Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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well i don't often get called that! so it was worth it just to make me smile this morning.Thank-you Justy. You're a sweetheart!
I felt great fear and a lack of control when driving at times when really I shouldn't or when symptoms become overwhelming; but in almost all instances I was able to pull over and rest and/or call for help. Even woke one time in the back of an ambulance - but fortunately I had again managed to pull over before blacking out and a passer-by had reported me being 'in distress'.!
I surrendered my driving license years ago, which at least made it easy to qualify for free public transport.
Were you this bad, and did you continue to be this bad, from the first day that you had ME, assuming that you know when that day was?In my case the combination of impairments of balance, visual perception, cognition and memory make even walking a problem at times - let alone using a machine and that would include a disabled person buggy.
And not just MCS. There are a whole range of practical considerations. However, a free bus pass can at least provide some compensation for the loss of being able to drive, so for those who are able to make use of buses, and where the service is accessible and appropriately frequent it does add another element to the equation of whether to keep driving or not. In the UK, currently as long as you have a supportive GP the application is pretty straightforward, there are no renewal issues and no income related issues so it can be a significant help to those whose household income is limited.I'd like to point out that there is many in our community who have the added issue of not at all being able to catch public transport at all due to coexisting MCS.
I’m very cautious about assigning specific chronology to the illness process. I know many people are very clear in their own minds about the ‘start point’, but I think this overlooks how our minds work, which in terms of dealing with the ‘flow of time’ involves mentally ‘fixing’ those things that have extended duration to an event which belongs to a very discrete time frame. To choose a very unlikely analogy: falling in love; is there some absolute moment when the state of ‘in love’ happens and then exists until it stops, or is ‘in love’ something that happens unconsciously and only become conscious when revealed by some specific event, or is ‘in love’ a gradual process, which only achieves a meaningful level when given reality by an event. And to complicate this, how is it our memories preserve such processes and events ? My guess is that there is a potential for many peope who report a specific start point for their illness to be undervaluing earlier less significant intimations of something 'going wrong'.Were you this bad, and did you continue to be this bad, from the first day that you had ME, assuming that you know when that day was?
I do actually have a ‘first memorised illness event’ – though I wasn’t driving but negotiating a journey comprised of walking and public transport. On leaving a meeting (the day had started fine) in a part of my then home city that knew moderately well, I found myself weaving around the street, feeling as though I’d consumed a great deal of alcohol and was very confused about where I was. I actually had ( even the following days) little memory abut how I got home but the memory of visual ‘instability’ and overall lack of co-ordination was strong enough to remain. At the time I assumed I had ‘flu’ – and indeed maybe I did have a virus, and I certainly never had any sustained ‘good health’ thereafter so it could have be ‘onset’. I wasn’t driving regularly at the time – and never again felt able to.Mine is viral onset, so I know the first day and I will admit that it was a bad decision to drive myself a couple hours home that day. Once I got a good night's sleep and some antibiotics from the health service a few blocks away, I was able to make the mile or two to and from work without problem.
By the time I got the rebound infection that probably clinched the ME, I had arranged to take a few days off work. I was still planning to go to class. When I got up that morning I felt 'weird' and the first thing I thought was, "I don't think I should be driving. I will walk to class." By class time I could not even make it back up the stairs to my bedroom to get dressed. Once I recovered enough to return to work, I was again able to drive the distance. (I took a bus from work to class.) I slowly recovered and after about 6 months thought that I was well. In retrospect, I don't think I was. Within a few months, I was slowly going downhill again. Since doctors claimed I wasn't sick, I didn't have much choice but to work around the problems I was having.
Luckily the impairments have not been constant, although they are frequent. At home it’s always been more about adapting space to accommodate the pratfalls and accepting that crockery and glassware have a short life. Away from home the biggest challenge is other people – the ‘avoiding moving target’ syndrome, and of course ‘mixing with traffic’ is unhealthy. I’ve had to become very disciplined about only using pedestrian crossings. That and being ‘sensible’ about using ladders and power tools, and sharp knives. Still it’s one aspect of the illness in which I find a lot of humour – brings out my ‘inner clown’ .I am still able to walk and even climb stairs, so my situation is different than yours.
An awful lot more than 50% of all drivers think they're far better than the average driver... ......... But I'm still delighted the folk here who have responded really DO take this seriously.
I tell you what, I am a better driver than alot of healthies I know. Just depends on the person and their symptoms is all.
Yep that'd be about right. The analogy I use is 'like wading through wet concrete'.A third of the way across, my legs stopped swinging freely forwards without my conscious being involved at all... when I suddenly had to push each leg laboriously forward, they each suddenly weighed a ton, it was as if I was in an invisible lake of treacle.
I'm sure there are plenty of 'shrink to fit' (pun intended) psychological explanations that can be applied to the 'ill when fit' situations, which in some ways may be even more egregious than the 'deconditioning' cover all. At least, however inappropriately applied, deconditioning is a potential problem with any chronic mobility impairment and has to be addressed eventually. In spite of that though I think it's worth looking at ones physical condition prior to these acute onset events and considering whether there may have been some gradual decline being in play prior to 'dropping off the cliff'.You do not get "deconditioned from fear of exercise" right in the middle of a lovely great long hike when you are very, very fit.