Driving and CFS - help!

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Hi,

I'm new here and joined because I want to (hopefully) find out I'm not the only person with CFS/ME/Fibro who has had to give up driving due to feeling/being unsafe.

I've been ill for 10 years since having PVFS from glandular fever. I had a massive relapse in 2010 and haven't been able to drive since. The way I feel when driving, and even being a passenger is terrifying. My brain and eyes don't work together. Stuff is moving all around me and I'm powerless to respond. I just feel totally confused about where I am in space and time, sounds really odd but can't think of another way to describe it. I feel dizzy and off balance all the time, basically I constantlu feel drunk! It's awful. I've lost my independence. Worse still as I can't cope well being a passenger my husband shouts at me as I am contantly bracing myself for a crash and shouting watch out, thinking that every car heading around a round about is going faster than it is because my

judgement is gone. Basically I'm the worst back street driver ever! I hate it! But my body is just unable yo comprehend what's going on around me and is so sensitive to every tiny movement. I feel like this when just walking around as well - very off balance and everything swaying, my eyes don't focus on things properly as I move.

Please tell me I'm not the only one who

feels like this?! Many thanks, x

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  • Posted

    Have you seen a doc? Most of your symptoms sound somewhat treatable.  I have trouble driving, too, because I don't trust other drivers.  My friends or husband take me where I need to go.  At first, I felt like a huge burden but now I realize the world is safer without me behind the wheel!  Yelling, by either you or the husband is more likely to cause an accident than avoid it.  Take some deep breaths before entering a car and be mindful about relaxing while being a passenger.  It is hard, but you can practice while you are searching for an answer.  ignore everything while you are in the car.  Daydream, look at the scenery or watch the clouds.  It will give you and your husband less dread every time you know you have to go somewhere.  I know you have a real illness, but there are almost always alternatives to becoming calm on the outside.  Eventually, it will seep into the inside and let you be able to handle the stress you are experiencing.  Be kind to those around you (even if you have to force it...) because you need them and nobody likes to be a punching bag, even verbally.  I am sure you are not an unkind person but fear and confusion can bring out the worse in some.  Trust me, sick people need others but many are driven away (quite unconsciously) which will only make your life more miserable.  Chronic illness is hard on the person suffering but it is actually very difficult for those who care about you the most.  Be grateful for anything you can be grateful for.  Every morning before I rise, I go thru all the things I am grateful for even tho my life is very hard because of chronic illnesses, one person I am tremendously grateful to and for is my husband of 29 years.  I tell him every single day how much he means to me and I thank him for doing so many of the mundane things I can no longer do.  I am supportive, as he is.  We accept each other for what we each bring to the table and if there is any tension, we ask ourselves,will this be important in 2 weeks?  The answer is always a resounding NO, we laugh and go on with our lives.  Laughing is another great uplifting, free thing you can do anytime.  We literally laugh at everything and everybody (including ourselves!) and it gets us thru anything.  Lots of hugs are good, too.  Do you have these spells when you are in bed?  It isn't uncommon if you suffer from the dysfunction of eye/brain connection to turn over in bed and become very dizzy.  I know, great, the one place I thought I was safe!  Just know it is NOT YOU, it is a symptom of what is going on in your body.  Best wishes.  Keep us up on your progress.
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    • Posted

      Many thanks KMRC. Yes I sometimes get these dizzy feeling when turning over in bed. I'm normally very positive and see the best in things, I love laughing! I'm acutely aware of how illness can drive people away as my mum is chronically ill and can be hard work even if she doesn't mean to be, and can unintentionally put people off being with her. I don't want to lose people around me so try very hard not to be a burden. I find the whole car thing is involuntary, I only realise that I've over reacted after its happened.

      I've had shingles recently and it's knocked me right back down again and everything is harder than it had been and I'm finding I'm needing more help and that all these little things are getting to me again!

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  • Posted

    Google "Laura Hillenbrand A Sudden Illness." This will take you to an article in the New Yorker about Ms. Hillenbrand's experience with ME/CFS. In it, she talks about extreme dizziness. This is not an uncommon symptom, so you're definitely not alone in your experience. My specialist believes that ME/CFS is caused by an as yet undetected virus in the brain tissue. Thus all the weird neurological symptoms.
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  • Posted

    Hi there, sorry you're having such a hard time.  My husband has had severe ME/CFS and Fibromyalgia for almost 30 years now, and he was very much like you for many years.  In fact, he was completely bedridden for 10-15 years or more, but even after getting to the point where he was no longer bedridden, and he could get around a bit better, he still could not drive.  Not only because of the illness and all of the problems you mentioned, but also due to the many medications that he has to be on.  ME/CFS causes problems with blood flow to the brain, which seems to cause not only dizziness, disorientation, and the things you mentioned, but also, concentration problems, difficulty thinking etc.  and so I imagine anyone with a severe case of ME/CFS does not have what it takes to drive very well, and would be putting themselves and others is danger. The ones who can drive are very lucky, and obviously don't have as severe a case of the illness.  Since you are having these problems where you brain and eyes don't work together and your judgement is impaired, you may have to force yourself not to watch when your husband is driving, especially since you're not really seeing things correctly.  Knowing this fact, I suggest you look down and just let him take control at the wheel.  If you have to, put on an eye mask or sleeping mask, so you don't get tempted to say things to him that will make him mad and cause him to yell at you, because as you know, that just makes things much worse than they already are.  You need all the love and support you can get, as well as all the rest you can get, so consider trying this so your husband doesn't get mad at you, and he can give you the love and support you need during this difficult time of the illness.  Feel free to write to me at any time.
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  • Posted

    I too have PVFS after having glandular fever and cannot drive, also have friend with M.E. who cannot drive anymore. It wouldn't be safe. Might be worth checking with your doctor just in case you have any problems with your ears which can affect your balance though dizziness can just be a symptom of M.E. I have had dizzy spells too though not so bad now. I used to feel  weird sitting in the car too but am much improved now. There are lots of things you can do about it. The first thing I would suggest is to sit in the back or the car so you can't see the road in front of you. The next thing I would do is check when you are sitting that you don't have any clothes with a tight waistband digging into your stomach as this will restrict your breathing making you breath into your upper chest rather than your stomach area which can make you lightheaded. If something feels tight undo it (just remember to do it up again at other end). I realised can make a big difference after starting doing yoga and breathing exercises which have really helped me. When you are in the car moving youu could either look out the window at the scenery, or sit with eyes shut with headphones on and listen to relaxing music/relaxation CD or read a book/magazine, write a shopping list, doodle on bit paper, anything at all you find relaxing as a distraction to the movement of the car. Just let your husband do the driving (pretend he's a taxi driver!) and you do your own thing without comment and hopefully the journey will be a less stressful experience for both of you. Hope you find this helpful.
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    • Posted

      Many thanks Elaine. Good to hear from someone who is in the same situation and isn't able to drive. I'll try some of your suggestions.

      I did get referred to ENT a few years ago and had some extensive tests to eliminate benign paroxysmal positional vertigo or whatever it is called, but they determined this was not the cause of my issues. I've also had brain scans etc.

      They could tell there clearly was something wrong with my balance and co-ordination but didn't think it was to go with my ears. They recommended beta histidine, which I took for a long time but it didn't help at all so I stopped.

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  • Posted

    Hi Sleepysheepy,

    Bascially, I can relate completely to the state that you have described...  My only observation on my ME/CFS state, that I could add to that description, is that I feel like my memory goes...  Like from one moment to the next I don't remember the information about the previous moment and I get stuck, unable to act as all the pieces don't fit together because I can remember them all.  Or like I can't remember how things all piece together.

    I don't know if you feel like that...  It would be interesting if you did.

    Luckily, I don't feel like that often.

    I do hope that you get some relief from this it's horrible.

    Best wishes and support to you.

     

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    • Posted

      Hi dillemma

      Glad you get what I'm saying and yes I think I do know what you mean about the memory processing thing. I get that too - I think driving is an information overload - too many things to do and react to at once and it doesn't all fit together.

      That said I have a demanding job and am challenged all the time, and I'm not as sharp as I was and everything takes me a lot of time to deal with. I am not as good at giving presentations and lectures as I was because I easily get mesmerised with turning to look at the slides and then people listening whilst I'm having to think about what I'm saying all at the same time! However at work it's not a matter of safety if I can't process things (part of my job used to involve laboratory work but I stopped that when I got sick because again I wasn't steady enough to do intricate things safely).

      Many thanks ;-)

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    • Posted

      Hi sleepysheep,

      My cfs/me if from a car collision and I'm like you as a passenger. I find motorways the most distressing. I'm awaiting compensation for the crash and hope to get confidence building driving lessons as part of my claim. I am not good at present so am happy not to drive but, feel like you as a passenger. The hard thing is the amygdala is triggered which is trying to protect you-hence the bracing etc. With cfs/me the body seems to become over sensitized and everything gets over worked I feel thus, I found closing my eyes and laying back in seat really helped me on a long journey recently. I was shattered anyway but, not tired. Could feel my anxiety lessen and whilst less aroused, could actually tolerate the odd harsh braking.

      My initial symptoms were seen as ptsd and I'd say treat yours similarly? I.e., build up your tolerance of being In a car with husband, firstly-just sit with him In the car. Talk normally. Get out and go back in the house. It may seem silly but your brain Is saying its unsafe and you need to show it, its not. Next, short journeys. Little and often. Keep a diary to show yourself how you are doing.

      I had labyrinthitis some time ago which affected my balance, caused dizziness etc. It is a virus that attacks the inner ear. The symptoms would reoccur. When I had one bad flair up of that, it was found I had a deficiency of b12. Taking b12 basically got rid of the symptoms.

      Also, I admire you for being able to work while having cfs/me. I know that my eye and brain coordination are much worse when I do too much and lead me to feel very disoriented. Balance is the key. Balance between activity and rest.

      Hope this helps

      Best wishes

      Beverley

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  • Posted

    I have CFS and Fibro and mild narclopecy and I drive. I am on Gabapentin and Provigil. I also take Tylenol with Caffiene. I am always tired, but I control when I sleep. I sing in the car, that helps me stay awake. 
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