Today is World MS Day so I want to talk about this disease that caught me completely off guard last year. I never thought it could happen to me, I was leading a healthy lifestyle and never had any bigger health problems. It literally happened over night – one day I was fine and the next day my body started acting out. After weeks of visiting different doctors and going through various tests I got my diagnosis – multiple sclerosis.
What is MS?
Multiple sclerosis (MS) is an autoimmune disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. It can affect any part of the body but some of the most common symptoms are numbness, impairment of speech and of muscular coordination, blurred vision and severe fatigue. The cause of MS is yet unknown and there is still no cure for it. The progress, severity and specific symptoms of MS can vary from person to person and cannot be predicted.
The first symptoms usually start between ages 20 and 40 and women are more often affected than men. Most people with MS have attacks, also called flare ups or relapses, when the condition gets noticeably worse. They’re usually followed by times of recovery when symptoms improve but usually don’t go away completely, that’s called remission. For other people, the disease continues to get worse over time.
In recent years, scientists have found many new treatments that can often help prevent relapses and slow the disease’s effects.
My experience with MS
Like I said – it literally happened over night. One day my left leg suddenly started feeling weird. It felt numb and tingly, sort of like it has fallen asleep but no amount of moving or stretching helped. The feeling only grew worse over the next few days and I noticed that it’s also very sensitive to the cold – it felt like I got punched when something cold touched my leg. After a few days I also noticed that I’m terribly tired, I just wanted to sleep every few hours and it was getting harder and harder to even function when I didn’t listen to my body and got some rest. The fatigue that I felt is hard to describe because I experienced nothing like it before. It’s not just being tired but it felt more like the whole body was shutting down. My brain got foggy and it was hard to think and to even comprehend what’s going on around me, I started feeling dizzy and my vision wasn’t clear anymore. It also became hard to form sentences and I started slurring a bit when talking. My whole body felt heavy and it was an effort to move around or hold things. It was extremely hard to function in such state and it took a lot of effort which only made me more exhausted.
My insurance enabled me to go on part-time sick leave so I was able to be at home in the afternoons and take as many naps as I needed. Still even 4 hours of work were sometimes too much to handle but there were also days when I felt better and I was able to work more so it sort of evened out. Luckily most people at work were very understanding and supportive.
My life has changed drastically, I didn’t have enough energy for most of my free time activities that I enjoyed doing. I was a very active person before – I went to the gym almost every day, I prepared dinner every night, I enjoyed playing with makeup and writing this blog, I liked hanging out with friends – and then I suddenly had no energy for any of it anymore. Most days I was just lying on the couch, doing nothing, feeling completely drained.
Also it all started about a month before my wedding. I’m one of those girls who dreamed about a wonderful wedding for my whole life and I was so excited about it but my disease had other plans. I wasn’t able to be quite myself on the big day, I was extremely tired and I just can’t remember parts of it, it’s all a bit foggy. It still saddens me to think about it and I really wish it could be different. Still, it was a beautiful event and I have many photos to remind me of it and most importantly – I’m now married to a great man who stands beside me.
Luckily I’m currently in remission so the symptoms are mostly gone. My leg is still slightly numb and it probably won’t ever recover, also my brain get a bit foggy when I’m under a lot of stress and I get tired quicker. But I’m mostly fine, more than fine! My life is back to normal and I try not to get affected by the knowledge that it can change at any moment and I can fall into another relapse again. I know there is probably more trouble waiting for me ahead but I want to deal with that when the time comes and enjoy my (mostly) symptom free life while I can.
Dos and Don’ts
You might be wondering what are some dos and don’ts when interacting with someone who has MS. Here’s a list that I compiled with the help of Reddit.
- Don’t compare them with others who have MS. This disease is different for everyone. Knowing someone who has MS and “is doing fine” doesn’t mean that someone else with the disease will also be “just fine”.
- Don’t ask them how they are and then be diminishing or dismissive of what they tell you and don’t compare yourself to them. It sucks to confide in someone just to get back something like “that doesn’t sound so bad” or “that happens to me too”. Often when I tried telling others how tired I feel, I got an answer along the lines “I’m tired too, I slept bad last night. Just get a cup of coffee.” No no, being tired from not sleeping enough can’t even begin to compare to the fatigue that I experienced because of MS and no amount of coffee helped, it even made things worse.
- Don’t expect to see the symptoms to believe them. MS is a disease that often doesn’t show on the outside but that doesn’t mean that someone’s life isn’t gravely affected by it. This is also the topic of this years World MS Day so I will focus on it more later on.
- Don’t offer advice on cures unless specifically asked. MS is an incurable disease so there is no real cure yet. There are some things that are supposed to help a bit (like a healthy lifestyle) but it’s really not necessary that any of it will make a difference. I know you want to help but I get a lot of unwanted advice and it gets really tiresome. It’s impossible to try out every diet, herb or oil that gets suggested even if I wanted to and trust me, I already made my research and decided what to try and what to ignore.
- Respect us. Respect our privacy and our decisions. Some of us like to talk about it and some don’t want the public to know. It’s our decision how to deal with it and who to tell.
- Listen. Allow us to talk about MS, allow us to try to explain how we feel and take it seriously even when you can’t really imagine how it feels. Don’t try to fix it, just let us talk and vent.
- Distract us. The disease won’t go away so we need some healthy denial. That’s after everything that should be done is already done (doctors, medications, etc.). Then we need to sort of forget about it and move on with our lives. This is when the distraction comes in handy so we don’t get caught up in destructive thoughts.
- Help. It often gets hard to get through a regular day so offer to babysit (if we have kids) or bring dinner or help with grocery shopping.
My Invisible MS
“You don’t have to see my MS symptoms to believe them” is the slogan of this years World MS Day and it’s also a topic that’s very close to my heart. I don’t even know how many times I’ve heard “You look fine so it can’t be that bad.” from the people around me. It hurt me deeply because I really felt horrible, I was barely functioning and my life was falling apart but many people didn’t take it seriously because “I looked fine”. Rumors of me lying and faking the illness spread across the office among some. Luckily most people were very understanding and supportive so my reputation was not hurt too much but some damage was still done. Even some of my closest ones had a hard time understanding and supporting me in my struggle because they couldn’t see what was happening to me. It was painful and exhausting to try to handle all the changes that were affecting my life and at the same time also handle the reactions of everyone who didn’t take me seriously or even tried to use my weakness to take me down. I’m grateful for each and everyone who believed and supported me, I really needed them.
Symptoms like numbness, dizziness, fatigue, pain and many others are not visible on the outside but they still affect our lives a lot. I know it’s hard to accept something you can’t see but please try. Your support is invaluable to those with MS.
To get more accurate data and more information which I could share with you, I helped myself with the following pages:
Got any more questions about MS or how it’s affecting me? Just ask, I really don’t mind talking about it! 🙂