My MS Story
My chronic condition helped me find the hero within me, overcoming challenges I never thought possible.
My diagnosis
I was diagnosed with Multiple Sclerosis at the age of 22. It all started after spending an intense weekend snowboarding on beautiful Greek mountains – and yes, Greece also has awesome mountains! When I went back home, I slowly started, day after day, losing the sense of my legs and of my right arm until I couldn’t get out of bed anymore. The entire left side of my body was feeling different from the right one, as if it wasn’t my body. I had this intense weakness, tingling, burning sensation and numbness all over my body. My brain couldn’t think clearly. But above all, I had so much fear. What was going on with me? When will this thing go away? I used to be a dynamic and excited young hairdresser at the time. And suddenly, my world fell apart. I had to change everything I was. Actually, I didn’t even know who I was anymore or how to handle this unknown blurry, and scary situation I was in.
I kept asking questions and receiving unclear answers:
Why do I have MS? We don’t know.
How will it evolve? We don’t know.
Is there a cure? Not yet.
Will there ever be one? We don’t know.
The physicians’ did their best to provide me with the latest information and medication. But when asking them, What do I do now? The recommendation was, “Continue your life as usual, and you will figure out on your own what you can and cannot do.” REALLY? How on earth will I do that when I am 22 years old, and out of nowhere, I cannot stand up to go to the bathroom?
My medications
I initially had some Mitoxantrone infusions along with cortisone, which was a very aggressive treatment with a lot of side effects (Mitoxantrone is a drug that is also used for Cancer, and you can only receive up to a certain amount within someone’s life spam). This strong mixture supported me in slowly getting back on my feet and becoming again more functional. During this time, my life felt as if I was in slow-motion and I was an observer feeling completely powerless.
My doctor wanted me to pursue my treatment with the best available medicine at the time which was interferons. When I heard that I must do injections I was in total panic and despair, hoping that I would soon wake up from this nightmare. My neurologist assured me that this treatment will be temporary and that soon will be approved and released the long-awaited ” MS pill”.
A month later I started doing interferon injections (Rebif) 3 times per week. Unfortunately, I had strong side effects which made me feel sick and have flu symptoms almost every day.
Spoiler alert: I started the interferon injections in 2002 with the hope that it won’t be for too long. Should I share with you the date the “MS pill” was finally available in Greece and ready for me to take it? 2011.
Yes, you counted well. That is 9 years later!
In the mean time, I did 4,5 years of Rebif injections 3 times per week, and then I switched to Avonex with 1 injection per week for another 4,5 years. I had to switch to Avonex because I couldn’t take it anymore to feel as if I had the flu every day. So this change of medicine allowed me to minimize the side effects to “only” 1-2 days per week. (I finally had some freedom and positivity again and managed to pursue new studies and get a bachelor’s degree in Library and Information Science)
After that and for 11 years, I was taking Gilenya pills, which allowed me to really feel independent and ready to kick the ass of my dreams!
Since the summer of 2022, I was ready to try something different and I changed my treatment to Ocrevus which is one 5-hour infusion every 6 months, allowing me to forget all about MS treatment for half a year. My body has so far responded very well to it.
My current main symptoms
I know that you are here to receive my support, but I owe it to you to be completely transparent. I am handling and experiencing my MS in a much better way than at first and have overcome TONES of symptoms and issues but that doesn’t mean that I am cured or that I don’t have daily challenges to tackle. I am an MS patient just like you.
Physical symptoms
My biggest challenge is fatigue and the lack of predictability and consistency of my physical, mental, and emotional energy. This part really sucks. And it’s something that I always have to face. And that is why – as much as I possibly can – I make flexible schedules. I put my heart and soul into committing to what I have planned. But the day I don’t feel well enough to stick to my plans, well… then everything has to wait. Even you and everybody else. And I am ok with that because I know that this must be my first priority because I need to get well. I give myself the time and self-love that I need until I am back and strong to support you again!
I have pain in my feet and often need some strong squeezing and massaging, which gives me instant relief. I am extremely lucky to have an incredible person in my life who massages my feet whenever I am in pain while we lie on the sofa together while exchanging about our day!
I also have migraines. In that case, I take Zolmitriptan which is good but makes me a bit sleepy.
I could suddenly feel the urge to pee and run to the bathroom. And then there is almost nothing happening. (Oh, come on!!!)
Some days I can walk for 5 km full of energy, work out like a mini-Hulk, and feel unbeatable, and some other days even the thought of walking exhausts me. But that’s ok because I know that if I give myself the time and self-love, I will regain my strength soon!
Mental and emotional symptoms
I also experience a set of symptoms such as brain fog, concentration issues, agitated mind, mood swings with intense ups and downs, and other cognitive and emotional challenges. These aspects were not fully new to me as I had them already since my childhood without really noticing them, and they increased even more since my MS diagnosis. Actually, before my MS, all these “symptoms” were not symptoms at all, they were just my personality and my weaknesses! Or that was what I thought…
Whenever I would describe those symptoms to my neurologists, they considered them as part of regular MS symptoms, nothing to worry about, nothing to do about. Until the day that I realized that these symptoms could be MS, but they could also be… ADHD!! (Whaaaaat?)
I went through an ADHD assessment as an adult over 40. I got diagnosed with ADHD and started taking an ADHD treatment. And many of these symptoms decreased a lot, and out of nowhere, I got a big part of my brain “back”. And this opened up endless doors of possibilities giving me even more strength.
If you want to know more about my ADHD story, do not hesitate to read it.
Do you have any of these symptoms as well?
mindset and attitude towards life
Despite all the challenges that I had and still have, I maintain a positive attitude toward life, and I am 100 % solution-oriented. But this behavior didn’t happen overnight. For years I was dealing with so many issues without receiving proper guidance due to the lack of information. What supported me the most was my mindset toward not allowing this disease to take over my life and who I am. I had and have such a strong desire to explore all the ways I can take care of myself, minimizing my negative symptoms. I don’t only focus on what is commonly known as “healthy” but mostly on what works best for MY body and mind.
Quick example: I noticed that whenever I eat or drink something that has gluten, my feet have a strong burning sensation for two days (Burning sensation is a super classic MS symptom). And also, gluten makes me very anxious, almost like having a panic attack. If only you knew how many fresh beers I have enjoyed to take my mind off my MS while making my symptoms much worst without knowing about it. When I minimize my gluten consumption, my feet don’t burn, and I feel much calmer. It took me the first 17 years of living with MS to figure that out. Interesting? (Hurray, to gluten-free beer!)
With that in mind and realizing that there are still so many unknown things in the MS world, I knew I had to rely on myself and my explorations of what is good for me and what is less good. Therefore, I increased tremendously the level of my self-care in every aspect, which allows me today to be strong physically but also mentally and emotionally.
Currently, I am supporting others, like you and me, to find solutions on how to live better. I inspire people to become the person they want to be, with or without MS. Life doesn’t stop here. It’s just a challenge that we have to face, make some adjustments, continue the path of our life, chase our dreams and then be proud of all our achievements!
And no matter what, NEVER EVER GIVE UP!!!
Do you remember my snowboarding story in 2002, which was the trigger for my severe physical symptoms which put me down?
Putting aside my physical pain, drinking a strong dose of self-belief, and taking a tiny step at a time, I started working out, increasing the muscles of my body. And since 2019, I have been snowboarding again!
I cannot wait to support you achieve your dreams…
What I can do for you
If you need support to redesign your reality and achieve your dreams, I would be more than honored to be by your side and take you wherever you want to go. Living with MS can be challenging, but it can also be extremely rewarding when you nurture and focus on ALL the things you CAN do and develop your super powers!
