In or Out of the MS Closet?

I’ve been writing this post ever since November 2020. It’s stayed as a draft on my laptop for the longest time – I’ve just been adding to it as and when my thoughts come. The only reason I decided to publish is because I was told that nearly 7,000 people are newly diagnosed with Multiple Sclerosis (MS) a year. MS affects everyone differently. The symptoms are so varied, as are the treatments. So why do we expect that people’s feelings will be any different? I know that everyone will handle their diagnosis differently but if anything I say here will help, it’s worth a shot:

Receiving my diagnosis

Imagine: I’m 23 years old and just about to start my training contract to become a solicitor, my dream job since I was little. A few months before I was due to start, I’m diagnosed with Multiple Sclerosis (MS), a progressive condition with no cure. Fantastic.

I couldn’t understand – I’d never been sick in my life – I was always that one, slightly annoying, overachiever at school, that never missed a single day. I have parents that, I’m only slightly embarrassed to say, are 100 times healthier than me, but ensured I always had a very balanced diet. So, for a long time, even though I couldn’t feel my feet, I refused to accept that anything was wrong. I did what I always do – joke my way out of it. So what if I couldn’t feel them? Every short girls dream come true! Being able to wear heels pain free, all day, every day.

But months later, the feeling in my feet still hadn’t returned. Numbness turned to pain, which travelled up both my legs, which meant I wasn’t able to walk for more than 10 minutes. When I started to lose feeling in the right side of my body, I called 111 and spent the night in A&E.

I appreciate how busy and overwhelmed the NHS is right now – so I didn’t complain when the doctor made me wait for 10 hours and just told me I needed an MRI. When I was referred to a neurologist, who requested I be given it as a matter of urgency, I was told I was on a 12 week waiting list.

So I did what any reasonable person would do, and googled my symptoms – call me Dr Pelosi, but I convinced myself I was either dying, had an air embolism in my spine or… had MS. I was told the MRI would be the determining factor.

I don’t know how mums have a way of always getting things done – if anyone knows please message me – I called up every day to try and chase it up. My mum called once, got me transferred to the urgent list and I had my MRI a few weeks later.

A couple more weeks went by and I still hadn’t received the results. Instead, a BUNDLE of documents came through the post, with appointments scheduled for me to meet with MS Specialists. My heart sank – why would I need to see them if my MRI didn’t show I had it? I cried for 3 days straight, arguing with everyone that tried to tell me to stay positive, I might not have it. But when you know, you know. No one could feel what I felt. It was my body, I knew something was wrong.

What is MS?

On the 12th May 2021, I was diagnosed with highly active, relapsing remitting multiple sclerosis. When I heard the words come out of the neurologists’ mouth, it was a relief. I was happy to finally have answers.

When I first suspected I had MS, I was terrified, thinking that in a few years, I would be paralysed and wouldn’t be able to do the things I love to do. I had no idea what MS was, let alone that medication existed to help with the effects:

I met with different specialists who tried to explain it to me, but all I heard was ‘chronic,’ ‘progressive,’ and ‘life changing.’ People kept trying to re-assure me that I could still ‘lead a normal life.’ But what does that even mean?!

I lashed out at those who were trying to help me – I was terrified, the question I wanted an answer to, no-one could tell me: how bad is it going to get??

Working with a disability

But however angry and frustrated I was, above all, I was embarrassed. I thought if people found out, I’d be thought less of. Why did I have to be diagnosed a few months before my training contract??! The most important 2 years of my life.

I love being busy at work, the person people can rely on to get things done. I work well under pressure and have always worked as hard as I can – just ask my english teacher. Before our A-Level exam, she suggested we attempted a few past papers, writing essays. I wrote over 50. I’ll always be thankful to that woman for spending god knows how long grading them. Anyway, I love my job and put everything I have into it – but with this diagnosis, I thought that wasn’t enough anymore. I was scared I’d be treated differently, so I pushed myself to come back to work before I was ready.

When they’re diagnosing MS, you have an MRI, a visual evoked potentials test, a heck load of blood tests and a lumbar puncture. I was told the lumbar puncture wouldn’t be something to worry about, you wouldn’t feel it at all, you’re anaesthetised. The doctor I had did the anaesthesia perfectly. But was unable to find the correct part of my spine to inject. Apparently, it was because ‘I’m too small….’ Ok. When I say it was the WORST pain of my entire life, I’m not exaggerating. It was the craziest feeling, a dull pain in my back, then my entire left leg immediately felt like it had been set on fire. According to him, that’s how he knew he was in the right spot. According to the second doctor that had to take over, after his 3rd attempt, that’s how you know you’ve hit a nerve.

The side effects of a lumbar puncture are dizziness, sickness, headaches, the usual fun stuff. Think of the worst hangover you’ve ever had, multiple that by 100 and that’s how I was feeling. I still joined my work meeting, from my hospital bed. Don’t get me wrong, I was specifically told not to, that I should rest etc. but my own insecurities and stubbornness got in the way.

The same reasons why I drove the usual 2 hour journey into the office the next working day. I remember talking to some of my colleagues, who I had felt comfortable telling about my diagnosis, some of the sweetest people I’ve ever met – they were giving me the most amazing pep talk and I had to leave half way through, ran to the bathroom and just threw up everywhere. I had to call my parents to come pick me up – obviously my mum drove my car back, no way was I risking getting that dirty – I sat in my dad’s car, throwing up into a plastic bag the entire journey home. When I got home, I rested for 30minutes and went back to work.

To this day, my symptoms have been getting worse and worse. Some days I felt crappy and couldn’t move without everything hurting. My right hand started to go numb in March. As with my feet, numbness soon turned to pain. Being right handed, I found it really hard to work – but how was I supposed to explain to my colleagues there was something wrong with me, when I looked perfectly healthy?? I didn’t say anything to anyone as I didn’t want to be the one that complains and makes a drama.

De-Stigmatising Disability

But I learned that if you don’t ask, if people don’t know you need help, you’re never going to get it. I’ve spoken to a lot of people that were worried about telling their employers – for me, it was never a question whether or not I would tell him. He was one of the first people I called when I found out my diagnosis – and he’s been nothing but supportive since, never treating me any differently and always making me feel comfortable to ask him anything.

I’ve finally come to the realization now that having a disability isn’t something to be embarrassed about. It’s not as uncommon as I thought it was? I got shouted at the other day for parking in a disabled parking spot – some days, I have trouble walking long distances, other days, I’m completely fine. I would never shout abuse at anyone, but it got me thinking, if I had never been diagnosed with MS, would the same thought have crossed my mind? Seeing a seemingly healthy person use the disabled spots? We all just need to remember and be respectful of the fact disability isn’t always visible.

I don’t know why I thought that this would make me a worse lawyer? It’s actually made me better. It’s forced me to take care of myself. Live a healthier lifestyle. Take care of my mental health and work harder — I finally realised (with the help of a lot of people) that you don’t have to overwork yourself to prove you’re capable despite your disability, you should be working as hard as you can, in the healthiest way, to be the best you can, regardless of whether you have a disability or not. So that’s exactly what I’m trying to do. Every day.

I’m not going to lie – to this day, I can’t say the words aloud without cringing slightly. Writing about MS is one thing. Talking about it is completely different. It’s been months and I’m still not comfortable. It’s going to take me a while to accept, maybe a few more weeks, maybe months or maybe years. But that’s okay.

My New Normal – Living with MS:

I read somewhere that carbs exacerbate the symptoms of MS. I’m not sure if that’s true exactly, because I also read drinking hot chocolate every day for 6 weeks is supposed to help. Maybe it will for you? For me, I confirm it did absolutely nothing. I thought it was the end of the world, what kind of Italian doesn’t eat carbs?! No pasta. No pizza. But like I said, I was scared of paralysis, so refused to eat anything other than soup for weeks. I definitely wouldn’t recommend… all it did was make me seriously moody! Reality is, you just need a balanced diet and a healthy lifestyle.

So I’ve made a conscious effort to exercise more and stay healthy – you know those fitness trackers? It used to drive me INSANE every time it buzzed and said ‘time to walk’ or ‘just a few more steps to go’ – I always thought they were so passive aggressive. Just let me be, I’m binge watching Greys Anatomy, I know I haven’t moved more than 7 steps! Now it helps me to stay on track of everything.

Medication:

The thought of having to be on medication for the rest of my life was definitely daunting. I remember the week I had planned to travel to Birmingham to see my friends, I revived a phone call to tell me I had to start my medication. Everyone was worried about me going as they weren’t sure how I would deal with the side effects of such a strong drug. Is this what my life is going to be like? Having to schedule it around my condition? Well turns out, yes. Things I had taken for granted in the past, that I never would have thought was a problem, turned out to be. I had to schedule and plan when I would become pregnant?? I’m a 23 year old soon to be trainee lawyer, it’s not like I’m planning anytime soon for kids, (calm down mum) but just knowing I was limited and restricted was a little overwhelming.

Not only do you have to plan your life around the medication, first things first, you have to choose which one! There are so many different types and they let you choose. So it took me a long time to decide on Mavenclad.

Why? Well, everyone is different. For me, I hate hospitals and injections, so it made sense – it’s just a pill you take once a day, 5 times a week, for 2 weeks out of the year.

So far as the side effects go…well, when I googled Mavenclad (my favourite thing to do), the first thing that popped up: “is mavenclad chemotherapy.” Great. So i’m guessing it won’t be fun. But I couldn’t wait to start. I kept telling myself it’s got to be better than how I’m feeling right now.

I’m just going to share from my perspective, I’m not saying this is a universal truth and will definitely be the case for you if you take mavenclad – but for me, the first week of my medication, I made sure to take it in the evening before I went to bed. As soon as I swallowed it, I felt a little nauseas and sooooo tired, I just collapsed in bed and passed out. But that was it for that week. I couldn’t understand why everyone was making such a fuss about the side effects.

But that week after, boy the week after was pure hell. I’d go to work in the office, trying to get as much in person time as possible, around lunch time I’d get the worst headaches, the ones where you can feel your heart beating and your head just feels like it weighs 10000 stone? I was dizzy and couldn’t eat anything. It was like the time I had my lumbar puncture, except worse (which I never would have thought possible). Honestly the only thing that made me feel better was a hot shower and hours of sleep. I was super frustrated, I just felt like I had so much to do and my body wasn’t keeping up, but, I do feel like it’s starting to have an effect.

“I’ve had to change how I live my life but I’ve realised life isn’t perfect, for anyone, that’s what keeps things interesting.”

Sometimes, my days are harder – disability is not always visible. It’s hard feeling the way I do and no one knows anything is wrong. The most simple of tasks, like walking, or typing, is a struggle. But it’s not impossible.

From fighting my court case, to COVID and now dealing with this diagnosis, it’s easy to describe 2021 as the worst year of my life. But it will always be one of the best as it’s the year I finally felt like I’m one step closer to becoming a solicitor. If anything, my diagnosis taught me to always look at the positive side.

Well, mostly anyway. Anyone that knows me, will tell you my biggest fear is having one of my limbs forcibly removed. Diagnose me with MS, with numb feet and hands, I still have really vivid nightmares where I can’t move. That aside, on the whole, I’m trying to stay positive. It’s a new thing I’m trying.