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…

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self-experiment: CrossFit

I kid you not!

CrossFit and MS seem like a horrible match and some people still think I’ve completely lost it but let me tell you, the past 4 weeks were great. Lots of sweat and tears but I’m  convinced this is my way forward and I just signed up for a 3 months UNLIMITED WOD membership as I want to continue this experiment and dig really, really deep.

Yes, I have officially joined the CrossFit cult 🙂

CrossFit can be quite intimidating at first. I have friends doing CrossFit for years and yes, talking about it non-stop ( this is me now, lol) but I never gave it a real chance as I thought, hm, I have MS and CrossFitters seem like the complete opposite, they are like superhumans. Watching the CrossFit Games online or just recently the Netflix  “Fittest on Earth” documentary didn’t really help.

But then a friend shared this video of “adaptive” CrossFit athletes and I thought, hell yeah, I can do this, too!

 

Luckily I found a great box ( CrossFit term for the place you workout, in my case an old warehouse) here in Amsterdam that offers an 8 hour “on ramp course” where you’ll learn most of the movements from weightlifting to rope climbing. I think it’s essential and in my box even mandatory to follow such a course as CrossFit can cause many injuries if you don’t know what you’re doing. I’m glad I did quite a bit of weightlifting and kettlebell training the past 12 months as I’m familiar with the technique.

Then – the biggest surprise during our first lesson! We learned that the MOST important part of CrossFit is – REST. HA! Sounds like the perfect sport to me as I’m a world-class rester 🙂

After completing the course we got 3 weeks of unlimited testing which I did – to the max!

First of all – SURPRISE, there are mainly “normal” people training, all fitness levels,sizes and ages. The average Joe and Jane and we all share one goal – to get and be fit for life, both physically and mentally. It’s the mix between strength training, cardio and gymnastics that makes it very appealing to most people. At the same time it’s also a great mental strengths training as you’ll get pushed to your own limits and are constantly trying to overcome them. It really is for everyBODY as you can scale every single exercise during a workout in many different ways and make it work for you. For example, I can’t do pull ups ( yet 😉 ) so I do jumping pull ups instead and am also using less weights etc.

I was really concerned about the, ok, MY competitive side but notice each time I only compete against myself and don’t compare myself to others. To me  it’s more about overcoming my own limitations that I still set myself mentally. “I have MS, I can’t sprint, can’t do this, can’t do that”. But turns out  – I CAN. Up until now I actually didn’t notice any difference between me and other beginners. I feel more self-confident and surprise myself in almost every workout with what I can do as I’m still limiting myself mentally with the fact that I have MS.

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What?!?! You want me to lift this 42kg atlas stone to my shoulder?  I can’t try because I have MS!  Overcame my fear and tried!

CrossFit has several neurological benefits, especially olympic weightlifting. I can feel my CNS working really hard each time and trying to get these 4-5 movements together looks very easy but it’s one of the hardest things I’ve ever done. How I can tell? I had to take a three-hour siesta after the first olympic weightlifting session and my mind felt like a blank space, it kind of shut down to process this new information 😉 This is exactly what I want as I know my brain builds new connections. Neuroplasticity is so important, not only for people living with MS or other neurological disorders but for everyone. You can only rewire your brain if you give it new input, make new experiences or learn a new skill. With CrossFit, you get it all without traveling places.

I noticed quite a few changes the past 4 weeks and it’s not only that I feel hungry all the time, lol. Even on a bad day (doing physically well but kind of in a weird funky mood for weeks as I’m getting more aware of cognitive issues like my 1 second attention span and that’s just so frustrating. Sorry for the distraction from the main post but this is pretty much how my brain works for me, it’s all over the place at the same time and it’s just overwhelming at times, so I take time outs and hide)  I try to make it to a WOD at least every other day as I feel so much better afterwards, have more energy and less fatigue as I’m adjusting to these new movements and activities.

I finally started to push my limits little by little and lift heavier each week as, well,  it needs to hurt a little. No pain, no gain.  In the past I stuck to my workout plan and didn’t dare to leave the edge of my comfort zone but as we all know, the magic happens only outside our comfort zone. Thanks to the great community there’s a lot of magic happening as you always have people cheer for you if you’re about to give up and we all celebrate our own successes at the end of the workout with a round of high fives 🙂 It’s a very social sport as you get to meet many new people and that’s so important to me. It’s not like in the gym where most people wear earphones and focus on their own workout. You do quite a few of buddy or team exercises and even if it’s a workout without, your neighbors will support and cheer for you if they notice you struggle.

The only tiny issue is my core temperature – but I also found a solution for that 🙂

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I got myself even more ( 8 xxl)  cooling packs , now half of my freezer is occupied with other things than ice cubes and veggies 😉 . When I feel my temperature rise, I just put one cooling pack in my back/ neck area, held in place by my racerback sports bra, and add more to my shoulders and chest if needed. I also drink ice-cold water and it really works! Thanks to this trick I have hardly any  symptoms anymore when working out, just the vision in my left eye is a bit off but I must say it’s been like that for weeks, even without working out. I blame it on the late summer here in the Netherlands as we’ll also hit 26 degrees today which is a no-no for my workout. For the rest – even my right leg feels “normal” for the first time all summer!

So, that’s it for today, I might even start an entire “CrossFit with MS” sub-menu on my blog but we shall see. Here it is again, distraction and my brain is already somewhere else 😉

Thank you for this great experience  coaches and buddies, looking forward to the next 3 months with you!

 

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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Iyengar Yoga Workshop with Garth McLean

As you might know by now, I firmly believe that everything happens for a reason, the good and the bad. Lately, so many things seem to fall in place and make a bit more sense, it’s almost scary.

One of these things is… yoga. Yes.
I started Iyengar yoga at the end of September as a restorative exercise to compliment my personal trainer/ weight-training self-experiment ( that’s why I’ve been so quiet, made even more drastic changes to my life and focused 100% on it ). I’ve heard of Iyengar yoga before as it’s highly recommended for MS patients. If required, it uses quite a lot of props so every patient can benefit, no matter how mobile or flexibel you are. But I wanted to know more about it, wanted to know why it’s so beneficial, googled and came across Garth McLean, a very inspiring, LA based Iyengar yoga instructor living with MS – just like me, he only really started to practise yoga after his MS diagnosis in 1996. I visited his website and checked the workshop section just to find out he’ll be in Europe for a series of workshops this fall and guess what – one weekend workshop listed was not so far away, in the pretty city of Utrecht ( 20 min train ride). What a coincidence, crazy!  Of course, I signed up right away ( although, I wouldn’t mind a trip to LA for a yoga workshop 😉 ) and today is THE day, the first out of three 2h workshops with Garth is tonight, yay! I’m so curious what I’ll learn! Plus I’ve never been to a real Iyengar yoga studio with all its ropes, chairs, etc. as I practise in my gym with the usual props. So excited to meet Garth, Hiske and the lovely team at iYoga and all the other participants as I heard there are a few, if not all, also living with MS.

Time to clean my yoga mat and prepare for the weekend as this is quite a routine breaker which means I need to be super organised or I’ll forget essential stuff like food 🙂

Will let you know how it went, check out Garths’ inspiring story and how he beats MS with yoga only

I especially love what he was told by Iyengar himself, so true!

“Everyday you must walk that line between COURAGE and CAUTION.”

“Work slowly and exercise patience.”

BKS Iyengar

rowing #fail

rowing

 

My self-experiment #3, rowing, failed BIG time.

It was really fun the first 3-4 sessions but then it got all too much and my body failed me once we really started to row longer distances without any breaks. Unfortunately it’s a synched team sport, so I couldn’t just take a break and pushed myself way too hard the last 2 trainings to keep up with the team. I never felt pain like this ever before, from my toes to my head! It felt as if my body, especially my legs, were on fire and I could barely make it out of the boat after we finished 8k. Not to mention the HUGE blister I got on on my hand, I didn’t sign up for this! I felt physically sick after the last rowing training and it took me 3 days of rest (!) to recover from it. Just thinking of it makes me feel sick again, what a nightmare. Grrrr.

 I guess I got a little bit too optimistic as running works out so well and rowing, well, is just the complete opposite, a disaster. Self destruction in my case as you don’t want to know how I feel and live during the recovery days, I switch into survival mode.

I decided it’s not worth it as it’s just too hard and will skip the last training session of the course. BAM. I just love myself more and need to accept that rowing is something I simply can’t do. It sure is a hit as I feel sick and different for the first time in months due to the fact that none of the other rowers there seem to have these issues, even the elderly.  

I also question all these studies that say exercise will help with the fatigue, ha! So far, I’m just more tired and exhausted. I might run 5-6k but need to sleep an extra hour in the afternoon ( on top of my 2 hour siesta ) and on a bad day, sleep right after the run. I must belong to the “other” group in the study, but not giving up hope yet.

No more team sports for me at this point, I need to be able to listen to my body and really don’t want to be in the position again to push myself too hard to keep up with others. Except beer pong 🙂