This weekend has seen 10 miles walked, an 8.8 miles cross training circuit and the incredible power of friendship. It has been a tough week. An incredible mix of emotions flying at me from all directions and out of the blue as I screamed down the steep drop of the rollarcoaster towards the abyss. Normally I would have grabbed my rucksack and my boots and gone for either a good walk or a good ride on the bike but the weather has ridden a coach and horses across any plans that were had to do something adventurous. My goodness it was frustrating. I did manage to do some good Physical Training sessions and I seized the opportunity to catch up with some admin for future plans but didn’t manage to have the extended day long exposure to God’s wonderful creation and people that I had been so enjoying and finding so fruitful on this journey. When the emergency services were already up against it last week I just felt it irresponsible to be throwing myself against the might of the weather when already in a weakened state and therefore more likely to succumb to the effects of the weather. I had to play it sensibly and feel as if I have paid for it somewhat.
Thursday was horrid and Friday morning was tough. Really tough. On reflection it was definitely an emotional reaction to the relentless feeding by the Dementor on Thursday. I was expecting some deep troughs on this journey post treatment but not quite such a rapid descent in to one. It came completely out of the blue, with no warning but I calmed it very quickly. I stood up to the depression and found some positive thoughts instead. I was late for coffee with Chris and Brian as a result of the fight back but better late than never, which was of course an option had I decided to give in to the feeling of hopelessness. Instead I dried my eyes, washed my face and strode through the village, with a smile on my face, to the Buttercup Cafe for a fantastic coffee with Chris and Brian. It was just the tonic I needed as I poured out, not my heart, but my excitement about all the great things that have been happening and keep happening on the challenge. I didn’t need to pour out my heart because I was wearing it on my sleeve for all to see so instead brought Chris and Brian up to date with how things were going. I then heard of a friend of Brian’s diagnosed with an aggressive form of Brain tumour and how positively he has approached the news. There were lessons for myself in the example he was demonstrating and from which I can learn to try and improve my approach to life in the more difficult days and which is to perhaps realise that there are certain things that one just can’t change but one can improve one’s lot by being thankful for what one does have and using that to our advantage in each and every day we’re lucky enough to be given. I also, that day, received a vote of thanks for the help I have provided to another person by just telling the story of the seizures and how they affect me. Knowing that someone else was going through what this lady had gone through made her feel more grounded. More normal. Especially important when dealing with the hidden menace of mental health issues which I found myself talking about in some detail with a friend later on Friday. I was feeling so much better after such a good listening ear given to me by Chris and Brian and then felt even better when they offered to pray with me right there and then in the Buttercup Café. I of course jumped at the opportunity. We linked hands and then Brian followed by Chris prayed for me and all those I had spoken about that morning and wished to see healed. They had listened so intently that it was almost as if they were praying through a check list of all the things I would like to see happen on the challenge and around me. I found it hugely calming after such a difficult morning and energising despite the very irritating and growing globule of snot on the end of my nose which tickled it’s way down to the end and then hang there tickling away. I wanted to wipe my nose but didn’t want to break the prayer chain. Spoil the moment. So I just left this enormous snot hanging. Not very glamorous and I am sure that God understood!!
After coffee Chris very kindly drove me up to the gym and I conducted a cross training circuit in which I completed a session on the Bike, cross trainer, running machine and rower to tally 8.8 miles covered and a good sweat. I was feeling a lot better.
Back at home and as I started to think about supper Cameron called. Would I like to go over for supper with him and the children? I was missing Heather and James and about to start cooking for one. For me. Cameron had read my post from the morning and rightly thought that I might find the evening tough with the children away and could probably use the company. How right he was. I walked Georgie first then headed over. It was a lovely evening. The food was delicious but the company in the guise of the children: Izzy, James and William was delightful and after supper had the opportunity to talk more in depth with Cameron. He was asking questions about the epileptic partial seizures. The auras. What were they really like? I started by explaining the true sensations of the lizard seizure that I had on Day 99. How the Brain controls your sight, sound, smell, taste and touch and so if it wants to convince you that something is really happening it can. Even though my left side of the brain knows that it isn’t happening it’s screams of protest are drowned out by the very real sensations that one is experiencing. I could see that he was struggling, as I would have been, to fully understand how real it can feel. How it meant that I really was running on all fours for a short distance. How I really could see my forked tongue as I licked my dry lips. How I really could feel the weight of the reptilian scales as they layered upon my body like plates of armour as I ran. Even though a small part of my brain knew that it wasn’t really happening the seizure was so strong, so all encompassing that you physically react to the prompts given by your senses. The only way to truly explain it was to talk him through the Eels seizure from Day 25 in which I was rushed to hospital with a mouth full of eels and lucky that we did because shortly after arriving, as I came out of the loo, one of the eels that had been writhing in my mouth, even though I knew that they weren’t really there, slipped in to my windpipe and triggered the most severe physical reaction of a gagging, choking reflex that was so strong that I was fighting for every breath and struggling to get any air inside the body even though my windpipe was clear. My brain thought that an eel had gone onto my windpipe so I was choking and the only way to get oxygen in to me was to pin me down and inject me with a medicine powerful enough to bring me down off of the seizure in order for the body to relax enough to be able to breathe again. It is that convincing in a seizure that if I hadn’t been in hospital it is quite possible that I would have suffocated on an imaginary eel!! We quickly strayed on to the answer to the more important question. How do people respond to you when you’re having them and how do you relate to them? That was the real crunch question and very difficult to answer but from my experience in which I have witnessed an entire bus jump to the aid of an epileptic mid seizure in Edinburgh and in which I had the most delightful lady come up to reassure me and the rest of the carriage after the seizure on the train in Day 26 in which I had a very strong Déjà vu and was convinced that the train was going to crash horribly and that I needed to warn everybody on the train. That from my experience people relate well with me. 99% of the time they have no idea that you might have a mental health illness. I am not even quite sure how one categorises epilepsy but from the type that I have that manifests itself in these auras that play out usually unnoticed by others in the brain and from messages I have received from patients with, or family and friends of patients with, mental health issues my experiences are very similar in many cases. On the whole people relate to me well and when I have had a seizure in the company of others such as several times on the train, or when walking with others, or in a restaurant, or when having my haircut or even when talking in church this morning I have found in every case people to be helpful and although not perhaps fully aware of what horrific scenes are being played in the mind are fully aware that you are in trouble and have bent over backwards to help me. The really frustrating bit, is when I am having a less traumatic partial seizure that isn’t turning me in to a lizard, or a scene from harry potter, or the matrix, or a runaway train et al but that is sending the hive of angry bees up my body under my skin and crushing my skull under their weight with their sickly sweet and pungent smells and tastes of a metallic honey. I am feeling extremely uncomfortable and frightened and nobody is aware of it. I am aware that nobody on the carriage around me is aware of it and you just want some help, some reassurance, but you just don’t know how to get it. You are surrounded by people but feel tragically alone, afraid and scared all at the same time. Trapped in this secret prison on day release. It had been a deep and long conversation as we cleaned up after supper and that left me quite drained so felt it best to head home feeling so much the better for the extended support given to me by friends and also now had an invitation to lunch in Edinburgh on Saturday with Allie as she felt that a change of scene and a chat might help. As I walked home the song “Believe” by Lenny Kravitz came to mind and as I hummed the tune and the words that I could remember found it additionally fortifying and relevant as I went home.
“I am you and you are me
Why is that such a mystery?
If you want it you`ve got to believe
Who are we? We’re who we are
Riding on this great big star
We’ve got to stand up if we’re gonna be free, yeah
If you want it, you got it
You just got to believe
Believe in yourself
‘Cause it’s all just a game
We just want to be loved
The son of God is in our face
Offering us eternal grace
If you want it you’ve got to believe
‘Cause being free is a state of mind
We’ll one day leave this all behind
Just put your faith in God and one day you’ll see it
If you want it, you got it
You just got to believe
Believe in yourself, yeah
‘Cause it’s all just a game
We just want to be loved
The future’s in our present hands
Let’s reach right in, let’s understand
If you want it you’ve got to believe, yeah
If you want it, you got it
You just got to believe
Believe in yourself, yeah
‘Cause it’s all just a game
We just want to be loved”
As I travelled in to Edinburgh on Saturday I witnessed the most wonderful sight of a Lady on a wheelchair struggling against the wind in Edinburgh Park station. It wasn’t wonderful because this lady was struggling but because from out of the sunrise rode a young lady in a powered chair who charged, with the most enormous determined grin on her face in the face of such fowl weather, straight to the ladies aide to give her a tow, all teeth and determined grin against the cold hidden underneath an enormous purple bobble hat which bounced quite dramatically from side to side as she bobbled over the rough surface towing the lady in her chair. That made me smile and raised my spirits for the rest of the day. I ended up having a much better day. No wibbles. No wobbles. Just a pleasant walk in the virgin snow in the morning and then lunch with a friend. It was a great lunch with beautiful views over the Firth of Forth watching the waves crashing against the shore and hugely supportive conversation. As I prepared to leave and apologised for frightening her with Friday mornings post Allie reminded me of two elements she had sent me. One of which was for reassurance
“it is being honest about my pain that makes me invincible” – Nayyirah Waheed.
And the other a dig at me for saying sorry when I really mean to say thank you which I give to you at the end of this post.
Today has seen the experience of the last 3 days encapsulated beautifully in the service of candlemass, the Christian festival of light. When at my lowest ebb and losing faith what pulled me through and delivered me to next week in good order was my friends keeping my candle alight. Much like I hoped that Paul McIntyre carried my torch for me on Day 56 the lady in the powered chair coming to the aid of the other lady in the wind kept her flame alight despite such atrocious conditions. These last few days Chris, Brian, Cameron and Allie have not only kept my flame alight but are carrying a candle for me to show me the way to faith, healing and freedom from day release.
I am so very sorry for causing you concern with my desperate post on Friday morning. I am guessing that at the time it was an appeal for help which came in abundance from you all so thank you for all your wonderful messages of support and offers of help. I am back on an even keel now. Thank you
The promised link to the cartoon. Well worth a view. http://brightside.me/article/stop-saying-sorry-if-you-want-to-say-thank-you-a-seriously-insightful-cartoon-57255/
The challenge in numbers in total since the start:
Days completed: 113
Total Miles Cycled: 627
Total Miles Walked: 591.5
Total Miles Run: 32.7
Total Miles Paddled: 7
Total Distance Cycled, Skied, Ran and Rowed in the gym: 17.2
Total Distance Swum: 900 metres
Total Miles covered under own steam.1389.3
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: 5
Press Ups: 217
Pull Ups: 54
Sit Ups: 217 People Met and Hands Shaken: 356
Pots of tea shared: 24
Prayers joined on the top of a hill: 2
Prayers joined in the street!: 4
Prayers joined in a Train Station: 1
Prayers joined in a Café: 1
Pills popped: 494
Days until Driving Licence (lost to epilepsy) possibly Returned: 730
And most important of all – Money Raised as at Day 112 – £6,050.77
Considering I started this challenge 22 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. That is £54.02 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 to £54.02 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 for joining me on my own personal journey and encouraging me to walk, cycle, climb, paddle, sport and do good deeds each day to ‘Beat the Beast’ while helping to improve the lives and life chances of so many more people through sponsorship. The Five Charities that I have selected to support are:
- Cancer Research UK – My Father Succumbed to Lung Cancer; a couple of friends are currently fighting cancer and I am fighting a brain tumour. Let’s Help to Beat Cancer Sooner.
- The Prince’s Trust – Inspiring and preparing disadvantaged Young Lives for success.
- British Red Cross – helping those in need around the UK and the world whoever and wherever they are.
- World Wide Fund for Nature – For a Living Planet and a Future Where People and Nature Thrive.
- Help for Heroes – Support for our Wounded and their Families.
Learn more about my story that brought me to this point, how I plan to ‘Beat the Beast’, what activities I plan to do within the challenge and why.
How to Sponsor Me
The Beat the Beast Challenge is self funding through my own contribution while keeping costs to a minimum with voluntary support and corporate sponsorship in kind. Therefore the entirety of every penny donated will go directly to the 5 charities listed above. Please sponsor me by completing a standing order form either through your own personal internet banking or by completing a hard copy standing order form in your branch of your bank and then handing it in to the teller.
Thank you for having enough faith in me to sponsor me.
Yours aye
Archie