(This article was written in May 2020 and first featured in the Journal.ie)
When I was diagnosed with Multiple Sclerosis in 2010 I didn’t think I’d find myself sharing tales of how I manage my illness. Actually, at the start, I didn’t “think” at all. I was in a fog of taking each day as it came and ignoring it as much as I could.
I was busy, you see. I had a wedding to plan, and I was moving house and I had a busy job. MS was an inconvenience that I just didn’t have time for.
Looking back I probably had MS symptoms on and off since I was a teenager. When I got diagnosed at 29, I now know I was in the middle of a huge relapse. In April 2010 I lost the use of my right hand. It went totally numb, but it happened gradually. It started with pins and needles in my arm and right side of my face. Then I realised the entire right side of my head was numb.
I remember having an itch in my ear, but not realising I was scratching at it, because both my ear and hand were numb. I ended up making the itch bleed. As it was gradual, I went to my GP a few times.
We thought it was a trapped nerve at the start, but it got worse and spread, so on my third visit to the surgery she suggested it could be MS and I got a referral to Neurology. By the time my appointment came around, I went private, it was about six weeks later and the relapse had started to impact my balance and I had more sensory issues too. I was diagnosed pretty quickly at that point.
After diagnosis, I had to decide what type of treatment I wanted to go on. This is really a personal decision, to be made between the person with MS and their neurology team. Some people decide not to take any medication and get on fine. Others need more drugs and supplements to help manage their symptoms.
My decision-making process pretty much boiled down to “how many times a week am I willing to inject myself”. It was explained to me that with early intervention, and getting on a treatment plan, my MS should be manageable for the long term. Again, this depends on the person – two people can have the exact same symptoms and treatments, but their MS will progress differently.
Over the years I moved on to different treatments, and I am now taking daily oral medication. The joy of not having to inject any more hasn’t gone away yet! Ten years on from diagnosis I count myself very lucky that my MS hasn’t progressed much at all.
From diagnosis to living
After diagnosis, my wedding and house move – two moves at this stage, and soon to be a third – came and went. The job got busier. However, MS raised its head every now and then, to give me a bit of a jolt and to remind me that it was still there. I started to feel a bit isolated, even when in the company of family and friends. They were a great support, but they didn’t get it. How could they? A lot of the time I didn’t get it myself.
I was living in Dublin when I got diagnosed, so it was easy to get to my appointments and scans. A year later, we moved up home to Donegal. Anyone who lives there knows that the access to hospitals and treatments, for any illness, generally involves a trek. To put it mildly. I counted myself lucky that I only had one relapse that needed hospitalisation during that time, especially as the hospital in Sligo was a 2.5-hour drive away.
I have little flare-ups all the time, some so small I won’t even notice them. Right now, my left leg and foot are tingling away, but it’s not bothering me. It is probably because of the heat here today. Heat is one of my triggers. When the weather gets warmer from April onward, I notice my symptoms more.
My usual symptoms these days are numbness and tingling, fatigue, blurry or sensitive eyes and needing to have a wee all the time. Fatigue is usually the worst one. It is so hard to explain what it feels like, it isn’t just being tired from a bad night’s sleep. It is kind of like trying to cross a road and realising you need to run to avoid being hit by a car, but you can’t get the energy to move any faster.
I don’t get fatigue very often, but when I do, I usually go to bed pretty much straight after work and stay there until the following day. Weekends end up being written off because I can’t get enough energy to do anything. Any stressful periods in my life definitely cause a flare-up of symptoms, which of course are the times when I need it the least!
I have systems in place like keeping my social diary clear when I know work is going to be particularly busy, so I can rest more at home. Taking time to exercise and make sure I am getting a good balance of food helps too, even though it doesn’t come naturally to me.
When I was living up home, the local MS Ireland Regional Office and voluntary branch were a great resource for me. I had a home visit and I knew I could contact them if I had a problem. I called the regional office and the national MS Infoline a few times to get information and support. Those calls always left me with a feeling that I’d been listened to. I still didn’t know many people with MS though, so I started spending more time looking for online groups and websites that I could connect to.
In 2013 MS Ireland put out a call for bloggers. I’d never blogged before, but I like writing and I decided to give it a go. I submitted some pieces and got a place on the blogging team. At the start, I was a bit scared about putting myself out there, but in hindsight, it is one of the most positive things to have come out of having MS.
Straight away I was part of a group of people who understood. There was no need to explain the fatigue, pains and those times the words just won’t come out in the right order. MS is different for everyone. There are over 9,000 of us living with MS in Ireland. Chances are you know someone with it, and they look fine.
A lot of people with MS live full lives, doing the same things as their peers. Diagnosis often happens at an age where people are getting married, having families and progressing through their careers. For a lot of people with MS, a diagnosis hasn’t stopped them doing those things, but it will have had an impact on their decisions and plans.
To an outsider, their illness wouldn’t be obvious at all. I found that hard to imagine when I was diagnosed because before then I didn’t know much about MS. My limited understanding was that, before long, I’d need to use a wheelchair or walking aid. Of course, a lot of people with MS do use them, but it isn’t always the case at all.
The symptoms I have daily are mostly invisible to others. In the past, I’d nearly end up apologising to people for not being “sick enough”, when I felt my reason for not doing something wouldn’t be believed.
MS in a pandemic
When Covid-19 restrictions hit Ireland, the entire country was thrown into a panic about staying healthy, trying to work from home, keeping away from family and friends. Events got cancelled, people faced the disappointment of having to postpone special occasions. Our house was no different.
We packed up our workstations and set up two desks to work from home. The house and our hands were scrubbed until they were shining. We cancelled trips away, special occasions and meetups with friends.
In the back of my mind though, there has been a small voice asking “now do they see, even a tiny bit?”. People with chronic illnesses and disabilities have been asking for the option to work from home for years, often getting told that it can’t be supported, for a whole list of reasons.
I am very lucky when it comes to my own work because I’ve never had to hide the fact I have MS. I was working here when I got diagnosed, so my colleagues have learned about it alongside me and have accommodated me when needed. I very rarely take a day off for MS now, but I occasionally will take a couple of hours off if I feel I might be starting a flare-up.
Sometimes a good rest and switching off will stop it before it starts. MS factored in our decision where to live, though. I wouldn’t be able to cope with a long commute on top of working full time. So, we purposely picked a house near to my office so I can get to work in 10 minutes.
Working from home, even a few days a week would be a game-changer for so many people with MS and other illnesses. It is infuriating that in some cases, experienced, excellent workers have to give up their careers because their illness isn’t accommodated by employers. I’m grateful that’s not the case for me.
Sometimes it is only something relatively minor that prevents a person coming into an office setting, but they are absolutely fine to work remotely. In my case, MS affects my bladder, so a desk nearer to the toilets is an easy accommodation for me, but on days when it is particularly bad it is obviously easier to work from home. There are days where it takes all my energy to shower and get dressed, so on those days my energy would be better spent working in my PJs until I feel a bit better. Neither of my examples involves a huge structural change in any organisation but makes my life so much easier
I think Covid-19 has brought out a wonderful community spirit in Ireland. The stories of how businesses, groups and individuals have pulled together to help each other have been such a relief from the battering the country has taken. It would be lovely if, when Covid-19 is all over, our communities could continue to put the same effort into making life easier, safer, and welcoming for everyone.