This blog, my first and only one, started as a diary of my wonderful retirement,but very quickly became an account of my ups and downs with trigeminal neuralgia. If you do read it, don't feel sorry for me. There are people whose condition is much worse than mine. I'll let you know when to feel sorry for me.
Well, today is another good day with no pain. Any day with no pain is a good day. I’m just home from my Mum and Dad’s after a belated new year dinner and celebrating my dad’s 76th birthday as well. He’s a real warrior. He was diagnosed with Acute Myeloid Leukaemia in his early 50’s. and has had a torrid time of it over the years. His immune system has been badly affected resulting in regular pneumonia, his replacement knee went wrong and he is in constant pain, he has a problem with his lower back resulting in poor mobility and a whole load of other ailments too numerous to mention. If he’d been a horse we’d have shot him years ago. Like many people of his generation, he doesn’t know when he’s beaten. He was a miner and is probably one of the last remaining repositories of the mining folklore and humour in Ayrshire. He has always been a story teller of the highest order with a phenomenal memory for detail. A number of people have been at him, myself included to get these stories down on paper or recorded, but he is not keen on the idea. Why, I have no idea, but I suspect that it may something to do with the fact that they may not come across with the same impact in print as they do with the spoken word. It’s a shame, but it’s up to him.
Having been a morning person for most of my life, I suddenly find I cannot get going, despite the fact I am averaging 10 hours sleep. When I was still working I could manage on five to six hours. I think the reason is partly due to my medication and largely due to my bedtime dose of Amitryptiline. I am seeing my Doc next week so I'll discuss it with him then.
TN appears to be well settled at the moment. I'm only experiencing a mild crawling sensation on the left side of my scalp, so mild it's barely noticeable.
There's nothing else worth commenting on; weather miserable, the snow has now turned to rain and there's a heavy, cold wind getting up. I still haven't managed to find accommodation in Bath and I should be looking for somewhere in the Canaries for a Spring break but can't be bothered.
I took the outside Christmas lights down today while my wife saw to the internal decorations. I think she got the best of the deal as it was bitterly cold with a few flakes of snow in the wind. Now that I've been feeling 'better' for some time, we have decided to use some hotel accommodation vouchers we we were gifted for Christmas to visit the City of Bath for a couple of days. It should take us just over six hours to drive there which is no hardship as I enjoy driving. The journey is an opportunity to enjoy some good music and chat. I must remember if we get stuck in a traffic jam or lost, it's not my wife's fault :-) I hope to get the accomodation booked in the next couple of days.
I received some bad news through Facebook last night that a former colleague had died after a 'short illness'. He was my Bar Officer in the early 90's and was one of the most competent and capable cops that ever worked for me.
On the TN front, I have a very mild burning sensation on the left side of my scalp. It's not unpleasant; in fact if it was on the whole of my scalp, I probably wouldn't even notice it. I also have an odd feeling of tingling numbness on the left side of my tounge. Is there such a thing as 'tingling numbness'? Again not uncomfortable, but both things together let me know my TN is alive and well.
Yesterday's dinner went well and as usual it was great to have the family together even if there were a few members missing. I slept well last night and awoke this morning to find that the left side of my scalp and face had a strange crawling sensation, as if something was moving under my skin. It is not painful or even unpleasant, but I think the sensation is suppressed pain. Now, I could be way off the mark with that assessment, but while I was in hospital the last time, each attack of severe pain was preceded by a similar sensation to that which I have now. I am inclined to think that the medication I am on is preventing a full attack of pain, but is not preventing the trigger sensations in the various nerves affected by TN.
Well, a new year has arrived and I have the family arriving later today for dinner. I suppose I should take a moment to reflect on the year that has just passed. If you gave me a second to think about it, I would put it down as a bad year simply due to TN, hospital admissions, the pressure my wife has been under with both me and her parents etc. However, if I sit and really think about the it, there are far more good things than bad. For example, a new baby granddaughter, family holidays, seeing my eldest granddaughter change from a baby/toddler in to a wee girl, now age 3, who can dominate a conversation, the hundreds of games of golf I played (badly), photography outings and so on. The point I am making here is that its pointless feeling sorry for myself as, when all things considered, I've had a pretty good year and most certainly better than many.
In terms of my meds, I'd rather not be taking them, but my TN is still active, again usually when I'm drying myself after a shower. The sensitivity is nowhere near what it was when I was admitted to hospital and in my mind there is no doubt it is due to the medication. So ever the pragmatist I'll stick with it meantime.
I just noticed that every time I groan or wince, my wife nearly jumps out of her skin as she immediately assumes the TN pain has worsened. I must remember this!! The following video clip of Billy Connolly entitled the Worst Pain Known to Man made me laugh. It may offend some, in fact it may offend many. So be warned!!!
I just arrived home from Glen Trool. The weather was miserable, in fact so bad I didn't manage to take a single photo (taking photos is the reason I go walking). As I ascended Ben Yellary, the mist and low cloud became heavier to the point where visibility was down to about 10 to 20 yards. It then started raining so I decided to call it a day. On the up side, this was my first proper hill walk for some time and my fitness was considerably better than I expected. I met some people as they came down from the Merrick, which is where I would have headed if the weather had not been so bad. They said the approach to the summit of the Merrick was dangerous with ice so they called it a day and headed back down. The pictures below are of the Merrick and Ben Yellary from some time ago (on a good day).
TN not an issue during my outing and I feel really great.
I experienced a couple of sharp stabs of pain on the left side of my scalp while showering and drying myself today. The sharp edge returned to the pain, not enough to make me cry out, but enough to start me thinking that I am heading down the road to severe pain again. Due to the nature of my TN over the years, I have never been sure if it was the medication that settled the pain or whether it just settled down of its own accord i.e. a type of remission? One thing is for certain, at the moment TN is not restricting my life in any way and weather permitting, I hope to get out for a good long walk tomorrow.
Other than a small hint of pain (dull at edges) when drying my hair the other day, nothing worth talking about. I'm fully organised for Christmas, rather my wife is fully organised for Christmas despite having surgery on her knee last Friday. I managed a trip to Loch Doon for some photographs, talk about a winter wonderland. It was absolutely beautiful and, -11 at 2:30pm. Seven miles along an uncleared single track road in a rear wheel drive car was not so good though. So, seasons best to anyone who reads this and a sincere hope that next year is better than this one, even if you had a really good one this year.
I had another flash of pain in my eye last night while eating. It wasn't enough to cause me any distress, but enough to frighten me in to thinking the longer boughts of pain would return. It was same as last time, there, but with a dull rather than sharp edge to it. So maybe the drugs are working to keep the bigger attacks supressed. The photo below is something I had been wanting to do for a long while, but lacked the necessary skill.
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