Mila’s MS Story

June 10 will mark five years since Mila was told she had Multiple Sclerosis.  It was a matter-of-fact discussion with a neurologist that left her feeling shocked.  For Mila, there are still days when the reality of MS seems as incomprehensible as it did when she was sitting in that office.

Although she initially felt uncomfortable discussing the illness, her story is inspiring and empowering.  She sets a strong challenge to those carrying ailments, seen or unseen, to find strength in their vulnerability and challenges us to show care and compassion to those around us.

You probably don’t know…

Until now, my Multiple Sclerosis isn’t something I have felt comfortable discussing with very many people. I thought it made people feel awkward. How is a person supposed to react when you tell them that you have a condition like MS? A lot of them have trouble reconciling me – a person who looks relatively healthy – with the ailment.

I have also never felt very comfortable discussing it because by all standards I’m a lucky person. My MS doesn’t appear to be progressing at a particularly fast pace, so I’ve never felt like I’ve had much of a right to go on about it. It’s almost like some sort of reverse-tall-poppy syndrome; I don’t want to talk about my MS as it’s not as bad as another person’s MS; I don’t want to talk about my illness, as it’s not as immediately life-threatening as another’s illness.

I am also conscious of the fact that many people I know and love are dealing with all manner of health issues. We are all dealing with something! We all feel tired, we all feel ill, so what gives me the right to feel any different to anyone else?

My diagnosis

I first noticed a faint tingling in my feet back in 2013, one morning after I donated blood. Initially I thought it was a side-effect of the donation, but when I called the after-care service they were perplexed.

As the days passed the tingling became worse and spread up my legs and lower back, eventually manifesting in my hands and forearms.  It was like that feeling you get when you’ve forgotten your gloves in the snow – the icy numbness that somehow feels like you’re being stabbed with a thousand tiny knives. My legs felt like they were made of concrete.  Every single movement required all my will power.

The feeling lasted for three months.

And yet, on the outside I looked completely fine. My legs and arms didn’t swell up. I still walked normally. I simply felt the pain.

I saw a doctor who referred me to a neurologist and was sent for an MRI on my brain and spine.  After that I had a lumbar puncture (which made me more sick than I have ever been in my life) and they told me I had ‘oligoclonal bands’ in my spinal fluid due to a nervous system inflammation.  This confirmed I have MS.

What is MS?

Unless you’re directly affected by MS, you probably don’t know much about it. Why would you? Until my neurologist told me I had it, I’d probably only thought about the ailment a handful of times in my life – and even then it was in a ‘thing-that-happens-to-other-people’ way.

Multiple Sclerosis is an autoimmune condition that essentially attacks your brain and spinal cord.  It manifests in different ways in different people. Some people will have problems with balance and mobility. Some people have trouble with sight or speech. Some people experience numbness or pain in different parts of their bodies.

My particular brand of MS has manifested itself primarily through problems with my arms and legs, as well as fatigue.

Luckily, I haven’t experienced a lot of pain since my diagnosis, but I still have days when I will feel a numbness or weakness in my limbs (particularly in extremes of weather), and I am working on listening to my body when this happens.

The biggest impact that MS has on me now relates to my fatigue. I am tired A LOT and I have to work hard to manage that tiredness. I don’t make a lot of plans after work as I need to go home and rest. If I don’t get at least one sleep in during the weekend the following week is difficult. I have to nap during the day now and I never did that before. I manage this as best I can, but often it is hard.

A self-imposed silence

Right after my diagnosis I decided that no one else needed to know bar my family and a few of my closest friends. But as the days and weeks passed and my loved ones shared the news with their friends I started to feel really frustrated.

Why did I feel like I had to stay silent when others were not? I wasn’t angry with them, it was only natural they would want to share the news so they could cope with it.

I was frustrated with myself for my self-imposed silence. I didn’t want to draw attention to myself or have people think I was looking for their pity.

I used to lie. I used to say that I was just feeling a bit under the weather, or I was just a bit tired, but that in itself became exhausting.

But now, five years on from that brutal day, small aspects of my life are starting to be more and more affected by it.

It’s time for me to be honest.

Why open up now?

As the years have passed, I’ve felt more and more compelled to do something to raise awareness about the condition.

It’s time to shake off my fears and hang-ups about how people will see me after they learn about my condition. MS is bigger than me and it is too important for me to continue feeling uncomfortable about people knowing.

There are people all over the world who are affected by MS and are fighting to do something about it. It is time to be brave and say: this is something which impacts me and I want to fight as hard as I can to make life better for myself and for others.

I would also like to show that it is possible for a person to be both afraid and brave; both vulnerable and strong. We can be many things at once. If some days I feel weak, frustrated or horribly afraid about what might happen, that doesn’t mean I can’t show grace and strength on other days.

Sometimes living with an illness makes you feel a little bit alone. I have had a lot of support from friends and family, but at the end of the day, they can’t climb into my skin and feel what I feel. They can only hear what I choose to tell them.

So, most importantly, I am writing this for others that are like me. If there is a person reading this that is carrying something; some illness, sadness, loss, or some kind of pain, this is my way of reaching my hand out to you to say you are not alone. I understand you may be frustrated, confused and hesitant because I have been those things too.

There are many like us and there are many that would like to help us. We just need to let them.

Bringing us closer

While I am extremely nervous about putting all of this on paper and having people that matter to me read it, my hope is that it will spur others to action. The theme for this year’s World MS Day is ‘Bringing Us Closer’ & I hope that by sharing my story I will have helped achieve a small part of that goal.

I hope that like me, those carrying a burden will feel empowered to talk about it with the people that matter to them. I hope that those who care about a person going through something like this will gain the courage to ask questions, listen to the answers and perhaps provide steadying arms to hold us when it all feels a bit much.

Until we find a cure for MS my challenge to all of us is to find strength in our vulnerability; to find the courage to ask the hard questions and be prepared to give and receive answers that may be confronting, but that ultimately free us to care for, and be cared for, by those around us.

Please support the amazing work that the MS Society UK do by donating at donate.mssociety.org.uk