Pain Fog: Living in spite of Chronic Pain
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Day 22. What does it take to get a parking sticker? A disability.

3/17/2015

1 Comment

 
It seems I've struck a nerve with yesterday's post. I'm not the only one who feels judged while parking in the handicapped spot. Some of you have some pretty awful stories. I knew there was much to be said on the topic from my point of view, but obviously it has affected many of you as well. One thing I hadn't mentioned was the difficulty to get the carts to the car in these winter months with so much snow in the parking lots. It's tough because we can't carry the bags so we need the cart, and yet the cart can't always make it through the snow. Even when we are able, it can hurt to push it.

While we are on the topic, let's talk about a few other things that are difficult. I have known for quite some time now that a heated therapy pool is excellent for pain and mobility. In fact on a recent trip to Arizona I used it daily to help with pain and it was very effective. I found before my day started I could get into the hot tub for about twenty minutes with my coffee in hand, and I would feel much better when I got out. After the day was over and we had dinner, I usually lead the willing group right back to the hot tub to warm my weary bones and muscles. It's quite a pleasant way to get pain relief. Of course it didn't take the pain away fully but it made it more bearable.

Why then don't I take advantage of the lovely facilities at our local YMCA has? There is a full sized therapy pool with a whirlpool on one side and an exercise portion on the other. It was there 13 years ago when I came home from my first surgery. It was in fact, a written part of my release that I use the pool twice a week. It was recommended that it be a therapy pool with the temperature of not less than 95 degrees.

At first the knowledge that we had this facility available was very impressive. When I set myself up to use it, my doctor, Physiotherapist and I were a little shocked. The "therapy pool" was not set at 95 degrees, because .........wait for it...that was too hot for the babies. Babies in a therapy pool you ask? Yes every day, and every time of day it turns out. I love babies and I love being close to them but this is not the setting.

The facility has four pools. There is a general large pool with a normal temperature. There's a children's pool, which is a little warmer, and then there is a toddler and baby pool, which is warmer again. So why then is it imperative or even allowed that the moms and babies dictate the temperature of a therapy pool? I'm confused about that but that is how it is.

Another concern for me was to be in a pool with several babies in diapers. This can mean a risk of infection for someone who is very susceptible to infection in the first place. It was very difficult to stretch and do the routine required by my Physiotherapist with a host of moms and babies in the pool.

Walking to the showers is always a challenge with the wet slippery floors. Then when I get to the shower, often the handicap shower with a bench to sit on is taken by a family. I understand, believe me, I know showering toddlers after swimming is not easy, but neither is standing without the needed safety handles in a regular shower.

Then there's the case of public stairs. Many times I have been walking down a flight of stairs carefully using the rail and people are stopped talking right in front of me, leaning on the rail or just sitting on the stairs. I get a quick look and they go on with their conversation. Manoeuvring stairs is a tricky business. And those of us who can still do it need the rail, and we need not to be forced to stop half way done. Proprioception is a strange thing. I learned about it the first time I tried to stand when I was paralyzed. So what it means in my terms, is where you are in space. And an incomplete paraplegic doesn't have good proprioception. I would suspect some

of you with MS may not either. Our feeling does not always go right to the floor and attach to our feet. Therefore we need to be in continuous motion, as much as possible while going down the stairs. Try explaining that!!!

"Excuse me, my proprioception is acting up would you please move?" I don't think so.

There are challenges everywhere and challenges most people don't see, but the fact that I can walk, drive and get out on my own most days is enough for me. I will accept these challenges and try to be polite and light hearted as I enlighten those who want to be enlightened, and then just forget about those who don't.
1 Comment
mary merchant link
3/18/2015 10:34:19 am

'Looking fine while feeling lousy' is a continuous challenge for those with chronic pain and other 'invisibly incapacitating' issues, including chemotherapy exhaustion and stroke rehab. As a society, we seem willing to grant compassion only to those with the 'right kind of handicapt', one that's clearly visible to all. Much like the folks with service dogs for seizure alert, hearing, mobility assistance or trauma support - you're expected to 'prove' yourself worthy of help. This imposes needless, heedless barriers to people already struggling with the harsh terms life has laid down for them. And that needs to change - for all our sakes, as individuals and as a caring society. I salute and admire the way your blog contributes to that end, Maureen, and look forward to more entries and more thought-provoking observations..

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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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