Sensitive comments

Social impact of HMS - To include work, home and play. Communicating to friends and family/Lifestyle adjustments. Any other topic that seems to apply.

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Re: Sensitive comments

Postby madmum » Sat Jul 16, 2011 6:15 pm

My son has had a tough year in school but has done really well. I said well done on his achievements and he said i know you have problems so thanks for supporting me through the year. I was touched and proud of my young man.
Mum to son with hms,pain amplification,migraine,plantar fascitis,ibs.lactose intolerant,hayfever and numerous allergies. I have hms,arthritis,migraine,p.o.t.s,allergies,and others too numerous to mention. Acused of being mentally ill hence.....madmum.
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Re: Sensitive comments

Postby loosebones » Sun Jul 17, 2011 8:35 pm

this is more of a sensitive act but this weekend I was running a brownie pack holiday in order to get my pack holiday licence. The other leaders who went were really good at getting me to sit down when I went white and wobbly and I didn't have to ask them to do anything, they just carried on. It was a great success!
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
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Re: Sensitive comments

Postby Jorgie » Fri Nov 04, 2011 3:55 am

One of my friends looked it up. Actually looked it up, of his own volition, and now he says he understands better and is surprised I don't get more frustrated with people (or that was the gist of it).
I am... beyond words and I can't find an appropriate smilie.
"Can you sit down?" "No, miss. I can fall over on a chair, though."
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Re: Sensitive comments

Postby trekster » Sat Nov 05, 2011 5:30 am

There were some lovely people in Bristol the other day who offered to give me a hand with pushing my wheelchair :D :D

My brother is very supportive of my HMS and other stuff.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

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Re: Sensitive comments

Postby lollipop » Sun Nov 06, 2011 11:09 pm

I just love my nana. She's the only person who really understands how I feel and is always thinking about me. While shopping on Saturday she saw all-in-one fleece sleepsuits and thought that they might keep me warm enough to stop some of the hurting.
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Re: Sensitive comments

Postby trekster » Mon Nov 07, 2011 3:22 am

Not sure how to respond to 'oh dear you have been in the wars'? i know it is meant well but i feel a bit uncomfortable when they say it.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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Re: Sensitive comments

Postby Flora » Tue Nov 08, 2011 8:24 pm

I tend to have a set of standard responses to that question, with the answer depending on why they are asking, and my mood. If they are just nosy, they get the very vague Oh its a long term thing, if it is a staff member at work, who needs to know a bit about it, and what sort of help I need at times, they get the simplified version of the truth, with the emphasis on variability and the unpredictable nature of it. If they are a bored stranger, and I'm a bit grumpy, they get the full 5 word diagnosis, as fast as possible, with as many impressive sounding words as possible thrown in for good measure... :P
Oh, and drunk people being nosy are fair game for the interesting lies game - just how far can you go in a fake explanation of what is wrong. just remember that anything involving crocodiles is never believed, no matter how much alcohol is involved.....

My own sensitive comment is that a person I see from time to time, said to me that he didn't know how I manage to keep going at times, and had had a hard time with a broken ankle, mind you, he also said that I was probably too stubborn to stop.... :shifty:
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Re: Sensitive comments

Postby Superstottie » Tue Nov 08, 2011 11:20 pm

Flora, that made me laugh about the crocodiles - I might have to try that game sometime!!
Finally diagnosed March 2011 after 20 years of hypochondria!!!
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Re: Sensitive comments

Postby Rosie » Tue Nov 08, 2011 11:42 pm

Hi all

Flora - interesting comment about the broken ankle. It was only when my sister broke her foot and had to use a wheelchair that she understood a little of what I go through. Her comment was 'why do people talk to the person pushing the wheelchair and not me?'

Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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Re: Sensitive comments

Postby DeeNJai » Wed Nov 09, 2011 8:02 am

"Because they think are brains dont work and not are legs' The other one is when they are is
'Do they take sugar' or 'Take a seat' and I say which seat do you want me to take.
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Re: Sensitive comments

Postby sheppeyescapee » Thu Nov 24, 2011 1:10 pm

Saw my GP this morning and she was very understanding, said how much I've been struggling physically and emotionally. She was so understanding I nearly cried, and I don't cry often so that says something! My dr was great, wrote me a note for uni and gave me some stronger painkillers. It wasn't anything particular she said, but she was great :mrgreen:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Sensitive comments

Postby Kattykins » Thu Nov 24, 2011 2:21 pm

Aww - that makes such a difference doesn't it! I had a similar experience with a new rheumy I saw. I could have kissed her!

The magic thing for me was that, instead of sniggering and saying that if I had anything it was mild, she proclaimed that I was severe!!! Do you know I finally have hope I am going to get through this!
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Re: Sensitive comments

Postby trekster » Thu Dec 15, 2011 3:10 am

Being called a star for organising the xmas meal. Really pleased your doctor is being understanding sheepy.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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Re: Sensitive comments

Postby DeeNJai » Fri Dec 23, 2011 4:59 am

Hi
when I was going to Mcdonalds last night one of the cars waiting at the traffic light a car full of young lads shouted nice set of wheels it put a smile on my face. :D
Dee
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Re: Sensitive comments

Postby loosebones » Fri Dec 23, 2011 6:13 pm

I saw my GP the other day...a bit upset as no one at the hospital have been listening to me and I'm not getting anywhere or any help...she looked me straight in the eye, took me by the hands and said "I'm listening to you!" I nearly cried on her, just wanted to hug her!
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
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