Posted 09 March 2007 - 10:28 AM
Do you think I'd have to get a scooter or wheel chair? Iâ€™m 27 and appear quite healthy so Iâ€™d probably get a few bad looks, but whateverâ€¦
What are your thoughts or experinces?
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 09 March 2007 - 03:02 PM
Forget the looks. Get a wheelchair or scooter. When we go out if the walk is too long I use a wheelchair. I am going to be 50, but I don't think age makes a difference. If you need assistance, use it.
Posted 10 March 2007 - 05:51 AM
I'm currently experiencing all of these "how to" myself. I've definitely becoming a mossier and am teaching those that walk with me to mosey as well. My justification for making others go at MY pace is that it's time for ALL OF US to slow down, stop and smell the roses.
Even though I fought it, I now carry supplemental oxygen and it does help. I did get a small bottle and bought a nice looking backpack purse so it doesn't shout OXYGEN USER. I was very self-conscious at first, but with time and in my case, a supportive husband who's always asking "Where's your oxygen?" - you do get over it. It helps with those longer distances allowing you to do things you couldn't do otherwise. I still need to stop once and a while - and I do.
If I were going someplace like DisneyLand - I would definitely need a scooter. If that's what you need to enjoy yourself, then you do it. We all need to not ignore our quality of life and if a physical aid improves upon that - then we need to use it.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 10 March 2007 - 07:27 AM
I have used a wheel chair in the airport. It was a life saver. It was embarrassing, but I didn't know anyone so it made it a bit easier. I wondered what the pusher was thinking though....but no one asked questions.
When you go on your trip, do what you need to do to not be so tired. That way, at least you will be able to stay up later and go out to dinner or whatever at night...and not just want to lay in the bed. I see so many people parking in the disabled parking, like myself, and I don't always look sick (just most of the time...ha ha) but I think more people than we know realize you don't have to look sick to be sick. And if they don't get it, they are not very bright.....LOL.
I hope you enjoy your vacation.
Posted 10 March 2007 - 08:43 PM
I guess if you feel you're at the stage where you need a wheelchair or the likes then you will just adjust accordingly with time and use of it - like everything else. For me it was taking my own cutlery to restaurants... I was highly embarrassed at first but now I don't even think about it.
I have lung involvement too, albeit only minor. However, I have built up my wallks to 1/2 hour - 1 hour now when they used to be 10 minutes. I'm a strong believer in keeping the body moving and pushing it further. I asked my general practitioner once if she thought getting fit would be too much of a strain on the lungs and she said "the fitter the better".
My advice would be to walk as much as you can but rest in between to let the body recover.
Take care, Megan
Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement
Posted 11 March 2007 - 02:43 AM
I haven't used a scooter or anything because of my Sclero. yet, but my 37 year old husband is disabled from MS so we've been parking in the handicap zone for a few years. He doesn't always look disabled either - when he starts walking he's fine, but after a lap around a large department store he can barely limp to the car. At first I felt embarrassed about using handicap parking because we are so young and don't always "look" disabled, but nobodys ever looked at us weird or said anything - not that I was aware of anyway! Hubby carries a little business card that explains MS, so if anybody ever did comment, he can explain MS to them. So I say, use whatever you can to help you get around, and any embarrassment you feel probably won't last long - just enjoy the ride and how good you feel when you get to your destination with some energy left! Maybe carry some Scleroderma pamphlets so if somebody does make a comment, you can tell them why you use the chair and I bet they'd feel about an inch tall and never comment to anyone else!
Oh, almost forgot: when hubby and I were thinking of going to Cedar Point, I went on their website and I found out they can mark our place in line, so we wouldn't have to wait in a 2 hr. line in the hot sun, we could sit on a bench in the shade - I think we just had to show his handicap parking thing. So if you are thinking about Disney Land, check out their website to see what type of help they offer for handicapped accessability; it should say how/where to get a scooter & stuff like that.