when people come to my house they usually whinge about it being too cold. sometimes i relent and let them put the heatting on, never above 18, thats my ultimate temp, anything more and i wilt. my sis came at the weekend and did her usual " good god its freezing in here". yet again i explained that i can’t stand the heat, it makes me so weak and agitated.
her reply left me absolutely gob smacked and im still fuming!
" god, i wish i’d got what you have. i would save a fortune on my heating"
Golly, I’m about to surprise myself by being a wee bit confrontational. Many people on here have been diagnosed as having ME as well as MS; no doubt many of us will know people who have or have had ME. People who have it are not frauds who simply enjoy a good kip. My wife had it when she was a teenager, and she still has problems with fatigue. She hates it, and would dearly love to never need to sleep during the day.
Sorry, I hope I’ve not offended you. I just obviously felt the need to say something in defence of those who have ME.
my sister in law,when i told her i had been in bed for 10 weeks,with a severe relapse came out with,‘oh i couldnt do with having MS because i just hate being ill.and cant stay in bed for anything’ !!!
May I be as brave to suggest that we are perhaps a tad sensitive? I know it can be hurtful and can leave us speechless-have been on the receiving end many a time! But these folk are ignorant (in the true sense of the word) and I tend to see it as an opportunity to educate them. We dont understand this pesky illness most of the time so I certainly wouldnt expect someone else to understand!
Not intended to upset-just offering another viewpoint.
Must say Zeld I get very fed up with the attitude of family at times. I know they are ‘ignorant’ in all senses of the word but I feel that they are tired of my MS now and think that I should stop having symptoms as it puts them out when I have to leave early when attending family functions.
One sentence that haunts me is not about MS, it was said by a close member of my family on the suicide of my brother-in-law. “He didn’t seem depressed to me, when I saw him he looked good and said he was fine!”
My most jaw dropping moment was at the bottle shop when I stumbled in on my crutches and the publican in all seriousness refused to sell me a bottle of wine as “It is against the law to sell alcohol to intoxicated persons”!!!
FFS, do I have to wear my Blue Badge on my forehead as well as use my crutches?
My boss saw me stumbling one day and said “you should take more water with it”. I work for the university medical school, and he is a nurse. He is well aware of my condition and the fact that my husband was an alcoholic who drank himself to death. Yet I still had to explain in small words why that particular statement offended me. Normally I’m very laid back and silly comments don’t bother me, but that one hit a nerve.
Also, during a discussion with an OH Dr about my application for medical retirement, not only did she say that she thought my problems were down to anxiety and depression, she also said that she thought I might get better (I’m hoping that she meant that I might recover from this current relapse and not the entire thing), and that I might meet someone (in the context of me running myself ragged trying to do everything on my own). Some very stupid, naive things to say to me - luckily I’m bright enough to know when to hold my tongue, otherwise she would have been on the receiving end of some very sarcastic comments, which would not have helped.
Sometimes well meant, or silly throwaway comments hit harder than they should. That’s just life.
One of my friends toldme that she had read the best thing for ms is to go out and walk my dogs. All these years they have been looking for a cure and it’s that simple! Not ms but my husband lost 3 stone over 4 months the he bumped into someone at work who he hadn’t seen for ages and his first words were bloody he’ll have you got aids. Charming!
l have a dear friend staying- he was knocked down by a scooter whilst on holiday in Thailand - he has smashed hip/pelvis and is unable to do much for himself at the moment. As l have stairlift/wetroom and a zimmer - we were the best place for his son to bring him to. This is the first time he has been ‘incapacitated’ - and it has hit him hard. Especially, when l empty the ‘pee’ bottle that he uses at night. Yesterday, we did discuss the problems of disabilities - the hidden problems - like incontinence - or just not physically managing to get to the loo in time. Also, after being in a hot country for 3months -coming back here - sunny July - he is frozen. l have to light the wood-burner - and cover him up in a blanket. l am sweltering!!! And he has taken over charge of the tv remote. Did make him watch Eastenders last night - but l didn’t like to say l watched Corrie as well. Bless him.
So - l do think that folk do not understand our difficuties -unless - unfortunately they are put in the same position.
He did remark - when seeing me stumble about - ‘Jesus - you walk worst then me!!’
Golly, I’m about to surprise myself by being a wee bit confrontational. Many people on here have been diagnosed as having ME as well as MS; no doubt many of us will know people who have or have had ME. People who have it are not frauds who simply enjoy a good kip. My wife had it when she was a teenager, and she still has problems with fatigue. She hates it, and would dearly love to never need to sleep during the day.
Sorry, I hope I’ve not offended you. I just obviously felt the need to say something in defence of those who have ME.
Dan
[/quote] lol to be honest my brothers girl freind has ME and i do understand its a genuine condition but in comparisom to MS its a walk in the park and it realy grates me when people try to compair them to each other… And no you didnt offend dont know whats wrong with me but im on a real high at the moment so i dont think any one could offend me.
It was raining outside and I was told I am so lucky to be able to park next to the door! So gobsmacked did not say anything back just thought how stupid she was
Folk often say to me as I pass them on my scooter or wheelie, ``I could do with one of those. Ive never yet said, Well hang on while I get off it and you can borrow it.......but Id have to break your legs first! Do you think thats going a bit too far?
Reminds me of my recent unpleasant encounter with the moron who came to read the gas meter. he asked what was wrong with me and I said MS. He replied with Oh I have a mate with ME, he cant be bothered to get off his arse either!` Unbelievable.