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

Interview for Rehacare

So excited, my first interview is live since yesterday evening and I still didn’t dare to read it 🙂 Rehacare is a leading international tradeshow for rehabilitation, care, special needs and inclusion.

Thank you again for giving me the opportunity to raise awareness for invisible (dis)abilities and illnesses!

 

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You can read my interview in  English or German.  Enjoy the peek into my lovely crazy life. 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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Social Media Detox

I finally did it!

After weeks of hesitation, I just deleted Facebook and its Messenger from my iPhone.

My day is simply not long enough and I realised that mobile social media is a waste of my time. It’s my own fault, I usually start my day on Facebook and it’s the last thing I check before I fall asleep – plus the countless times in between. What do I get out of it? 99% of the time nothing, it doesn’t add any value to my life. It’s just stupid behavior, especially in my case as my productive time is very limited due to fatigue and I waste half of that on my iPhone. That’s the reason why I can’t blog or update my blog’s Facebook page more regularly, because I waste that precious time.

I miss out on so much as I’m very often not in the present moment. I can’t even watch TV without checking my phone every now and then. Crazy!  It gets even more tricky if you’re stuck at home all day as Facebook is my only connection to my “old life” and friends around the world, that’s the reason why I won’t delete my personal account.

I also decided to call more often as WhatsApp is another time killer. Why would we waste minutes typing instead of a quick call? Especially as calling is free these days? I must admit I hardly ever use my phone for calls, I only speak to my parents and 2 of my best friends on a regular basis, that’s it. Crazy! So no more WhatsApp novels from now on.

I’m sooo done with it, I want to live in the present and be “here” again.

It’ll be hard the first days/ weeks, but definitely worth it. Luckily I’m going to spend the summer in Germany (visiting my mum) and won’t have 4G on my phone without paying roaming fees, that should make things a bit more easy.

My social media detox action plan

  1. Delete Facebook and its Messenger on my iPhone and change notification settings for WhatsApp, Twitter etc – (almost) done, the only sound I want to hear is a call
  2. Allocate time for personal social media ( only using the iPad / laptop) This will be a very tricky one – let’s see if I can stick to one dedicated time slot a week, a Facebook power hour
  3. No WhatsApp/ text novels – call instead
  4. Leave my phone in another room more often, it’s not part of my body and doesn’t need to sleep next to me 😉
  5. Spend more time on my blog ( incl. its Facebook page and Twitter account )

Only five action points, should be doable but I know it’s going to be harder than it looks. To be honest, I wanted to start my social media detox last Saturday, that’s when I started with this post…oh boy, this is not going to be easy at all.

I need this additional time and I hate how stressed out social media makes me feel at times, really curious to find out if I can feel more relaxed without it.

Enough for today, time to “be present”.

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 🙂