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Should PWME be driving?

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

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    If it was the gradual onset, then you drove for years with ME without realizing it. It sound like you realized you were seriously ill about the same time you became unable to drive.

    I woke up in the morning with the 'nasty flu'. I didn't drive home until the afternoon, so I knew I was sick when I started out. Just young, foolish, and a female who had been conditioned not to be a 'bother' to other people. I also didn't realize just how sick I was when I started the drive. It caught me unaware and with severe brain fog which hindered my judgement. I learned from the experience and made sure it never happened again.

    Actually, I drove for years without knowing that I had ME, but I knew I had a problem and made changes to my driving to accommodate it. I got a clue that it was probably CFS (as it was called at the time) shortly before I lost my job. I now do not push myself to extreme PEM like I did when trying to maintain my job and am able to drive longer distances than I did then.
     
    justy likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Peggy Sue.. I dont think Ive heard any one describe it like you did there before but what you've said interests me highly as when I was a child, once when about 10 years while out shopping with my nanna and the other time when I was on a fun school hike.. I had 2 sudden incidences I clearly remember just like yours. (interestingly thou, I didnt develop ME till I was 26/27 years). I was a very fit teen who played a lot of sports yet this high school hike, suddenly I COULDNT walk any further and they had to go and get a car and carry me to it.

    I think this is the only time in my life Ive faked something, I faked a limp to try to explain why I couldnt walk and needed to be picked up by car. I was old enough to know it would be just way to weird to say to my high school teachers I was struggling to move both my legs (who'd believe that!! when even myself thought it was very strange.. all I knew was something very wrong and they werent functional).. they were dead weights which were taking an massive effort like having to climb mt everest. So so hard to keep them moving... yes like trying to walk throu very thick treacle.

    . These 2 childhood incidences make me wonder if I may have some mito disorder.

    Hearing what you say here that you got your ME from that movement... makes me very aware that maybe I was so so lucky not to get this illness in childhood (the thought gives me the chills). Maybe Ive had several near ME misses previously. (I got mono at 15 yrs but was only bedridden for 10 weeks before I recovered.. that that was probably a near ME miss too).
     
  3. peggy-sue

    peggy-sue

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    My physical condition when I instantaneously became ill was superb. I had never been fitter-for-purpose.
    Not "excessively super-fit" - that's NOT good.
    We had taken up yoga and been practising for 5 hours a week for 3 years as well as all the hillwalking we did.
    Our diet was excellent. All very, very sensible.
    Our dream was to be; "that funny little old wiry couple of hill-tramping, cat-loving, opera-going, art-collecting muesli-munchers in waterproofs".
     
  4. peggy-sue

    peggy-sue

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    I do know a girl whose ME onset was as intantaneous as mine - it hit her in the head with the most appalling migrane like pain - she thought she'd had a stroke - and like my situation - it simply did not stop.

    She was instantaneously condemned to the dark, silent room for the next 3 years, the pain did not stop from the moment it started.

    She is far more sick than I am, her courage has inspired me from the moment I met her.
     
  5. justy

    justy Senior Member

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    Kati brings up another interesting issue of perceptual issues when driving. I have always had some weird moments of not being able to get mty brain to understand what was going on ahead. I could 'see' it well with my eyes, but my brain could not work out what it was. This has particularly been a problem with large junctions or at night.

    I no longer drive in large (or even medium) towns, so avoind this problem. And i dont drive at night - poor night vision and problems with perception are a killer together.

    I once had a dog who had had canine distemper as a pup, which i had nursed him through - he was veru lucky not to die, but my vet said most likely he would have neurological issues. Well, he never could work out what it was when someone lent a bin bag against a lamp post, or put a box out for the bin men to collect. He would get very upset and bark at them like mad, until we were close enough for him to see what they were - very similar to my problem.

    Before i was diagnosed - and when i was in remission to very mild i would have to ask my husband to tell me what he thought was going on with the junction ahead - how should i appraoch it - what were my lights, filter lane etc. He always thought i was just a crazy woman! Now i rtealise this is also not normal.

    Peggy Sue - your vision of your future life, tramping about the hills and eating meusli was very similar to mine and my DH. We had been planning for years to walk the pilgrim route from France through to Galicia in Spain. It saddens me so much to know i will never do this. Recently i have been encoiuraging my husband to do some adventurous stuff without me. I hate being at homw alone, and find it hard to cope with the kids etc alone, but i cant bear to think of his life so restricted as well. In May him and a friend are going to cycle from Cardiff to Holyhead, across Wales, camping on the way.
     
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  6. peggy-sue

    peggy-sue

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    I've always encouraged Michael to go out without me.
    (He'd go whether I did or not, so I might as well support him!)

    He's a bit more adventurous than I am and has this habit of clambering up vertical rock faces. :aghhh: I have tried it, I can really see the appeal, it's great fun... but I can't handle looking down, I'm scared of heights.
    Michael's not scared of heights. He's scared of hitting the ground too fast and too soon.:angel:

    Do other folk never get to the point with fog that they're hungry, they go to the fridge, open it... and just give up after staring at what's there
    because they don't know what to do with it, or how to do it, or what to get out?
     
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  7. Valentijn

    Valentijn Activity Level: 3

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    I have similar doubts about my onset. Although I was pretty functional until a nasty presumed virus with typical flu symptoms and some intense vertigo two years ago (happy anniversary to me!), I had a prior habit of constantly getting "sick" almost every time I had regularly scheduled workouts/tae kwon do/PE classes etc, starting around college time. And I never really had excess energy for much activity when working or studying full time.

    But then came an onset of intense disability with undeniable and consistent ME symptoms after the nasty presumptive virus. After recovering from it, I rode my bicycle downtown with a friend to watch a movie. Upon arriving outside the theater, I brought my bike to a stop, put my feet down and slid off the seat so I was standing up straddling it ... and very slowly fell over to the left. No sense of balance while it was happening, though I had no problem getting back up (aside from soreness from being partially crushed by a Dutch bicycle) or walking around. Then riding home after the movie I kept veering off the path. I was able to correct a few times, but then had to slam on the breaks to avoid landing in a water-filled ditch.

    This is why I don't ride two-wheeled devices anymore, and didn't even consider buying a motorized bicycle or two-wheeled scooter.
     
  8. peggy-sue

    peggy-sue

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    I never had a bike, and can't ride one, I split my skull open using a tricycle.
    A motorised scooter or even a 4-wheel thingy scares me too.
    Things on wheels come under the category of "Dangerous Projectiles" to me.:rolleyes:

    I think I'm a bit dyspraxic, I can't catch balls - I automatically duck when one is thrown at/to me. I do not even make an attempt to catch it.

    The thing I said about staring into the 'fridge while very hungry, but not being able to cope with deciding what to get out to eat, or what to do with it and just giving up and staying hungry

    was an illustration of how bad fog can get and it does scare me to think fo folk behind the wheels of cars in that state!
     
  9. Sea

    Sea Senior Member

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    I fully understand what you're saying Justy. Thankfully I have times when I am like this and times when I am not - and I know the difference. When my brain is not processing properly I am not even safe to cross the street on foot!

    I often have the experience of seeing an object which is only partially visible and it taking far longer than what is normal to work out what the object is. Something that should come easily and naturally takes concentration and quite some time. Once my brain "gets" it I am left wondering how something so obvious did not make sense straight away. I once had a dog (a labrador, completely non aggressive) who was poisoned by organophosphates (the same ones I was exposed to on our farm). He survived the incident but was neurologically damaged. He would wag his tail and show clear excitement at seeing someone, while at the same time growling with hackles raised. He confused many visitors.
     
  10. SickOfSickness

    SickOfSickness Senior Member

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    A lot of elderly people shouldn't be driving anymore, but they do because they don't want to be dependent on someone else, or they have nobody else. Some try driving slower and try being careful to help lower that risk. Some don't know they are unsafe.
     
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  11. justy

    justy Senior Member

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    Sea - your experience is so similar to mine with not being able to identify objects - thought i was just 'strange' Wonder what causes this - neurological after all!
    Like you, once my brain 'gets it' i can't believe i couldnt see what it was before - it seems so obvious.

    I also have this issue with moving things - cant always tell ifthings are moving if there is multiple sensory input. You know like when you are walking along and a car slowly starts to drive next to you, and you cant be sure if it is just you moving or the car - sometimes it makes me feel like i am going backwards!
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have some issues at night with not being able to process traffic patterns, but I think I have always had this as I "failed" the glare recovery test, even as a teenager. Thus, I avoid night driving.

    Here is a tip that helps me immensely during the daytime--also related to glare. I keep a baseball cap in the car and wear it whenever there is glare. (I also always wear sunglasses.) I angle the brim to block the glare (much easier than trying to adjust the visor all the time).

    Sushi
     
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  13. Sea

    Sea Senior Member

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    Sushi - the cap is a great idea. I'm going to use that! The car visor is of little use to me because I am short.

    Justy - yes I can relate to the difficulties with moving objects too
     
    justy likes this.
  14. beaker

    beaker CFS/ME 1986

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    There have been multiple studies about the effects of sleep deprivation and driving. The conclusion is that those w/ sleep deprivation are at least as impaired as those who are legally drunk.
    Here is one study or article on the study rather
    If you google sleep deprivation and driving you can get more. and on specific effects eg visual fields, coordination
    I read many of them at one point or another. sorry not up to getting the journal ref. for you.

    I would think it isn't too much of a leap to say that ME/CFS has similar effect.

    I became severely and acutely ill at the get go. Somewhere along the line my license was up for renewal and I was in bed. So it is long gone.
    and although not as acute or severe ( although still in the severe catagory) no way to do it safely. maybe not even a way to do it unsafely lol
    someday.............
     
  15. Kati

    Kati Patient in training

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    Speaking of driving... I just got a 60$ fine for parking in a disabled spot without posting my disabled placard. I forgot. i alsways remove the placard from the rearview mirror because it is obstructive while driving.

    60$ is a lot of money :((
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    And I just discovered that the univ where I am taking a class requires their own handicapped permit as well as the state permit! I never would have known (and would have gotten a ticket) if I hadn't gone to their disability to office to ask where the hell to park as all the handicapped places were always full.

    They then gave me a pass to a paid parking lot with more handicapped places--but if I hadn't asked....!

    Sushi
     
  17. Kati

    Kati Patient in training

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    The university can be a nightmare for parking since the different buildings stretch over blocks and parking is contained to just a few spots- I would likely need a scooter if I had business over there.
     
  18. Sea

    Sea Senior Member

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    :( Is it possible to send a letter requesting leniency Kati? It's sometimes worth the effort to send a polite letter and include proof that you do qualify for the parking. I've done that before (in Australia) and received a reply indicating that although I did do the wrong thing they would waive the fee, but not to assume leniency in the future should it happen again
     
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  19. Kati

    Kati Patient in training

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    Yes I have sent them an email (that's the best way to contact them to contest a ticket) with my disabled placard registration number.

    there was a man with a cane and with a pick up truck with a disabled placard, and he had been checking my car because I was parked illegally, according to him. There is only one disabled spot in front of the grocery store.

    i got into my car and retrieved my placard and showed it to him because I knew He was P.O. That I had parked there and that I didn't look disabled.
     
  20. Kati

    Kati Patient in training

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    And of note, there is a small business in town called "Driving miss Daisy", which offers escort to appoinments services. How cute for a name? It was certainly no limo services but I am sure it could come to good use.
     

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