Day 106 has put real meaning to Susie Marshall’s lovely comment of 2 days ago in which she wrote ‘Thank you for reminding me how special a normal day is and how much it should be appreciated.’ I no longer feel normal and my goodness the radio and chemo recovery has sucked me back down to earth hard. I woke after a heavy night sweat with a really strange memory in my head. A post to write. As I woke my head was writing it. It was all about the successful catch of the Salmon and the cleaning of it and cooking of it over the log fire next to the river. It was a lovely memory and therefore a lovely and very colourful post except for one thing. It never happened. I am certain that I have never caught a Salmon. A trout yes with my grandfather as a young boy. But never a Salmon. Yet the image was so strong as I woke It took some time before I was convinced that it was just a dream. Clearly therefore it was a rather unsettled night and I was having to work hard to keep myself grounded in reality. To avoid slipping into a seizure. 

It was time for a walk. I took my anti seizure pills, jacket on, dog poo bags, lead and head torch I took off. I decided to avoid wading through the water at the edge of the ponds. My lips were fizzing again. It wasn’t worth the risk. Instead I went round the woods past the cricket pitch and the site of an old roman fort. A good walk that saw things settle. Not perfect but starting to feel a bit better. The guys from the council were out gritting the pavements and doing a great job of it. I said good morning and in doing so turned to look behind me while walking. I didn’t fall over! That was a good sign. 

Back home I sat to have breakfast with the children and James impressed me with his knowledge of the composition of a water molecule. It reminded me of a joke that I thought was quite funny and relevant as based on a chemical formula. When a dog laps water it starts with the chemical composition of H2O. What does it finish up as? K9P!! James just looked at me. Dead pan. Clearly it was all in the timing. Then finally he got it. A small smile crept along his face as he groaned. ‘Dad that was rubbish.’ Then he had to rush to school. I bet he tells it in his next Chemistry class!!

It was Wednesday morning so I started to get ready for a work party in the Ponds with my new friends from Camphill Blair Drummond made last week. As I did so the fizzing started again. I had eaten or drunk nothing that could cause a seizure but was feeling decidedly uncomfortable and off balance. I just so desperately wanted to feel normal again. As I worsened I toyed with the idea of not going but did not want to let down my new friends Kevin and Chris and thought some air would help sort me. I gathered the dog and my tools and set off for the ponds. Once married up with the team I discovered that more preparation needed to be done such as risk assessments before Kevin, Chris and their other friends could come over to work. I was sad that they weren’t coming but understood the reasoning. We were bridge repairing today so set off for the bridge. I was with a group of retired carpenters, builders and engineers so there was not a huge amount for me to do. I was able to lift off the reinforcing strips with a crow bar and then clean them of nails and screws to be reused. As I was quietly cleaning the wood I noticed my vision started to go a little funny. My depth perception was very poor. I started to see double. My balance was poor. I frankly felt drunk. The rest of the team were busy so I decided to try and work through it. Using the lengths of wood I was cleaning as an aid for my balance I knelt down and worked from the ground. On several occasions I got the lengths of wood stuck between two trees behind me ut really struggled to work out how to untangle them. I worked it out in the end each time. I was worried but had been through these feelings before. I just needed to work through them. I did start to get better but job done I searched for something else to do. I didn’t want to say anything so just stood quietly fizzing and looking for a job. Then as an answer to a prayer Duncan came up with a genius plan out of the blue for the two of us to go and tidy up in another area. It was going to requires some heavy work chopping and humping and dumping. Sounded perfect. Job agreed we set off and arrived at this marvellous jigsaw puzzle of very old entangled willow growth that needed clearing. I jumped in, worked hard and sure enough started to feel better again. The morning over we met at the shed for some coffee and cake. I brought my flask of green tea and shared some of that out. No caffeine for me though. Especially today. 

Back home and the doorbell rang. Mrs Courser, whose pavement I cleared of snow so she could walk to the bus stop for her daily shopping trip without slipping, was stood at the door with some biscuits as a Thank you. We had a good chat and then she was off to catch another bus or jump on her running machine she was telling me about!! I wasn’t normal but feeling much better. Time for a poached egg on toast with spinach, rocket and watercress and of course a salad of tenderstem broccoli, carrot, tomato and red grapes. 

Time for an internet food shop then a quick final dog walk before heading off for a Curling match. 

During the walk I continued to fizz. I was hoping to blow it away so breathing deep and hard and feeling down. This was just so unfair. As I sank, starting to feel sorry for myself Kirsty Whyte drove past hooted her horn and gave me a cheery wave. I was smiling again. Still fizzing but now smiling. Thank you Kirsty. 

Later this evening Margo arrived to take me Curling. I was hugely thankful for the lift. Public transport on a cold wet night with the equivalent of a hangover is just no fun. As we drove Margo was wondering whether I should be Curling at all. True I was feeling rubbish. In fact steadily worse but to sit on the sofa and feel sorry for myself was not an option. Margo understood entirely and was playing on my team so would keep an eye on me. Young Sam at 14 was the skipper today so I had to let him know with the team that I wasn’t in a good place but not to worry. Just poke me and shout if you need to attract my attention. They all nodded and understood or at least were understanding. I took my place as the second at the top of the sheet and waited for my stone. ‘Archie…..,..,Archie!! You’re stone!!’ I must have looked really stupid as I looked around me gathering my thoughts. I had missed entirely the first four stones. Curled by the Firsts on both teams but I hadn’t moved. I was stood where I originally positioned myself out of the way but to be ready to sweep on our team’s first stone. I missed that one and the second stone. I had lost an entire 3 minutes just stood on the ice. My first two stones curled were not at all good. They weren’t terrible. Just off balance. Not good. Next thing I knew as I stood in position to sweep again up forward on the ice was that the stone had passed me. I had moved up the ice sheet to be ready to sweep for our next stone. I was watching the curler prepare himself to throw his stone. 30 seconds max. Yet somehow I had lost more time and the stone passed me. I turned to chase it. ‘Don’t chase it’ came the cry. ‘Just take it steady. You don’t want a fall on the ice’ said Margo. I just couldn’t understand what was happening. I was concentrating hard yet my brain kept freezing. A bit like the an auto save on the computer. Just freeze. Take no additional input. Save. Then restart. Very frustrating. Then it was my stone again and this time my sight had gone. It was a bit like trying to see a picture through the fuzz on an out of tune TV. I was really struggling but determined to not give in. More time lost and then very quickly, about 3/4 of the way through the match the fuzz started to clear. I could see much better and I didn’t miss a single stone. I wasn’t feeling normal yet but not far off. Even better. We won the match and although I undoubtedly came close today. No seizures!! As Margo drove us home chatting away with young Ellen sat in the back I reflected on this reflection from Dr Micha Jazz from the Premier Christian Group. He and his wife, Katey, who sadly passed after a long battle with MS had been on a long and twisting journey that really challenged their faith but they, like me, found strength in their faith. I give his reflection below:

‘Withdrawing from the crowd as Jesus did is especially challenging. As Katey’s care needs increased, we increasingly withdrew from the crowd. Caring is an exhausting task, as is managing an ongoing illness. From our perspective, we saw it more like the crowd withdrawing from us. Visits slowed to a trickle and then stopped. The prayer team’s initial earnestness ran out of steam and evaporated. We felt abandoned. Yet, hardly surprising, as I for one was not nice to know as I wrestled with my own unremitting pain that found voice through anger and sarcasm.

In retrospect we were being kindly handled by God. For who within the crowd was able to offer more than empathy and companionship? These were important emotional supports we required along the way, and were most often gifted to us by those themselves experiencing or recovering from acute pain of their own. I often see pubs offering opportunities to join their ‘pudding club’. I wonder if churches might do well to establish ‘pain recovery clubs’!

What God eventually was able to communicate above the noise of my own restless anger and reaction was his desire to have time with me entirely alone. If I felt ill-equipped and ill at ease with the space created, he did not. Slowly I had to discover, away from the crowd, distinct from the familiarity of all that I knew and loved, the reality of the presence of God and his deep love for me. I was in a place of desolation, very lonely and solitary in that no one was alongside me in quite the way that I felt within that I needed.

All my understanding of God from teaching and preaching began to slide south, from my head towards my heart. It was a frightening place because I felt intensely the solitary nature and emotional desolation. God was not available at the press of a button or the mouthing of a mantra. I was to withdraw and to wait. In my waiting I needed to discover how to yearn for God rather than criticise his apparent absence.’

Dr Micha Jazz. Be Still and Know.
The Premier Christian Group

I include his reflection here because, although written from the perspective of the carer rather than the patient so many of his emotional experiences and responses are exactly the same as that which I have described as I have travelled on my journey to find healing over the last 18 months and especially today as I fought to keep off the bottom as I fell away from feeling so brilliantly normal. All with the exception of the anger. I have felt anger focused towards me as bitterness against the disease but never anger about the disease from me. Loneliness, bouts of depression and the questioning of my faith have all played a part but in a sense, the disease and my battle with it has opened up so many doors to me that were otherwise closed and introduced me to so many incredible people that I feel that the diagnosis of this disease presented an opportunity to rediscover life. It’s true meaning from the most difficult and painful of circumstances to the exquisite. The joy of rediscovering God’s glorious creation and all his wonderful people. I just had to keep my eyes, ears and mind open to the infinite possibilities life offers. Even when no longer feeling normal. I just hope that the reflection above from Dr Micha Jazz was helpful for many and close with his prayer.

‘Lord, so much of life can disturb and trouble me, yet with you I can find peace. Help me find my rest in you.’

The challenge in numbers in total since the start:
Days completed: 106
Total Miles Cycled: 571
Total Miles Walked: 539.0
Total Miles Run: 30.3
Total Miles Paddled: 7
Total Distance Cycled, Skied, Ran and Rowed in the gym: 8.4
Total Distance Swum: 700 metres
Total Miles covered under own steam.1156.4
Total Height Gained under own steam: 31,973 feet
Mountains Climbed: 5
Hills Climbed: 18
Days of Voluntary Activity: 6.5
Organ tunes learnt and performed: 5
Salmon Caught: 0!
Curling Matches played in: 5
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: 343
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: 466
Days until Driving Licence possibly Returned: 728
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