After the Casablanca episode, I decided that I wouldn't write another blog. This is it.
I'm going to be brief, well as brief as I can be, because I want to put a lid on this before 2012 ends in my neck of the woods. Personally speaking, 2012 has been a year that - on balance- I am heartily glad to see the back of.
The high point for me was the Olympic and Paralympic summer - inspiring all round and it would be wrong to single out any one athlete but - as a runner - Mo Farah was my personal throat killer! I've never yelled so much at a TV in my life.
Seizure Moment. Well, I am now stable on Tegretol & Clobazam. Keppra didn't suit me at all, in fact amplified some of my symptoms. I have a definite diagnosis of epilepsy. Believe it or not, that is a positive. I like labels. The brain lesions? Of no consequence it would seem other than the number of them - almost certainly knackered blood vessels dating back to when my diabetes was undiagnosed and therefore largely uncontrolled. And my days as a smoker. I knew it would be my fault. Of no consequence though? I have my doubts. Significant chunks of my memory are impaired which is a pain and a worry.
Anyway, assuming that the Occupational Health Doctor gives the green light (on Thursday 3rd Jan) I will be back at work on the 7th.
The utter and total shining jewel in my year was my 50th birthday complete with - completely - surprise party in the evening. I thought that we were going out for a meal - just the 3 of us - to the extent that when the first few guests arrived, I apologised to them for making a wasted journey because we were on our way out! Well done my (devious) lovely L - my rock, inspiration, soul-mate and pal. I wouldn't be here without you.
So - 2013. I'm looking forward to you, and at least now I have a real reason for nodding off in meetings! I don't know what shape my job will be, I do know that travel will be much limited and I am determined that I will be the best at whatever I do.
Except for running. I will still run as much and as far as I can and still aim not to finish last in races. 2, 252 miles run in 2012 - 111 fewer than 2011. 7 races already entered - could 2013 be the year of 3,000 miles run?
Good night and may your God be with you
Monday, 31 December 2012
Sunday, 15 July 2012
Casablanca?
Everyone (mis) remembers the film Casablanca for the line "Play it again Sam" which was never actually spoken. The actual lines were these:-
"Play it once, Sam, for old times' sake, play 'As Time Goes By'." (Bergman)
"You played it for her, you can play it for me. ... If she can stand to listen to it, I can. Play it." (Bogart)
You must remember this
A kiss is just a kiss, a sigh is just a sigh.
The fundamental things apply
As time goes by
The words of the song seem particularly resonant to me as I sit down to write my ramblings today and I'll get to why in due course.
On the 28th of June I started to make some notes for this blog, intending them to become deathless prose mixed in with pithy observation, barbed wit and gentle self deprecation with an overall feeling of positivity (is that even a proper English word?) and I hope that some of that will still be true.
I am very lucky because, despite various delays and time-lags, I do have access to decent and free health care. I really don't want to keep whining on about my bad luck when other people - including some very beloved friends - are experiencing far worse than I am. Nevertheless, I don't like what epilepsy is doing to me and has already done to me and my family. Until April 17th, I thought epilepsy = fits = medication = no fits. I have learned much since then and the distillation of that learning is that it is a far more complex and much further reaching disorder that I had understood. It has led to foul moods, wildly exaggerated emotional responses to things - particularly music - that move me and the feeling that not only am I not me but that I don't really like the person that is me very much when he is lacking full self control. I worry terribly that shouting and stomping about when the shouter/stomper is 180cm and 91kg must be very scary for my lovely family. I wasn't expecting that to be a symptom of epileptic disorder but it's at its worst when pills are due and within 45 minutes of taking them I feel like "me" again. I really hope that the old chilled out Nigel will eventually return - I don't like the current one at all. I want to divorce him.
At least I know it is epilepsy and not something else because the anti-epileptic pills stop the aforementioned symptoms!!
The reason I started "blotting" (my word - blog+jotting) on June 28th was because that was the day of "The Storm" in my little bit of England and I wanted to share it with you all. When it hit I was cycling - what a laugh! At a few points the flood water was so deep on the road that I couldn't actually see my pedals but I had to keep going. Falling off into a metre or so of water with a newly repaired and just collected watch in my panniers was not an option. However, when a van driver decided that he was going to steam past the line of stationary cars waiting at a flooded junction without considering that another vehicle (me) might be turning into it from the major road, an involuntary dismount was inevitable.... As a result of this "meeting of minds" I desperately want a good and non-epileptic rant in the Rhod Gilbert style, about van drivers... Should I? As cycling is now my most frequent means of transport I am beginning to refine my personal classification of other road users - at the top of the thoughtless list at the moment are Jaguar drivers, followed closely by vans and peroxide blondes in open top Mercedes.
All the rain reminds of dancing around in torrential downpours in the garden when I was a child. It's OK, we lived pretty well in the middle of nowhere...... Sadly, this habit didn't go down too well when I moved to Warwick though - posh there! And I was 24...
The Olympic torch relay came through on July 1st and my spirits were hugely lifted by the really fantastic atmosphere. I hope that these two snaps convey a little bit of how it was - this bit of home is usually completely empty at 9 on a Sunday morning!
![]()
![]()
Other things that have had me laughing and enjoying life since the last set of witterings have been a couple of pure gold comedy moments on the telly - Mrs Brown's Boys and Father Ted in one evening. Dear oh dear!!! And a spectacularly good "Mock The Week" on Friday. A response to a dirty phone call in "Mrs Brown" of "if you can hold it in one hand, you can fecking keep it" had me in bits.
Oh - and I managed to silence a tele-marketeer for the first time ever like this:-
"Could I speak to Nigel Braithwaite please"
"Speaking"
"Hello. Would you like to pay less to heat your home? Well, with......"
"Sorry, can I interrupt you there? I'm afraid I don't have a phone"
"----------"
Click......
Sorry to those of you on Facebook who've already seen this but I enjoyed myself with it...
Also due to Facebook (such a waste of time I am told) I managed a personal best (PB) 5k following a bit of remote winding up from an ex colleague. Surgeon....
I've started using my Disabled Person's Bus Pass and am rapidly discovering that public transport for anything over a mile or two is pants. Actually, "rapidly" is definitely not the right word!!!
Had a great surprise at a "last Night of the Proms" style gig last weekend. The performance was in what can only be described as a "rough" town, one whose heart has been ripped out by planners and the collapse of the mining industry, but the scantily clad and tattooed 17 year old mum in the front row of the audience really enjoyed the concert - I know because she told me so. She sang along to all the patriotic songs and seemed to love the experience of being practically in the horn section. Sometimes it's easy to groan about playing familiar old warhorses of popular pieces but they should always be attacked afresh - it might have been my 500th "Land of Hope and Glory" with a live orchestra but it was her first and she loved it. Think on.
I did, however, miss the Aldworth Philharmonic Orchestra's Beethoven 9 where I was due to be playing the "big solo" on 4th horn (on the natural horn) which made me rather sad, but the section kept me posted (and beat me at on-line Scrabble rather too often for comfort...!).
If I can't get to the music perhaps the music could come to me? L's idea - some sort of Worcestershire Brass Ensemble. Listening to a Philip Jones Brass Ensemble (PJBE) record on vinyl (how quaint)("is that a big CD Daddy?") brought back lots of memories of good times and fun. Any takers?
To the point Nigel, get to the point...
Anyway to the reason for quoting from "As Time Goes By" and the title of this blog. I've now plucked up the courage to talk about Wednesday (11th July) just gone. It doesn't really sound much but I forgot my PIN when I came to pay for my few bits of shopping. The thing is, I have always had an extraordinarily good memory and particularly so with numbers, so forgetting this one (and in fact all my other PINs) hit me very hard. After giving my shopping back and the embarrassment I felt about doing that I came out and phoned L. At this point I realised that it was 25 minutes later than it should have been and that somewhere between grabbing my backpack and noting the time (12 noon) and leaving the shop (less than 1km away), 55 minutes had passed. Which means that I had had a 15 - 20 minute absence at home ( a later converstaion revealed that a neighbour sighted me walking to the shop at 12:30) before I set out - I should have guessed that something had gone on because my thoughts were rather disorganised all the way to the shop including a very intense feeling which I can only describe as the opposite of deja vu in that I could not recognise a single thing in my own road and felt that I had never been there before. Which means that I am not "better", and my GP agrees and has signed me off until September. I'm also finding that my memory - joking aside - is becoming increasingly unreliable. Damn it.
Until the next time everyone, thanks for thinking of me and thanks for being there when we need you.
From the reworked WW2 "keep Calm and Carry On" series
Those That Can, Do
Those that can't, start a Blog and moan about it
"Play it once, Sam, for old times' sake, play 'As Time Goes By'." (Bergman)
"You played it for her, you can play it for me. ... If she can stand to listen to it, I can. Play it." (Bogart)
You must remember this
A kiss is just a kiss, a sigh is just a sigh.
The fundamental things apply
As time goes by
The words of the song seem particularly resonant to me as I sit down to write my ramblings today and I'll get to why in due course.
On the 28th of June I started to make some notes for this blog, intending them to become deathless prose mixed in with pithy observation, barbed wit and gentle self deprecation with an overall feeling of positivity (is that even a proper English word?) and I hope that some of that will still be true.
I am very lucky because, despite various delays and time-lags, I do have access to decent and free health care. I really don't want to keep whining on about my bad luck when other people - including some very beloved friends - are experiencing far worse than I am. Nevertheless, I don't like what epilepsy is doing to me and has already done to me and my family. Until April 17th, I thought epilepsy = fits = medication = no fits. I have learned much since then and the distillation of that learning is that it is a far more complex and much further reaching disorder that I had understood. It has led to foul moods, wildly exaggerated emotional responses to things - particularly music - that move me and the feeling that not only am I not me but that I don't really like the person that is me very much when he is lacking full self control. I worry terribly that shouting and stomping about when the shouter/stomper is 180cm and 91kg must be very scary for my lovely family. I wasn't expecting that to be a symptom of epileptic disorder but it's at its worst when pills are due and within 45 minutes of taking them I feel like "me" again. I really hope that the old chilled out Nigel will eventually return - I don't like the current one at all. I want to divorce him.
At least I know it is epilepsy and not something else because the anti-epileptic pills stop the aforementioned symptoms!!
The reason I started "blotting" (my word - blog+jotting) on June 28th was because that was the day of "The Storm" in my little bit of England and I wanted to share it with you all. When it hit I was cycling - what a laugh! At a few points the flood water was so deep on the road that I couldn't actually see my pedals but I had to keep going. Falling off into a metre or so of water with a newly repaired and just collected watch in my panniers was not an option. However, when a van driver decided that he was going to steam past the line of stationary cars waiting at a flooded junction without considering that another vehicle (me) might be turning into it from the major road, an involuntary dismount was inevitable.... As a result of this "meeting of minds" I desperately want a good and non-epileptic rant in the Rhod Gilbert style, about van drivers... Should I? As cycling is now my most frequent means of transport I am beginning to refine my personal classification of other road users - at the top of the thoughtless list at the moment are Jaguar drivers, followed closely by vans and peroxide blondes in open top Mercedes.
All the rain reminds of dancing around in torrential downpours in the garden when I was a child. It's OK, we lived pretty well in the middle of nowhere...... Sadly, this habit didn't go down too well when I moved to Warwick though - posh there! And I was 24...
The Olympic torch relay came through on July 1st and my spirits were hugely lifted by the really fantastic atmosphere. I hope that these two snaps convey a little bit of how it was - this bit of home is usually completely empty at 9 on a Sunday morning!
Other things that have had me laughing and enjoying life since the last set of witterings have been a couple of pure gold comedy moments on the telly - Mrs Brown's Boys and Father Ted in one evening. Dear oh dear!!! And a spectacularly good "Mock The Week" on Friday. A response to a dirty phone call in "Mrs Brown" of "if you can hold it in one hand, you can fecking keep it" had me in bits.
Oh - and I managed to silence a tele-marketeer for the first time ever like this:-
"Could I speak to Nigel Braithwaite please"
"Speaking"
"Hello. Would you like to pay less to heat your home? Well, with......"
"Sorry, can I interrupt you there? I'm afraid I don't have a phone"
"----------"
Click......
Sorry to those of you on Facebook who've already seen this but I enjoyed myself with it...
Also due to Facebook (such a waste of time I am told) I managed a personal best (PB) 5k following a bit of remote winding up from an ex colleague. Surgeon....
I've started using my Disabled Person's Bus Pass and am rapidly discovering that public transport for anything over a mile or two is pants. Actually, "rapidly" is definitely not the right word!!!
Had a great surprise at a "last Night of the Proms" style gig last weekend. The performance was in what can only be described as a "rough" town, one whose heart has been ripped out by planners and the collapse of the mining industry, but the scantily clad and tattooed 17 year old mum in the front row of the audience really enjoyed the concert - I know because she told me so. She sang along to all the patriotic songs and seemed to love the experience of being practically in the horn section. Sometimes it's easy to groan about playing familiar old warhorses of popular pieces but they should always be attacked afresh - it might have been my 500th "Land of Hope and Glory" with a live orchestra but it was her first and she loved it. Think on.
I did, however, miss the Aldworth Philharmonic Orchestra's Beethoven 9 where I was due to be playing the "big solo" on 4th horn (on the natural horn) which made me rather sad, but the section kept me posted (and beat me at on-line Scrabble rather too often for comfort...!).
If I can't get to the music perhaps the music could come to me? L's idea - some sort of Worcestershire Brass Ensemble. Listening to a Philip Jones Brass Ensemble (PJBE) record on vinyl (how quaint)("is that a big CD Daddy?") brought back lots of memories of good times and fun. Any takers?
To the point Nigel, get to the point...
Anyway to the reason for quoting from "As Time Goes By" and the title of this blog. I've now plucked up the courage to talk about Wednesday (11th July) just gone. It doesn't really sound much but I forgot my PIN when I came to pay for my few bits of shopping. The thing is, I have always had an extraordinarily good memory and particularly so with numbers, so forgetting this one (and in fact all my other PINs) hit me very hard. After giving my shopping back and the embarrassment I felt about doing that I came out and phoned L. At this point I realised that it was 25 minutes later than it should have been and that somewhere between grabbing my backpack and noting the time (12 noon) and leaving the shop (less than 1km away), 55 minutes had passed. Which means that I had had a 15 - 20 minute absence at home ( a later converstaion revealed that a neighbour sighted me walking to the shop at 12:30) before I set out - I should have guessed that something had gone on because my thoughts were rather disorganised all the way to the shop including a very intense feeling which I can only describe as the opposite of deja vu in that I could not recognise a single thing in my own road and felt that I had never been there before. Which means that I am not "better", and my GP agrees and has signed me off until September. I'm also finding that my memory - joking aside - is becoming increasingly unreliable. Damn it.
Until the next time everyone, thanks for thinking of me and thanks for being there when we need you.
From the reworked WW2 "keep Calm and Carry On" series
Those That Can, Do
Those that can't, start a Blog and moan about it
Monday, 25 June 2012
Great Expectations (??)
Hello dear friends.
Here is the blog that I said that I wasn't going to write, but lots of people have asked me to do it.... So here it is - apologies if it makes for hard reading. I can't really find the flow today, so please bear with me!
As so many of you know, I was seeing my consultant last week. I had great expectations of my appointment because - after seeing him privately - I came away from the consultation expecting that the next time we met he would have reviewed my MRI scans himself and had them reviewed by a neurological radiologist and would be in a position to advise me regarding work, activities and my future having acquainted himself with:-
I was really, desperately, hoping that this (NHS) consultatation was going to give me a diagnosis - but it hasn't. Yes, my MRI shows multiple lesions but no - it hasn't been reviewed by a panel yet. In fact, the consultant himself admitted that (despite his promise when I saw him as a private patient) he had not looked at my scans or indeed any of my results.
Perhaps my expectations were just too great. Larks were not had and - truth to tell - have been in rather short supply recently.
Is it natural and understandable to be disappointed by this? As an ex NHS employee myself, I do understand the immense demands placed on experts but I am, however, extremely perturbed that it will be at least 4 months before I see him again.
What doesn't seem to be being considered is that I am an extremely active person both at work and out of it, perhaps more so than the average 49 and-a-half year old. I have already "defeated" one disease. Prior to my diagnosis of type 2 diabetes in October 2006 I was overweight (18+ stone) and physically inactive, but I now exercise every day – running an average of 25 miles a week as well as other exercise as regular readers of "boretheworldwithmyrunningstats.com" will know.....
Since the seizure, I find it hard to run more than 10km (6.22miles) and my pace is considerably slower than it was – up (down??) from 8m30s per mile to 9m15s per mile. Running is an extremely important part of my life and it doesn't really help to hear "Gosh - 10k?? I couldn't run 10 metres!!" because I could and was running 10km 3 or 4 times a week and 25+ on long run days!!. My (obsession with???) exercise and attention to my diet means that I am now drug free in terms of diabetic control. I have been accused of being a bit OCD about it by one or two folk.....
I have had so much support and cards and messages of love that I still feel utterly overwhelmed.One wonderful quote sent by a dear friend says a lot "Prayer is not a spare wheel that you pull out when you are in trouble. Use it as a steering wheel, that keeps you on the right path throughout your life". Whether or not you believe in the power of prayer, I like this concept and the feeling behind it.
Blog 7 - when it comes - will be a positive and joyful one. I promise!!!
Here is the blog that I said that I wasn't going to write, but lots of people have asked me to do it.... So here it is - apologies if it makes for hard reading. I can't really find the flow today, so please bear with me!
As so many of you know, I was seeing my consultant last week. I had great expectations of my appointment because - after seeing him privately - I came away from the consultation expecting that the next time we met he would have reviewed my MRI scans himself and had them reviewed by a neurological radiologist and would be in a position to advise me regarding work, activities and my future having acquainted himself with:-
- The results of my blood tests
- My head scans (CT and MRI)
- My previous medical history
- My EEG findings
I was really, desperately, hoping that this (NHS) consultatation was going to give me a diagnosis - but it hasn't. Yes, my MRI shows multiple lesions but no - it hasn't been reviewed by a panel yet. In fact, the consultant himself admitted that (despite his promise when I saw him as a private patient) he had not looked at my scans or indeed any of my results.
Perhaps my expectations were just too great. Larks were not had and - truth to tell - have been in rather short supply recently.
Is it natural and understandable to be disappointed by this? As an ex NHS employee myself, I do understand the immense demands placed on experts but I am, however, extremely perturbed that it will be at least 4 months before I see him again.
What doesn't seem to be being considered is that I am an extremely active person both at work and out of it, perhaps more so than the average 49 and-a-half year old. I have already "defeated" one disease. Prior to my diagnosis of type 2 diabetes in October 2006 I was overweight (18+ stone) and physically inactive, but I now exercise every day – running an average of 25 miles a week as well as other exercise as regular readers of "boretheworldwithmyrunningstats.com" will know.....
Since the seizure, I find it hard to run more than 10km (6.22miles) and my pace is considerably slower than it was – up (down??) from 8m30s per mile to 9m15s per mile. Running is an extremely important part of my life and it doesn't really help to hear "Gosh - 10k?? I couldn't run 10 metres!!" because I could and was running 10km 3 or 4 times a week and 25+ on long run days!!. My (obsession with???) exercise and attention to my diet means that I am now drug free in terms of diabetic control. I have been accused of being a bit OCD about it by one or two folk.....
I particularly need to find out what the 30+ lesions shown up by my MRI scan mean – as it is obvious to me and various (fully medically qualified) friends and colleagues that something is not right with me. I am often unreasonably angry, I cry a lot at very little provocation and I feel fuddled much of the time. I, and my wife, know “me” and this is not normal for me. If it is all down to the epilepsy I can accept that, but I need to know.
So, although it now seems very unlikely to be MS, a diagnosis of mitochondrial disease is looking increasingly probable - it is rare but I tick a lot of boxes! MELAS looks the most possible. http://www.mitochondrialncg.nhs.uk/index.html
Infection and infarction are now ruled out.
So, still no real idea what these lesions in my brain actually are although it would seem that they may actually be completely insignificant! Not to me they're not... The epilepsy though is significant - and it is neither under control nor "going away". The truth, often hidden behind my/our "brave face" is that I am sick of not being at work and of being told "you'll get better soon" because that isn't really a likelihood (but I do appreciate hugely the sentiment behind saying it). Getting better may not be an option but gaining control will (yes it damned well will) happen. I am not a very good patient at all and I find it very hard indeed to be worried, fretted and fussed over. I just want it all to stop. Not knowing exactly what is "wrong" with me is hard work for me, and my friends and family. What really terrifies me is that I will not be able to cope with the same dignity that so many others have shown if this thing turns out to be life ending. Infection and infarction are now ruled out.
I have had so much support and cards and messages of love that I still feel utterly overwhelmed.One wonderful quote sent by a dear friend says a lot "Prayer is not a spare wheel that you pull out when you are in trouble. Use it as a steering wheel, that keeps you on the right path throughout your life". Whether or not you believe in the power of prayer, I like this concept and the feeling behind it.
Blog 7 - when it comes - will be a positive and joyful one. I promise!!!
Wednesday, 30 May 2012
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.
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 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......
Monday, 14 May 2012
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
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
Monday, 7 May 2012
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.
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.
Sunday, 29 April 2012
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......
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......
Subscribe to:
Comments (Atom)