A Tale of Two CTs

Welcome to the second week of this journey in words. I really want to express huge thanks again for the astonishing amount of love and support we have been shown and also a huge THANKS to the team of "Nigel Minders".This week I have been minded by Neil, Becky, Katie, Phil, Auntie Lou, Lou, Jeremy, Auntie Sue, Craig and E. The only one missing was Dennis Waterman, but I bet he'd be ok to write and sing a theme tune...

The week would have been longer and a lot more boring than it was without them - and I am delighted to report that not one single minder held back on the Mickey taking stakes. Bless them. I have laughed a lot.
Of course, being me and being a nurse I sort of assumed that this week would see a return to pretty much normality but that hasn't proven to be so. I have had a number of "absences" which I now know to be petit mal seizures. The give away is that I smack my lips and pick at my clothes apparently!The main surprise has been how incredibly tired I have been. I have needed to go to bed shortly after lunch every day (sorry Jeremy...) and sleep for 2 hours. On the other hand, I have not had an unbroken night's sleep either, Saturday was the worst night's sleep in ages. Loads of dreams, not one of them nice - the worst of all of them that I was back in theatre scrubbing for a major spine but all my runners kept leaving me on my own with a contaminated sterile field, the wrong kit and no gloves...

Why the title? L. and I want to spend more time together but we weren't quite anticipating so much of it being in our Area Health Authority's various scanners!! L. is having a CT as part of her annual MOT so we will have sampled the one at home and the one in the main hospital between us soon. We will award points for style, presentation and technical excellence of course but so far the prize for sheer noise goes to the MRI scanner at the local! I had absolutely no conception (or as my dear old friend Seymour would have said, contraception) of how loud it would be inside it. My choice of baroque horn concerti beautifully played by the Tyslar brothers (yes, I like their Czech vibrato - a lot) didn't stand a chance. Anyway, that's why this particular blog is called  "A Tale of 2 CTs"....

I really want to maintain the positive and forward looking stance of the first blog but it's tough. At the moment I am finding it incredibly hard see beyond the stark reality of not being able to drive for 12 months and the crushing realisation of what this will mean for me and for us.Being able to "nip to the shops" etc is something that I will never take for granted again - but I bet I will! I knew it would be at least 6 months but having spoken to Epilepsy Action (http://www.epilepsy.org.uk/) 12 seems likely. Other restrictions are that I still can't be left alone, can't climb ladders (so my loft conversion study is out of bounds) and I am not allowed to run. I'm seeing my GP in the morning and I hope that some of the restrictions will be eased. I won't be started on any drug treatment before my EEG (8th May).

The whole thing is extraordinarily tough on L and E; neither of them are sleeping well either and I must admit I do feel a bit like that well known Intensive Care Nurse's Anthem by the Police - "Every Move You Make...."

That's enough moaning now. I feel very lucky to have such wonderful friends and family who have really meant it when they have said to let them know if there is anything that they can do. It is extraordinarily humbling. Musical talent has come to the fore and the rescue - my beloved wife has started a song (to the G&S "Major General" tune)....

He is the very model of a modern disability: epileptic, diabetic and he cannot hear a thing you say; He cannot drive nor eat your sweets nor listen to his iPod play. Too young for Saga, old for Scouts, few pleasures left- just eating sprouts...

Further contributions welcome. Truly, they will be!

Last night (Saturday) saw another minor milestone - went out for a curry with my friend Phil and E, where E out ate both of us! 2 starters, a main, poppadoms and a pudding.....

At least I haven't really missed out on my debut (Stratford) Marathon which should have been today, 29th April. Floods, fallen trees and missing marshals due to 24 hours of lashing rain and howling gales meant that it was cancelled at the last minute

I have come to the conclusion that I am Deafabetileptic? Any ideas for a better term?

This week, on reflection, has continued to be about being careful what to wish for (less travel, slower pace of life, see more of each other etc) but has also given me occasion to count my many blessings. OK, life might feel "over" in some respects but it most emphatically is not and I will overcome epilepsy in the same way that I have given diabetes a damn good thrashing. I will be back.....

And Finally....One of my minders, cousin Katie, is a sympathetic hospital Dr. She felt that my care needed a little revisit and started by redoing my CAT scan. It explains a lot......

Week One....

Well, I guess we need to be very careful what we wish for. It's been said many times before and no doubt will be many times in the future but last Sunday (April 15th) L - the long suffering current Mrs Snigel) and I had a free and frank exchange of views which centred on my propensity for choosing to be away from home so much in my leisure time (running, gym, playing in amateur orchestras, school governor, community orchard...). Most people reading this - at least at first - will know that I spend approximately 3 weeks in 4 away from home for work purposes and run around 35miles a week and play for every orchestra who asks!! Anyway, we determined and resolved to spend more time together.
Monday 16th was a day off which I spent partly at the allotment (going "aaaaaargh - SO many weeds") and recovering from Sunday's 21 mile run (Stratford Marathon on April 29th). I did the p.m. school run, took the cat to the vet (bitten tail...) and cooked tea before having an echocardiogram (ongoing tests) over in Solihull. Fell asleep on the sofa and went to bed at 1 ish. Woke up at 4, noted the time with relief (i.e. not 6) and went back to sleep. Came to at 5:30 in the arms of a paramedic being told that I had had a seizure. Told her - blearily but confidently - that I lived in Coughton and asked for my Mum. Left the one in 1984 and lost the other in 2000......
It seems that I had suffered a grand mal fit. Perhaps the panic/anxiety attacks I've been having for the last 18+ months were petit mal seizures? My GP certainly thinks so - as does the hospital consultant. At least the emergency CT scan - which L had to get quite assertive about - showed no sign of either bleed or tumour. MRI this week, EEG next.
This has been a week in which at one fell swoop I have lost all my independence. Well, I can still wash and toilet myself (but not with the door closed) and dress myself (I may look like a dog's dinner but 'twas ever thus). But - I cannot be on my own, I am not allowed to drive for 6 months at least nor ride a motorbike, I am not allowed to run until I get the all clear, nor fly ditto, playing the horn is "not advisable" (and anyway I can't get to venues on my own). So - we will be spending a lot more time together. Good thing we get on really!
How do I feel?? Grateful to be alive, grateful to live in a country with an excellent free health care service, grateful that this didn't happen while I was driving or in a hotel bed on my own and hugely grateful for my fabulous immediate family of L and the star 12 year old E. However I also feel bloody angry and fearful for the future. I beat diabetes and I will beat this but there are many imponderables right now. As I manage diabetes with diet and exercise but I can't run (at the moment) is my blood sugar going to destabilise? How long will it be before I can get back to work? Why don't I feel "ill"? I haven't really cried or shouted yet but I'm sure it will come.
Oh yes - on top of all of this I bit through my tongue and wet myself!
Careful what you wish for.