Multiple Sclerosis (MS) What is it?
The International Day of Persons with Disabilities was in agreed in 1992 by the United Nations General Assembly. It is held on the 3rd of December every year and aims to ‘promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities.’ To find out more about The International Day of Persons with Disabilities please click here.
As part of our series of ‘Our People’ articles, Charlotte, one of our Fruugo team members would like to share her story of living with MS on this awareness day.
Multiple Sclerosis (MS) What is it?
‘Gosh, you would think this would be a straightforward answer but alas, of all the autoimmune diseases out there, my tiny five foot body decided it would settle on one of the most complicated ones! (Anyone who knows me, knows everything about me is a little bit ‘extra’ anyway.)
It is a disease that is caused by your immune system attacking your brain and your nerves, this results in a whole bunch of symptoms which I am still pretty new to, but am going through nonetheless.
The first time I ever got any symptoms, I remember being excited to throw myself back into my work as a barber at the time; it was towards the end of the pandemic, I hadn’t worked for nearly a whole year and was honestly on the verge of losing the will to live from being in the house all day every day.
Anyway, I woke up anticipating the day ahead — I decided it was going to be a good day at work and I was happy to be back in a routine I was so familiar and comfortable with. I got through the day as I normally would, running on caffeine, anxiety, talking like it was going out of fashion and just generally not really paying much attention to myself. When I got home and decided it was finally time to relax, I noticed that the numbness in my leg that I noticed earlier that morning hadn’t gone, (I just put it down to me sleeping funny on that leg, as most people would) but shrugged it off and didn’t think much of it.
Fast forward to a couple of days later, this numbness in my leg had now taken over my entire body, including my hands — which I needed for work. I had also become really weak, I couldn’t lift my arms for very long, I was struggling to walk properly because my legs felt like jelly constantly, my hands were so shaky and numb I couldn’t use them for much, oh and the back pain was hellish. I remember ringing the doctors and because of the ongoing pandemic, they wouldn’t see me in person — instead they told me it sounded like I had a slipped disc or sciatica, not to worry, it would go away soon with the right painkillers.
I set up camp on my couch for the next 3 weeks, I felt right back to square one, in the middle of a pandemic with no work, no hobbies and no motivation. Soon enough, it got to the end of these 3 weeks off work and safe to say, I did not feel any better and now I was getting a little suspicious and thinking maybe it’s something other than a slipped disc or sciatica. Due to my own health anxiety, I did the best thing for myself and stayed well away from Googling symptoms because it takes you down a rabbit hole that usually ends up with you having about 3 days left to live, so hurry up and tell everyone how much you love them quick! But I did ring the hospital and explained everything to them, they then decided they wanted to see me right away because it sounded serious. So off I went, blissfully unaware of what was actually going on!
After a few weeks in and out of the hospital, MRI scans, a lumbar puncture, too many blood tests to count and some IV steroids, I was finally told what was wrong with me — Multiple Sclerosis. It has been one hell of a journey so far and I know it is far from over, but I remain hopeful that I can live a normal life with it. Hopefully sharing this experience will give other people hope and give a little bit more of a clue as to what it is and what life is like living with it!
MS is basically my immune system attacking my brain and nerves (apparently not on purpose though, is this reassuring?), which means that my immune system is a lot more welcoming now to viruses, bugs and colds — it basically rolls out the red carpet for all of these and can’t wait for them to come inside and show them the venue. It also means that any illness I get will temporarily flare up my MS symptoms, so it doesn’t feel as easy or as quick now to recover, basically it sucks. So, I thought I would list some of the symptoms that I have experienced so far. I also want to list them as many people I tell I have MS to say that they don’t really know what it is and because I still look fine on the outside, I feel like it doesn’t come across as serious as what it actually is.
It is an invisible illness and disability, which to me is even scarier, because each day I wake up not knowing what it is up to or which part of my body it may or may not affect today. Another strange little thing about MS is that no two people that have it will have the same experiences, it is unique to you, which means the symptoms that I have had over the last year may never affect another person with MS — it is very unpredictable, and I am just here along for the ride. So here goes nothing…
- Numbness — sometimes in just one arm or hand, sometimes everywhere
- Pins & Needles — I know everyone has suffered with this at one point, but sometimes it can last all day for me
- Lhermitte’s phenomenon (Spine vibrates when I bend my neck) — this is probably one of the most strange symptoms as it doesn’t hurt, it just feels really odd and makes me feel like my body has just received a text message and is vibrating like a phone??
- Weakness in mainly the right side of my body — it is not all the time, but when it hits I usually need a walking stick for support. Which can be confusing for people as they wonder why one day I am limping about and the next I am fine.
- Fatigue — I am so sleepy, I am not sorry.
- Cramping in legs — I know people earn these after they exercise usually, I earn them by getting out of bed.
- Regulating body temperature — I am either too hot or too cold, very rarely these days am I just a comfortable temperature.
- Regulating emotions — definitely not as unstable as teenage me, but can still be just as hard.
- Brain fog & Cognitive problems — it can be very hard for me to focus or even retain information
- Memory problems — this is a hard one, but sometimes it can make me giggle if I find myself getting a pan out of the cupboard to make myself a cup of tea
- Aching — this one never really lets up and happens everywhere in my body
- Headaches — pretty self explanatory
- Sexual Problems — enough said
- Bladder & Bowel issues — need I go into anymore detail with this one?
- MS Hug (Dysesthesia) — it feels as if someone has constantly got their arms wrapped around your torso or neck pretty tightly and can be super uncomfortable
- Muscle spasms — I’m not dancing, my muscles are
- Random Shooting pains — anywhere, anytime
- Itching — promise I’ve not got head-lice or fleas, I’m just itchy
- Dizziness — you know when the room spins when you’ve had way too much to drink? Sometimes I get that from doing nothing
Mental Health Issues — I feel like this is kind of an obvious one, but still a hard one nonetheless
Well there you have it, a long and kind of detailed list of what I have experienced so far.
This year I have begun my treatment, which is called Ocrelizumab; it is given to me as an infusion, so I am on a drip for around 6 hours the day that I am going in for it. Beginning treatment was very confusing for me as I remember my neurologist saying a lot of MS treatments are very similar to chemotherapy, they are designed to make your body go into remission — so that you don’t experience any new symptoms.
Any treatment given is also not a cure as there is no cure yet (I remain hopeful as it is becoming more common these days), the treatment is just to slow the disease down and stop it from causing any new symptoms. Unfortunately for me though, this means that the symptoms I have now, I will probably have to live with them, which isn’t great, but it also doesn’t stop me from leading a normal life. The reason I enjoy speaking and writing about what I am going through is because before finding out I had it, I had no clue what it was. I used to see it as this big, scary thing and people would react by saying ‘oh no, you poor thing, that is awful.’ But the truth is that it isn’t as awful as you think. My body is basically an angsty teenager that is rebelling constantly, and I am the parent that needs to look after it and try my best to nurture it anyway.
I hope that this has explained what it is a little better that what I could say in person as I am not very good at that. For more information though, one of the most helpful websites I found was the National MS Society. I also have my own blog so that I am able to keep up to date with it all and share my feelings.
Charlotte Devlin ☺️
