This is a long post, fair play if you read it all as to me it’s quite personal. Today is World MS day #worldmsday and we need to raise some awareness of this pretty rubbish condition. I got my diagnosis about 7 years ago and at the time was in a bad way with everything and I think I am proof that anybody can turn it around. I remember walking out of the consultation room with the words “oh that’s interesting you appear to have MS” ringing over and over, I managed to get out of the room walk to the car and in that time every possible outcome to the situation had been analysed in my brain and eventually collapsed crying my eyes out in my wife’s grip thinking it’s all over for me.
I must say I have had very little help from the government in benefits from it in fact nothing as I’m #NotDisabledEnough. Nor have I received much help from healthcare in terms of treatment as their way of treating it has been to prescribe tablets that have some very negative side effects and have a scan and a telephone appointment every 9 months for 10 minutes. I chose a path of treating it in every way I could make a marginal gain to add up make a big gain. I gave up smoking, and drinking, went vegetarian, started taking regular vitamins, and above all, I firstly joined a gym and tried to sort myself out.
The main thing I have found though is the fitness thing has made me do 2 tough mudders that I would have never dreamed of before and then following on from that seeing if I could do a triathlon. It took a while to get started but thanks Evo Triathlon Club I had a lot of hurdles. Mainly the running as my legs simply doesn’t let me after about 1km. My answer to that was to do the running in a racing wheelchair which works a lot better for me. Thank you Arctic ONE for helping with that.
I am always going to be the last person in pretty much everything I throw myself at with the club I’m in. Hills on the bike are a massive energy drain on me because of my legs and going out on a simple bronze ride can feel like running the London marathon. The swimming I am always going to be one of the slowest, but I keep plodding on and try to get better despite getting punched in the face by a stray swim stroke coming the other way. As for the run I have the chair and I’m managing to make times on that I never even dreamed of achieving had I tried with my legs. Having said that I am still the slowest person in my wheelchair racing club and get rinsed by everybody and made to feel like an inconvenience to the training but that does not stop me as at the end of the day I’m always moving forward.
Despite all this I still try and will keep trying, mentally its been really hard coping with all of this recently as its just felt like every single person is beating me and I have been so close to just throwing in the towel many times this year from constant defeat. Having a massive relapse with my legs at the start of the year didn’t help. The thing that keeps me coming back though is thinking how far I have come from what I was 7 years ago. Looking at this personally, it's felt to me that I have run the entire length of the UK and then some but to what others see I just appear to be the slow one that everybody can overtake, and constantly lap and in the process and demotivate me. Trust me I am trying as hard as you are maybe more with the cards I have been dealt. Imagine if I didn’t have all this MS bullshit going on how much better things would be for me given how much I train or even better just spend a day in my shoes and try and do what you were doing. The other blessing I also ask myself is had I not got an MS diagnosis would I have done what I have done or met the friends I have met?
I’m going to share with you a picture I am not proud of, it’s my ruler, the picture I can always go back to if I don’t think I am getting somewhere that I measure my progress from.
I’m also going to share a picture I am proud of where I think I am now. From that you can probably see I have a big ruler.
Finally, I want to share a video with you I took part in for World Multiple Sclerosis (MS) Day and for Shift.ms I’m only on it for a few seconds halfway in and a little bit at the end but I think the few words I say speak a million words.
Thanks for reading this if you got this far, I really appreciate it. While I am writing this I have just discovered I have fractured my foot and have to have 6 weeks in a boot. Does bombing it around Goodwood yesterday on a road bike make me super F**king hard for doing it with a fractured foot? Enjoy the video.
I’m Steve, I have been working in the events industry for 11 years mainly focussing on lighting and video. I was diagnosed with multiple sclerosis 6 years ago and while it does not affect my work I would rather be open about it from the start.
If you read my blog you will see that I am managing the condition just fine having done triathlons and tough mudders since my diagnosis. I hope to educate those that don’t know about MS. If what I discuss helps just one person then to me that’s a success.