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My story

The Mysterious Symptoms of Multiple Sclerosis – Part I

Mysterious landscape
Norway 2020

Also known as the disease of a thousand faces, multiple sclerosis is famous for differing from one MSer to another. Its symptoms are manifold and complex, and I am no exception.  My MS “career” has been filled with more or less extravagant ones, starting with the most devious of them all (“Aren’t all of them?”).

Everything was still okay in the autumn of 2004. Our class went on a couple of days’ hike. I was in good shape both physically and mentally (“If you don’t count in your laziness and rebellious spirit.”). I was even one of the best long-distance runners in my class at that time (“Not to brag too much!”). However, in early 2005, this was about to change.

Coordination and balance

Loss of coordination and problems with balance were the most obvious alarm that something is wrong with me. All of a sudden, I started having these problems with almost every activity I did. Even a short walk from bus station to school required an effort!

But it wasn’t me who “pulled the trigger” to finally see a doctor. Interestingly enough, it was actually my PE teacher after seeing my uncoordinated running (“if you can still call that staggering along the track running”). My running style resembled that of a drunken stork!

My running style resembled that of a drunken stork!

My physician made a basic neurological examination – you know, the one with the reflex hammer and one-leg balancing test. My reflexes were too intense, and I couldn’t stand still with my eyes closed. After describing my other problems occurring in the last half of the year, I got a “direct ticket” to the neurologist’s.

Did you say other problems?

Along with progressive loss of coordination and balance, I also started to feel dizziness and vertigo. This was (automatically) accompanied by blurred vision and sunlight sensitivity. I recall coming into class one day, all exhausted. Our English professor handed out the test and I couldn’t read a single word on it. The words were all blurry and fuzzy, and there’s no way I could make anything out of them. I freaked out, of course! The panic overwhelmed me, and in the end, I couldn’t even finish the test.

These other symptoms have been less visible and sneakier, seemingly unconnected, absolutely confusing, and so much more difficult to explain. They might be related to my other chronic diseases diagnosed in my childhood (uveitis and juvenile rheumatoid arthritis), or they could have been easily attributed to puberty-related reasons, like stress, dehydration (“You mean hangover?”), hormones, lack of sleep, etc.

And here we come to one of the most frustrating MS symptoms I’ve been “blessed” with (together with the majority of other MSers): fatigue!

Fatigue

When you turn 18, your main goal in life is to try, experience and achieve everything. Because, you know … everything is possible! But fatigue made this “everything” so much harder for me. For instance, going for a super quick cup of coffee during the main school break in the old town of Kranj (“the capital of Slovenian Alps – a fact of utmost importance!”) was suddenly no longer manageable. Nor was the one hour-long walk home we used to take when missing our last bus after going out on a Friday night. 

But I have never taken this as a tragedy and neither have my friends. We simply just adjusted our activities because we all wanted to do things together. Nobody excluded me because of my sudden disability for which I will always be grateful to them.

Back then, I had to work a summer job at the local factory.  One day, I started my shift in a completely ordinary fashion, but a couple of hours into work, I simply couldn’t walk across the hall anymore because I was too tired. My legs just didn’t want to carry me any longer. “WTF is happening to me?!”, I was devastated and confused. But the next day, I woke up like nothing is wrong. Like nothing had happened the day before. It was so easy to simply believe that everything is going to be just fine.

First snow
First snow 2020

Numbness in my legs

Looking back at it now, it’s kind of adorable which words I chose to describe the symptom I later found is called numbness. I described it as “a doughy feeling in my fingers and shins”. And then I continued this awkward description by adding, “You know, it’s like your skin is trapped in a plaster cast. (Like I could know how that feels like because I had broken so many bones by then – NOT!) If I touch the skin on my legs, it feels like a very distant pat.” I’ve always been known to have a unique sense of expressing myself in the most vivid way.

“If I touch the skin on my legs, it feels like a very distant pat.”

Tricky and mysterious

The above were the main symptoms I dealt with in the first months following my diagnosis, and I’m still struggling with them today. Every day. They’ve become a part of my life, a part of me.  I’m not saying that you get used to these symptoms, but you will learn to live with them. Accept them to the extent that they don’t or no longer define your general well-being.

Because of their tricky nature, not one person will experience them in the same way. Because they are so hidden and unknown to us, everyone will describe them differently. And wait for it – because this scary little monster comes with so many different symptoms, some fellow MSers might never experience them at all!

That’s why it is so important that we talk, write and read about them.

Multiple sclerosis is one hell of a mysterious disease and its symptoms can be quickly misinterpreted. That’s why it is so important that we talk, write and read about them. Want to know more about my symptoms? I’ve already drafted a bunch of intriguing new posts on this topic and will try to finalize them ASAP. So, stay tuned and stay with me!

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My story

My first mobility aid aka my sexy red stick

Personal Album

It took me so long to realize IT’S TIME!

It’s time for me to accept the fact that I need something to help me run all these very important errands in my life independently and perform all of my activities on my own.

It’s time to regain a little dignity –­­­­­ constantly falling in the middle of a crowded shopping mall just isn’t something that will help me boost my confidence.

It’s time to get back that charming smile on my face and give myself a chance to look around and observe the beautiful world around me. To enjoy the sun, to feel the vibe, to breathe in the fresh air with my head raised up high. To check what cool clothes people are wearing and if bare ankles are still a must for this winter.

It’s time to start enjoying walking instead of spending all of my energy focusing on how I walk!

How the disease sneaked up on me

The thing with relapsing remitting multiple sclerosis is that with all the relapses and remissions the disease can still progress quietly – so quietly that you don’t even notice it.

How could I worry about worsening of the MS when these changes were so sneaky and graduate?

At least my story with MS has been like that. In the first ten years of diagnosis, I had a lot of mild relapses with a pretty good recovery every time – or at least I thought so. I’m definitely in a lot worse shape now than I was after my very first relapse (“Come on, you were able to run again after the first shots of steroids back then!”).

But every next relapse took away another of my abilities, and then another one, and then another one … Each one of them left some sort of a consequence, depending on which part of the brain the new lesions appeared in and whether they were dormant or active.

Slowly I needed more and more help when I was walking – but all of this seemed perfectly normal to me. Every time I went somewhere, I subconsciously took the shorter way or decided to rather take the bus instead of walking. When I wanted to walk a longer distance, I simply used my hiking poles, or if I wanted to walk on uneven terrain, I grabbed my co-walker by the arm.

These things became something completely ordinary and I had never truly worried about them. My mind was focused on the things that had improved – some symptoms really had improved and realizing this had tricked me into thinking that I’m doing even better than before the relapse.

How could I worry about worsening of the MS when these changes were so sneaky and graduate?

First there was a rollator …

In the beginning of 2015, I had a pretty rough year behind me: I was finishing my studies, moving into our new home with my partner, another hairy four-legged member joined our small household (which wasn’t stressful at all), and MS wouldn’t be MS if it didn’t take the opportunity to be particularly brutal during this period.

So, they put me on new DMD’s. At the same time, I started visiting a rehabilitation centre to … well yes, to learn how to walk properly again.

It was hard for me to accept that this monster, the MS, may get worse one day.

After five weeks of physical rehab I returned home with a rollator. Quite embarrassing, even if it was meant only for “bad days”. It was hard for me to accept that this monster, the MS, may get worse one day. So, I rolled it in the darkest corner of our basement where it remained for three years! Unmoved. Untouched. Unpacked. Covered with dust. Never used, I eventually returned it to the medical supply store. It was my little victory (“You just wait …”).

Photo by Jean-Daniel Francoeur from Pexels

And then came the sexy red stick

For two more years I sort of dragged myself through the old town centre without any aid. I didn’t even think about using one, but after some really bad incidents, I finally reached the point when it became inevitable and I had to admit it to myself that, yeah, perhaps I do need a stick. Some kind of a fashionable collapsible stick that I could carry in my bag in case there comes a moment when I don’t have an elbow to grab or the next bench is a mile away (since I know the location of every single bench in town).

So, I finally found the courage and will to accept this new necessity into my life.

My first experience of walking with this stick, my sexy red stick, felt amazing; it was like I was suddenly walking with such ease! I no longer feared that I will bump into someone. I no longer needed the walls to support me. I no longer had to walk with my head down. I suddenly noticed the looks of others (realizing they are all passing me by, barely or not noticing me at all).

And then it hit me: I feel happier with the stick!

Why did it take me so long?

Maybe because I was too stubborn to admit that I need a mobility aid, maybe I was in denial. Maybe I was too afraid what other people might say or think. Maybe because this would mean a sort of a defeat for me— that I’d have to admit it to myself and my closest ones that I have failed. That I’ve thrown in the towel. Maybe I just didn’t see this option beneficial. Maybe it would end up being just one more thing out of the (many) things I keep forgetting at random places (like my umbrella – but who doesn’t?!). Maybe, maybe, maybe …

“You should not see the mobility aid as failure. You should see it as a new way of your independence.”

In some way, I was somewhat proud of myself that I was still able to walk without any aid, even though I knew it deep down that I should have one; because you know – I am a warrior. We are all warriors!

I remember the words said by my physiotherapist back then: “You should not see the mobility aid as failure. You should see it as a new way of your independence.”

And it’s true: a mobility aid gives you the freedom to move around normally, independently and with more confidence. It makes you feel safer. It makes you feel more self-aware and it gives you strength to carry on.

This doesn’t mean I stopped fighting MS. I’m still a warrior. But from now on, I’m fighting with a new “weapon” – my sexy collapsible red stick.

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Tips & Tricks

What have I learnt in 15 years since being diagnosed?

Indeed, the diagnosis of MS turns your world upside down – but any big news turns your world upside down, doesn’t it? If you want to continue your journey as smoothly as possible, you need to become a professional manager of your energy. Despite the fact that in my early years of diagnosis I lived my life as “go with the flow” (see my previous post), I’ve learnt some things that I – after 15 years of living with this scary little monster – would like to modestly share with the vast world wide web (and highlight all these points with the most intense fluorescent marker I have for my future-me, when I might lose my way again).

1. You have to do exactly those things you think you are not able to (a girl’s gotta do what a girl’s gotta do) …

First, you have to consider your general physical abilities (depending on how much your MS has already nibbled on you). It takes real skills to set your goals correctly; make sure you consider both what you can and what you want. These goals have to be just low enough that you can achieve them, but at the same time also high enough that they are a challenge for you. The most important thing with the “out-of-this dimension expertise” is that you listen to your body. Not to your lazy-self or your overambitious self. Remember – you can set your goals as high as you want but learn to forgive yourself if you don’t achieve them (and read points 3 or 4 in this post).

Listen to your body.

2. … and give yourself and your body TIME.

I realized my body needs time only after experiencing my last relapse in 2018 (which BTW scared the shit out of me) when I wasn’t able to move my toes (along with a really bad vertigo and lack of balance). The first evening when I slid across the hospital room in my slippers to somehow get to the bathroom, I was completely devastated by how much effort it had taken me to get dressed in my PJ. The next evening this otherwise everyday routine went more smoothly (i.e. my nails didn’t get stuck in my trousers and I was actually able to keep my leg in the air for two more seconds than the day before). Finally, something to smile about! The third day it almost became a well-established process.

I had to push myself forward but at the same time also give myself and my body the time needed to recover from the relapse – even if the planet outside was moving so fast and I badly wanted to be part of this spinning wheel.

We live in a terribly busy world, where it seems only acceptable to do everything quickly. But you should know that life with MS is slower paced: you are slower, recovery from relapse is slower, morning routine is slower, conquering the world is slower. And that’s why I like the advice “just take it day by day,” so much.

Photo by Victor from Pexels
Terribly busy world!

Life with MS is slower paced.

3. You are allowed to say “NO”

Being kind to yourself means taking time for yourself. Be a little egoistic. You are allowed to say “no” when you feel tired or just not in the mood for company. Now it is time to put yourself first, because the catch here is: you need to take care of yourself first before you can tend to others. “No” can be said very kindly. Nobody will resent you for being honest (if they do, then maybe you should consider if they are worth your time at all). Indulge yourself in that secret stash of chocolate, read a book, treat yourself to a glass of wine that you’ve been saving for a special occasion.

4. Live your life to the fullest

I am quite sure you’re already aware of what it means to live to the fullest: don’t take anything for granted, enjoy the little things in life, be grateful, be present, blah blah blah. This is not something life coaches are selling just to make us feel better in this world of materialism or to just spread “inspiration porn” on social media. This is something that will help you see the bright side of life, keep you motivated to experience more, to dare to try new things, to meet new people.

The biggest point of living life to the fullest is that you learn from bad experience. That you learn to see the positive side. Yes, MS sucks. Yes, I am not grateful for having this disease (“Never! I’d rather be ignorant but healthy!”), but I am grateful for everything I have learnt from it – I have become more attentive to my thoughts, my feelings, my decisions. I’m taking more pride in every achievement and am more aware of what I want from life (“Oh, do you?”).

Living life to the fullest means learning from bad experience.

5. Stick to your interests and follow your visions but make sure they are suited to your abilities.

So, what do I want from life? I want my life to be as normal as possible despite my disabilities.

I want to travel (“Please do, but don’t go on a Himalaya expedition!”). I want to enjoy nature (“Please do, but don’t go too far and don’t get lost, because you know it will take you a lot more energy to get back.”). I want to work (“I agree, but please do it part-time!”). I want to eat healthy, locally-produced food, home-cooked meals (“Okay, you’re good here – you’ve found yourself a partner who can cook.”). I want to be useful to society (“Become a volunteer?”). I want to ski (“Hmm … A ride on a sled sounds more plausible, don’t you think?”). I want to go to more rock concerts (“And go crazy with the others in the front row? It’s totally possible!) ­­­­­– when this stupid coronavirus finally lets us, of course.

6. Don’t be a prick

Having a chronic illness like MS (or any other chronic condition) is difficult (“No shit, Sherlock!”). Leading “the good life with MS” is even more difficult. Sure, we are all angry: about global warming, about the system, about the unfair treatment of marginalized groups … And all of us who suffer from chronic diseases worry even more by continuously asking ourselves: “How is this going to affect my future?”, “Why the hell did it pick me?”, “What did I do wrong?”, “Will I get better and why not?”. But by doing so, we are only wasting energy and becoming more and more bitter which affects our overall view of the world and consequently everyone around us. This bitterness can quickly turn into anger and hatred. But don’t be mean to others, they are not against you. It is you who is against the world.

Photo by Victor from Pexels

7. Tell your story

Talking openly about what multiple sclerosis is, describing my feelings about it, how I cope or don’t cope with it, what means to live with invisible symptoms, what these are and how they impact my life … It made ME more self-aware, and it made THEM (my friends and family) more aware what is like to live with chronic illness. Speaking openly made my life and their lives easier. I’ve become more not-so-egocentric (“Really? Well, yes, I’ve learnt that people around me need to go through a similar process of coping with my disease.”), and they’ve become more empathic to other people with disabilities.

By telling your story you will empower people, not just the ones with the same condition but also all those who suffer from other diseases or just with life (name one who didn’t get hit by the mighty Life!). People will understand you and your situation. They will know your needs better and will try to help you. Like by offering you a hand if you need support climbing the stairs, by helping you find a job that is more suitable to your condition, by improving your living quarters or working environment etc. This is what makes your life with MS easier, so don’t be ashamed to ask for help.

Don’t be ashamed to ask for help.

8. Take note of the zillion pieces of advice on how to cure your illness

Like how some random guy from the same apartment building where your grandmother’s cousin lives cured himself of his MS by drinking celery juice and being on a strict diet of only lobster and wild garlic (“– and air.”).

The thing is that everyone you know will try to help you. That’s perfectly fine; learn to listen (patiently) to other people’s stories about what has made them feel better, but take everything with a grain of salt. It’s important to keep a healthy attitude towards all the new things you want to try out, because even if this thing worked for someone, that doesn’t mean it’s going to work for you.

Listen, but take everything with a grain of salt.

You need balance in everything; do not exaggerate with sports, alternative treatments, the so-called superfoods, listen to your body and what it needs. What you need. And before changing your habits, routine (or even life), remember to do your research. Don’t be afraid of the unknown but prepare yourself for it properly.

9. Don’t be embarrassed to use that damn stick.

And make sure to get yourself a cool one!

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My story

Diagnosed with MS

It’s not that I’m a total smartass, but it’s clear to me that the words that come from the doctor’s side of the desk, “You have multiple sclerosis,” aren’t easy to digest.

Every reaction is a normal reaction

Getting diagnosed with a new chronic illness kicks off our defence mechanisms. We suddenly experience unpleasant feelings completely unknown to us, and our reactions are totally different than in other situations. And when it comes to this chronic illness … No reaction is wrong reaction (“Just don’t go on a murder spree.”). After the first shock (or not), we can develop denial. Disbelief. Apathy. Sign our own death sentence. We give in to depression, an enduring anger. We keep asking ourselves: “Why me?” We may also feel relief finding that our symptoms are really not made up. You finally have a name for what’s going on – a name for it. The name of the nemesis you can now fight. But isn’t it uncurable? It may be, but you can always fight for “the good life”. For better quality of life. For general well-being, social security, social inclusion.


You can always fight for “the good life”.

It’s going to be 15 years since I got diagnosed. Me, a teenage girl with black hair and black make-up around grey-blue eyes, wearing all black, of course. According to my lumbar puncture results I have the following condition: demyelinating disease. WTF does that even mean? Mister Google wasn’t as wise as he is today. I wasn’t even able to type the phrase in the search bar correctly. There were only two results. After some more clicking I discovered the term “multiple sclerosis”. Excited that I finally found something, I went to my mother and said excitedly: “Mom, I have multiple sclerosis!”. She just nodded unsurely and I could catch a hint of fear in her eyes (“Not exactly the words you’d ever want to hear from your daughter, are they?”).

Do the research

Later on, I googled “multiple sclerosis” and got more results. Some forums, descriptions of the disease …; “ok, it’s an advancing one, maybe you’re going to end up on a wheelchair, but you’re not going to die from it”. Browsing the web reminded me of a commercial that had been playing on the television a couple of years earlier: two actresses – a young woman and an old lady were sitting on the porch, chatting and laughing like any other day. There was a stick leaning on the table, and as a viewer one’d think it belongs to the old lady. But no; when saying goodbye, it was the young woman who took it. A pretty powerful commercial, wouldn’t you agree? I admit I have a somewhat blurry memory of this period in my life, but thinking of it now, the fact is that I obviously accepted my “new normal” more calmly than I could have (ever) imagined. The next day, I went to school with the usual smile on my face.

The next day, I went to school with the usual smile on my face.

Keep going

I’m not sure how I was able to cope with my diagnosis the way I did (“Well you didn’t cope with it at all!”). My mild reaction was probably a result of indifference that can be felt only in adolescence. Looking naively into the future, like it is so far away (“Look at you now, living that future!”) Back then, all it mattered was my teenage freedom. I kept living a normal life. With the support from my family, friends and schoolmates, I was doing everything what an 18-year old girl was supposed to be doing, but perhaps in a slightly different style:

  • If I wasn’t able to walk long distances, I grabbed the first elbow that walked past me. (“Is this carelessness?”)
  • If I went on a night out with my friends and was too tired to dance, I quickly got a chair under my ass. (“Is this spoiling?”)
  • When I was afraid to go to the dancing class for my prom because I didn’t trust anyone with my clumsy dancing skills, I asked a friend to be my dancing partner. (“With whom I fell in love later. And kept him to this day – is this possessiveness?”)
  • If I couldn’t walk up the stairs, I went for an IV with steroids. And then for another one and another one … (“Is this drug addiction!?”)

Ok, let’s be serious.

Relapsing-remitting multiple sclerosis: the name itself says it all – it comes with relapses and remissions. Such specific nature of this disease made me believe that life with multiple sclerosis is … well, is actually not that hard as long as I feel better after a shot of steroids. As long as I can still enjoy life with road trips across Europe and shamelessly show off my stumblebum dancing moves at rock festivals (after a nerve-wrecking examination period) – as long as I can do all of these things, everything is alright.

 As long as I can still enjoy life with road trips across Europe and shamelessly show off my stumblebum dancing moves at rock festivals – everything is all right.

Surround yourself with positive people

When I started studying at the university, I began using a more conscious approach to coping with my illness. My desire to work in the field of Educational Studies seemed to fit perfectly into my new normal; I obtained all the possible knowledge of social sciences and applied it to my situation. But discovering different facts about life with chronic illness also led to more and more fears, inner conflicts and identity crises. It made me think a lot about future (“Well, this is the future you live in now!”). My process of coping was definitely long and slow, but I can’t say it was brutal. From thinking naively at first to just letting it be, from falling hard to the ground over and over again (literally and metaphorically) to being completely confused and stressed-out. But in the midst of all the turbulence caused by the disease there was something very still: the people around me.

My life would never be so positive and fulfilling if I didn’t have the incredible support from human beings close to me. Without them, I would never have so much fun and experience so many crazy things. Without them, I would never ski again, I would have never seen the world I’ve seen, I would never wander around European cities. And I would definitely never be confident enough to talk so openly about my feelings.

Love yourself 

Yes, we have managed to live through some stormy years of searching for my true self – me and my MS. I like myself now. I like myself because I can talk about “us” openly. Because I can accept my feelings no matter what they are. Because I have accepted my disease but don’t allow it to get to me. I like myself because I want to always know more about it and because I am living the words “Knowledge is power”. I happily share my knowledge about MS and its invisible symptoms with everyone, whether they want to hear it or not. I like myself because I know how to live a full and active life despite the obstacles that come with MS. I’m taking control over all the things I can control – what I eat, what I do for my health, who I spend my time with etc.

Bearing all this in mind, it’s important to remember there will be always ups and downs in life. The process of coping never ends. Just like MS will never leave me. Oh, how I wish it would! But hope dies last, and what matters is to never give up.

I have accepted my disease but don’t allow it to get to me.

Take care.

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About me

Clumsy who?

I’m Darja and I’m not just clumsy.

I found myself on this planet Earth, where I’ve been living for 30-something more or less turbulent years. My home is Slovenia and I live a quite positive lifestyle. I love long mornings, drinking coffee with oat milk (sometimes spilling more of it than I actually drink it), but most of all I enjoy baking bread (oh yes, that crispy crust when it comes out of the oven and goes directly in between my teeth!). I enjoy meaningful conversations (and this is not only with the two of my black furry creatures) and I like to hang out (and this is not only with my man). I approach the world with playful curiosity and I believe with all my heart that there is something to learn from everyone.

I believe with all my heart that there is something to learn from everyone.

I am forced to live with a scary little monster called “the MS”. She follows me wherever I go – she is with me whenever I fall (which, BTW, I already master to perfection), and she always stays to see the whole charade I usually put on trying to pull myself back up on my wobbly legs (without attracting too much attention, of course). And when this happens I mumble to myself how it really doesn’t matter how many times you kiss the concrete, what matters is that you keep getting up. And now, after 15 delightful years of such glorious and inglorious adventures, I feel competent enough to:

  • Add my voice to raising the awareness on multiple sclerosis
  • Be a smart cookie about life that is full of obstacles but at the same time fulfilling and colourful
  • Be carefree, have fun and carry on regardless

Thinking out loud, rambling on paper and surrounding myself with a gang of positive-spirited people, I’ve managed to find myself in this exciting life I lead with my MS. Ever so confused and laughing at myself, I continue to search for balance, laying it all bare and exposed in this tiny little corner of the vast online universe. I really am not just clumsy – I am clumsy, but I do it with style!

I’ve managed to find myself in this exciting life I lead with my MS.

This is going to be so much fun; I can’t wait!

Ms. Clumsy with Style