Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How on earth...

Tim, I think you're right and there is not much to do, just have to 'sit it out' (pun intended).

Valsmum, yes it is called that, I just looked them up and may have to get one as they look quite good and are apparently very lightweight so easy to carry around.

Molly, you're absolutely right, I suppose if they're talking about us they are leaving some other poor soul alone. I am fast getting to the stage where I think 'what the heck'...not quite there yet but almost.

Hi ouchpotato

It seems to be a constant problem with me. The biggest problem I have is being stubborn and not carting around a cushion. I know I should. I just wish they would make a cushion you could wear and blow up if you needed it. I have a cushion at home that I use. Many a day has been ruined because of where I have been sitting. I hope you figure out a way to be more comfortable.hope others chime in with their solutions.

A lot of people are mentioning that they carry a cushion around, for me, that is irrelevant. It is the body in an upright sitting position that hurts. I can handle 30 minutes of driving and then I have to decompress. No sitting at dinner tables and having conversations after-I have to decompress.
my feet act up and I cannot stand and chat for very long either.
But when I am laying down and decompressed- I feel great but I cannot DO very much in that position.
It would be nice if there were accomedations for those with a sitting disablity but we are not recognized by the disablity act. So be prepared to be stared at if you are waiting for an appointment and need to decompress-I've laid down in a waiting room before.

Hi ouchpotato (love the nick, BTW!),

I can certainly understand your insecurity about appearing to be "different" in public; I am very bent and twisted by AS and have had endure the stares of others for more than 25 years now. For many of those years, that had been compounded by the fact that, because I literally can't sit in most chairs, I have to take my own chair with me if I want to go anywhere. Thus, almost every where I go, a lightweight desk chair with arms goes with me.

Making the leap to take the chair with me was huge for me. Pushing it along was noisy (it's on wheels), which guarantees that anyone who want already staring at me definitely is one they turn to find out what the ruckus is. However as hard as it was to be such a spectacle, I actually "Got over it" in a hurry because I quickly realized one thing--I could take the chair and do things I wanted to do with my friends and family, knowing the staring would follow--or I could become a shut-in and stop enjoying life until I withered away and died. Guess what? Pretty easy choice once I looked at it that way.

I still hate taking the chair, and I hate being stared at, but thankfully my friends help me keep things lighthearted at all times and always help me out. I deal with public outings much better than I used to, as I realized that as long as I was having fun, who cared what others thought of me? I think you need to make a similar leap--if carrying a small pillow means you will endure FAR less pain and start to enjoy outings again, than who cares what you look like? Give it a try, because I think that once you overcome that first hurdle and realize people cared about your pillow far less than you thought they would, things will suddenly get much easier.

Good luck,

Brad

Sorry for all the typos, done on my phone and too big a pain to correct.

I've read that they studied this and people do pay far less attention to other people than we think they do.

In other words, we're all pretty ego-centric. Which has both its positives and negatives.

So really, people really don't pay much attention to others very much.

I know I'm pretty oblivious to others. Or if I notice something, I certainly don't care.

Think about it; how much would you judge someone who stood out in the crowd? Probably not much. Others probably have the same mind set.

When I worked in public accounting, clients chairs often flared my hips.

I had a small kitchen chair at home, I would take this to the clients on the first day of audit and take back home on the last day. It just fit in my back seat...

Beveled chairs always did my hips in and all clients seem to have those chairs.

This helped my SI joints from flaring big time. Still had to get up and walk around from time to time.

Looked funny on last day of audit and I was taking a chair from the office of client

Tim

I have been fortunate with biologics that I pretty well never have any back pain (mostly just hand problems at this point), but I know there are certain chairs I still can't sit on , especially in the morning. I also like to sit forward in the chair and with good posture, can't prop my feet up on the coffee table watching tv, and can't sit on the ground to watch my daughter's soccer, etc. I bring a little folding chair for that last one, or just stand and walk around. The key thing for other chairs is I need my hips higher than my knees - low chairs will flare my back, almost guaranteed. I always go for the taller chair, or sit on the edge and lower my knees (have to be careful there that I don't slide right off or push the chair backwards! That's embarrassing). I like adjustable chairs that I can put on the highest setting.

I feel your pain - when I was first diagnosed, I was the standing (and pacing!) dictator at all my morning meetings. I think people just get used to it after a while.