I went into a cafe today, id been walking for a bit round the shops, and id forgotten my water, my mouth was dry my mimd was tired, my legs felt like aching throbbing lead, i ordered a sadwich to take away , and while she was making it i had to sit down, she shouted " oh is it sit in ??" i said no takeaway she said on just since you were sitting down , thought you might be sitting in then ( said sarcastically as price would have been different ) about 5 ppl stated, i know i dont look ill and im 37 but i felt so embarrassed, i could do nothing else but sit down like an old lady, and they gave the the worst stares lol ,i used to get up with my kids run about all day shopping cooking cleaning, stay up all night doing a shift at the hospital in a heavy area, then come home and see to my kids that were not at school yet and i had no child minder, 36 hours without sleep twice aweek, now im stared at like some lazy mare, felt so judged, im sure youve all expereinced this, i am 37 feel like 77 , whats your experiences ???
Hi
I know what you mean, but who cares. I am not sure of the ways where you live but I sit sometimes when I go out and am tired. I wanted so much to help my son today. hes 23 and was putting electric into his garage. so he was digging a trench. We were finding so much stuff in the ground. I was moving stuff. I had to quit and now am so sore. What happened to me. I use to be able to do so much. I hate it. I need to take a nap. Oh well. I just go on and count my blessing instead of my down falls.
I guess I should be glade i can walk etc. there are so many that have more problems then me. But its hard not being able to help when you want to so bad. and than sometimes I do over do and hurt the next day so bad. Sometimes it takes me days to get better. I am on here every day and try to read everything. I love this site. It also gives me something to do. And i get alot of information.Well better go for now.
Theresa
I would have said, no Jimmy ( everyone is Jimmy in Scottland, right?) I just sat down over here to break a little wind while you make my sandwich ;D
tector
aye its hellish wanting to be active and having passion in your veins and your body not knowing about it, and as you say you seem to pay for days for not respecting limitations,
espon lmaooooooooooooooooooooo !! class!!
I shall keep that line in mind for next time :D , suppose i should be used to it as a goth for many years on a small town i got stared at alot, must have been training for now lololol thnaks for the cheer up :D might just get a t shirt saying ok if it keeps you happy im not ill just lazy :D
Next time tell the one shouting to you, "Yes, I'm just having a sit down, since you don't offer a lay down area".
I get those stares quite frequently when sitting on a bench at our food store. Then when my husband comes and helps me up, they quickly stare the other way. Why is it if you look well, you are expected to be well? Like any of us can help what we look and feel like.
Take care everyone and don't worry what you look like, if you need to sit, do it and stare right back. I once rubbed at my face thinking I had something stuck on it, and ask the person staring "Did I miss a spot when washing up this morning?"
Pooh
I had one of those 'lazy mare' days today. I was one of the first in the building at work this morning. There were two pints of milk placed on the bottom of the stairs, waiting to be taken to the second floor kitchen. After being in the car for the 30 minute drive I need both hands to pull me up the stairs. One of the managers from the bottom office glared at me when I walked past the milk. I said I could'nt manage them just now - sarcastic reply came back - 'Well, I guess someone else will move them eventualy'. I felt so bad. The thing is, I don't want to have to use the elevator for one floor, so i arrive early to get up the stairs before anyone can see how much effort it takes. I guess I blew my cover today. :(
MAybe one day that manager will understand.
Kathyx
Unless confronted with a chronic disease themselve or with a loved one's disease, people can be quite insensitive. My Mom who died in '04 (at 92!) lived the last 35 years of her life disabled after a stroke. She was a strong woman and wanted to remain part of life all the time. Those times I cared for her over the years was a great learning experience for me in how the world views and deals with people with even obvious difficulties. Many people are incredibly kind, others not so much. But remember, you're stronger than any of them by even being out there.
Yes, people can be very insensitive. Having a cane with me at all times when I'm out and about has helped me "come across" as disabled, and it has been quite useful.
I like the idea of the t-shirt, though. A good slogan - it combines humor with a bit of a nudge to be more sensitive. We should come up with some more slogans and designs.
Genko
What in the world is wrong with sitting down if you're waiting for a to go order? ??? Beats the heck out of me! It sounds like the folks at the cafe were crabby because the food sucked. Maybe they had heartburn or indigestion. I hope your sandwich was good tho. :)
I have to sit down a lot when I'm out and about and many times I end up limping around when I overdo it....most times I don't think I get the rude looks or comments....if I did I would surely respond...but maybe I did get some rude comments or stares and never noticed.....probably because I was in such a brain fog!
See? There are some good things about being confused all of the time.... :D!
I have had both knees replaced and have ongoing neuropathy in both legs so to stand in one spot for any length of time becomes quite an effort. Then to top it all off I tend to lose my balance once standing in one spot - kind of like the weeble toy. Only problem is this weeble will fall down. So I am constantly looking for something to lean against or sit on when having to wait. I get very spooked when having to stand out in an open area with no support. Do I really care if people stare -- NOT at all. I figure the stares will be much worse if I lose my balance and trip or actually fall over. I opt for personal safety and the heck with the rest.
thnakyou so much for your replies, its given me some food for thought :)
pooh lololol@lie down area love it lol
kathy im proud of you, you get out to work with so many symptoms, and you face that discrimination , pain and you get yourself up and out there, your an inspiration woman , when i read posts here i realise that sjogrens sufferers have been very active hard working ppl, and continue to be so after DX each day is hard work, and wether its recongnised or not its fact, thnakyou for sharing that with me , i can see were all in same boat
BOB aye seen it with my grandmother who i nursed one day a week on my days off years ago, she was obviously ill she had cancer,i tok her in the wheelchair to a local restraunt for lunch, she wasnt in great shape, ppl looking at me as if , she shouldnt be here amongst us health ppl, made me so mad !!
puppy no idea, i think some ppl just live to be awkward,its there raison d etre , its like some ppl hold a door open for someone looking infirm or elderly i was brought up to think that was manners
genko think we should start a thread T Shirt slogans lolololol might be fun
lynn ever cloud has a silver linning lol , i swear i dont get as upset about sjogrens as i could and worrying about not having a good memory now , but it slips my mind :-s
salsen you make a great point, thats the bottom line personal safety , if only ppl understood it was self preservation and not lazinness things would be so much easier on ppl
Thankyou so much for all your replies each one helped me in its own way, i guess i wasnt prepared for it, and reading here i feel more able to prepare myself for it, and arm myself with some humour , its not like me not to have an answer for everyone, im a nice person, but can have a tendency to be very sarcastic and blunt back at ppl of those dispositions , just got caught off guard , dont get it with these ppl, as a nurse for years i was used to workign round ppls limitations, my son oldest sons friend at school is mildly autistic and he could explain to me at 13 why he dressed and undressed in a cubicle away from the rest of them at PE because his autism mad ehim more private, my youngest sons best friend is profoundly deaf, and has been since birth, most of his family is also, you should see how they communicate and how he works round seans deafness, they just werent raised to think different is lesser than, id say on knowing these two boys they got better and more loyal friends as alot of ppl and theyve enrichened the lives of my boys, these lads bring gifts, not limitations, the world needs to change its view
T x
G'day mc haggis, I think I might play the devil's advocate here. I agree they should have shown more compasion. Having said that, you must consider their attitude comes from a sickness of their own. It's one that every one has to some degree. Unfortunately ignorance is a hard sickness to treat. When we have learned the lesson of love and compassion, ignorance will be cured. These people who you encountered deserve your compassion. We must pity them, because their ignorance makes them small. When you run into these type of people show them the love and compassion they are lacking. In this we can find our own strength. Read 1 Corinthians 13.
Seeker
I choose to use the handicap restrooms due to the fact that they are higher off the ground and
by using the hand rails i can get up without tearing the TP holder off the wall...after coming out of
a stall one day there was a woman in a wheel chair waiting to use this stall and with a very angry
(fire coming out of her eyes) look she said "it's amazing how insensitive some people are!"
I turned and looked back at her and said "yes, you are right, it is amazing!" Everyone is
capable of one sided thinking.
JJ
JJ,
The women was in a wheel chair, I would have given her a swirly, she couldn't put up too much of a struggle ;D
I would just say I'm disabled and Im sitting here since you don't have a bench.
Hi Seeker
I have that happen. I said to the person concerned, 'would you like to see my colostomy?' It was mean to say, as I don't have one, but I was recovering from major surgery at the time, and needed a single booth. I don't think people can understand 'invisible illnesses'.
Kathyx
Benjamin Disraeli:
Never apologize for showing feeling. When you do so, you apologize for the truth
T x