Back after a (really) long hiatus

4 months later.

No, this isn’t reference to a post-apocalyptic world, where society has collapsed and the world has been overrun by zombies.

Or aliens.

Or taken over by an evil overlord.

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It’s been about four months since my last post. Just like before – and no, I am not making excuses – my health got the best of me. My bad health that is. So, after a period of sudden temperature changes in late February, I had another MS episode.

This time, it was optic neuritis. The second time this has happened. Affecting my right eye this time. The first time, a few years back, my right eye took over so I failed to realise something was wrong with my left eye until it was too late. Aaaaannndddd… there went between 50%-75% of my vision in the left eye, depending on the day and weather conditions.

So, this time, the moment the episode onset, I realised it in a very bad way. I could see nothing for most of the day. The world went blurry, colours went blunt, small items just blended into the background. I could still drive, sort of, but I chose not to. I could function until it was cool enough at night for the symptoms to subside, but just barely. I mean, even simple tasks like taking a shower would throw a left and knock me out for a couple of hours.

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The response? Typical for MS flare-ups. Cortisone. Intravenously! For three days straight!!! And when that did nothing, 20 days of cortisone pills. Despite my parents’ belief that there could be an alternative treatment and I should check with more doctors (I did. They all said cortisone). Oh, and six weeks out of work.

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Now, don’t even get me started on the people asking me if I am better already, or their apologisers. Or people that for all intensive purposes wanted to be helpful but ended up hindering my life and treating me like a helpless individual. Or how little a state, that wants to call itself humane, actually has to offer me in my time of need – except for medicine and healthcare that is. That I refuse to discuss, simply because it will frustrate me and make me angry. The thought alone is making me angry.

Instead, I’d like to focus on the silver lining. And there is more than one.

Six weeks off work helped me do a lot of things. Some I had lost connection with, some I’ve been meaning to do. Rediscover the joy and calming effect of cooking. Arts and crafts (mostly crafts that is, no art to speak of here). Discovering new music (it’s incredible how Spotify has recommendations for me each and every day). Taking care of my garden (ok, the pots on my balcony). Exercising more. A lot more archery (although I could not really see the target or my sight when shooting). Thinking of Plan Bs career-wise (plenty of ideas, still no energy to implement any of them). Learning how to use public transport in a city that is infamous for private car use – even for the shortest trips.

But I guess that all of these things, and I am sure there is more that I forgot to mention, boil down to one simple philosophy. Slowing down. Slow food, slow cars, slow living. Taking the time to really look at the world. To listen to the sounds of the city. To experience something new. To talk to new people, not just the formalities, but also listen to what they are saying. To spend more time with friends.

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Like one of my favourite movie lines goes, “Life moves pretty fast. If you don’t stop and look around once in awhile, you could miss it.” (If you haven’t watched Ferris Bueller’s Day Off, do so immediately. If you have, well, watch it again because it is awesome!)

I’ve always been an advocate of slow living. Even more so after my latest episode. I guess I am enjoying this slow pace a little too much, and that is why it took me so long to write this post after I went back to work. And why I need to end this post now. But also because after a long day at work I am exhausted and my thought process is, well, for a lack of words I’d have to say…

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PS I’ve noticed that my blog now has ads on it. Not sure how it’ll work, but I hope I won’t miss any readers and eventually even make some cash.

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Just because you can’t see it, doesn’t mean it’s not there!

It’s been a while since I wrote something MS related. The past couple of days something has been occupying my thoughts though. How others view you when what you have is an invisible disease. Invisible to all but you that is.

The symptoms of MS are plenty, and a lot of them are not exclusive to MS. Like difficulty to concentrate, or extreme fatigue. And they differ from one patient to the next. If you are really lucky they do not really affect your life. If you are lucky they don’t affect you much. Most of the time that is. Because just like with everything else in life, there are ups and downs, and with a lot of effort you could “hide” the down days. Not to please anyone, but simply so you can feel you can still function independently and completely.

Which means people do not realise how hard a time you are having on those days. For all intensive purposes, you look and act normal. You and only you know how much more difficult everything is to accomplish, how much pain you may be in but are still smiling, how tired you may be but still try to keep up with everyone else (and this is not the kind of tired that goes away with sleep), how hard it may be to concentrate so you keep trying as hard as you can to focus.

I just had one of those days. When I felt weak and uncoordinated. When I would stare at the compute screen but could only focus for less than a minute each time. Let’s not get into how or why this flare-up came about – it could be what I’ve been eating for the past couple of days, it could be stress, it could be the sudden temperature fluctuations. Or how emotionally you feel weak because of what you have been able to do before the onset of the disease and the expectation that you could have been able to do.

What’s really hard during these times is trying to explain to people just how you are feeling. Today I used the example of “having had 15 cups of strong coffee all at once,” feeling tense and unfocused.

And then I started thinking again (yes, I do tend to over think, another effect of MS), and retracing an earlier conversation I had with many people actually. About how I am entitled to a handicapped parking sticker, but people think I should not apply for it because I don’t need it. Well, I do need it – sometimes at least, when having some trouble walking even 100 meters, or when even pushing the shopping cart to the car is hard to do.

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I really hope I will never have to use that sticker. And I’ve said it before and really meant it, I don’t want special treatment from people because of my MS. But I may have to use it, and I may need special accommodations – not special treatment or favours – and a whole lot of understanding. So I will apply for it, as well as for any other accommodation or benefit I may be entitled to. Without feeling any shame, or having any reservation. Because, even if you cannot see it most of the time, it is a handicap that I am working with.


My featured image today is a penguin. Because, let’s face it, they are awesome.