Blog the 5th - Part 1

Apologies for the title of this instalment - I'm certainly not the Bard of Avon or even really the Bard of Arrow (Redditch and surrounding area residents will understand......) but I thought that it was time to do a bit of an update. I want to start with some really lovely things that have happened this week. On Monday night, at just after 10 p.m, I was sitting in the garden looking at the incredibly bright half moon and realised that I could hear a Nightingale singing quite close by - we have a 250 year old oak just opposite us and I think that it was in there. In the 14 years we've lived here, I have never heard one - very unusual in this suburban setting. If only we lived in Berkley Square, I am sure that I could manage to get some sort of song together.....

One of the great advantages of my job is that it is frequently possible to work from home - a laptop, phone and internet connection are all that I need some days but the flip side of this is  that I don't get to see work friends as often as I would like. As most people know, I am known as "Snigel" in Gothenburg (Snigel is the Swedish for snail...and is possibly a comment on my running skills) so I was enormously touched to get a text message from a really good friend that said "check your private email - we've been thinking about you" (I was having yet another scan on Monday - carotid Doppler USS - which showed nothing!). Here is what they had sent - the R&D teams in Gothenburg and Karvina. Buggers, they made me cry.

• Forgive me friends for I have sinned - it is now two weeks since my last update. I have had a lot to take in and reflect on in that time and I wanted to process it before "going public".

• It turns out - having now seen a neurologist - that I am, and almost certainly have been, epileptic for a few years already, maybe as many as 4. I am now on 1000mg of Keppra twice daily and am certainly having fewer seizures - previously I was having up to 10 a day and now it is 2 to 3. So far I have not noticed any adverse side effects other than increased tiredness. I hope it will continue this way - titration is apparently always a bit difficult. At the time of writing - Wednesday 30th - I have had no episodes at all for 2 days.
• Having said that, I nearly lost it with a member of the Xxxxxxwide Building Society yesterday ("Brand New Customers Only") but I'm proud that I didn't (a well placed L heel stopped me in the nick of time). The 9 year old girl who had assured us that she could help us today spent 15 minutes demonstrating her inability to answer even the simplest of requests - such as "please can we make an appointment with the mortgage adviser" and who asked me "what was your name" to which the temptation to respond incredibly sarcastically took a lot of suppression. I suspect that lesions or no lesions the irritation level would have been high! Such larks!

• In terms of keeping going, I am gently upping my running training (but 10km is about my limit rather than the 20 I was doing regularly before) at a slightly reduced pace and also cycling. I'm keeping the mind alive by reading (work papers and news as well as books), doing crosswords, having regular phone conversations with work colleagues and going to assemblies etc at the school where I am a governor which is a 200metre walk away. I do still need to sleep soundly most afternoons though and some days are very much worse than others. I find it very hard to accept that I have been and still am (in my Doctor's words) "seriously ill."

• The "Lodgers in the Loft" are still not definitely diagnosed although the report describes them as "multiple white matter T2 hyperintense lesions". Meet some of them here:-

• At least I can now say that I do (or at least at one point did) have a brain! I'm seeing the Neurologist again on June 22nd and with any luck I'll get a diagnosis then. Multiple Sclerosis still looks as though it is in the lead but I have decided to stop speculating. Or at least try to! One observation is that the lesions are circular and appear to be grouped in clusters of 5 - if they are green then perhaps all that it means is that I am a company man through and through?? 

I am having moments of intense emotion, some great and some rubbish but I hope that my sense of humour is surviving relatively intact. Certainly, M & K have decided that the p*** needs to be extracted robustly. We had dinner with them on Friday and they decided to ensure that my "Julius Seizure" tag was strictly adhered to:-

I am still (frustratingly) signed off sick but I at least now feel that my epilepsy is pretty well controlled by the Keppra. I am absolutely determined not to adopt the patient role so I am in slight danger (I'm told) of overdoing it. Rubbish! Very much looking forward to the Jubilee Street Party on Monday next week - no doubt we will bask in standard English Bank Holiday weather.

Every day brings me and my lovely family closer to being normal (for us) and our wonderful circle of friends near and far is what is getting us there. And a trailer......