To post or not to post, that is the question.

I have not made this achievement public knowledge until now. Only a handful of friends, and of course my family, know about it.

In May this year I started to try to get back to driving. I passed my test at 17 years old but in October 2010 I had become too ill to drive. It led to me having to leave my beloved job as a nanny. I also lost my independence. I had always loved driving. Absolutely loved it! It has been hard to be ‘driven’ again but if its good enough for K-Middy, I suppose it’s good enough for me!

We live in a small village on a quiet, private road and so for months I would have a go at driving up and down once a day, when I could…getting my arms and legs back into the swing of things…getting my brain used to be alert the whole time I’m in the car. After a while my body adjusted to cope better with this new task and I was able to include ‘driving’ in my baseline targets* by the end of July, with some ups and downs inbetween.

In August, after months of practising on our quiet road, I reintroduced myself to traffic and would drive to the next village and back until I could manage it everyday without my brain or body throwing a hissy fit.

After a while I could manage to drive, on a real road, and listen to music at the same time!!! This was a big deal people. All I ever wanted was to be able to drive by myself again and listen to my music as I drove along. If this is as good as it gets for me then I can cope with that. It is a dream come true. There were tears of happiness the first I managed it.

My long term goal is to be able to drive myself somewhere and then do something when I reach my destination, before driving myself home again. Whether its collecting my own prescription from the chemist, driving to a postbox to post a letter, or going to see my friends. I managed the last one once last year. My brother was my co pilot and he drove us home afterwards. It was all too much too soon though and World War III broke out between my brain, body and I. This time we’re working together at a pace seemingly suitable to all three of us. A very, very slow pace.

I was in two minds as to whether or not to share this post but maybe it shows how complicated our lives are. Nothing is straightforward. Nothing at all.

To share such an achievement in the past has led people to believe that I am better. They then can’t seem to understand why I am not able to lead a normal life and do normal things. They are confused when I still have to cancel plans at the last minute or have to turn them down outright because I have other plans made for the week after and can’t afford to overdo it. They can’t understand why I say I’m still poorly despite being able to do such a normal and ‘straightforward’ thing such a driving. I know that I wouldn’t understand it either, had I not become the sufferer of an invisible illness. Getting back to driving is a huge deal for me and my family, but it is ultimately just a drop in the pond. A tiny step along the long road of recovery.

Remember my illness is ever-present. I never have even a minute of freedom. My vision is constantly blurred and fuzzy and out of focus. My arms and legs feel extremely heavy and weak. I am usually in some kind of pain. I always feel nauseous and so very, very exhausted. There is the feeling of being out-of-sorts/malaise and the cotton wool brain never goes away. However over the last two years I have been extremely lucky to experience some progress and improvement, however slight. The brain fog has improved although it is still there all day every day. With this improvement I am more aware of things and much more alert. Even if I had been physically strong enough to drive, I could not have done until this neurological improvement occurred. It wouldn’t have been safe. My limbs are physically stronger than they were before. They don’t feel it, but they must be for me to be able to drive. I do not feel any better than I did in that dreadful first few months in 2010, but I am able to manage my condition better and I am able to do more than I could back then.

Some fellow sufferers might think I am being naive and looking at my life through rose-tinted glasses. They fear it will all come crashing down around me after I have exerted myself to reach these goals. It may do. It has before. But it will be what it will be. I am sensible and I’m finding my own way, using the advice given to me by the CFS clinic and the things I have worked out for myself.

For the last month or so I have been able to drive for 10 minutes almost everyday. If I could do a celebratory jig I would! I will probably not extend my little journeys until the new year. It doesn’t do to push for improvement too quickly. I have worked extremely hard both physically and mentally to manage and maintain this goal. Blood, sweat and tears, but all the while working with my brain and body for as not to trigger a revolt. It is always, always about balance.

*Baseline targets are the things I aim to do everyday regardless of how poorly I feel, for example: get out of bed, shower, get changed, use the stairs, make my own drinks, and now go for a drive, whilst never pushing my body too hard to achieve them. (Of course on my worst days when I am confined to bed these targets aren’t met but that can’t be helped.) Baseline targets are used so that I avoid the boom and bust cycle, where one blows all of ones energy on a day out, then is terribly poorly so rests to recover, then blows all of ones energy on another day out, then rests to recover…

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