You see, when a physician sees you and examines you they do the basics, what it takes to tell them what is wrong with you. But when a physical therapist examines you they put their heart into it. They want to know how you move, how you breathe when you move, how you should be moving, and they are more willing to share with you their thoughts on your progress, or lack thereof.
She watched me walk into the therapy gym with the dark purple cane I bought from Walgreens... (which is not the 4 prong cane or the wheeled walker I was supposed to have...) But, it's ok that I didn't waste my money on those things, because they were bad options anyway... She tested my muscle strength. Her furrowed brows, though not really an encouragement, were signs that she was working on helping me, and that was a comfort. We talked about leg braces, ultimately deciding they would be to heavy and use more energy as well as risk my hip on the right... And her final decision was something that I am remotely familiar with from work... With just walking I used a lot of energy to propel the weak legs forward, but used very little upper body strength, only fingertips to balance on walls, or lightly on the furniture. A regular walker put to much pressure through the wrists, which are trouble areas. So, she broke out the walker with arm rests... ugh.. its bulky, but the brunt of the weight in moving was on my forearms and shoulders and spread more evenly out, and I was able to move so much easier...
For now a cane will have to do. Insurance and finding the walker and fitting (apparently I'm short...) takes a while, plus it is different than the original doctors orders, so a new order is needed....
The distance I am able to make without being so hungry for air are getting shorter and shorter...
We talked about ways to conserve energy: showering in the kids shower where I can sit and use a hand held. no blowdrying the hair, and if I must then sitting on my bed while blowdrying. Sitting for tasks that allow it. Not doing so much at once.
She said she wanted to talk to my doctor before we even start any kind of therapy.
And of course, she like everyone else scolded me for driving...
This whole driving thing is working me over!! I have this inherent NEED to drive. It's like the epitomy of independence... But, I have noticed changes there too... It's harder to hold my foot up to not have a "lead foot" on the gas peddle, and it is harder and requires more work to apply the brake. And steering the small car is way more tiring than the van...
Anyway, that's enough rattling on for one night...
As long as they don't take you off the road because of seizures. Over here the doctor has a legal obligation to inform the vehicle licensing people. I know as both husband and son have epilepsy although son has a restricted licence and spouse's is not due to time lapsed since last seizure.
ReplyDeleteTry pacing with your driving. Think of it as therapy using those muscles to keep them going if you like. I think over here occupationtional therapists have a duty to mention driving if wearing braces etc. and informing insurance company. But also on the other hand EDS is not listed on the list of conditions the gp has to inform DVLA about. Not sure of the rules where you are. On the otherhand if driving has just got too much, try just not driving for a week and see if it makes a difference and what you learn from not doing it. Just some random thoughts as ever.
Just imagine how tiring it would be relying on public transport even just to get to a physical therapy appointment. But on the pacing front, making appointments for down days rather than mega busy days so you are not running out of steam could help (clutching at straws somewhat here).
Have you been assessed for POTS at all, I'm sorry I can't remember.
SOrry if comment a little all over the place am doing that typing with one eye shut again thing, which means I am going to switch off the laptop right now!!!!
Wishing I could afford to send you a free holiday frankly. Where all you needed to do was relax and look over an infinity pool, dreaming and practicing that close your eyes and blowing out candles thing you mention in your last post.
Hang on in there Trish even if its by a thread. Like collagen, even threads are made up of many fibres!
Well, legally I'm not supposed to be driving... But, there isn't a law in Texas that requires doctors to report... It's hard having a family of 6 with not a lot of support from others. Our support moved to another state from a job relocation. I don't know how it will end. I know I will make the best of everything as soon as I can find out how much "everything" is going to entail. I just need a direction, even if it includes us moving somewhere where we have family support... I'd rather not move now that we found great doctors, but se-la-vie... I miss all the things we enjoyed. geocaching and walking. Eric and I used to just walk around nice areas here in Dallas... It will get better, and we will learn how to live with whatever circumstance we need to, and adapt, I just wish I knew what I needed to adapt to... =) Thanks!!! =)
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