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Now I Know….!!!!…..
Have You Ever Wondered how people will treat you as your condition progresses ?
Now I Know !Two months ago my only really frequent visitor dropped a bombshell that she was not coming
round anymore because I might fall and hurt her or her dogs. Since then everone seems to
have given me a wide berth. I have been worrying what happened?I am shocked to find she told eveyone that I had MS. Now I know how people will
treat me as my condition progresses!!!!! Now in the snow I have not dared to go
outside the door for six days. There is virgin snow on my path all the neighbours
must see no one has been in or out (postie puts letters in special box). If they
know there is someone with MS why haven’t they checked? I am fine, I have ten
days or food in freezer with bread, milk and cheese all frozen. But they do not
know that.The input I want from listers. Is this a good thing to find out about “fairweather
friends”? I used to tell people I wanted to stay here because of the good neighbours.
Or is it just bad bad bad.I am reminded of one omy father’s jokes ; – “You would shut your eyes rather than
see me struggle”"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Now I Know….!!!!…..I’m afraid these days its “everyone for themselves” :!: So much for David Camerons Big Society where everyone helps each other!
Better you fing out now who your friends really are now rather than in a crisis.
Isn’t it a shame though that society today is like this “buggar you jack, I’m ok”
Re: Now I Know….!!!!…..@vicki wrote:
So much for David Camerons Big Society
Posh language for getting the gullible to do the work the government cannot pay employees/contractors to do.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Now I Know….!!!!…..People these days generally are only interested in whats going on in their own lives unfortunately. Good thing you found out what your so called friend is like now rather than later. I find if people don’t inderstand something they steer clear, such as health problems. Complete ignorance which I have discovered as the single parent of a son with undiagnosed form of MD. A vacant expression comes to the faces of parents when I say what his problems are, real converstion killer. He just doesn’t get invited to their houses or to birthday parties any more. He is popular and his condition doesn’t bother his friends at all, just their pathetic parents.
If people took ten minutes to just Google the condition maybe they would see it is not contagious!
I do understand completly how you feel, pretty hurtful isn’t it.Re: Now I Know….!!!!…..I live alone in a bungalow, if it wasn’t for my brother coming round every morning & evening to walk Gwen I’d not see another human during the week. It’s at weekends maybe my family or friends will pop round. I know they’d come round if I asked.
Give you an example, my bungalow is part of four that are clustered together, all four front doors face one another alternatively, thus leaving a courtyard in the middle. My neighbours adult grandsons were outside on Tuesday morning & cleared all the snow & salted the paths from the garden gate to his front door/ramp, not to mine or the other lady neighbours. The snow on my ramp has pushed into the grate where my brother & the postman have walked on it & now that’s all frozen solid. No way I could get out even if I wanted. So, I know exactly how you feel Taungfox
Re: Now I Know….!!!!…..Thanks the support listers.
You are right the snow situation means many of us must not
risk going out. Never did the Christmas food shoping, I will
have a very healthy beef stew on Xmas day and really enjoy it.I was going to ask a supplementary question, if I should
give them my correct diagnosis. I think you have already
helped me on that. Good I know the real situation sooner
rather than later. I will though be pleased to help them when they
need it and not just to make a point.I will ask them if they watch CASUALTY !
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Now I Know….!!!!…..I will ask them if they watch CASUALTY !
wasn’t to fussed on the Casualty story line with the guy with MD. For weeks theyve been running with the agressive husband line. dont know if it was just his bad acting but us the audience should have seen his symptons grow week by week. instead we got angry over bearing guy. then instant ER diagnosis and then back to hitting his wife. dont think we will get much sympathy for our condition or any life limiting condition as he seemed to be fabricating some of his symptons to punish his wife and the agression out did the MD.
Think it could scare some able bodies partners whos partners or loved ones are at the start of the MD diagnosis road.the story line they did with the teenage boy in the wheelchair was much better, may be wrong but I think he had MD too.
Re: Now I Know….!!!!…..I think that it’s better to know how reliable your friends are before you really need them. It hurts to discover that someone you like having around lacks the depth of character to help you out, even if it is just with a visit, but the greater your need the greater your disappointment when they let you down.
I think in part we can be our own worst enemies, I don’t like to be treated different even though I clearly am and I think that this does put off some people who don’t know me very well from offering assistance. In that respect honesty, as painful as it is, can be the best policy.
Re: Now I Know….!!!!…..So I presume, taungfox, you in fact have MD not MS?
I work as a personal care attendant to people with disabilities, as well as being the girlfriend of a man with MD.
Last year, a new client came into our area, and I went to visit him and view his service before he moved into our area. He asked me if I knew what he ‘had’ to which I had to respond ‘no’. He told me ‘I have muscular dystrophy, do you know what that is?’ – I looked at him and said “Oh yes, of course I know what it is. My boyfriend has MD.. which type do you have? He has LGMD”. He told me he has BMD and we started chatting and still get along really well..
Anyway, a couple of weeks later I was talking to a colleague (who used to be a registered nurse mind you) who asked me “have you been to the new client who has MS?” – I said “Oh, no, I haven’t been to anyone with MS.. where does he live?” – she quoted the street that the client with MD lives in, and I said “Oh you mean *****??” – “Yes, him” – “Oh, he doesn’t have MS, he has MD – they’re different conditions”. She argued with me a little, saying that they were the same thing, but I eventually convinced her that they had different causes and symptoms and were hence, different conditions!
But MS sure gets a lot more exposure here.
Re: Now I Know….!!!!…..Excuse my ignorance if I am misinformed but, MS attacks the nervous system & is much more painful . MD sufferers are bound by chronic & progressive muscle wasting symptoms/conditions. Neither wins in an argument
Re: Now I Know….!!!!…..as for a nurse mixing the 2 conditions up, I only the other month had a hospital doctor question me and then quiz my mother as he claimed females cant get MD.
Re: Now I Know….!!!!…..Nothing suprises me anymore!
I’m so sorry about your friend, but I guess most of us have unfortunately been in the same situation! It’s the same I fear flots lot of rare conditions and for the elderly. Joe public are a selfish ignorant lot and the medical profession aren’t much better! After all they are only human!
I think honesty is the best policy as at least you will be at peace with yourself. Ask your so called friend why she is behaving so? Explain that such deseases and others as equally unpleasant can strike ANYONE at anytime down. So they should all be more understanding and count their blessings!
As for MS being more painfull yes you are misinformed woogy. As in MD, MS is highly variable some patients experience pain with numbness etc & some do not! As do some kinds of MD! Google it! Lol!If anyone lives near me & would like a visit just PM me! I live near Redditch West Midlands I am walking better for now and would be more than happy to meet up! Help out I drive a 4×4 so the snow won’t stop ME! X
if I were you all I would print these pages and send them to your MP!Happy New Year Everyone! Xxx
Re: Now I Know….!!!!…..It just shows how MD sufferers can be misunderstood, not
taken seriously and of course misdiagnosed for years (12
years in my case).Recently the elderly locum at my GP surgery admitted he was
fascinated by such a rare condition and had spent quite a time
read my notes before calling me in. He asked if he could look
at my gammy ahnds / arms even though I was only there
about my stomach.Ever felf like a guinea pig?
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Now I Know….!!!!…..@taungfox wrote:
Ever felf like a guinea pig?
Yes I know exactly what you mean taungfox! Quite often when i’m in hospital with paralysis. I’ll get medical students coming in to examine me and take my history because i’m ‘an interesting case’. Once I had a nurse come in and say to me that she wanted to just meet me and say hi because she’d heard someone was coming in with periodic paralysis and she’d never seen a case of it before and she was fascinated! Sometimes it feels like I’m a rare exhibit in a zoo or something, they need to remember that we’re actual people too, not just a rare disease!
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