Enforced Carbon Neutrality and Other Impacts of Epilepsy.
Friday, 29 February 2008
InsanityIdeas.com / The Insanityideas Blog / Enforced Carbon Neutrality and Other Impacts of Epilepsy.

   About six weeks ago I had a rather unexpected trip to hospital following an Epileptic seizure when I should have been having a nice Saturday morning lie-in. 1 in 5 people will at some point in their lives have an Epileptic Seizure of some kind, and I am one of a growing number of adults that have their first seizure outside of adolescence. Like most of the people in this group I am hoping it will be a one off event rather than the start of a trend, six weeks seizure free is a good sign but by no means the end of the road. I had the normal suite of tests following such an event, these are CAT scan of the brain, ECG, and Chest X-Ray at time of event, I also had a needle in my arm whilst in hospital in case I needed drugs during a fit. As an outpatient I had a doctor's appointment, another with a neurology specialist, EEG, MRI scan of the brain and some trips to the pharmacy.

    There is plenty of advice on the internet for Epilepsy sufferers , and local support groups, but I could find precious few first hand accounts of what its like to be diagnosed, and adjust to the changes it makes to your life. I am writing this partly for myself, and partly for anyone else who is in a similar position, I don't claim it to be the best advice, or the most concise, but it is a personal opinion and few medical professionals will give you one of those.

    First off the practical impacts for someone who has experienced an Epileptic fit in the UK. You loose your driving licence for 12 months, no getting out of it, from the moment you have the fit your uninsurable so don't even think about driving. If you have subsequent fits the 12 month countdown gets reset. If your doctor thinks it likely you will have more fits then you will be put on anti-seizure tablets, so that's something you have to take twice a day, and missing a tablet greatly increases your risk of seizure. If you want to come off your medication, kiss goodbye to your driving licence for another 9 months. If you were a bus or lorry driver your licence is gone for longer, and you need to have a medical before you can get it back. Good news is that if you don't have any more fits at least you don't have to work out how to live with the condition. The bad news for young women is that pregnancy and epilepsy don't go well together, so you will need to consult your doctor well before getting pregnant.

    It was a bit tricky to insure a car I still owned, but was not allowed to drive, this became quite difficult as I don't have a garage and a quirk with insurance companies and theft only cover. In the end I transferred ownership to another family member who insured it as an extra car for their use, minimal extra expense and the full cover I wanted but could not get. As long as I return to driving within 2 years I keep my no claims bonus. Royal & Sun Alliance were very good about cancelling the policy and refunding the unused portion of the insurance without quibble. I can't do anything about the service and MoT the car had on the day of my seizure, it's the most tip top abandoned car in my street!

    There are some benefits, because you lost your driving licence on medical grounds you can get a free disabled bus pass entitling you to free bus travel after 9am (because local government doesn't think people with disabilities work). And a third off of rail travel with your disabled rail card, although you have to pay for the privilege of getting that card. You also get free prescriptions, for all drugs. Although if you happened to view your car as more of a third leg this will be of little consolation, and if you have no public transport in your area it will be of little use. If you used your driving licence for work, do some reading on the disability discrimination act!

    Ask your doctor about what you can and cannot do and the list of don'ts will be loooong, basically follow the rules and you will be living in a ball of cotton wool for six months. It's better to take a more risk managed approach to the whole thing, that doesn't mean just blindly carrying on as normal. It does mean assessing the likelihood of something bad happening and the severity if it does, and then deciding if you are willing to take that kind of risk.

    It can be difficult to make this decision shortly after your first seizure because you don't know if you will be susceptible to further seizures, so give yourself a bit of time to get an idea of how frequent they might be. Also bear in mind that some activities reduce the likelihood of seizure, and others increase it. It should be fairly easy to work out the severity based on the type of seizure you have, just use your imagination, and plan for worst case.

    This is by no means exhaustive but there is a lower likelihood of a seizure whilst you are drunk, exercising or on anti-seizure medication. Having a hangover, low blood sugar, excessive tiredness, stress, exercising to the limit and about a billion other things all increase the likelihood of a seizure. There is also a certain randomness to the whole thing, if your lucky you will feel it coming on.

    Based on knowing all of this I decided to go against my doctors advice and continue cycling 2 weeks after my seizure, although I took it easy for a while. The risk management decision is easier now as I have been 6 weeks seizure free, but back then it was a tougher call. Either way it will hurt if I have one on the bike, and it could be fatal, but I am at lower likelihood whilst riding my bike and I enjoy it too much to give it up. Plus if I can't drive how else am I going to get around!

    Despite this boldness there are lots of other areas where I have gone the other way, or taken sensible precaution, either because there is no impact to doing it, or because I don't have a strong enough appetite to take the risk. I don't take baths, I walk as far away from the edge of the road as possible, stand back from the kerb when crossing, keep at least 6ft back from the edge of train platforms (I am 5ft7 tall). Avoid standing on a chair or ladder unless absolutely essential, and certainly won't be doing anything above 3 feet. Occasionally I mutter when I see staircases with steel edged treads, very long flights or solid stone at the bottom, although I used to think such things looked attractive or were sensible.

    So with 6 weeks of hindsight where do I find myself? Now that there are no more hospital tests I can relax about it rather than considering it every day, I don't know the results yet but I don't dread them either. This is a condition that is very surprising, frightening and difficult to deal with when it happens, but in my case the health impacts are negligible. I hate paperwork and form filling, so I hated that part of the whole experience, there are many forms to fill! My commute to work now takes an extra hour a day but is more enjoyable. My fitness level is also improving, getting to work is either a 4 mile walk, or 13 mile cycle, that makes an immediate difference. I live in a big city I can easily live without my car, and I have done before now, but 6 months ago I would have been totally screwed as it was the only viable way of getting to my old work location.

    Conclusion: Many of us can easily reduce our car usage, its simply a matter of convenience and willpower. Positive lifestyle changes come in strange disguises, and aren't always choices. Having a flexible employer really helps.

   

    - I will be keeping notes on my experience of the carbon neutral travel experience in the UK, and making them available. At the moment its easy to see why many people are still stuck in their cars there are few viable alternatives. -

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