It’s coming up to 7 years since that first, nasty surprise of diagnosis with MS. Looking back at what else was on the list, it could have been far worse. As it is, I am in pretty good shape. Not perfect, but not bad. These days it is often to the turn of others to express surprise upon hearing that I have MS. That surprise is usually increased when they hear how I live my life. Sometimes there is the dread ‘But you look so good!” An off-the-cuff comment that is well meant but which also reflects the lack of comprehension of what can be an invisible disease.
Frankly, I don’t always understand it myself and get it that others will not. This is is certainly not a ‘complaining about everyone else in the world’ post. Currently it is not easy to spot, the only outward signs being occasional bouts of trembling, a slight limp and being excessively careful when walking down the stairs. That will change over time but for now, in all honesty, I’d rather it stays invisible. That means it is often comes as a surprise when people are told and leads to questions Good questions. Answering them helps me to understand what I have and helps me realise that the world is, for someone like me, not a bad place.
“You Still Work Full-Time?”
A big surprise for meany. But let’s be clear, working (and contributing) full-time comes with compromises. In the modern world these actually come easy. I read a lot of complaints about the on-line world and when,I see idiocy mistaken for debate on Twitter, I agree with it! But the fact is that, had I been diagnosed 20 years ago, it would have been impossible to work full-time. Even with the best will in the world. A train full of people is still, sometimes, a terrifying thing. But it’s not something that I need to do very often.
Thanks to the on-line world, I can get out of bed, walk slowly downstairs, log on and start working. An early call with an Australian colleague does not mean getting out of bed at 5 AM to get to the office. I can record the call and play it back so, if my memory plays tricks on me, the record is there. I can have a sleep when I am tired or go for a walk or start late and finish late so I can get a ride in. Subject to the day’s agenda, of course. So important to keep that exercise going. It also means that, for two days a week, it is not an effort to go to the office. In fact, the company is so welcome.
“You Still Ride a Bike so Often?”
A big surprise and perhaps more difficult to explain than working full time. Let’s face it, the amount of time I spend in the saddle would be shocking for a ‘healthy’ person. I’ll give a little leeway on that one!
It’s not just about cycling, though, and I know of many people with MS who are very active. Something I have picked up from the on-line community. This is a surprise to many. It would have surprised uneducated me a few years ago.
It’s good to know the opposite. Important too!
It’s still one of my favourite stories that the top two riders in terms of distance covered in one of my Strava groups (Facebook for people in Lycra) both had MS, me being one of them. Now I have a new favourite ‘active with MS’ story that came from a meeting with friends at a pub around Christmas time. One of my chums also has MS. We were talking about our latest challenges. Hers is to run a marathon, mine is the Amstel Gold Race. Two friends with MS; different versions, different impacts but still the same two letters. Both planning insane physical adventures for the coming year. Deranged. We’re not the only ones, either. Plenty of stories out there.
“Shouldn’t You Rest More?”
This is the most difficult question and comes naturally when I take about how active I am. Because perhaps I should. Just to be clear, most days I have a doze, maybe two. I also make sure I arrange a ‘do nothing’ day once a week. Just read, watch films, listen to music. Write this blog. And still sleep. Nothing too active.
Some days there isn’t a choice. I have to do nothing. Not too often but often enough.
These days will happen. And they make me even more determined to make the most of the good days. Not just with a bike. I love concerts although I am quite careful when I go to these. Never at the front in a mosh pit and near an escape. When the noise gets too much or, more likely, the light show floods my senses, I can step out. Take a break. I love a glass of wine as well. I enjoy cooking. Travelling is great, with precautions. There is enough to keep me busy.
And, whilst I still can, I will enjoy being busy. Alongside that, I know I need to rest, switch off a little. It can be hard but if it means that I can keep the active element of life going, so be it.
Knowing I am Not Alone
The internet has come up a couple of times in this post and makes a good point to close the piece. It is much maligned, after all, but there are benefits as well. There is a raft of material on MS out there. Sift through it and you get sensible, informed information. Sometimes it makes a difference. Increasing Vitamin D, for example. Taking supplements has made a difference to my concentration and memory. Or maybe I just think it does. There is also validation of how I do things. The importance of exercise mentioned above, for example.
Of course, the danger with the web is that you can find too much. Contradictory theories. It can be confusing and nothing beats a good neurologist and medical support.
The main assistance is, perhaps, less concrete. It comes with the voices of others who have MS. Blogs, twitter, podcasts. Many are facing the same questions I do and have similar fears and confusions to mine. I don’t have many friends with this condition and so these other, remote voices are a help. I may not speak to these fellow travellers and will never meet most of them but they are there and their experiences enrich mine, helping deal with my own confusion and the surprise of others.
It’s good to know that others are out there, talking about what they go through. They make it easier for me to do the same.