Written by Mitchell Winters
So, let me set the scene, it’s early 2005, I’m just your average guy doing average things but that’s about to all be turned on its head going to the bank one afternoon.
I’m Walking along minding my own business when my right leg buckles under me for a split second and then it happens again a few strides further on. Not a problem I think I’m just being clumsy and as soon as it had happened it was forgotten about.
Fast forward a couple of weeks and I’ve lost all the sensation in my right hand and forearm. At this point it wasn’t a concern because I had something similar a few years early when I bruise a nerve in my left arm but that was ok after a couple of months. I give it a couple of days and then off to my GP to start the game of diagnosis. First test, as with most issues is a blood test and this was found to be clear after a couple of weeks. The next step was a referral to neurology at my local hospital and then on the waiting list for an MRI but it’s at least a 3 month wait.
At this point the chronic fatigue has set in and it’s like nothing I’ve ever experienced. Think of the most tired you’ve ever been and then times it by 10,000 and that’s really the only way to explain it but that really doesn’t do it justice. At this point, I had two choices wait it out or just get on with things as best I could. Being self-employed meant working through it, was the only option.
Next step was the loss of speech but fortunately this was short lived. This was a strange experience, the best way of explaining what it was like was if you’ve had way too much alcohol and no matter how much you concentrate you just can’t make your legs work how you want. When you speak, you don’t really think about it but no matter how much I tried the words just wouldn’t come out. By now the sensation has pretty much returned to my arm and the fatigue has gone.
Then I had the first round of MRI’s and it’s looking like I have several small lesions on my brain. The initial diagnosis was small brain tumours but a second round of MRI’s would be required to gain more information. So, with that done and back with the consultant, it’s looking like it’s Multiple Sclerosis. To this point I’d never heard of MS and to sum it up it’s a degenerative neurological condition but to confirm 100% I would need a lumbar puncture.
If you’ve ever been in a situation like this you will know the hardest part is not knowing and playing the waiting game, once you’ve got some answers you can deal with it and move on. Well that wasn’t going to be so straight forward because the consultant I’m seeing today doesn’t think I need the lumbar puncture. This was one of those times I needed to dig my heels in and get what I wanted, well 2 weeks later I got the letter with the approval to have it done.
By now over 6 months has passed, it’s November and I finally have the answer. It is as suspected it is MS. Finally, relief at knowing what’s going on, so it’s time to go and tell the family. I’m quite matter of fact about it and unfortunately the family weren’t quite the same. Lots of tears and lots of questions followed the news.
At the next visit to the consultant, I was weighed down with tons of information, printed and verbal. Then the conversation turns to medication and what I’m going to take. My decision was not to take any which some may think is fool hardy but I did have a valid reason at least in my own head. I told him I don’t want to be putting toxic chemicals into my body on the off-chance I may have a relapse. If I do have a relapse at that point I will go onto the medication.
Over the next couple of years, I try and find a happy medium with work, exercise & stress levels but to no avail as I have a small relapse. So now we talk about medication again and I say yes. The doctor offered 3 different types and the choice is mine but unfortunate all 3 are injectable and I’m no fan of needles. So, it will be 3 injections a week administered by myself. Looks like I’m going to have to suck it up and get on with it. Having never given myself an injection they provide a nurse to go through the whole procedure and the does and don’ts.
Like with all medication, it has side effects and the flue like symptoms varied from mild to severe the day after the jab. I suffered feeling like a zombie the day after the jab for several years but after coming home from a week away at the Le Mans 24 hour one year I had a bad symptom the next day and ending up having a day off work sick.
This was the first sick day I’d had since I’d fractured my leg in 2003 and it was due to the medication. Enough was enough I’m not taking it anymore so a call was made to the consultant and that was the last time I took it. Looking back over a decade on, of dealing with the condition would I change anything? As odd as it may sound, no I wouldn’t. No one wants a health issue like this but faced with a situation like this it makes you massively reassess your life. Turning that negative into a positive has been a massive game changer for me and it’s taken me a long time to realise that as you don’t always see what’s right in front of your face.
Don’t get me wrong, it’s not always sunshine and rainbows but if the good days outweigh the bad, it’s a win. The thing is, there’s no one size fits all solution and a lot of it is trial and error. I’d like to say I got it right every time but I didn’t and I’ve made a lot of mistakes getting to where I am now.
One of the problems, is because like a lot of illnesses on the outside you look perfectly ok and people either forget or don’t know they expect you to carry on with the same pattern of behaviour as before but you know deep down that’s not an option. So, it’s very easy to slip back into old habits if you’re not true to yourself. I would set myself a goal how I wanted things to work and this was fine until things got busy and then things started to slip and I’d start feeling rubbish again. Time for another reset.
Another lesson I’ve learnt is don’t play the pity party as it doesn’t help and therefore I don’t really talk about it as it’s a private matter. In the past, I’ve had a couple of people say ‘oh you do so well your always on the go’. My response is always the same “what choice do I have, sit there and cry into my hands and feel sorry for myself or just get on with it?
So, what is it that’s keeping me healthy? well I would put it down to 3 things.
The first is a good diet. The second is a stress-free life or at least minimising it as much as possible. High stress was a big trigger point for me but the only thing that caused that stress was me, so a completely different outlook on life is what’s fixed this.
Third and the most important, is exercise. This by far is the most important thing in my life and trumps everything.
Having implemented these 3 things and massively reducing the amount of work I now do has got me into the sweet spot I’m now in and I have been chuckling to myself recently because of some of the comments I’ve been getting from a couple of the trades men I work with. Comments like what are you going to do now you’re doing less work? and I just say enjoy life.
Having got to this point and feeling awesome, my goal in life now is just to get out there and enjoy it.
So now I’ve laid my cards on the table do I class myself as lucky? Yes I do.
I’ve seen the extreme ends of the conditions and the awful effects it can have on people and their families. The fact that I’m stable or benign as my consultant says and this makes me thankful every day.
We all have shit in our lives, how you deal with it is your choice and your choice alone, but if you’ve got something to do just remember, there may not be a tomorrow so don’t put off till tomorrow what you could do today.
Mitch is a gas service engineer, and has been self employed for the last 18 years. His main love is motorbike racing