And now, for something completely different…

No, this is not a Monty Python inspired post. Although I do love them. And the post does include reference to silly walks. But no parrots, dead or otherwise. I promise. This is an update of sorts. MS related. On the changes in my life over the past year, slow changes at first and drastic changes over the past two months or so.

About a year ago I started using a cane on a permanent basis. About 10 years after my MS diagnosis. My right leg was giving out and I started having moderate balance issues and walking silly. Partly the fault of MS, partly the fault of my laziness and sedentary life. I know that my MS is not my fault, but letting my muscles atrophy is. Not that I could help it much with the constant fatigue and pain – I am more tired getting out of the shower than I was doing what made me need a shower in the first place. But, a tussle with pneumonia in February 2018, the absence (at the time – I am currently on Tysabri and, hopefully, Fampyra) of any medical treatment, and lack of exercise meant I was “primed” for disaster.

I got by on most days without any serious problems. I was cooking less and less – and cooking I really enjoy – but I learned to adjust, bought a dishwasher, improvised, started cooking a lot more one-pot dinners, and got A LOT of invaluable help from my family. Although I have to admit I hate the reduced independence. I kept up with other hobbies too, and over the past year I got my Level I Archery Coach certification from the Cyprus Archery Federation – thanks to a push by my coach. Finally, I kept being productive at work. More productive than I would have imagined given my condition.

But I also had some issues. My walking range was down to about 150m. My vision came and went (not entirely, but it did become foggy) depending on my fatigue level and exposure to screens. Driving (and trust me, if you do not drive in Cyprus it is damn near impossible to get anywhere) became painful and risky with reduced mobility of my right leg. And by November last year I had to take a long needed hiatus from work in order to deal with the (compounded) fatigue. With the idea that I would go on to do something not as demanding and different. That did not pan out, but that is another story.

So, I started the process for various benefits I was entitled to. I got my parking sticker (because 150m is nothing), I applied for funding for various assisted living equipment – shower handle bars, air conditioning installations, modifications to my car so I can transfer the gas and brake action to my hands. (my applications are still pending, but when you have to deal with the state bureaucracy…)

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Then in March we had a family trip planned for Prague. So I thought, since I would be walking quite a bit, I should get a rollator too, that would help me balance better and sit whenever and wherever I got tired (for those of you that do not know, a rollator is kind of like a walker but with wheels). BIG MISTAKE. The rollator was no help on the cobblestone roads of Prague, and my first day there was exhausting. So exhausting in fact that it took a good fortnight before I had kind of recovered. Thankfully we were staying at a hotel that had wheelchairs for their customers, so they lent us one for the duration of our stay. Admittedly, not the best of wheelchairs, but still better than nothing.

So far, two new experiences – a rollator and a wheelchair. (Let the cane out of it. It is just a cool accessory!)

Upon return back home, and after my two week recuperation, I know found that my walking range was under 100m on most days, so I would have to use the rollator for anything further than that, and I could not drive, so I had to depend on others driving me places. My legs even entirely gave out during an archery match and I found myself kneeling on hot pavement and needing assistance to get to a chair.

So, I took the plunge, in May, sort of speak. With the guidance of the physiotherapists at the Cyprus Institute of Neurology and Genetics, I now applied for funding for a  2,200 custom wheelchair. (expensive, I know) Which I could use when needed. Assuming there is no stairs or s steep hill involved.

Here I have to stress that I will not, for now at least, need to use the wheelchair full time. And as serendipity would have it, this year’s World MS Day campaign (World MS Day is tomorrow on 30 May, two days from today) focuses on the invisible symptoms of MS. Because, anyone who meets me for the first time and has a limited interaction with me, especially if I am sitting, cannot tell something is wrong with me. I mean, it is not written on my forehead.

On a more positive note, the various mobility aids will help me get back to work. Soon I hope. And have helped improve my archery performance (I will have to be categorized differently, but oh well. New beginnings, right?

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#10YearChallenge : MS edition

For better or for worse, social media has become and integral part of our lives. Companies such as Facebook and Twitter control our lives (whether you have signed up to them or not, but that’s another discussion). Dictating what news we get, what opinions we hear, what we believe, and, to an extent, determining our actions. Because – and let’s be serious here, there aren’t that many exceptions to this rule – should someone start a challenge of some sorts on these social networks nowadays, and that challenge goes viral, you’d be a social pariah not to participate. And age or education level have nothing to do with whether you participate or not.

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Everybody is an expert

We live in the age of social media. Devouring (and more often than not parroting) an avalanche of information, both good and bad. We have an opinion on everything. We consume reality programming and situational content with more ease than we usually drink water. And we seem to believe anything that pops up on our screens, without ever questioning the credibility of the source, the logic behind what is dished out to us. We have become mindless drones.

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The only thing that you should know, is that you know nothing

Being at risk of relapsing into my former condition of not writing as often as I would like, here go some thoughts. Let me also clarify that the “as often as I would like” part of my sentence above in no way implies a need to write simply because I have to write something, in order to fulfil some egotistical need to speak. It is just an exercise, which I at least believe, will help keep my mind agile.

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Who are you?

One of the things I keep coming across lately is how upset some multiple sclerosis (MS) patients are with people that tell them that their symptoms “happen to everyone.” To be clear, I personally ignore such comments. But the frustration of those patients with the lack of understanding from their audience about their condition is understandable. Perhaps because the statement gives rise to expectations that MS patients can and should perform just like everybody else. Or at least in the way expected from everybody else.

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