Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Problems Driving

Discussion in 'General ME/CFS Discussion' started by golden, May 14, 2014.

  1. golden

    golden Senior Member

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    When the Doctor tells me there is nothing wrong with me whilst handing me a sick note stating M.E. it certainly is a nuisance.

    I have never even thought to alert insurance companies in the past of my imaginary medical condition.

    Its been a couple of years I think off the road. I am wanting to drive again.

    I have been able to cycle in haphazard phases and have definately improved. One thing this has done is very slowly teach my brain about being on the road again.

    Some problems I have had when driving:

    * Spacial awareness a problem when overtaking and even though I have better than 20/20 vision I couldnt see properly when looking at the different mirrors and things whizzing about.

    * I couldnt work out anymore how to tell when i was going around a corner, if a cyclist was going to be there..
    I knew there must be an answer - but couldnt work it
    out.

    * When looking in my rear view mirror - i knew obviously that it was tge traffic behind me - but it was not automatic and i was having to remind myself of this as i was reversing tge information and my brain sometimes was registering it as in front if me.

    *i went through a couple if red lights (but caught myself just over the line, and i came to a complete stop at green lights - (my brain had automaticalky told me to stop at green and go at red)

    *i would get in the car and just forget where things are

    * whilst i might have been ok driving there - sometimes i was arriving at the car park and having to lie straight down on the passenger seat. It was a few times of this happening and people knocking on the window asking me if i was ok - that i had to climb in the back seat. Also sometimes i was stuck and had to sleep for hours in the back seat before i coukd get the far back home. (Not much fun)

    *i was hazy and not reacting at speeds i should have been reacting at after a while...

    * i was just forgetting driving rules and really having to consciously think about it

    *too much going on at once on the road was a nightmare.

    *when stuck in traffic jam couldnt manage physically all the stopping and starting - losing power in my leg muscles to clutch/gas repetitively

    *Triggering Adrenal stress.

    I find it difficult to voice my symptoms so will be interested to read of other peoples problems driving... and any solutions?

    I am never using a Tom Tom in my car again as I believe this adversely affected me.
    I am using cycling (when I am able) as a way to retrain myself in my goal for driving as I have not heard of any sort of support or help from the NHS in this capacity?

    Best#
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I quit driving about 2 years ago and sold my car last year. It takes an incredible amount of concentration to drive, among other things.

    It also takes quick reactions and muscle control, which you stated were problems for you.

    Although I could drive now in an emergency there is no way that I would casually.

    IMO, if you cannot drive without the aid of something to keep you awake or functional, it would not be advisable to drive. Not only could you hurt yourself but others. I mean if you read what you wrote re: all your problems, would you want you on the road?
     
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  3. amaru7

    amaru7 Senior Member

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    Thank god I am still able to drive, actually I'm a good driver and it all happens automatically for me like shifting, looking at the rear view mirror etc. I'm sorry I can't help you with your issue, cfs can be so variable for everyone
     
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  4. golden

    golden Senior Member

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    I am a very good driver :)

    I really am. But no, I woildnt want me on the road which is why i quit for now.

    This marks a relapse and times when I have been learning about my limitations etc. During remissions, then pacing driving carefully is certainly possible.

    But this is what happens when Doctors try to just get you to think positively and ignore your bodily symptoms isnt it. :(
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    Forget what the doctors tell you. You have to be the judge of what you can and cannot do. They just don't understand.

    Being a good driver in the past doesn't matter if you are feeling all you said above. You have to base things on how you feel now. I know there is no way I would get behind the wheel of a car given my current state. I have accepted, sadly, that I most likely won't drive again.

    This generally doesn't bother me since I'm housebound, but when I have to go somewhere then the hassle of getting transportation rears it's ugly head. I get rides to appts through my insurance and the last guy had not bathed in a week and then tried to cover it up with putrid cologne. I was gagging and had my head hanging out the window like a dog.

    I would just not worry about it now, get through this and reevaluate things in 6 months or so.

    I know it's hard. I think selling my car was THE hardest thing I've done since getting sick. I loved my car and had it for 20 yrs. The only thing that made it tolerable is that a friend, who adores his cars more than his wife, bought it.
     
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  6. golden

    golden Senior Member

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    This is going back a couple of years now. And the person in the car with me stated my actual driving was OK. But it wasnt ok to me, which is why i stopped. Unfortunately even when i tried to explain that i had started going throuh a red light, the professional tried to make light of it by saying we all do that.

    Cycling, i seem to be following everything very well currently. And there have been some testing moments.
     
  7. golden

    golden Senior Member

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    ah :( sorry for the loss of your car. Yes, at least it went to a good home.
     
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  8. minkeygirl

    minkeygirl But I Look So Good.

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    Like I said, people don't get it. I know when I talk or do things to the outside world I probably seem perfectly fine but they can't know the struggle in my brain or how it is so exhausting I can't even think straight.

    People just don't get it. Only we know how messed up our brains are. We have to be the ones to set our own limits. I think if the DMV could test our brains they'd take our licenses away in a heartbeat.
     
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  9. golden

    golden Senior Member

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    I wish the NHS would test my brain!!!

    The problem is that i set my limits and the doctors arent interested, who govern money and work, and a system tgat values pushing healthy people passed their limits to tge knackers yard.
     
  10. minkeygirl

    minkeygirl But I Look So Good.

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    Years ago they used to do SPECT scans to help but only those docs into ME/CFS knew how to interpret them. And our luck the scans would be normal and then what?

    I still get frustrated that my doc thinks my account of how limited my life is is subjective. I try not to care as long as she does the paperwork I need her to do to help me.

    Do you need the docs to understand you for you to get disability? Otherwise I wouldn't bother trying. I know the UK is pretty bad about ME/CFS.
     
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  11. golden

    golden Senior Member

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    Well one G.P. I approached and told i definately have a problem with wheat used this as something to go against me in my notes - didnt even bother checking me for Coleiacs Disease and fifteen years later i am positive 100% (the only thing i am 100% about that i have gluten intolerance) - even those tests can be faulty though.

    So yes, best listen to the inner doctor who knows best after all.

    Yes i havent been able to claim any benefits - apart from a three month period... And i got too ill to get through all the nonsense with ATOS.

    It would just damage me too much psychologically to try and fight my way through the system like you have to.

    Yesterday again I thought I am definately well enough to try for a sickness claim now lol

    I think i should be retired off as all i hope for is either a self employment venture (flexibke variable hours) or part time. I cant ever forsee working full time ever.

    But i dont think i will try again. I couldnt find any advocates last time.

    I am pleased you have a doctor who supports you where it counts most - on the forms and paper work.
     
  12. minkeygirl

    minkeygirl But I Look So Good.

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    They don't make it easy for sure but when you're up to it you should try to get what you deserve.

    As for my doc, we'll see. We just had a big fight a few weeks ago and I'm looking to change primary docs. She's changed a lot over the years and has turned into a real bitch. I don't need that.

    But going to a new doc is scary too. I have it down to 2. I have to find out if my NP will do my paperwork. She'll charge me for sure but worth it to have someone who gets it to help me.
     
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  13. golden

    golden Senior Member

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    I actually dont feel.like i deserve benefits.
    I havent paid much into the system and the only positive thing i can say is that i havent really taken any out either - which makes me feel good personally but i am very happy when i hear people are getting plenty of benefits and dont have financial worries...although benefits are so little .... There are still plenty of financial worries!


    I hope you get a really good doctor as this is very important.

    Sorry to read about the row - is there no way to work through this with your current doc? sometimes after a row - people often change positions...or perhaps see a new angle...

    Is she veing put under pressure by your government to get people off benefits?

    I think this is unethical for Doctors to diagnose by politics.
     
  14. minkeygirl

    minkeygirl But I Look So Good.

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    A year ago I asked her, my regular doc to run some labs. She did. Now she has thrown it in my face twice that she did it, that my insurance paid and she can't even use the labs to treat me. She is clueless about ME/CFS.

    Well I didn't hold a gun to her head. She could have easily said no. So shut up about it.

    We got into a fight about something else, she refused to take ownership that she said something even though it was in writing what she said.

    Also, at my last appt i was very hot, exhausted and wanted to show her something on my hand she was looking at. She got pissed and told me if I didn't stop, she would ask me to leave the office.

    Well screw her. I don't need to be talked to that way and the fact she was clueless as to how much stress i was under just shows.

    Plus when she is not there she has a horrible assistant who has twice given me RX's that were totally wrong for what the problem was so didn't help and wasted my money.

    I'm get ting pissed talking about this so I need to stop.
     
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  15. *GG*

    *GG* Senior Member

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    Likewise, how long have you been driving for @golden

    GG
     
  16. golden

    golden Senior Member

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    This all sounds appalling - asking you to leave the office too! What a bitch on an ego trip is right.

    I feel angry when i read bad experienxes like this as it must still resonate with me somewhere - the only way i can deal with it is to be free from it.

    Enough said. Hope you find a really good doc - compassionate, patient, knowledgeable and honest. They do exist so I have heard.
     
  17. golden

    golden Senior Member

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    I dont really know exactly.

    21 years i have held my driving license. And maybe a decade(ish) of driving? On and off.

    After a few years off driving, i started again and i noticed a majir difference in drivers. This is not subjective either.

    But the roads were more aggressive, fast paced and stressed. There was more road rage.

    I think when i feel ready, if i do, i will take an advanced driving course first as a refresher. I have already had my eyesight checked.
     
  18. taniaaust1

    taniaaust1

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    I was having actually sudden unconscious pass outs when upright and no doctor at that point got my licence taken away! and I was forced to drive unsafe (for centrelink appointments and others). They didnt care I was driving and just ignored me when I was saying it was dangerous for me to drive.. they obviously played down my issues due to me having ME/CFS.

    Irronically a doctor finally got my licence taken from me after I'd already stopped driving myself and sold my car knowing Im too unsafe. (He got my licence cancelled behind my back. I then went to a different doctor and got it given back to me. Its not like Im dumb and dont know that Im not safe to drive!!! I do thou even thou I got rid of my car and dont drive, I do want to hold my licence still for the day I recover enough to be safe to drive or that I could drive in an extreme emegency situation (It would to be a very ununsual extreme situation so is quite unlikely to ever occur).

    These doctors out there with their ME ignorance in which they tell people to ignore their symptoms, are putting people in danger. It wont be your doctor up for damages if you have an accident in the car. I have had car accidents due to the ME/CFS (back when I was having gov depts forcing me to drive to their appointments and not listening to me that I wasnt safe to be doing so).. it costed me a lot of money! (esp if you are as unlucky as I was and hit a new car).

    If you know your brain is being very slow to react to situations, you are like a drunk driver on the road and just awaiting for a disaster to happen. (it may not be you which causes an accident but the lack of being able to respond quickly enough to avoid another doing something dumb .. and that could be a little child running across a road in which you are too slow to break). With my brain how it is, I cannot instantly react to things... everything takes time for me to think over.
     
    Last edited: May 14, 2014
  19. taniaaust1

    taniaaust1

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    Same here, that was for me certainly as hard as having to leave my job. My car sat in my driveway still registered but not at all driven for probably 2 years, maybe longer before I could bring myself to sell it. (by the time I did sell it, it turned out it had issues as it had sat there not used for so long).
     
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  20. minkeygirl

    minkeygirl But I Look So Good.

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    That's exactly the problem I had @taniaaust1. I had the guy who bought it, taking care of it because I couldn't even get to the garage. I had to get it emission tested last year and I could not have done it.

    The guy who was taking care of it bought it and it did not pass. He had to do a bunch of stuff to it to get it to pass. If I didn't have to do that...

    I think if this guy had not bought it, I would have had a nervous breakdown. But he loves cares, wasn't going to drive it into the ground. He drove it by once after he had spent a lot on it and it looked beautiful. It was a year last week. :(
     
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