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 Itigo » Wed Nov 10, 2010 9:18 am

This was headed for the insensitive comments section but my DH redeemed himself at the 11th hour!

I have given up mentioning any aches and pains at the moment , to anyone - DH, physio etc. - struggling at the moment with how I feel about it all. I think I'm trying to ignore it to check if it is in my head.......I see the rheumy in 2 weeks and know he'll say there's nothing in my bloods or scans to be causing pain so psych it must be. However, I have started at an osteopath - haven't even mentioned it to my husband as I'm paying out of my own wages. He says there are several issues. 2nd appt Monday and he released my upper back quite well. Yesterday though, started with lower back pain - the one thing I don't usually suffer from. Has got worse today but determined not to fuss I haven't phoned him to let him know, I will in the morning. Told hubby that it was a bit sore then was tidying something I'd dropped (my hand just let go). Winced when I got up but it wasn't too painful so I just said "No, it's actually ok." to which my DH replied "Oh not this s&*$ again...." and went for a shower.

When he came out, he gave me a big kiss, told me to go in the spa bath on my own, he'd do the kids' tea and their bedtimes and I could relax with some wine as I was sore and had had a hard day! Such a surprise. He just told me that when I tell him about what hurts he shuts down but when I don't really mention it he wants to help more as I must be sore...........somewhat twisted logic but it was a very welcome gesture.

So hooray for lovely husbands tonight and cheers! :D
Diagnosed late 2010 HMS after years of trying to find out why my body feels like a 90 year old's! Suspected Coeliac Disease - repeat biopsy due November 2011.
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Re: Sensitive comments

Postby meggy.nut » Thu Nov 11, 2010 5:07 am

This was more wonderful actions...
Yesterday I was leaving my physical therapy and was having a lot of trouble walking. At one point I was leaning against the wall with my eyes closed trying to get the pain under control. This is when a lady came by and asked if I was okay or dizzy. I told her it was just my bad ankle, and was resting a minute. She then asked if she could get me anything - so sweet! I declined and hobbled to the elevator. She caught up with me at the elevator after picking up her charge. After we reached the lobby she got to the outside doors, turned back, and asked me if I needed a ride to my car!!! :clap:
My hubby was picking me up, so I didn't need a ride. But it was so nice and unexpected especially from a complete stranger; it just made my day. :D
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Re: Sensitive comments

Postby Eloise » Thu Nov 11, 2010 1:55 pm

I had a really sweet comment from my pilates tutor yesterday. I normally go into each session and say everything that has caused me problems for the previous week so she can tailor the session to do all the right things without damaging anything further. So at the end of last nights session I said that next week I am due to have my flu jab that morning. So I said - "well it will give me something else to moan about" to which she replied - "well if anyone has reason to moan - then you have".

She has been fantastic and I thank her for keeping me walking :) and it is great that we can have some light hearted banter with my stupid joints but she really does get how bad the pain is.
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Re: Sensitive comments

Postby Purplesheep » Mon Mar 07, 2011 12:55 am

Thought I would revive this thread - I also had a very nice comment from my Pilates tutor this evening. Tonight, I sat out for about half the session, as there were so many exercises I couldn't/shouldn't be doing, and I got a bit annoyed and bored not having anything to do for so long. I am usually the only person who sits out for things, which can feel a bit awkward and I think I do get quite a few looks from people - the "What's wrong with her?" kind of looks.

I think the Pilates teacher thinks I'm a bit strange, so he usually doesn't talk to me much. But after the session, he apologised for the much of the session being so hard and said he can't always accommodate everyone. I told him I didn't mind and he suggested I should just do other exercises that I know I can do, so I don't spend so much time just sitting there. Then he said "Don't worry about just being different". It was the nicest thing someone's said to me for quite a while, and exactly what I needed! Hopefully it'll make me less paranoid about people staring at me (not that I care what they think anyway), and it's encouraged me try just to do my own thing in the future. Yay for sensitive Pilates teachers 8)
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Re: Sensitive comments

Postby Blaadyblah » Sat Apr 02, 2011 12:29 pm

All hail my awesome neighbour who recently spotted I'd not been out and came by to check I was ok and see if I needed anything from the shops. :D
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Re: Sensitive comments

Postby juliepops » Sat Apr 02, 2011 11:03 pm

Having been unable to work for the last 15mths I'm finding being at home very frustrating as I can see all the things that need doing which I am unable to. My poor husband does as much as he can but has his elderly father, who has dementia, to look out for too as well as a demanding fulltime job.
Some of my work colleagues decided to come and give my garden a makeover so when I sit looking out of the patio doors I have a wonderfully tidy and beautiful garden to look at !!! Amazingly thoughtful gesture which will keep giving pleasure for a long time.
Another friend kept saying " if there's anything I can do to help just call me" "Ok" I said - but never did- probably out of pride !. Eventually she popped round and said she wouldn't take no for an answer. Now she regularly pops in to help with little jobs I can't manage and we use the opportunity for a cuppa and a chat too. I am learning that if someone wants to help out then I shouldn't deny them the opportunity because they might just be desperate to do something to make life easier for you. These are the sort of friendships that grow stronger.

There are some wonderful people out there just waiting to support us through the tough times. Cherish them :kiss: :kiss:
HMS(diagnosed 2005), asthma, IBS, fibromyalgia/ME - EDS3 and scoliosis diagnosed 2011
Son (20) hypermobile & recently diagnosed with Dyspraxia
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Re: Sensitive comments

Postby RiffRaff » Tue Apr 12, 2011 7:34 pm

It's been very nice reading this thread. I suppose that most people who make thoughtful, intelligent and kind comments of the type mentioned in this thread have no idea how much their words mean. Years ago, someone on my uni course asked me about why I wasn't able to go out clubbing any more. When I explained my health problems, he replied with understanding, "wow, what a head f***"! This may not sound sensitive, but he was absolutely right, and he'd spotted something about the difficulty and complexity of my situation that had failed to occur to most of my friends. Although we didn't stay in touch after uni, I sometimes think I'd like to email him, just to tell him that I appreciated this comment although I'm sure he'd forgotten about it two minutes after uttering it! One of my friends who was kind and sensitive about my health died suddenly last year, and I'm glad that I had told her that I recognised and appreciated the way she responded to my health problems.
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Re: Sensitive comments

Postby sueiz » Thu Jun 09, 2011 4:20 pm

having just posted a rant in the opposite thread to this, time to redress the balance! :P

I went away over the last bank holiday to a Christian festival; there was a fanatstic prayer room with all sorts of interactive and meditational stuff in it, but wasn't suitable to take my mobility scooter into. My lovely friend Ann, without prompting, arranged to meet me there & took me round, and carried a chair so I could sit down at each mini-room "station" and then handed me the various bits & bobs, even helping me to take off my sock & shoes so I could walk on the sand (the theme was "exodus" so was about journeying in the desert) and then washing and cleaning my feet afterwards before replacing my socks and shoes, and being on hand with the tissues when the inevitable tears started! :cry: :shifty:

What a wonderful, caring, supportive lady she is! :angel:
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Re: Sensitive comments

Postby paw » Mon Jun 13, 2011 7:51 pm

Sueiz that is a nice friend. Maybe you can return the kindness with cake and tea sometime. It could be at your house or out at a shop if that works better. I know when I was helping Grandma she didn't want the giving to all be from me to her. We eventually settled on taking turns buying lunch on days we went out on her errands and appointments.
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Re: Sensitive comments

Postby sueiz » Wed Jun 15, 2011 8:06 pm

it's something we do regularly anyway. but yes, it's important to let these angels in our midst know we've spotted them and love them all the more for the fact they don't expect anything in return!

Reminds me of a film I saw called "pay it forward". the boy-hero of the film decided to act out a theory he had. He carried out three big "random acts of kindness" but instead of letting the recipients pay him back, he made them "pay it forward" - find 3 deserving cases to do the same, etc etc.

Now what a wonderful world that would be - and pretty quickly too!
Psalm 139; Isaiah 40:28-31 & 43:1-4
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Re: Sensitive comments

Postby Kattykins » Thu Jun 16, 2011 9:00 am

We went to Crich Tram Museum yesterday - me in my wheelchair! My husband is mad keen on such things. I couldn't get onto the tram and he wouldn't go without me but as soon as they saw me they laid on a special tram with a chair lift. We were the only ones on this tram and Kat had an Inspector with him explaining all about the trams! I felt like royalty. At the end of it I got a certificate for riding on the Access tram and so supporting the museum!

Instead of being treated as a problem, I was treated as someone special! How cool was that??

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Re: Sensitive comments

Postby paw » Sun Jun 19, 2011 11:07 pm

Kattykins they know how to treat "special people" there. I would click the like button if they had them on this site. :D
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Re: Sensitive comments

Postby Kattykins » Mon Jun 20, 2011 8:48 am

Do you know, I am still glowing over that! If only people realised how much these little kindnesses mean!
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Re: Sensitive comments

Postby alice-emma-louise » Sun Jun 26, 2011 12:10 am

Not so much a sensitive comment but some wonderfully sensitive actions...

Today I've been having a really bad day - well in fact it's been a really bad couple of weeks but that's not for this thread. I've been walking with an obvious hobble and very slowly.

When crossing the road and the lights changed mid way through my crossing - usually drivers (especially of the taxi variety) make their impatience known and force you to run but even the taxi driver held back to allow me to finish crossing slowly :) this made me happy, sure if you're still crossing and the lights are amber they shouldn't be moving forwards anyway but that's never going to happen isn't it so I'll take the smaller victory!

Also - my fella has been wonderfully sensitive doing all the things I've asked him to but also noticing my difficulties (even down to noticing my struggling to reach across for a tissue) which are usually things he struggles to think of - he forgets that HMS doesn't only impair walking but also very simple activities that you'd not consider as being impacted unless you've suffered.

My fella's step dad also picked us up from the supermarket, did the dishes and brought the remote controls for the tele over to my side and easily in reach having noticed even sitting up or leaning forwards was difficult which was really lovely as he really struggles to understand the HMS :)

After having such a terrible day joints wise - I am feeling pretty positive with the responses I've had and feel I can be more open about my difficulties in the future :)

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Re: Sensitive comments

Postby alice-emma-louise » Fri Jul 01, 2011 7:08 pm

And another sensitive comment.

Today, I damaged my ankle and have been wearing a grip. My supervisor at the lab that I'm working at for a few weeks over the summer has been building up her understanding of the condition by asking lots of questions when seeing my painkillers on the desk. It's lovely that she asks lots of questions because many people just feel uncomfortable and ask the obligatory ones (usually, "but it'll get better as you get older, right?").

Then today she noticed the grip and brought the conversation around to the mental side of the condition - asking how I dealt with it stopping me from doing things and being really understanding. Then when I mentioned that the condition came with constant "background" pain, then additional "injury" pain she commented on how mentally strong I must be to be so positive about it despite being in pain all of the time.

So many "normal" people don't realise how the mental side of it can take so much longer to come to terms with (learning to pace and that we just have to prioritise things) than the actual pain and injury!

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