You don't want me to drive! Sitting motionless with my legs dangling down? I don't think so! It's hard for me to ride more than 30 minutes. For long trips, I sit "Indian style", then put my feet up on the dash for a different blood flow, get out every hour to move around, and then move to the back to lie down if necessary.
I can only drive in ideal circumstances. When I've taken all of my medication and not feeling any emotional and physical stress. Probably 20-30 minutes a month max. I only drive local and in the air conditioning. If my air conditioner is broke then I can't drive. Doctors orders. I only use my car to buy food or pick up the kids if they miss the bus. Otherwise I call my friends to help me out.
I never got my drivers license - although I was not diagnosed with Dysautonomia until age 31. I now think it was some sort of sensing that something was not right all along. My coordination has always been off. I didn't start walking until age 2, am dyslexic and can't play sports, can't run etc.
If I stand in one spot for 10 minutes (or sometimes less) I will pass out. I get "electric shock" sensations down my arms and legs if I sit too long, and have little sensation in my feet. So I don't think driving is a good idea for me.
My sister got her license the second she was able - and actually got mad at me when I said no to driving. She convinced me to get behind the wheel once when I was 16. We were in a vacant parking lot on a Sunday (no one around) and she wanted me to drive the car from one parking spot to another. I couldn't coordinate enough to work out where I was in relation to lines on the parking lot, and the lack of feeling in my feet meant I could not work out if my feet were even on the pedal/brake. Put me off for life!
I live in a rural/remote area in Australia where public transport is almost non-existant outside the immediate town area. This makes getting around awkward (thankfully I am close enough to walk to and from work and the shops are directly opposite my unit). My parents live in a nearby village, and often give me a lift to places. Makes me feel terrible though - I'm 31 and still relying on my parents to get around! What worries me is, what happens as they get older - if they ever get to the point where they cant drive and need to be driven somewhere?
There is also the social stigma when everyone at work keeps asking "When are you going to get your drivers license?" I just explain I cant "for medical reasons" - normally stops the questions, but I feel embarrassed. Also has the effect of people not asking you out anywhere as you are not likely to be able to get around, or will rely on someone else to drive you.
There is a high accident and death rate on the roads in Tasmania (where I live) mostly due to bad driving, lack of indication, speed, alcohol and inattention. If I were ever to get my license I'm terrified I will become a statistic - so I just flat out refuse.
One up side to it --- you save a heap of money! No car, registration fees, licencing fees, insurance, petrol/gas, parking fees, maintenance etc :)
Also keeps you fit walking everywhere - the town I live in is mountain goat country - plenty of hills to keep the circulation pumping!
My 18 yr old daughter has POTS and Autonomic Neuropathy. Before Mestinon, she was having 15 -20 total vision blackouts daily. However, because she remains sitting while driving (with one leg bent and foot on seat) she has never had the issue while driving.
Her severe problems are when she stands up or has to remain standing.
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