Day 103 has been a blast and seen 2 falls and a submission while cycling 16 miles and walking 2. I stayed awake ’til midnight last night. That is unheard of for me. Normally I’m struggling to stay awake past 10.00pm but I was frightened of going to sleep. What if my brain stopped working over night? It was silly I know but yesterday morning had been such a shock and so degrading for me that each time I closed my eyes all I could see was me bouncing off the walls of the bathroom half naked as I fought with my pyjama bottoms and wondered if I would ever get the brain working again. I had no wish to go back to that and the fear kept me wide awake. By the end of question time and the debate on the junior doctor strikes I decided to face my fears and get to bed as staying up was just going to make me more tired and therefore more susceptible to seizure activity. I locked up the house and went to bed. I prayed hard and must have fallen asleep as I prayed because next thing I knew I was switching off my alarm at 7am! I had a great nights sleep. I was dry. No night sweats. I stood up and raised my arms to the roof. Stood on tiptoes and stretched. Not only could I stand. I felt great!!
I bounced into James’ room and stirred the sleepy head. Tickling his feet as they appeared at the bottom of the duvet I made sure he was up. Knocked on Heather’s door. She was awake and up. Time to walk the dog but I was much later than usual. Once ready to go I asked the children not to wait for me but instead to crack on with breakfast. I shot out for a short 1 mile walk. Georgie was very stiff after yesterday but this would let her relief herself and be more comfortable. It was a crisp minus two degrees but a beautiful day dawning. I had some Euros to take to the school for the children’s school ski trip pocket money. I could go by bus. Or I could go by bike. The top road to Callander would be magical today.
Back home and children off to school I had breakfast, tidied up, checked the weather forecast and set about packing. I was going by bike. Top road over the Braes to Callander. I managed to pack much better this time and it was only on trying to leave that I had a little Brain freeze. Forgot the high visibility jacket. Unlocked the door. Fetched the jacket. Locked the door, got on the bike, forgot my phone. Got off the bike. Unlocked the door and fetched the phone. Three times this happened but with increasing frustration I managed to remember my helmet and lock the door. Black clouds were gathering over my head with the frustration of a frozen brain but as I mounted the bike and started with the crunching of the snow and ice under my tires, the clouds cleared, the sun came out and a huge grin burst across my face.
It was a beautiful journey with the mountains coated in snow and drenched in sunshine. The road was icy but the central bit where no vehicle wheel can go made for an excellent surface of snow and ice that gave for some traction. I kept the pace down and took it steady. Very steady. But still managed to have two falls on sheet ice but nothing serious. A few shouts of surprise as my bike slipped sideways and I with it and a mild bruise where the bike landed on my leg during the first fall but also a wake up call. I was toying with the idea of going on NCN Route 7 through to Strathyre after delivering the money but on even smaller tracks and paths than this road it was likely to be a challenge too far in these conditions especially on a bike designed for gentle rides along a good quality cycle track. Once in Callander I popped up to the school and dropped in the children’s money. Then back down to the town centre for lunch. The wonderful Deli Ecosse with it’s wood burner roaring away and inviting me in I went for – surprise, surprise, an egg mayonnaise sandwich with salad chased with a lactose free decaf mocha and a flapjack. Perfect. Fed and with the ends of my fingers warmed up I thanked Julie and the girls then popped next door to see Peter to ask about some kit. Just some simple questions that might make life on a bike more comfortable. I wasn’t a keen cyclist before the challenge so am learning all the time. Basically he and the other two customers and friends of Peters in the shop were in agreement. When Mountain Biking dress and equip yourself as you would for walking in the terrain in which your biking then add a layer to block the wind and keep your body and hands warm. Brilliant. I was on the right track with kit and didn’t need to spend any more money. But then what was I doing cycling in these conditions? they asked. That is asking for trouble. So when I enquired on the route through to Strathyre they laughed. No chance. Not with the ice as it is. You won’t catch anyone else out today unless they are on the main roads. I didn’t feel inadequate anymore after my falls. In fact they were I think quite impressed that I was out, or just thought me stupid! But once the ice has thawed however I am definitely going through to Strathyre and hopefully Debbie will come too!! I mounted warm and happy and set off for a slow 8 miles back over the top road. Now I knew exactly where that huge ice sheet is so should be okay. A couple of back wheel wobbles but made it with little incident. Job done and bike ride achieved in poor conditions I went home, sorted my kit, showered and changed the walked Georgie for another short 1 mile walk.
As I showered then walked the dog I reflected on some comments and misunderstanding that I have heard over the contents of the posts that I write; so would like to clarify something here as some of the comments were along the lines of ‘wow Archie you write really well.’ ‘What a fantastic imagination you have.’ ‘You should write a book!!’ Lovely comments to hear but they made me realise that some of the meaning of what I write is lost in translation.
When I started writing the posts they were only ever intended as a report on the day’s activity. If I ask people to kindly sponsor me 5 days a week, 4 weeks a month to undertake activity designed to try and help me to Beat the Beast I ought to report back on what I have been doing. I knew that I had to tell the story warts and all as it happens to me because that would keep the post interesting and informative. I then realised after a fortnight or so, from the comments and messages I was starting to receive that my story was providing hope, inspiration and encouragement to a growing number of people who had started to follow the challenge as they fought their own particular beast. This was very much because they were experiencing many similar experiences. So it became even more important that I told the whole story warts and all uncut but with nothing added. Nothing made up for effect. Nothing embellished because I would then run the risk of starting to become a novel with no meaning rather than a real life story that might help others to overcome their particular battles. And frankly I don’t need to make anything up. Some days I worry about what I might have to write in the day’s post because it was a quiet day planned but without fail, every day writes itself. Because of the way the disease has affected me, because of the amazing people I have met and what they have done for me or just the adventures or amazing things witnessed on the journey itself. The truth really is far stranger than fiction!!
So to put this in to context with regards to my partial seizures which on the whole manifest themselves in auras. Many, in fact most of them are incredibly unpleasant but some, like the Harry Potter aura in which it felt as if a being or life force or something was passing through me I found strangely comforting but sadly haven’t had this one back since the end of radiotherapy! The brain controls your senses. All of them. So during an aura everything I see, hear, smell, taste or touch is controlled completely by the brain and takes me entirely in to the world my brain is painting. Part of my brain is alive to the fact that it is not real but the inputs from the rest of the brain are so strong and real that you cannot help but respond to them. So for example, when I had the mouthful of eels that started to constrict my throat I was rushed to hospital by ambulance and thank goodness they did because as I came out of the loo in the hospital one of the eels slipped in to my windpipe and caused a massive gagging, choking seizure. I knew that an eel hadn’t really slipped in to my throat but hard as I fought it in my head my body was still thrashing around violently as I choked and choked and fought for breath. So violently was I fighting for life that the hospital nurses had to pin me down to get an intravenous drug in to my arm to bring me down off the seizure and oxygen back in to the system. My small conscious self knew that it wasn’t real but the rest of the brain and the body was convinced and so reacted naturally and in real time to the triggers. Exactly the same principal goes for the partial seizure during which I turned in to a lizard last Monday. I do not now think, even for one second, that I did actually turn in to a lizard. But at the time my tongue flicked in and out of my mouth like a reptilian tongue. I could even see the forked end of it as it flicked in and out, initially to moisten my dry lips, then my brain and body truly felt the weight of the reptilian scales being laid upon my body as I ran, stooping me lower and lower, until I was running on all four feet as a lizard. In that place, my small conscious mind was screaming to be released from this lizard skin but the rest of me was utterly convinced that I was a lizard. I can even remember seeing like a lizard or how my mind believes a lizard could see, and I remember involuntary movements and head twitches exactly like a lizards. Sadly no one has come forward to say that they saw me running through the wood on Monday to confirm it but if they had they would have seen me running in an increasingly crouching position until for a hundred metres or so before the turn down the hill running on all fours then skittering down the muddy hill in the manner in which I described on Monday. I was covered in mud after all that and that was why people were staring as I came down from the seizure but was still dazed and confused and remember genuinely twisting to look over my shoulder and round behind me, like a dog chasing his own tail, to check if my tail had fallen off, before I was eventually able to shake off the seizure all together. I wasn’t really a lizard but for those horrible few moments, maybe a couple of minutes, I may as well have been and the memory is sketched indelibly in my mind but by writing about it and telling the story in it’s whole truth, no matter how strange the truth may sound, no matter how much it might open me up for cynical cries of nonsense, it helps me to come to terms with what had happened and put the memory away in a box marked ‘Not Real.’ The memories are real but I know for sure that it was only a trick, a vicious trick, but a trick of the mind. Having a witness to them also helps considerably because it reassures me that what I had just experienced was actually just experienced. Like the incident in the Railway Carriage on the way back from a Radiotherapy appointment in which I had a déjà vu convinced that the train was about to have a most horrific crash. The argument with my two selves that ensued in the carriage must have been both comical and worrying for the other passengers behind me as I jumped in and out of the aisle of the carriage arguing that as the train was going to crash we had to go and warn everybody, while the other me, sat in the chair, tried to calm me down and reassure me that the train wasn’t going to crash. Sit down and calm down. As I came out of the aura I really wasn’t sure what had happened other than that something had just happened from the atmosphere in the coach. But I thought I had just had an argument with myself in my head. It was only when a lovely older lady came over. Sat next to me and took my hand seeking reassurance that the train wasn’t going to crash that I then started to learn from her what really happened. That Lady grounded me and reassured me because if she had not come up and spoken to me, over time as stronger memories of the aura started coming back to me I could have driven myself mad trying to decipher what did or did not happen.
I could go on and on about each aura or extraordinary meeting but the single point that I am making about my posts remains very clear. Nothing that I write in these posts is made up. It is the true story, as experienced by me, of a most extraordinary journey triggered by two diseases, the symptoms of those diseases and the treatment regimes that they required when brought together with the realisation of the journey I needed to take to try and Beat the Beast, the manifestation of my faith, the wonderful things that people have done and continue to do for me and the incredible things that I witness almost daily on my travels as I keep my eyes, ears and mind open. Wide open!!
I have had a good 5 days of challenge activity this week in amongst some very challenging moments but by keeping my eyes, ears and mind open I have been led through the darkness by the hand and in to the light. As the lady from Dollar implored me to keep doing in Stirling Bus Station. Keep fighting and we will Beat the Beast whatever your Beast is.
I am having a weekend off and so am not planning to write any posts until Monday. But you know me. Who knows what might happen!! Have a fabulous weekend but until you do:
The challenge in numbers in total since the start:
Days completed: 103
Total Miles Cycled: 571
Total Miles Walked: 527.0
Total Miles Run: 27.9
Total Miles Paddled: 7
Total Distance Cycled, Skied, Ran and Rowed in the gym: 8.4
Total Distance Swum: 500 metres
Total Miles covered under own steam.1141.8
Total Height Gained under own steam: 31,973 feet
Mountains Climbed: 5
Hills Climbed: 18
Days of Voluntary Activity: 6.0
Organ tunes learnt and performed: 5
Salmon Caught: 0!
Curling Matches played in: 4
Curling stones placed on the button (the centre of the target): 1
Weight Training Sessions: 8
Aerobic Circuit Sessions: 4
Press Ups: 202
Pull Ups: 51
Sit Ups: 202
People Met and Hands Shaken: 341
Pots of tea shared: 22
Prayers joined on the top of a hill: 2
Prayers joined in the street!: 3
Prayers joined in a Train Station: 1
Pills popped: 452
And most important of all – Money Raised as at Day 96 – £5,802.77.
Considering I started this challenge 20 weeks ago very quietly with no target beyond a fiver, thanks to the brilliant advice from a friend of mine, I am absolutely thrilled and again thank you all. So far that is £60.44 for each and every day that I have managed to find the will and energy to do something worthwhile and my goodness it has been worth it for my peace of mind, for my healing and for the five wonderful charities you are supporting through your generosity. Long may it continue. May I also ask however that if you are not sponsoring me to please consider it for as much or as little as you can afford. My rate of revenue raising has slowed from £70.00 a day to £60.00 a day so please sponsor me and encourage your friends to as well.
Thank you all for your incredible comments and support. Please continue to spread the word.
If you see me around do please give a cheery hello and shake my hand or toot your horn and give a cheery wave to show your support and encourage me on.
Thank you
Yours aye
Archie