Happy & healthy 2018!

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Happy and Healthy(tier) New Year to you!

A little late as my MacBook decided to give me the “blue” screen and stopped working a few days ago so here’s a short 2017 review via my phone.

I celebrated New Year’s Eve in one of my favourite cities, Istanbul, trip #4 in December after a short visit to Athens and Vilnius to tell my MS story followed by a trip “home” to my mum in Germany. Busy times!

Now I finally got some quiet time to reflect on 2017, one of the most intense & best years of my life so far and I already have a plan in place to make 2018 even more spectacular and healing 😉

I’m thankful for the experience I gained as team member of Mission Summit and our attempt to climb Mont Blanc as the first MS team. If you follow me on Social Media you already know that we had to return after a night at the Tete Rousse hut ( 3167m) because of severe weather. As I trained months for this event I was somewhat disappointed but also know all the hard training paid off. I’m definitely getting fitter the older I get 😉 I also had a small emotional breakdown climbing up to that last hut as I remembered where I’ve been on this very day 5 years ago – in neurological rehab, sleeping 18 hours a day and most likely doing water gymnastics with a right arm that didn’t cooperate – well, I could not even hold my cutlery and there I was, climbing the highest mountain in the Alps. CRAZY! I learned so much about my body during that time, especially that I can really push way harder than I thought.

Mission Summit is planning another expedition in November 2018 – this time to climb one of the “7 Summit”, Mount Kilimanjaro – and of course I’m thinking about joining, it’s great to have a goal to train for  😉

The intense summer didn’t end there – shortly after I returned from the expedition it turned out that I have a bit of skin cancer  ( the “old people” kind, a basal cell carcinoma) on my collar bone. Bummer, but life goes on and it was luckily nothing dramatic.

My surgery was scheduled right after my yearly MRI that turned out to be fabulous – stable, no new lesions and last years “surprise lesion” was hardly to see so I think I’m on the right track with my DMD  and my mix of meditation, breath work, sound journeys, exercise, diet, supplements and so on paid off.

The mini surgery was quick and easy, the only real downside was that I couldn’t  do CrossFit or heavy weight lifting for a while. Stubborn as I am, I tried  ( of course 😉) and ripped each time a few stitches so in the end it took about 6 weeks until the scar healed a bit.

For the first 3 months of 2018 I got already a full plan in place as I need to train and prepare for my next “project” that will be both, a healing and adventure trip to Peru 🙌

Quick preview below and more to come in the next weeks but I can tell you already it’s going to be epic one way or another ( and for some a bit too extreme 😂 ).

I’m always busy making memories and this trip combines a few things I really, really wanted to try and do for many years.

As they say, all we have is NOW…

x

Resurrection 2.0

4 y anniversary

Happy 4th MS diagnosis anniversary to me! 25.6.2016

Resurrection is the reuniting of the spirit with the body in an immortal state, no longer subject to disease or death.

Resurrection is a big word but I can honestly say that’s how my 4th year felt like.

I finally resurrected.

I reunited my spirit with my body and completely started living again. I don’t worry anymore or fear what will be or not – I simply enjoy life and MS does no longer control me. It finally clicked in my head, I accepted it and no longer see it as the enemy.

It took me 3 years in survival mode to get here – it also took me 3 years to feel alive again after my brother died in a car accident, that’s why this is already my second resurrection. I’m basically a resurrection expert without the immortal part but who knows 😉

The thing is – we all have resurrected at one point, even you! Be it after the end of a relationship or being without a job for a while, this too can make you feel dead and in limbo for a while. What’s important is to get up at one point and fight. Grow some balls and take your life back. Don’t be a victim of the past as this will prevent you from living in the now and future. Remember that feeling when you could tell this limbo was over? That’s what I hang on to and try to reproduce every day.

I thought about this for a long time, what is needed to resurrect from any kind of tragic event? In my opinion the answer is LOVE.

Love. Love. Love.

First of all to love yourself. Love yourself enough to get out of this situation, be kind to yourself. I finally quit smoking last year as this was the one self-destructive behavior I still held on to. If you have MS and smoke it’s even worse and there are plenty of studies about the connection between smoking and the onset of MS, very scary. Now I wonder why I never tried to quit earlier, I actually never even tried to quit before and started smoking when I was 16 years old. Not proud of it but we’re all not perfect and I forgive myself for it.

The week I quit smoking I also started working out weekly with the best personal trainer in the world (Thanks Markus 🙂 ) who opened my eyes and made me love working out again. I must admit I was too scared to really work out the first 3 years, I stopped as soon as I started sweating which is honestly after 1-2 min as my body can’t regulate its temperature very well. Getting warm, well, really hot, during my workout feels super uncomfortable and made me freak out a little in the beginning, most of the times my vision in the left eye and hearing in the left ear gets worse, I can barely feel my body and walking home requires 100% focus. But I learned how to deal with it and know it’ll be over after I take a cold shower and take some rest. I do mainly heavy weight training 3-4 times a week and love it!

I actually love it so much that I’m thinking of becoming a personal trainer myself 🙂 I get so much energy from working out that my fatigue and therefore quality of life improved tremendously. On some days I actually feel or am the healthiest and fittest person in the gym and other members are in shock and disbelieve when I tell them I have MS as they watch me working out.

I still follow the Overcoming Multiple Sclerosis lifestyle with the exception that I, as recommended by my nutritionist and trainer, eat a little more fat, eggs and protein and that’s fine with me, I didn’t notice anything different.

I have been stable for more than 2 years now and my EDSS score went from 3 to 1.5! That speaks for itself and my goal is to get into the 0. score.

The best thing that happened in year 4 – I started to travel again! Oh how I missed it!

In March 2016 I took a cruise with my best friend and godson, went to Dubai, Abu Dhabi, Bahrain and Oman. The temperature was perfect in spring and I had basically none of the heat related symptoms AT ALL. I felt like I had my old body back. In April I visited the beautiful city of Maastricht for a foodie and active weekend with lots of cycling as this area is every cyclists ( and foodies) dream. I just returned last week from a trip to the Cote d’Azur with my dad – but I must admit I had symptoms 24/7 as the climate there doesn’t seem to be good for me, all things I needed to learn, experience and remember.

It’s all about learning how to live with this new body and that’s what I did the first 3 years. A thousand little things, like one of these annoying xxl puzzles but I finally feel and know what to expect when I do certain things and how to handle it. However – I still have days where I overdo it a little but that’s ok 🙂

I’m one step ahead of MS and most days we’re friends. Love. The days my MS acts like a psychopathic sniper and hits me got less and I learned so much the past year that I feel like a female version of James Bond, always one step ahead of the villain and shooting first by taking a nap or rest day.

I finally love myself again and love conquers all, even that bump in the road ❤

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running results

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I (we) did it!

We started and finished the 5k Rokjesdag Run ( “Skirt Day Run”, that’s why most runners wore one) together as a team and thanks to my friends Steffi and Iris I even managed to run through the entire distance without a sneaky walking break for the very first time since MS joined my life.

It was a great event with more than 900 female participants. There was a 1k kids run, the 5k and 10k run and last but not least, a 5k walk that also included wheelchair users. Unfortunately we missed the finish of the walking teams as we started shortly before these teams returned.

The first kilometer was the longest and there was even a small hill we had to run up ( go figure, a hill in the Netherlands!). When we passed the 1km sign I thought I’ll never finish the run but all of a sudden, thanks to chatting away time with my girls, the 4km sign showed up and I felt like running on forever. I noticed again that the first 3-4km are the hardest, after that my legs go into ghost mode (can’t really feel them and they just keep on running automatically, should have signed up for the 10k 😉 )

We crossed the finish line as a team, holding hands and I must say I felt a bit emotional as 2 years ago I could have never imagined that one day I’ll run again. 2 years ago, simple things like taking a shower resulted in a nap and here I was, passing the finish line of a 5k RUN, crazy!  It took us 33:38 min to finish the 5k which is better than I expected!

I was able to collect 360 Euro for MS Research thanks to your donations, the total amount raised for this event was 21.215 Euro which will go to the VUmc MS Center. Fantastic!

What’s next?

Well, the day after the run I signed up for my next 5k on April 26, the Pop-Up Run, together with my friend Steffi. I need to have another goal or I’ll quit running, lol. At first I wanted to sign up for the Nike “We own the Night” 10k in May but, as it’s only a few weeks away, I know it would be too much on my body to train for that distance in such a short time. It took already quite a toll to train for the 5k and honestly, especially my social life was pretty much on hold the past weeks as I felt even more exhausted, so I’m not willing to do that again. I will focus on 5k runs for now and try to improve my time.

I’m also super happy that many of you, with or without MS, felt inspired to start running again!

Keep up the good work! x

Start of the 5k and 10k run, you can see us in skirt/ fluffy tutu on the right at 1:00 😉

Self-experiment #3/ 2015: Row row row your boat

A new month, a new self-experiment.

As I really want to stick to my 2015 sporty plan, I decided to give rowing a try. I see people rowing everyday, Amsterdam is the perfect city for it due to its many canals and especially the river Amstel.

Thanks to self-experiment #2 I passed a local rowing center on one of my runs and noticed they have an open day coming up and I signed up for it right away. I can tell you, it was fun! We had a quick intro in their training pool about how to board the boat ( NOT easy as there are only a few tiny spots you’re allowed to step on) and the different positions of the oar.

After 10 minutes the 4 of us got the real experience on the river Amstel, it was quite chaotic in the beginning but we managed to row a few meters straight and felt like Olympic winners 😉 I guess everyone on board liked it a lot as we all signed up for their 8 weeks beginners course. It’s a rather large rowing center and I was surprised to find out that they had 900 (!) participants in their last beginners course, unbelievable! But it also shows how popular rowing is, it’s a sport for all ages and has both aerobic and anaerobic benefits. You basically train your condition and get a full workout at the same time as rowing uses lots of different muscles.

I really felt it in my right thigh, almost got a cramp but I wonder if it was from the rowing itself or from my attempt not to slip off of that sliding seat. Running tights and that slippery sliding seat don’t go together, will try other pants today during my first class 😉

It didn’t feel very exhausting but it must have been as the 10-15 min of rowing knocked me out for the rest of the day in a really, really bad way. That’s my only concern, that it might be too much and I don’t seem to feel it while doing it. It’s a new kind of exercise to me and I need to find out how many “energy points” I need by trial and error. Then there’s peer pressure as it’s a 4 person boat and I’m still so damn competitive and wouldn’t give up or tell the instructor that it’s too much for me. I also don’t get muscle aches anymore which is so weird. When I started running again I expected to get muscle aches the first days or at least feel a bit uncomfortable – but nothing at all, no matter what I do.

That worries me a bit but I guess that’s just another MS advantage in sports 😉

Need to get ready now – watch this post, I will update it later on how my first class went. Fingers crossed!

 

UPDATE:

It went well! Didn’t go overboard and we even rowed more than 4km during the first class. Loved it and am sharing the boat with 3 other nice ladies and an instructor that looks just like SATC Samantha’s Smith 😉 What else could you ask for!

Still no muscle aches though, not the slightest bit which worries me at times…but well, I don’t want to complain about that. Looking forward to next Monday!

Self-experiment #2/ 2015: running (for real!)

 

BREAKING NEWS – turns out I can run again!

Until now I was either too poorly or too scared to run as I’m not a big fan of falling, failing or more drama. For some reason I decided to give it a go this morning and what can I say – WOHAAA! It was 100% better than I could have imagined and it felt so good. Well, I better be careful with the word “feeling” as I can’t feel how fast I run or anything else, I only know my legs are moving but it feels as if they’re not mine. Crazy feeling but on the positive side I also never felt any pain while exercising. I ran all the way to our dog park, added a HIIT workout there and back. Of course it was a bit too much but I can’t stop myself once I’m in my hyper mood 🙂

Honestly, I thought this would never ever happen again in this life, that’s why I’m feeling very blessed as I know not all of my fellow MS Warriors can do that anymore or at least at the moment. That thought gives me the extra push as I’m definitely not taking it for granted. It took  2 years of physiotherapy, gym, the pool, all kind of exercises, lifestyle and diet change to get to this point, step by step, in tiny baby steps.

But now I’m here.

That doesn’t mean I’m doing that much better, I just learned how to deal with the daily craziness of MS and it doesn’t bother me a lot, I finally feel like I’m the boss now. My efficient day still ends around lunch, so combining my daily walk with my dog and exercise seemed like a smart idea.

My next goal – running the 5k for my hospital’s MS Center in April, only 6 weeks to go but it should be doable if nothing major happens in between and if I allow myself some extra rest. Fingers crossed 🙂