Maria Bonnici – Living with Multiple Sclerosis
I was diagnosed with MS in 2015; the following day, I turned 27.
It came as quite a surprise when the neurologist informed me that I have Multiple Sclerosis (MS). Part of my symptoms included double vision for which, at the beginning, I presumed there was something in my eye and it could be healed with medicine.
However, after the diagnosis, the neurologist had informed me that I would need to take a weekly injection for the rest of my life to limit the number of relapses. Taking the medicine was not easy since I suffered from a lot of side effects. I used to take it every Friday evening and, between Friday and Saturday, I would develop flu-like symptoms which consisted mostly of shivers, aching bones and fatigue. This affected my ability to interact and go out with my husband/friends. I found it difficult to explain to them that I was consistently tired and did not feel like going out. However, at the same time, I felt left out and not enjoying life as I should be doing. My friends could not understand me and would end up telling me ‘Come on, shake it off, you will feel better’, which ended up hurting me even more. At least, my family and husband were supportive and understanding.
I continued the medication until I found out I was pregnant. During those nine months, I felt like I had a new body. There was no more aching and fatigue – I was always on the go. I loved it and wanted to remain like that forever. As soon as I delivered, I had to start the medication again. I ended up with severe anxiety and depression. I ended up going to the clinic weekly for the nurse to give me the medication. This became a weekly struggle since there would be a different nurse each time and I would have to painfully explain each time how to administer it, since they had not met anyone with MS.
Two months postpartum I started to have spasms in both legs and I ended up with my husband/family helping me to walk. It was extremely overwhelming as a few months before I was like a wonder woman and now I was just the opposite. I had to change medication once again and I even had to add more, to help me walk again.
Since the pandemic came, I ended up staying inside since I am considered vulnerable. Most days I ended up in bed sleeping or resting as I was too fatigued to do anything. This had a severe impact on my mental health since I could not go out as freely as I wished and I also could not take care of my baby properly, as I had the energy to provide him with the necessities, but could not play with him a lot since I was fatigued all the time.
My anxiety and depression were quite severe – I was a mother of 31 and at the same time I was always in bed sleeping – I was existing but not living. When I used to tell people that I was really tired, they always ended up saying ‘But you look fine to me’ or ‘Even I, I’m also tired’. No one tried to understand my pain or let me speak up.
It took one and a half years to find the right medication for me. Now I feel like I am living and not just existing. I still have my off days but then again, now I can walk for 15-30 minutes, play with my son and enjoy life.
Every MS patient is different and has different symptoms. I feel uncomfortable and misunderstood when people start judging me for using disabled parking or skipping lines. Even if I look fine, it does not mean I am. I could be fine one minute but, the next second, fatigue kicks in. The expression ‘Don’t judge a book by its covers’ should apply in any situation as no one knows what a person is going through unless they are actually in his/her shoes.
30th May – World Multiple Sclerosis Day