Myths and Truths About MS

Photo by: Dušan Smolnikar

During all these years of living with multiple sclerosis (MS), I have internalised certain facts about the disease so deeply that sometimes I just go completely blank when someone asks me something like:

“Does your MS hurt when you walk?”

Of course I’m totally touched that someone has so thoughtfully ventured into the mysterious world of “finding out about a secret chronic illness”.

Then I find myself wondering, slightly amused, how they even came up with such a question.

(Well, obviously. I sigh dramatically and make horrible faces whenever I struggle to get to the top of the stairs!)

And then, finally, it clicks.

Of course you can’t know something you haven’t experienced yourself!

Especially not with MS, which seems to have a new trick up its sleeve every single day.

And besides: no question is a stupid question, so I immediately and enthusiastically grab the opportunity to educate my unsuspecting questioner and start explaining, probably making them regret opening the whole topic of debunking myths about multiple sclerosis in the first place.

Within the next breath, which usually lasts somewhere between fifteen and thirty minutes, I recite everything from A to Z!

Including the answer to the original question: MS itself doesn’t usually cause pain when you walk, although neuropathic pain can occur as a result of multiple sclerosis.

Since I don’t particularly enjoy making people uncomfortable with my intense information-dumping, I’ll instead use this light-hearted post about myths and truths about multiple sclerosis to casually “spam” the inboxes of people who, in my opinion, might be interested.

What do you say?

MYTH #1: MS Means Living Life in a Wheelchair

Multiple sclerosis brings plenty of obstacles into our lives. It takes away certain abilities, makes our daily tasks more difficult to tackle, and yes, we may become users of various mobility aids.

One day with a rollator, the next day with a stick, and on Friday just like that … Freestyle.

Without the help of anything or anyone.

Can you imagine how completely incompatible this is with the quantum calculations of your nosy neighbour, who watches you from behind the curtains every single day?!

(Hey, isn’t that exactly why you’re writing this post!?)

Most people with multiple sclerosis are diagnosed with relapsing-remitting MS.

This form is characterised by sudden worsening of symptoms followed by periods when the disease is relatively quiet.

As someone living with this form of MS, I have a reasonably good quality of life. Sometimes I look as though everything is perfectly fine with me (and it is), while on other days it looks as though I have just taken my final steps (and I have, for that particular day).

Because treatment options have come a long way and awareness of an active and healthy lifestyle has increased dramatically, the chances of a person with MS becoming a wheelchair user are getting smaller and smaller (you can find more detailed data in this study).

But hey, “when and if” you ever reach that stage, the stage where you become a wheelchair user, by then you will have learned quite a few tricks of the disease.

You will have acquired a deep, blue-and-all-knowing understanding of life.

You will know that you haven’t lost any battle.

And you will know that, despite all the obstacles, it is still possible to live an active and fulfilling life.

A wheelchair is a damn good tool for maintaining your independence and mobility.

MYTH #2: MS is a death sentence

Ugh.

Death is still a taboo in our culture. We don’t talk about it very often, and we certainly don’t like talking about it. Mentioning death makes us shiver. We would rather wave it away and postpone the subject until sometime in the future.

We turn towards life instead.

But when we get sick, or hear that someone close to us has been diagnosed with some “I’ve-never-heard-of-that-before” condition, we probably ask ourselves one question first, even if only silently:

“Does this disease mean death?”

Multiple sclerosis is an incurable disease.

You live with it from the appearance of your first symptoms throughout your life, but you usually don’t die from it.

Because MS is a progressive disease, death can occur as a result of complications associated with its symptoms. In general, however, people with MS are more likely to die from other conditions than directly from MS itself (see the WHO publication, page 12).

Life expectancy may be somewhat shorter, although the estimate commonly cited at the time of writing was around six to seven years.

MYTH #3: I Can’t Have a Family Because I Have MS

You can have a family when you have multiple sclerosis.

In the past … well, less than 70 years ago? … it was actually discouraged.

Today, pregnancy and childbirth simply require a little more careful medical attention. After giving birth, you may even be given immunoglobulins as a preventive measure to reduce the possibility of a relapse.

One important fact worth mentioning is that multiple sclerosis is not hereditary.

A child born to a mother with MS does have a tiny increased chance of developing the disease in the future compared with a child whose mother does not have MS. However, the risk is still relatively low and, in principle, should not determine whether someone decides to have children.

I’ll soon write a post on the topic of “Multiple Sclerosis and Family Planning”, where I’ll explain why I personally decided not to have children.

MYTH #4: An MS Diagnosis Means the End of an Active Life

Sports?

Travelling?

Partying?

Hiking?

I disagree!

Regular movement and exercise can help you maintain your physical fitness, muscle mass, coordination and balance, manage the fatigue that MS so generously dropped into your life, and maintain your mental well-being.

It is important to get to know yourself.

To know when fatigue tends to appear.

To know when it is less likely to show up.

It is important to learn how to manage your fatigue and adapt your activities accordingly.

I always like to use my own travel experiences as an example.

Partly because I like bragging about all the places I’ve been, things I’ve seen and things I’ve experienced!

But the real point is that you have to follow the advice above. It is just as important as choosing your destination and your method of transportation.

Your travel companions will probably have to adapt, too.

And if you travel alone, it becomes even more important to plan everything carefully, think about all the little traps MS might put in your path, and find out what kind of accessibility and adaptations are available at your destination.

When it comes to hiking, I will always be grateful to my parents for “forcing” me to walk the Slovenian trails as a child, over hills and through valleys, all the way up to the highest mountains.

Especially now that hiking is so fashionable.

(Yep, I still got myself those hiking leggings that are currently being aggressively advertised all over the internet.)

The peaks you conquer may be lower (or maybe not), your sightseeing tour of a foreign capital may be shorter (or maybe not), and you may not cycle across an entire country but travel through it instead (or maybe not).

But partying?

MS itself has a hard time taking that away from us.

Age might be a bigger problem 🙂 .

MYTH #5: MS Follows the Same Course in Every Patient

Absolutely not!

And this is one of the most wonderful things we can hold on to and believe in as people with MS:

“We are the masters of our own bodies. We will tell this multiple-sclerosis monster how to behave and how much space it is allowed to occupy in our bodies.”

When a relapse hits, let’s trust our doctors.

But in everyday life, it is incredibly important to take control with our own claws and manage the areas of life we actually can control.

With a chronic illness, that can mean nutrition, movement and a healthy lifestyle.

Our disease will develop completely differently from that of our best friend in the MS world.

Our disease will not be defined by the fate of another person who happens to have multiple sclerosis.

That is why multiple sclerosis is the disease of a thousand faces.

Unfortunately, or perhaps fortunately, we have to figure out our own version of it ourselves.

Unfortunately, or perhaps fortunately, we will never be able to figure it out completely on our own.

Do you know any other myths?
Categories
My story

My Invisible Illness

Ten years ago (wait, wasn’t it fifteen already?) … I went everywhere. I walked a lot, and I walked fast. My new university classmates didn’t even notice that there was anything wrong with the way I walked until I told them about “The Thing”.

Oh, that first beer we had after those late lectures … And then, naturally, we partied into the night like proper students.

Just like the woman on the trolley bus didn’t notice. She stared daggers at me because I had sat down in the only free seat right in front of her (and I was almost crying with relief on the inside). Back then, my disease was pretty well hidden, a sneaky little thing, except when stress and colds triggered yet another relapse. And when I occasionally went to the clinic to get hooked up to some chemotherapy or carried a disinfected bag full of injection needles to dirty music festivals.

On the other hand … nightclub bouncers always noticed my unsteady walk and, presumably worried about potentially vomit-covered chairs, preferred not to let me go any further.

“How unfair!” I thought back then (and I still think so now), while secretly admiring their dedication to doing their job properly.

Over the years, I became increasingly hesitant as I shuffled through little streets, shopping centres and bureaucratic buildings. But when a stranger first spotted me, any potential stumble, crash or wandering eyes was usually attributed to confusion because, you know … there are plenty of naturally scatterbrained people around.

You can imagine how wonderfully that did wonders for my self-confidence!

The fact that I could barely stand in line to buy my monthly bus pass, that walking in the heat to catch a train made me feel sick, that my blurry vision made it difficult to figure out which trolley bus was going where … those internal battles were invisible to a stranger.

They didn’t notice. They couldn’t notice.

Through all of this, I stubbornly insisted that, apart from my glasses, I didn’t need any additional aid.

After all, I’m doing fine – until I’m not.

And when I’m not, I grab the arm of whichever important walking companion happens to be nearby.

After all, I can see perfectly well – until I can’t.

And when I can’t, I ask some random passer-by for the information I need.

Of course, I admire this fighting spirit of mine and always support it. Still, something about it makes me a little angry …

That feeling of indignity.

The feeling I always had when the world around me gave me that certain condescending look.

The feeling that somehow I was to blame for the way I walked.

Stumbling.

Waddling.

Bumping into things.

The invisible disease became visible

After three years of renting a rollator “just in case”, it happily returned to the pharmacy from its dark corner in our basement, still unpacked and completely unused.

After some serious consideration, this year I finally got myself a sexy red stick, and only then did I discover what walking with a mobility aid actually means.

It means more freedom.

More independence.

More confidence.

It means keeping your eyes open wider (and your mouth too, because you haven’t seen a world like this before).

It means having more time to look around and take everything in (no, bare ankles in the middle of winter are still not cool).

It means stepping more carefully (and avoiding frogs that have been flattened by bicycles).

It means doing things more consciously (keys and coins no longer magically fall out of your handbag).

It means walking through those doors with more determination, knowing that there is something waiting for you on the other side.

And then you meet exactly the same completely unfazed receptionist.

It means …

That feeling of dignity.

But it also makes your invisible disease visible.

An invisible disease suddenly becomes visible from outer space because there you are, holding a stick that tells everyone you have trouble walking.

But …

Did multiple sclerosis really have to chew its way this far into me before elderly people finally started giving me their seats on the trolley bus?

Did MS really have to damage me so much over the years before the shop assistant at the little Mercator started carrying my groceries to the checkout before I had even properly made it through the door?

Did MS really have to nibble away at me so much before people at administrative offices, social work centres and banks started looking at me much more kindly, much more respectfully, much more HUMANELY?

And on the street. On buses. In shops.

(I’m leaving the disability assessment committee out of this.)

Because young people don’t get sick

Because young people are bursting with energy and life. Because young people are healthy.

No, I know. It’s not that black and white.

Of course I had plenty of positive experiences before my sexy red stick, and of course I’ll have plenty of negative experiences after my sexy red stick.

But one thing is certain:

More solidarity. More tolerance. POR FAVOR.

You don’t know what someone is hiding behind their beautiful, made-up, carefully brushed appearance.

And you don’t know what someone is hiding underneath their neglected, smelly, ragged clothes.

Indifference and intolerance are not chronic illnesses, even though they are invisible.

What does it mean for a disease to be invisible?

The term “invisible illnesses” covers a whole range of conditions that don’t show on the outside and therefore aren’t easily noticed by other people.

Invisible illnesses include chronic conditions such as arthritis, diabetes, fibromyalgia, multiple sclerosis, lupus, Lyme disease, celiac disease, migraines, cardiovascular diseases, cancer …

Okay, stop.

Allergies, various food intolerances, infertility, endometriosis, Crohn’s disease, atopic dermatitis …

Is the list ever going to end?

No.

Add depression and a whole bunch of other mental health conditions to it as well.

An invisible illness comes with a whole bunch of invisible symptoms.

I’m speaking mainly from the perspective of my multiple sclerosis. Every day, or at least from time to time, I deal with:

  • fatigue
  • numbness in my legs and arms
  • tingling throughout my body
  • dizziness
  • reduced muscle tone
  • sleep problems (insomnia and restless legs syndrome(!))
  • spasticity (spasms are cramps)
  • heat sensitivity
  • light sensitivity

Balance and coordination problems are probably pretty damn visible symptoms, too. Unfortunately, we all know whom people would rather blame them on …

People with invisible illnesses face misunderstanding and additional stigma.

Besides dealing with the symptoms themselves and fighting for a good quality of life with a chronic illness, a person also has to deal with other people’s lack of awareness, and sometimes even their criticism and judgment.

We are far too quick to believe only what we can see.

Or, perhaps more accurately, what we think we can see.

So, is it really our responsibility to explain the state of our internal organs to a stranger on the bus?

Maybe explain that we have just spent several hours hooked up to an IV and that the medication has left us even more exhausted than usual?

And would they even believe us?

Sometimes it is difficult to explain your illness even to people close to you: neighbours, colleagues, friends.

It takes courage.

It takes the ability to express yourself.

It takes a lot of knowledge.

[Gran Canaria 2020]

Let’s talk. Let’s raise awareness. Let’s be annoying!

With my own little attempt at being annoying, raising awareness and encouraging conversation, I mainly want to point out one thing:

A person who is smiling and in a good mood does not always reflect their actual condition.

A compassionate question to anyone, with or without an illness, is simply:

“How are you?”

“Oh, but this person clearly enjoys her life! She takes life by the horns, travels, socialises, eats well. She probably isn’t suffering that much. And she can stay at home all day! Isn’t that the dream?”

No.

It isn’t.

There is a reason she is at home.

Enjoying life is a matter of perspective.

And when someone with a disability parking permit parks in a disabled parking space, there is a reason for that, too, whether their illness is visible or not.

Disability parking permits are not handed out by local authorities just because someone has a pretty face.

“But it’s all in her head!”

Well, “it’s all in our heads” probably isn’t quite true.

What is usually in our heads is the will, the optimism, the gratitude, the despair, the sadness, the anger …

Our attitude towards the world, things and life.

MS itself is also in our heads, but in a slightly different way.

Physically.

Inside our brains, where it has left its lesions and scars that cause dizziness and fatigue.

Before you ask the next question …

No, resting will not magically make me feel better.

A hundred and one things affect how I feel.

The weather does, even though that may sound horribly superstitious.

Heat does.

A common cold does.

Yesterday’s activity does.

Even a hangover does.

Yes, people with multiple sclerosis like having a glass of wine with dinner, too. You know.

Or two.

Stress-reduction techniques such as meditation, yoga, breathing air and filling your home with the mysterious scent of palo santo are all perfectly good ways to relax.

(Palo santo really does smell beautiful and mysterious!)

They are not-fucking-medicine.

The eating-air thing was a joke.

Oops. I’m getting grumpy.

But honestly, anyone would be if this whole thing about an invisible illness becoming visible only so people would finally notice it and start paying attention wasn’t already completely bizarre.

Shouldn’t every person understand that their whole world can turn upside down at any moment because of one diagnosis or another?

Shouldn’t every person understand that everyone is hiding reasons behind the way they appear in society, whether those reasons are visible or not?

Shouldn’t we all simply enjoy being kind and supportive towards one another?

Why do we always have to invent our own nasty theories about the lives of other people on this planet?

During the first few years, I mostly cried, felt confused and labelled strangers as unfair.

“Maybe they weren’t, Darja! Maybe they had their own story about why they behaved the way they did.”

Now I understand that I’m not the only one dealing with this.

So let’s be mindful.

Let’s be empathetic.

Let’s pay a little more attention to the people around us.

Let’s help.

Let’s be more tolerant of one another.

Let’s listen.

Let’s make the invisible symptom “fighting other people’s lack of understanding” disappear.

Categories
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!

Categories
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.

Categories
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!

Categories
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.

Categories
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