My MS story
My chronic condition helped me find the hero within me, overcoming challenges I never thought possible.
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 anymore. I had this intense weakness, tingling, and numbness in different parts of my body. My brain couldn’t think clearly. But above all, I had so much fear. What is going on? I used to be a dynamic and excited young hairdresser at the time starting my adult life. And suddenly, my whole world fell apart. 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 only one answer
WE DON'T KNOW.
WE DON'T KNOW.
WE DON'T KNOW.
WE DON'T KNOW.
WE DON'T KNOW.
WE DON'T KNOW.
In 2002 during my diagnosis, there where already several MS treatments available that could potentially keep in a stable level the progression of the disease. But when asking the doctors, What do I do now? The recommendation was very general, “You start with this treatment, 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, I have all those future dreams in my mind, and out of nowhere, I can hardly stand up to go to the bathroom.
When my MS journey started and being at my most severe phase not being able to walk, I had Mitoxantrone infusions along with cortisone pills. This was a very aggressive treatment with many unpleasant side effects such as nausea, feeling sick and loosing hair (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 of medication supported me in slowly getting back on my feet and becoming again more functional. I could walk now, but I couldn´t go up the stairs. During this time, my life felt as if I was in slow-motion while having an out-of-body experience. I was a powerless observer of my life completely numb from fear.
After 5 doses of Mitoxantrone and a clear MS diagnosis, my doctor advised me to pursue the best available treatment at the time which was interferon. When I heard that I must do injections I was in total panic and despair – as I was absolutely scared of shots – hoping that I would soon wake up from this nightmare. My neurologist assured me that this treatment will be only temporary as soon will be approved and released the long-awaited pill for MS.
While waiting for the magic pill I started doing interferon injections (Rebif) 3 times per week. Unfortunately right from the beggining, I had very strong side effects which made me feel weak and have flu symptoms almost every day.
I started the interferon injections in 2002 with the hope that it won’t be for too long. Should I share with you the actual date that the pills for MS were finally available in the market in Greece and ready for me to take them? 2011.
Yes, you counted well, no typo there. That is 9 years later!
So during those 9 years of interferons, I had for 4,5 years 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 change the medication from Rebif to Avonex as I couldn’t take the side effects anymore and have flu-like symptoms almost every day of the week. This change of medication allowed me to minimize the side effects to “only” 1-2 days per week. By gaining back a part of my freedom and mostly of positivity I managed to feel better and pursue new studies by getting a bachelor’s degree in the field of Library and Information Science. I choose the profession of the librarian with the perspective of having a more calm life style to match my new reality and limitations.
When my interferon journey was finally over and for the next 11 years, I was taking the pills Gilenya, which allowed me to really become independent, get my life – the new – back, and be ready to kick the ass of my dreams! I left Greece, worked in Europe and had some very good experiences and jobs in the field of libraries and archives. I have to share with you that because my physical image doesn´t let you guess that I have MS, I mostly kept a secret from the professional environments I was involved with that I had MS along with my daily struggles. Of course only much later I realized what was the impact and cost of that silence and secret on my body, mind and overall well being. In 2019 I started to be fully aware of who I was and my potential and I decided to fully change the course of my life by going back to school and studying to become a life coach. I finally gave myself permission to fully live and ignore any limitations and negative voices in my head and follow my dream of supporting others and having a bigger impact in other peoples lives.
Since the summer of 2022, I was ready to try a different medication and – why not – feel even better with even less symptoms and more freedom. With the recommendation of my physician I changed my Gilenya treatment to Ocrevus. Ocrevus 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!
Ms 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 many 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.
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, tackle and juggle. 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 and wish to accomplish but the days I don’t feel well enough to stick to my plans, well… then everything has to pause. And I accept that aspect of my reality by setting my well being as my first priority. Because if I am not well, how will I be able to support others? Whenever possible I give myself the time, self-care and self-love that I need until I am back and strong 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 life-partner next to me who often massages strongly my feet whenever needed while being on the couch together watching tv or exchanging about our day!
I also have migraines. In that case, I take Zolmitriptan which takes the pain away but makes me a bit drowsy.
Sometimes I can suddenly feel the urge to pee and must run to the bathroom. Not too often but still probable, some small accidents can happen along the way.
Some days I can walk – my way – for 5 km full of energy or work out like a mini-Hulk – also my way -, and feel unbeatable, and some other days I am exhausted already by thinking. 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 and memory issues, difficulties prioritising and finishing tasks, agitated mind with many thoughts day and night, mood swings, hight emotional sensitivity with intense ups and downs, and other cognitive and emotional challenges. These aspects were not fully new to me as I believe where there since my childhood without really noticing them. I think that they might have increased since my MS diagnosis but it´s not easy for me to be clear on that or if circumstances of my life made them more strong.
Whenever I would describe those symptoms to my neurologists, they considered them as part of regular MS symptoms without any particular available treatment that could support me. My life completely changed one random day that I found out that all those symptoms could be MS, but could also be… ADHD.
At the age of 42 and after 20 years of MS, I went through an ADHD assessment. I was diagnosed with severe ADHD and started trying out different ADHD treatments to find what works best for me. I started with Methylphenidat, Elvasee, Retalin, Strattera and currently taking Focalin which so far is the best for me. What the ADHD medication does for me is to decrease many of the symptoms I described earlier, and are helping me a lot with focus, brain fog, memory, positivity, inner-calmness and more.
Since I discovered about my ADHD, this has really helped me understand even more about who I was, my strengths, my weaknesses, my potential, my goals in life and how I can achieve them.
My self- awareness on my body and mind has reached a very high level and I strongly believe that there is nothing we – humans – cannot achieve. We only need to find out the way that fits who we are and our particular body and mind!
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.
An 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 common MS symptom). And also, consuming gluten makes me feel very anxious, almost like having panic attacks. If only you knew how many fresh beers I have enjoyed to take my mind off my MS while making my symptoms even worst without knowing about it. Wheneve 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. (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 a lot the level of my self-care in every aspect, which allows me today to be strongger 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!