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Friday, 1 June 2018

Driving and M.E

Hello,

Foggy is on his way to China so I'm making the most of the peace and quiet. I'm writing this blog about driving because a few things have happened in the past couple of months that are worth mentioning.

I have always been proud of the fact that I am a good driver. I have had a couple of bumps since I passed my test over 20 years ago but none were my fault :) (One instance - My car was hit in a car park, it was parked and I wasn't even in it...definitely not my fault! lol) . I am particularly proud of my reverse parking skills. Portsmouth is a very packed in city with rows of narrow terraced streets, most households have two cars. This means we are the third most traffic congested city in Britain and have limited parking. So, you kind of HAVE to be able to reverse park into the tiniest spaces!

Let me stress  -I DO NOT DRIVE WHEN I AM HAVING A BAD M.E DAY. Payback often feels like a bad hangover, would I drive with a bad hangover? NO. I am aware of my limitations when I am going through a flare and so will not even think about driving. It wouldn't be safe. I only drive when I feel I am 'well enough' to do so.

I haven't driven long distances for years because it is too tiring so I am already limited to a 20-mile radius. Driving allows me to be independent enough to go to business networking, grocery shopping, seeing friends locally. I find walking to and standing at bus stops exhausting and can't afford taxis, so to me driving is the best option. It is the last remaining piece of independence available to me.

However, in recent months I have noticed that I have struggled cognitively on the few rare occasions that I have driven after 6pm. For example, I went to a networking event and felt fine but I struggled when I was about 30 secs from home on the return trip. I couldn't park.  I attempted to reverse park
15+ times. My brain simply couldn't work out which way to turn the wheel. There wasn't enough room to drive in head first. Fortunately, there was no traffic waiting for me to get out of the way. I had to run inside my house and grab my Dad to park my car. 

Last night, I drove for 20 minutes to go and see a friend ( I haven't been to her house before). I had my sat nav talking to me and the radio was on but down low. I felt fine and knew it was only a short distance so wouldn't be too tiring. However......  I accidentally got in the wrong lane (4 lanes merged and I was in the wrong one) and ended up on a 10 minute detour along a different motorway. Only to then miss the correct junction and take another 10 minute detour. I was starting to think I should abandon all hope of reaching my destination! I was concentrating so much on driving safely that the multi-tasking effort of knowing where I was going was too much. I'm fine if I know the route but if I am being guided by a sat nav for some reason my brain can't cope. I got there 20 minutes late but safe and sound and the drive home was problem-free.

I think it is important to note that M.E/CFS is not on the watch-list of the DVLA (Official body for driving stuff in the UK) . Since my diagnosis in 2007, I have queried many times whether I am able to drive with my condition and have always been told I am able to but to use common sense. I have lost count of the amount of times I have only been able to accept invitations after asking my Dad if he is happy to drive me/pick me up/pay for a taxi. It's annoying, I have a super-duper speedy sporty car sitting outside and I am not able to drive it as much as I would like.

I don't want the DVLA to add ME/CFS to its watch list but I feel it's another example of authorities not understanding the illness or being aware of its implications. Just an idea - maybe they could issue us with a cognitive test to do before getting behind the wheel. That said, fluctuations can often be hourly so although we may be fine on the outward journey there is no telling if we will be fit and able on the return journey. I have had to leave business events early before because I can feel myself running down slowly and I often have to say 'if I don't leave now I wont be safe to drive'.  Because you can't see M.E, I'm sure business acquaintances see this simply as a way to leave early!

Remember, I have mild M.E. Moderate or severe sufferers will have had to give up driving. It is a physical activity and so takes energy but is a cognitive activity too. Driving is difficult, that's why many 'normal' people struggle to pass the test in the first place. Anyone with limited energy/cognitive power is not able to cope with having so much going on at the same time!

Love,

Sally
and Foggy OBVIOUSLY
xxxxx


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