Blog Thirty
“Living my Best Life Possible”
So finally had a chance to catch up on the last few days. And what fantastic days they were. Started on Saturday morning with a PB and my second ever 10k run (ever as well as with the running club) at the beautiful Kew Gardens. Then went to coach trampolining which was great fun.
I did the same race on Sunday followed by 17 miles to make up my long run. I didn’t realise how tired I was and at various points thought I wouldn’t finish but managed to keep going - 23 miles done in the slowest time ever! I’m on for a 9 hour virtual marathon at this rate.
I just had the best time. I met some lovely people, so enjoyed racing and in a beautiful place. I’m just so glad I joined the running club and had the courage to go to both races so far where I don’t know anyone. Anyone who knows me, the person who can’t walk into a meeting late even when I know people, who can’t go to a place where I know no one particularly when I’m doing something I’m not sure I can do, will understand what an achievement it is for me.
I am so grateful to my new friends from the running club Runner Community by FORDY RUNS as without them I think I wouldn’t enjoy the races as much, they have been so welcoming and accepting.
On Monday it was all change - a hospital appointment for an EEG and ECG. Some people will know, but most won’t, that I had a seizure before lockdown. Having hoped it was a one off or a provoked non epileptic seizure, the neurologists three weeks ago confirmed that I do have epilepsy - another label to go with the one of autism!! Somewhat ironic because I had already agreed to run the virtual marathon for Epilepsy Research funded by the Royal Free Charity! They aren’t sure yet what has caused it hence the EEG and multitude of tests recently - it’s nothing bad but something isn’t quite right - possibly caused much earlier in life.
I also apologise to anyone who might have found me being particularly miserable - for all of the events of lockdown this was the one thing I found the hardest, because of the lack of independence and freedom that this diagnosis has (or I thought it would have) and having to rely more on others. I value my independence and freedom above all things. I also hate the label as epilepsy is something with quite a stigma attached to it.
To be honest I found the hardest to have been the issues with my brain - it turns out I have big gaps in my memories for the last two years (and on a daily basis so apologies if you find me repeating conversations!) and my time lines are confused so I can’t remember what happened when. I really feel like the one thing I relied on to be me; a photographic memory, instant recall of data and conversations has been taken away from me, making me less of a person. My body has let me down completely in a way I don’t know how to overcome. I am adapting to this now and the hope is that with the right medication my memory will come back or at least I will stop losing time, stop scrambling events and stop repeating myself!
So this is why I am so appreciative for all the kind words, supportive comments on my running posts and general ramblings. It isnt intended as attention seeking.
Hopefully it will also explain why running has become so important to me and why I bore you all with it so much!
The goal of the marathon has really been the thing that kept me going through the massive changes lockdown brought to life, including what was happening with my useless brain, with a structured plan to keep me focussed.
The races and running club have provided a safe environment and so much fun which I desperately need, with events to look forward to. I have met the most wonderful people, made friends who allow me to be me but are there in case it goes wrong and I fall and can find the funny side in it.
The charity itself have been so positive and encouraging that it has helped me dream I might be able to complete 26.2 miles on 4th October when I thought that I would just be told I couldn’t run.
My neurologist (who is leading the project I am running for) has been so positive about what I can do, focusing on that rather than the opposite and I was surprised how much things have changed as to what can and can’t be done. With technologies such as my smart watch I can do activities on my own that previously people with epilepsy were told they couldn’t do at all and as technology improves this will just get better and better all the time.
The Risk Assessment app that I am running to raise funds for will only help this independence for people with epilepsy, and I am honoured by the support they have given me to raise money for something that will benefit me, not them. In a call with the charity and my neurologist on Friday she said the aim of the app is “to allow people to live their best life”. I didn’t really get that until the diagnosis and the three races I have run since that point - they have shown me the value of being able to compete, to take part in what before I took for granted and I really have been able to enjoy larger parts of my life in the last three weeks in spite of the difficulties I had with the label I have been given now.
The only issue I have found is that to be able to do what I want (and need) to do has become a lot more expensive as the technology isn’t cheap when you have to buy it commercially. This is why the work of charities is so important as they explore ways to make these things available to all. I’m just lucky that I was given an Apple Watch to replace the ones I broke/drowned as I now rely on it so much.
So it’s a long post, again it’s not intended to be attention seeking, just an explanation and apology of sorts for being quite down and probably hard to talk to for a while.
What I ask is that people don’t change the way they see me - I could have had this for years (probably have). I am still me and I don’t want to be treated any differently as you would have. Yes, I have to risk assess activities differently now but I have fantastic neurology teams in London and wales to help me do this as often as I need their help with it. If you have any questions about seizures etc I’m happy to ask, tbh you probably have already seen them and not realised what they are, or will never see them, but I always happy to explain. If you are worried about what to do I can tell you. But above all I’m still the person you knew before and have always known (except I may have forgotten some things I have done with you in the last year or two!!).
And of course, please donate to my Just Giving account!! I’ve started a Blog to keep people updated, and mainly because I promised I would do one! As soon as I have backfilled it I will let everyone know it can be found!!