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The ‘learning curve’.

September 9, 2012

Everything about this illness, from coming to terms with the limitations to dealing with the limitations, its all been a vast learning curve. With each new hardship or task I have to face, I step back and think it through before proceeding, in an attempt to find the most ‘pots-friendly’ option. Some decisions haven’t been the best and others have gone without a hitch and I have managed to cope well with said scenario. The decisions that didn’t go so well I put down to experience; all part of the ‘learning curve’.

Most recently (when it came to driving again) I wisely went on my parents insurance to try it out before spending my own money on a new vehicle. First impressions were great; providing my pots wasn’t too bad, then I coped rather well with driving again. Eager to get driving again, I set off with my parents to view some cars. Unfortunately I wasn’t feeling great at the time and by the time we reached each of the garages I was far too potsy to trust myself test driving the vehicle, so dad kindly did the honours.

Eventually we found one and I bought it. The following days saw a return of the stomach infection so I had to leave it to my parents to collect etc. When I felt better and went for a drive I suddenly realised my mistake in not test driving it myself… the clutch was heavy. It suddenly dawned on me that my parent’s car quite literally has the lightest clutch in the world, so light in fact that you wonder its actually connected to anything. Within minutes of driving my new car my EDS in my left hip and knee were on fire.

I tried not to let it get to me and over the coming weeks I tried everything I could to deal with the pain and attempt to ease it in anyway possible: sitting closer, sitting further away, taking it out of gear so I didn’t have to sit with the clutch pressed down at lights etc. But no matter what I did, even short journeys left me in a lot of pain…

Two days ago I was going to head out with my parents for a walk at our local woods. My knees and hips were no more sore than they would be on an average day, so I opted to drive. We came to the junction that leaves the green where I live, I looked left and there was a car coming from quite a way up the road – plenty of time to pull out in front of it. I pressed the accelerator and lifted the clutch as you would to find the biting point and pull away, only, my joints just collapsed on me and my leg flew off the clutch pedal, causing the car to immediately stall and jump forward into the road. Now in a great deal of pain I was faced with the approaching car and no option but to dip the clutch again, select reverse and get the car out of the road, but in agony my left leg gave way on me again.

Fortunately it was only a small country lane and the approaching car had slowed down and managed to pass in front of me, but it shook me up. With no warning my joints had just given way on me… I couldn’t help but think, what if that had happened pulling out onto a busy road? I could have caused a serious accident. I only got back behind the wheel on the condition to myself that I would not drive if my illnesses put me at risk to myself and other road users. Long story short, I just can’t trust my joints to drive a manual car anymore.

I have not been in my car since, and have spent the last couple of days thinking long and hard about where to go from here. My only option is to get an automatic. I simply don’t want to risk my knee giving way on me again, and it will also solve the problem of major joint pain after driving.

Sadly I will most likely lose out on money having just bought it, but theres no point having something sitting in the drive that I am unwilling to drive. It’s another learning curve, albeit an expensive one.

  1. I follow your blog and get e-mail updates.. I just finished reading this and I feel your struggle I am so sorry that after looking forward to getting back behind the wheel that your body was like AHHH no! I have had POTS for 2 years and along with mine I have some form of seizures I also can’t drive and I miss it so much. I’m here for you. I am looking forward to the cars that drive themselves do all disabled people can drive!! Whoohoo!!! I hope your doing better. ~ C

  2. Im sorry to hear this liam, i wish you could find more quality of life but im in a similar situation. I have a car but seldom use itas im not well enough and well…. i have nowhere to go other than drs appointments when I always take a chaperone.

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