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......

Lodgers in the Loft/Trash in the Attic

Welcome to the fourth instalment of my blog - and thank you for taking the time to drop by and have a look. This one is a tough one to write for reasons which will become obvious - I need your love, friendship, prayers and support more than ever right now. Well, when I say "I", I mean "we". It's been very tough on L and E this week, as you will read.

On Tuesday I went to WRI for my EEG. The technician was lovely and it turns out that she occasionally did spinal cord monitoring when I was in theatres with AGT correcting various spinal deformities. For those of you that don't know, the idea of cord monitoring is to send electrical impulses from one end of the spinal cord to the other - the idea being that missing or abnormal readings may indicate that the spinal cord is being compromised by the straightening of the spine itself. Much less upsetting for all concerned than partially waking the patient (usually quite young) and asking them to wiggle their toes halfway through a major procedure. We had a bit of a laugh about how monitoring failure was always her fault rather than AGT's for cutting through an electrode... Bit like that well known phenomenon of the anaesthetic bleed - always because the blood pressure is too high and never as a result of a surgeon making a hole where a hole should not be. According to surgeons anyway!!! She warned me that the strobe lights may induce a seizure. They didn't but the nystagmus I've had for 49 years stopped while the lights flashed! Normal? Me? Perish the thought!! Some epileptics get an "aura" before a seizure and this is often a smell of food - particularly frying onions or toast. I smelled toast very strongly. Turns out that the EEG room is right next to the staff kitchen - not an aura but actually toast. Sometimes things ARE what they seem. To ensure that the electrodes record properly, they are stuck (through the hair) to one's scalp using highly saline hair wax/gel. This is "easy to wash out" but "may take a couple of washes". Now for the science bit and NOT simply because you're worth it. The gel/wax is indeed water soluble, It was raining quite hard when L and I left the warm and dry environment of WRI which means, dear reader, that I can reveal that this product could very well be called "Foaming Gel". I got to the car looking like a pint of Guinness.....Cue for another song perhaps - "Gonna wash that gel right out of my hair". Oh, and in combination with Body Shop shower gel, it seems that it can turn grey hair to a fetching pale green...... ("Gonna make my grey hair green" perhaps??)

On Wednesday I had a real treat. I went to work with L and got to listen to the orchestra rehearsing a brand new violin concerto and Beethoven's 3rd piano concerto. Lovely. While sitting in the auditorium though, I felt a bit odd and could see that L was looking at me with some concern from her place in the (fabulous) orchestra. I realised that I was lip smacking and zoning out so - after thieving some of the band's coffee - I came home a bit early and had a kip followed by a nice 5k run.

Thursday was filled with fun! Adam, from the UK southern head office came to see me. It was great to see him and catch up and he told me that they had all contributed to a “little something” for me. Well, I am speechless (a rare occurrence)!!!! What a great set of gifts – I love them. A steam train jigsaw, a combination stool and tool bag so that I can sit comfortably while weeding the garden or allotment and a wooden crate (pale green) with "SNIGEL'S ALLOTMENT" stencilled on the side. I have looked at the jigsaw and plan to start it this week (I’m not an anorak. I don’t recognise the station, the loco or any of the train crew…) and yesterday I used the stool while potting on my courgette and pumpkin seedlings! As soon as I harvest anything at the allotment I will be using the crate. Said crate fits my bike trailer - which arrived earlier in the week and was assembled with a tiny bit of demotic Anglo Saxon - perfectly. Adam and I laughed a lot and ripped the business world to shreds between us whilst reminiscing about the good old days - which was very nice in many ways but especially as I was once (briefly) Adam's boss!!!

Which - via a few absences, episodes and zonings out, some nice runs, lots of visitors and a good many laughs amidst the sheer fright of it all brings me to Friday 11th May. Duke, my old springer spaniel, would have been 36 if he'd lived - and if he HAD done so I have no doubt that he would still have thought he was a puppy. I do find it hard to believe that I'm not in my mid twenties still with an endless vista of optimistic years ahead of me. However..... and sometimes, as now, there really is a limit to my ability to keep looking on the bright side and finding silver linings.

We were due to see Dr B in the MAU clinic at 12 and were there in plenty of time. At 12, he came out of the room and said "I'll be back in a few minutes". "Charming", thought I. "Here's me waiting to find out what's going on and he's decided to do something more important". Anyway, around 10 minutes later he was back and we went into the room with him. On the screen was an image of a brain (axial MRI for any anoraks reading this) and L said "is that N's brain?" "yes". "Oh s**t," we said "that doesn't look too good does it?". "I'm afraid not"...

I have multiple abnormal structures in the frontal lobe of my brain. There were a number of bright white blobs or hot spots that really shouldn't have been there, 10 or so of them and distributed across the right and left sides of this bit of my brain - probably around the size of a piece of risotto rice each. There is GOOD news - they are highly unlikely to be malignant. In the 10 or so minutes that Dr B was away, he was consulting with the neurology consultant, under whose care I now am. This is what we have been told and what we now have to try to manage:-  I do have epilepsy but it's a symptom of a disease rather than a stand-alone diagnosis. . The next step is to find out what these structures are and if they are treatable. My positivity is not high right now - at least until the diagnosis and the future are clear - apparently there are around 300 things it could be but the most likely are Multiple Sclerosis, Cerebral Vasculitis, Tuberous Sclerosis, Occlusion secondary to detached carotid atheroma debris or vascular dementia. Whichever way you look at it it seems pretty bloody bleak . I have been started on an anti convulsant drug – Keppra (Levetiracetam) 250mg BD rising to 500mg BD in two week’s time. These have a list of side effects that looks like War and Peace but the one I have noticed is a kind of blissful languor! Quite nice really....

We have decided that these things are either lodgers in the loft, (lunatic) asylum seekers or hyper reactive transposition centres (only found in horn and trumpet players - maybe exacerbated by B flat basso...). At any rate they are very definitely "Trash in the Attic" and I am praying that David Dickenson doesn't decide to see if they have a value.

The silver lining is proving elusive this week although I am confident that it will eventually be there. As I have said, we don't know what the abnormalities actually are or exactly how long I've had them - just that they are there. The neurology team are taking me on "urgently" - we hope that that will mean some sort of resolution within the next week or so. I promise to keep you all posted for as long as I can!! If I start writing drivel (more so than usual) please do let me know.....

Signing off for now - see you next week

Run Time Error

Another week passes and something has started to concern me slightly... That is the previously everyday and often mundane events, occurrences and activities that have assumed tremendous personal significance. Having a bath. Being alone. Running (oh yes, running again!! more on that later). I have made progress but I still need to sleep for an hour every afternoon.... Or is that just my advanced age?

The week started on Monday as it frequently does. I had to see my family doctor who signed me off for a further 4 weeks, giving "epilepsy" as the reason - the first time that this has actually been written down by a doctor in relation to me. He told me to expect to be off for longer, which is something of a blow to me - I am aching to be back at work - I don't think I'd really realised how much I se my job as defining and validating me as an individual of worth. It's a very good thing that I don't work for a fast moving IT company - wouldn't understand a thing when I eventually returned! In my particular area of the medical devices industry there is a good chance that I will not be too far behind when I do eventually get back

I mentioned silver linings in my last blog and I talk about them all the time now. It is not just idle wordsmithing although I now think silver lining is not always enough in situations like mine - amidst the dark clouds of  whirling emotions, black thoughts and worry have been some truly golden linings once again. As a result of seeing the GP I no longer need 24/7 "Nige Watch" - I am obviously growing up a bit and can be left on my own (although with hourly check ins) in the day and Joy of Joys!!! I am allowed to run again!!!!! My amazing L has decided to keep me company and is doing really well as devoted FB followers will know. In 5 runs she has gone from 1 mile with stops to 3.53miles/5.63km. Again, Facebook has revealed at least one person who is delighted that I am able to post updates on #Boreeveryonewithmyrunningstats.com again - she knows who she is! Don't change M.E. - I love your acidic wit.... Other truly wonderful moments have been that we and I have rediscovered a number of friendships - people we don't see all that often who have taken the trouble to contact and visit us and to - once again - offer their very real help and support.

One great side effect has been an "eFriend" becoming real friend - I met my running coach in the flesh after many months of eCoaching. She rides a Ducati (yellow 748...), has competed in off road motorbike sport and is a multi athlete. One email contained the line "hurdles, long jump, triple jump, high jump, hammer, shot and 800m to be tackled. May be a wreck on Sunday". I am sure that she wears her underpants outside her trousers..... Sometimes when you really connect with someone it's very hard to realise that you have only just met. On top of that she is an equine expert which has delighted E no end!

I've had a lot of thinking time - probably too much really - but it has given me a lot of time for reflection. Someone once said that the Internet is an evil designed only to distribute pornography. Well, like any other mass medium, it is open to abuse (there are pornographic mosaics and wall paintings in Pompeii and the Pyramids and most porn is still in magazines when all's said and done) but various forms of digital instant communication have been my lifeline this week The power of email, FB, Skype, text and mobile phone texts to reduce isolation, loneliness and - I freely admit it - terror has been incredible. I have had so much understanding, empathy, remote teasing (eTeasing???) from my many and well loved friends from all over the world, all of which have been enormously energy giving. I also seem to be keeping local florists in business for a third week. I do love flowers. Further highlights of the past seven days have been a rather splendid Jasmine green tea package - thanks guys. I love it and the its senders, every time I have some I get a warm glow because it makes me think of them. Have I mentioned flowers as well? The living room and kitchen would qualify as entrants for "Britain in Bloom"

E's School concert was on Thursday and I was so glad to be able to be there. It was phenomenal - I'm sure that they were never that good when I was in them. All parts were excellent but one truly outstanding alto saxophonist - hard to believe not 18 yet. The orchestra kit drummer upheld the noble tradition of looking at the audience, in fact anywhere other than at the (at one point, frantically gesticulating) conductor...

My monthly Report was SO easy to write!!

I've ordered a bike trailer. No, not one to put it in but one to put shopping etc in and then be towed behind a push bike. I'm really looking forward to using it when it comes - especially at allotment harvesting season. Perhaps I should get a striped shirt and a beret too?? I'm absolutely determined to regain as much independence as possible and may also get a folding bike so that I can commute to and from hotel and office when I'm in the UK - maybe even visit customers!!! I'll run this past Adam, who is visiting on Thursday. My embryonic plans of getting a tandem for school runs were dealt a death knell by a) the cost and b) E's strongly delivered assertion of “over my dead body Dad!".  Joking aside though, this is still the toughest aspect of the restrictions and the one that is going to be the hardest to manage.

Emotionally, it's been a real rollercoaster again. The simplest things can provoke extremes from hysterical laughter to - at least twice - uncontrollable sobbing. When that has happened, I don't really know for whom I sob, yell or laugh at - me, "stuff", absent loved ones or just because my brain chemistry and electricity are messed up. All the sources say that this will happen but it doesn't make it easy for me or my immediate family, It's not going to be easy this journey but sharing it via the pornography distribution medium (passim..) makes it a whole heap more bearable. When that fails, I can rely on brilliant sympathy from my dear friend Alan B who has suggested that I take a bath and he comes round with laundry, washing powder and a strobe light to save his washing machine and that if I ever come on the bus I can disguise the event by faking a fit......Etc

We are still devising/reworking songs. In addition to the (still in progress) G&S spoof we now have:-

BoSeizurean Rhapsody

Is this my new life?
Is this my destiny?
Caught by a brainstorm,
Blue lights to A&E
"Open your eyes",
I tried, I tried to seeee
I'm just a poor boy, I need no sympathy,
Because I'm easy come, easy go,
Never high, often low,
Any way the wind blows doesn't really matter to
me, to me
Mama,
I just had a scan,
Put electrodes on my head, pulled a lever
by my bed

and

Once, twice, three times afflicted...

and

I want to ride my bicycle....


The community orchard/green Maypole/May Fayre was - despite the persistent drought which held off for long enough for the dancers to wrap and unwrap the maypole twice - a great success. It was 5 degrees colder than Christmas day (8 C) but that didn't seem to matter at all. I realised yet again that this "thing" of mine has some unforeseen consequences - various chunks of my memory are clearly awry. The example today was that I had a fairly involved conversation with my old primary school teacher (who would be 90+ now) without ever wondering how she could also have been E's primary school teacher 2 years ago. When I realised that I had done this I despaired quite a lot.

On the basis of "careful what you wish for" I am trying very hard not to hope that this is not epilepsy.

And finally. I have enjoyed the company of Blackbirds, Starlings, Dunnocks, Jackdaws and Bluetits on the lawn while I have been sitting in the kitchen but the prize for cheek goes to a very fine Magpie who helps himself to the outside cat's food. At times whilst said cat sits there and lets him get on with it!

Bye for now, hopefully see you all soon.

Love is magic, I am lucky to be the recipient of so much of it.