By: Ginny

Ginny
Tue, 28 Apr 2015 19:33:43 +0000

I have Ehlers-Danlos Syndrome (EDS: a connective tissue disorder), and a lot of chronic injuries related to that. My back gives out, my knees lock, my feet don't always work. If I try to walk too far, I get an increase of compression in my lower back and the foot-drop kicks in. I have Postural / Orthostatic Tachycardia Syndrome (POTS: a "partial Dysautonomia"), and a lot of problems related to that. Being on my feet too long, especially standing still, can cause problems with by blood pressure and heart rate. I can end up with dizziness, nausea, vomiting, severe chest pain, lighheadedness, shaking, fainting. I mostly use a rolly walker with a seat. It expands the distance I can travel, and increases the amount I can "carry", but I still can only go so far. Sometimes, I can't use the walker because my back is too bad, so I can't lift it out of the car. Sometimes, I use a cane, because it is lighter and less bulky -- but then I have nowhere to sit down and am more apt to end up lying down in the store, which is not a popular move. Also, the cane isn't as stable as the rollator, and I get wobbly -- I've done a fair bit of damage to my wrists and CMC joints, twisting the wrong way, and also have injured my elbows and shoulders. On a good day, I may risk walking from a very close handicapped space to the nearest shopping cart, and using the cart as my walker. (There are lots of us!) On a really bad day, I can't make it from my house to the car. I can't make it from my bed to the bathroom. I may not be able to sit up in bed. So the whole parking thing doesn't matter so much. On an in-between day, I may do an up one aisle and down another grocery run, if I really need to. You are most likely to see me in early afternoon or late at night, when the lines are short, since standing in line is no longer compatible with consciousness. Every inch between me and the store, me and the register, is a problem. Every inch of elevation as I try to climb a ramp. Sometimes, my disability isn't so invisible, what with all the braces and the compression hose and me turning funny colors and my pupils going wonky when I overstress my body. But folks still give me a hard time about using the handicapped space. A power scooter would be a terrific help. (I know the ones in the stores are. I mostly frequent really really small convenience stores or much larger shops that reliably have working scooters.) But I can't afford a scooter, I can't lift a scooter. I can't even lift a wheelchair anymore. To use any more sophisticated mobility aids, I would need a vehicle adapted to lift and carry them. Thank you for a terrific article about the problems of those who have less-visible disabilities.