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Should PWME be driving?

Discussion in 'General ME/CFS Discussion' started by peggy-sue, Jan 5, 2013.

  1. peggy-sue

    peggy-sue

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    Thank-you Justy. You're a sweetheart! :hug:
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  2. justy

    justy Senior Member

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    well i don't often get called that! so it was worth it just to make me smile this morning.
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  3. taniaaust1

    taniaaust1 Senior Member

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    I actually once had what may of been a pass out at the wheel.. I was a bit unsure if Id "completely" passed out or partly. On that occassion it was due to the amount of pain I was in. I'd rang for help over my pain (I was bawling.. the pain was terrible) and the person who was going to help me, thou he did home visits, told me I had to come in to see him so he could treat my pain **sigh.. another case of someone not listening to how bad I was even thou I told him I was doubled over in pain and in a very bad way**. Fortunately on that occassion I was actually able to very quickly pull over just when I was to the pass out point so this then happened when I was stopped.

    I was lucky that time as I'd made it as far as the city before that happened so hence pull over place was easily available. I live thou in a country area.. there are windy one lane each way roads about .. with no where to pull over on the side to get off the road. One could easy get caught out and end up having to stop still right on the road on a corner where a car behind cant see far around. What's even worst, f one did get caught out in that way in my area.. there is no phone reception in this 10min winding road stretch between the two towns, so one cant ring for help. (I once broke down there.. it was super scary wondering if the next car to come around the bend would hit you. You actually need to get out of the car and walk away from it if it breaks down there as its just too dangerous to stay in it).
  4. taniaaust1

    taniaaust1 Senior Member

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    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 couldnt even get help to get to important specialist appointments using the gov system in place to help the disabled to get to appointments as they'd take a whole car load of people down to appointments in the city and unfortunately most of those people were covered in perfume and I got told the disabilty transport to appointments service couldnt ask the others they were picking up.. not to wear perfume.

    Things like that .. no other options available for transport for me as I couldnt even use the special transport service for those with disabilities (till I started having an affair with a married guy and he was able to help me then.. he's like my life saver).. made stopping driving one of the hardest decisions Ive ever had to make.

    There have been three very hard decisions so far with the ME.. one giving up driving, two giving up work completely and three.. having to move from a town I love to another town for medical reasons like Im doing right now.
  5. peggy-sue

    peggy-sue

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    I can't use public transport myself - it's too much to cope with;
    walking to the bus stop;
    standing around waiting for a bus,
    being battered around while on it,
    coping with the other folk (and their smells!) being around while on it,
    getting up and off the thing.. safely - and quickly.

    Then finding I have a long walk to wherever I need to be, getting done what I need to do...

    then having to walk miles to find the correct bus stop
    hanging around, waiting for the bus...

    I can't do the getting there and back AND doing something else while being there.
    I haven't gone into town on my own since December 5th, 2006.

    I needed special cat food for a new kitten. :rolleyes:

    But nothing like your troubles, Tania :hug:
    Wayne likes this.
  6. justy

    justy Senior Member

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    Yes i agree Peggy Sue re public transport - too much waiting around and walking about for many of us. Do you have a dial a ride type scheme in your area or something similar?
  7. peggy-sue

    peggy-sue

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    Nope.
    I couldn't get about on a mobility scooter either - Dundee is built on loads of hills, when you're not going uphill, you're going down, only to have to climb up again. There are no flat bits. Neither the scooter nor I could cope.

    Fortunately, we have a back garden, I can get out there; and when I do go to the local high street shops, it's very friendly - everybody chats away, folk and shopkeepers are on first name terms. It is quite a nice wee community, with lots of charity shops. It helps me that I got to be well-known there from the time I was working in Oxfam.
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  8. Valentijn

    Valentijn Activity Level: 3

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    Today I rode my mobility scooter while in the middle of a crash. No easy alternatives really, since my fiance hurt his back badly over the weekend, and can't sit down - so can't drive. He needs help getting dressed and getting shoes on, so I've had to that which is very difficult for me - probably what has triggered the crash. And he also can't carry anything. So I rode my mobility scooter and he walked so we could load up my mobility scooter with food for the next few days.

    It was a bit weird doing it while crashing. Luckily OI is much better now with the Strattera, but still too weak/exhausted to even sit up properly so kinda slumping over the steering column. Also hard to stay focused on things, but it was good to have him with me to plan on what shops we were going to, etc. And it was good knowing he was there (and we both had cell phones) in case things went badly. We also went early in the day, since I knew I'd get worse later in the day, plus that the crash could worse, plus the shops are much emptier and easier to navigate early in the day.

    My vision was doing funky stuff though. Somewhat disturbing. Not a fun ride :p Regardless of necessity and level and type of symptoms, I think driving a car during a crash would just be a horrible idea. It was bad enough going at 2 miles per hour with someone to keep an eye on me.
    justy likes this.
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    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?

    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.

    When I found that I had problems with long distance driving, I often broke long trips into two days. Fortunately, I was living and driving in rural areas where a safe motel was not too expensive. I would leave from my break/vacation a half day early to get my first few hours driving in during the afternoon while I was still alert. I would still sometimes have to take a rest break in the car.

    I am still able to walk and even climb stairs, so my situation is different than yours.

    {::Sigh:: How many normal adults say things like "I am still able to walk and even climb stairs"!}
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  10. justy

    justy Senior Member

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    When i was in my 8 year 'remmission' being unable to drive long distances, or in the dark were two symptoms that i had continuously - as i was still undiagnosed until 3 years ago everyone just thought i was weird. My health was at its best about two years before my severe relapse (which is still ongoing) and i actually managed to drive the 4 hours from my house to help my mum move home. I didnt do it all in one go - i had to stop every hour for a break. When i got to Reading (about 40 minutes from her home) i really was so exhausted i didnt think i could go on - i seriously eyed up the travelodge for the night. This seemed pathetic - i didnt know i had M.E and was well known for being 'a lightweight' 'oversensitive' and often 'a killjoy' or just downright 'pathetic' I pushed myself on - driving on the motorway - which was terrifying!

    Its so good for me to come on these forums and read other peoples experiences and see that i was ill all that time. Helathjy people can drive to help their mums out and dont feel like they are going to collapse if they go on for one more minute.

    Even now everyone around me, including myself talks about how much better i am, how well i am doing. But 'normal' people dont have to rely on a wheelchair to get around outside, or feel ill if they leave the house more than twice a week for brief trips.

    Justy x
  11. Mouse girl

    Mouse girl

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    I've been ill for close to 20 years. I have never had any trouble what so ever driving. I agree, that if someone is terribly ill with symptoms that make driving unsafe, than yes, they should not drive as cars are a lethal weapon in the wrong hands.

    But, I know a large community of CFS patients, most drive with no problems what so ever. I live in a city where driving a few hours a day is normal. I have driven to different cities for treatment. I've never had any problems or even close calls. If I feel too tired to drive, well, I pull over and rest in my car. If I felt too sick to drive, I just wouldn't do it. I take the lives of others too seriously to put anyone in danger.

    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. ;)
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  12. peggy-sue

    peggy-sue

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    :)

    An awful lot more than 50% of all drivers think they're far better than the average driver...:whistle:

    But I'm still delighted the folk here who have responded really DO take this seriously.:thumbsup:
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  13. In Vitro Infidelium

    In Vitro Infidelium Guest

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    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.

    IVI
  14. Chris

    Chris Senior Member

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    I do not drive when I am having a bad day, and I have friends and family who are willing to buy and bring me food if I need any. On better days I do drive, but not far--a few miles to food stores and the like. I feel perfectly safe on such days. On good days I feel OK driving 20 miles out of town, with a rest--lunch, whatever-- before returning.

    One small trick I have learned--pretty obvious, I admit--is that if I experience significant OI after, say, waiting at the cash to exit a food store, I put down the back of my car seat and lay as close to horizontal as possible for 5-10 mins, to restore good blood flow to my brain. Seems to work pretty well. Chris
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  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    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'.
    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.

    But was that actually the point I ‘got M.E’, or was it the HFMD that I had some weeks before, from which point I’d been mostly ‘under the weather’ , or was it from a couple of years earlier when I’d had a sort of low level malaise for several months or ………. ? On balance, I’ve come to look at ‘my M.E’ as a gradual onset illness probably following a slow but increasingly severe relapsing course following a Mono type infection as a child. Obviously everyone has to decide what their own experience may mean, but I think the reports of ‘outbreaks’ may have overly influenced how the M.E/CFS illness is seen. I’m not suggesting that viral epidemics do not play a role, but they may only be a small part of the bigger picture, albeit one that has high visibility.
    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’ :D.

    IVI
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  16. Jemal

    Jemal Senior Member

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    I think it depends on severity. When I first got ill, I got in 2 minor accidents, after driving accident free my entire life (had been using cars for 12 years by then). My wife didn't want me to drive anymore. It had to do with the brain fog and fatigue, as they were stupid mistakes.

    Fortunately my illness improved somewhat, especially the brain fog. So nowadays I am driving again, but I do keep it to a minimum. Also I try to drive at maximum 1 or 2 hours. I haven't been in any accidents anymore and I do feel it is safe, as does my wife.
  17. peggy-sue

    peggy-sue

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    I can remember the precise second I became ill. I was in the middle of a lovely great long hike, starting at the far end of the town, down into and around the town, then on out again and heading back home. A walk probably in the region of about 12-13 miles, something I was well used to doing on a nice Sunday afternoon up in the hills.

    I had to cross a road, I stopped, waiting for the traffic, then set out across the road. 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.

    Stupidly, I carried on with my walk - another 3 miles, uphill. I kept expecting this stupid behaviour of my body to stop as quickly and suddenly as it had started. I've been hoping ever since.:alien:

    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.
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  18. Wayne

    Wayne Senior Member

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    I've found this thread to be quite interesting. Regarding the 50% figure: According to Dave Barry, the infamous humor columnist, if there is any kind of universal belief, it's that EVERYBODY considers themselves to be an "above average" driver. That seems a bit extreme to me, and I would probably put that figure at closer to 99.9%. ;)

    Hi Mouse Girl,

    Ditto. :thumbsup:

    I myself have given the whole issue of driving a great deal of consideration. As a long-term "veteran" of CFS, I've learned to identify clear patterns, and have become very aware of what my capabilities and limitations are at just about any given time. When I drive, I make sure to be at my own personal "peak performance", and then add a little extra Cortef and a little extra caffeine to ensure even more safety. Along with other precautions, I feel I can drive very safely in my non-urban area, and like Mouse Girl, believe I actually drive more safely than many other "healthies" on the road.

    I think the point that's been made repeatedly on this thread about all of us having varying degrees of capabilities is an apt one. I think a good analogy is Laura Hillenbrand. My understanding is her ME symptoms are very severe, such that it would probably be unwise for her to ever consider driving. On the other hand, she's able to write best selling books that are on the NY Times best seller list or months on end. Me, I feel I can drive safely, but would never be able to write a best selling book.

    Perhaps a little side note: One day as I was driving, I noticed cars ahead were stopped or slowing down. It was because of a pedestrian crossing at a rather unusual location. I noticed a car speeding up from behind me who appeared totally oblivious to the pedestrian just beginning to move from behind one of the stopped cars into his lane of traffic. Quickly sizing up the situation, I pulled over into his lane (safely) and forced him to quickly slow down (which he did not like). Hard to know for sure, but it felt like I had possibly helped avert a serious accident.

    Thanks to everybody contributing to this thread. As Peggy-Sue mentioned more than once, it's gratifying that so many of us have given this a great deal of thought.

    Wayne
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  19. Kati

    Kati Patient in training

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    i am one of them patient who is still driving, not a lot, but I still do, mostly I drive 2 blocks away to the grocery store. As I am getting sicker, the time to filling the tank is getting longer and longer, I now fill up every 6weeks. This is an indicator of how poorly I am doing.

    Driving requires less energy than standing or walking in my case. Reading requires more energy than driving. (That is driving in my neighborhood, familiar areas)

    There was a time early in my illness I had perception problems, depth of field and also skewed lateral perception (knowing where the yellow line and the curb is)- that was really scary, but that lasted about 2 weeks and I no longer have this problem.

    i am thankful to be able to drive, at least a little bit because this is my independance.
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  20. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Yep that'd be about right. The analogy I use is 'like wading through wet concrete'.
    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'.

    IVI

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