 months in hospital with my leg just below the knee being amputated because I caught MRSA in his dirty hospital.
The wonderful; outstanding bedside manner of the surgeon said to me “Never mind; you have been in a wheelchair for 25 years so you won’t notice much difference” yeh right! Let’s just say he did not like my reply.
most distressing thing was a work colleague who told me her neighbour had m.s and she went round each evening to hold a cigarette to his mouth so he could smoke as he was ‘paralysed from the neck down’
(the colleague was from Yorkshire which may explain her er ‘bluntness!’)