How do/did you go about concluding that you needed a wheelchair to function better?
There were things I needed to do or would enjoying doing, but couldn't do them or would struggle and suffer due to OI (low blood pressure) and PEM. There's often a misconception that people need to be completely unable to use their legs, or otherwise completely unable to walk to use a wheelchair. This isn't true at all. Mobility aids merely exist to make people more mobile, and a wheelchair and mobility scooter do that for me.
But keep in mind that a wheelchair won't solve your problems, unless you have someone to push it. It's not like the problem is just with our legs, and pushing a wheelchair yourself is a lot harder than walking. But I'd also suggest staying away from transport chairs, even though they're cheaper, lighter, and fit into smaller spaces. Too many times I've been stuck in a corner when my pusher gets distracted, and it's very annoying. With a wheelchair it is at least very easy to turn yourself around, so you aren't staring at a wall for 10 minutes.
I don't particularly enjoy the wheelchair. It's so passive, and dependent. But it's a life-saver when I'm too sick to use my mobility scooter, or when going into shops with narrow aisles. It's also great when driving around to several shops, since mobility scooters take a while to pack and unpack, and take up all of the trunk space.
For me, the mobility scooter is best for "walking" around the neighborhood, "walking" to shops nearby, and taking on vacations where there's lots of nature or other sites to see. It really is a lot of fun, because I'm fully in control again and can go pretty much anywhere. I can even go pretty fast (jogging pace) if I want.
How did you overcome the emotional 'trauma'
I hadn't been to a store for over 6 months when I got my mobility scooter. I was frustrated by that, and with being stuck inside the house. When I got the scooter, there was no trauma at all. It was completely wonderful. I could "walk" to the shops with my fiance again, see the swans nesting by a foot bridge, choose items from the store that I wanted, etc.
I've never had any weird looks, though that may be due to being in the Netherlands where people tend to be MUCH less judgemental. Kids think scooters are great. A little one in the supermarket stopped crying every time I drove by, and the neighbor kids wanted to see how fast it could go. I've had brief discussions with other scooter users (usually older), who are envious of the stability of my 4 wheels compared to their 3 wheels, since access ramps are often very badly designed here when they exist at all. And I got challenged to a race in the supermarket by a very old man who turned out to have lived in the US for a couple decades, so we were able to chat in English.
how did you get support for using a chair from your clinician
I didn't. The Netherlands is unfortunately ruled by a psychosomatic model for ME, and it is often equated to burn-out. Even good-intentioned doctors and therapists often believe that it is curable with a bit of CBT and GET, because that is what they are told by the supposed Dutch authorities on the subject. It might be different now, especially in the US, with the IOM report being available. It pretty well trumps the quack "authorities".
And basically, depending on your insurance, you might not have many options available. Such as everyone here getting 3-wheeler mobility scooters and nearly tipping over on ramps, whereas I can easily go off-roading on rough terrain with a 4-wheeler. And the standard wheelchairs provided by local governments here are a bit flimsy (cheap) and narrow, whereas I was able to get a very sturdy and comfortable one for 200 euros.
I'm having a great deal of difficulty walking much less than a block outside my door, which means that quite often, I'm winded, exhausted, heaving for breath and getting faint if I try to walk further than..
If that doesn't warrant mobility assistance, I can't imagine what does. It's like some people think we shouldn't get a mobility aid until we're basically to sick to even use it!
I'm also really reluctant to accept needing a wheelchair on an emotional level (feels a bit like giving up or giving in) but that's my personal bias regarding labels.
A lot of people seem to have trouble with that, especially when we've been targeted by clueless quacks telling us that depending on such devices will make us sicker. But I've never looked at someone else in a wheelchair or on a scooter and thought "huh, I guess they just gave up", and I doubt you've ever thought such a think either. Why be harder on yourself than you are on the rest of the world?
That, and now I'm pretty heavy, so I hate to think people are concluding that I'm in a scooter or chair because I'm a fat, overloaded pig!
Well, I've never really cared what other people thought of me, and wasn't about to start just because I was obviously disabled now. I've also been overweight for a while, but in retrospect, my enthusiastic efforts to exercise or reduce calories usually triggered something very similar to the PEM I get now, just milder and completely ending after a few days of resting with "the flu". The fact is that chronic illness often leads to weight gain. It's difficult to avoid, especially when the expert advice has centered on exercise for so long, and they're just starting to realize that exercise is almost useless for weight loss.
But people usually respond to me in a manner which mostly depends on how I'm responding to them. I don't look upset or defensive. I make eye contact and smile, and usually get the same in the return. In fact, it's a bit unusual that I do get so much eye contact and smiles when out shopping, since Dutch people tend to be not-so-social, especially when shopping
