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 ūüėČ

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 ūüėČ 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 ¬†ūüėČ

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 ūüėČ) 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 ūüôĆ

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 ūüėā ).

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

Mission Summit – climbing Mont Blanc

What better week is there than MS Awareness Week to share my next adventure?

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On my birthday, July 17, I will depart to Chamonix/ France, together with Mission Summit, a group of fellow kick-ass MS patients, some of their lovely partners, supportive friends and maybe even two small dogs with their own social media fan base, to start my biggest adventure yet Рwe will climb the Mont Blanc as first MS team ever to raise funds for MS research.

If you’re wondering why¬†I never talked about alpine hiking and climbing, this will be my very¬†first time ūüôā Instead of starting my alpine adventures on a¬†random mountain in the Alps, I decided to start right away with the highest one, it rises 4,808¬†m (15,774¬†ft). BOOM.

Why oh why would I do that?

Our goal is to raise¬†funds for a new MS study,¬†Project Y, at¬†VUmc¬†which is not only my MS Center but also one of the top 5 MS research¬†groups¬†in the world. Project Y (“why”) wants to find out why¬†MS progresses faster in some patients than in others and in order to find potential new therapies the underlying process must be found. ¬†All patients in the study group were born in 1966 and developed MS at some point but, typical for MS,¬†the progression varies widely. Understanding how the progression works would make a huge difference for future treatments and hence quality of life.

To be honest, climbing a mountain was always on my bucket list and I LOVE to watch climbing movies and documentaries. It all happened by total accident and synchronicity, that’s why I’m convinced it is meant to be and it goes perfectly together with my other self-experiment, the¬†Wim Hof Methodūüôā

Meant to be

9 days ago I got an email that offered¬†me the¬†last free spot on March 4¬†for¬†the Wim Hof workshop I signed up for a in January but couldn’t go as I was very sick that week. The day after I left for a long weekend trip to Norway where I visited one of my best friends and finally found the time to finish the book¬†“What doesn’t kill us: How freezing water, extreme altitude and environmental conditioning will renew our evolutionary strength”¬†by Scott Carney. I was mind blown! Everything described in the book made so much sense and it’s a great read with easy to understand facts why cold and environmental conditioning is so good for us, especially for autoimmune disease. Basically, in a nut shell, we live ¬†too comfortable, we always have access to¬†food, warm clothes, no need to walk long distances and, as a result, ¬†our bodies get pretty much bored and start attacking the immune system.

I returned last Monday evening, browsed Facebook and noticed the event from Niels and Mission Summit, an information eve about an upcoming Mont Blanc expedition. I signed up for it and 24h later I got a lift to the meeting from one of my very own inspirational MS heroes, Niels van Buren, who climbed¬†Mount Everest¬†in 2016 as the first man with MS. For the first time I met a group of MS patients¬†JUST LIKE ME face-to-face, we all had an instant click and decided then and there we’d go for it, we will summit Mont Blanc to raise funds for MS research as our¬†main goal is a world free of MS. Mission Summit’s motto is “Moving mountains for MS” and we’ll try to do that.

I attended my Wim Hof workshop yesterday and finished it with a long ice bath that proved to me again that EVERYTHING is possible.

Please watch this space and also my¬†Facebook page¬†as I’ll need your support to reach my goal the next months, it’ll be a lot of very hard training including climbing training, very long hikes with a heavy backpack and last but not least fundraising as I need to raise at least 1000 Euro for the study ¬†– I will share more detailed information in the next days and weeks.

Let me end this post with a quote by one of my favourite adventurers ( another highlight of my Norway trip, I went to the Kon-Tiki museum and saw the original balsa wood raft used for his expedition in 1947!)

 

 

‘Borders¬†I have never seen one.

But I have heard they exist in the minds of some people.’

Thor Heyerdahl

Off to new beginnings

A lot has changed since my last post about the suboptimal MRI result and I figured it’s time to update you on here as well in case you don’t follow me on social media¬†ūüôā

It took a few weeks to fully recover “mentally” from the new lesion news but I eventually accepted it as there’s anyway nothing I can change or do so stressing about it doesn’t really help.

I went to Mexico in¬†November¬†¬†for a week of solo adventure holiday in Tulum followed by Dr. Dispenza’s advanced workshop that honestly changed my entire outlook on living with multiple sclerosis. We meditated at least 4 hours a day – even one time 4 hours at once (hard work for this one as I can barely sit still for 10 mins) ¬†– and during one of the early morning walking meditations on the beach I finally had my breakthrough and cried my eyes out when I saw the beautiful, warming sunrise. Hard to describe but it was magical and I decided to leave MS back there on the beach and let go. Dr. Joe reminded us over and over of the principle that “energy flows where attention goes” and I noticed I blog a lot¬†about my symptoms etc as I wanted healthy people to understand how it is and feels but hey – that also means I focus on these things and I’m done giving energy to my disease. I only want to focus on the healing part and put¬†all of my energy into it.

My new mantra is “I am healed” ‚̧

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It was definitely helpful writing about it for my first 4 years and it for sure ¬†helped me to accept and overcome but honestly, already the past months I didn’t know what to write about as there was nothing new except that I feel a little bit better, healthier and stronger each and every day. Of course, I do have days where I overdo it or the workout was to heavy but then I accept it and allow myself a good long siesta and rest. I learned to listen to my body, it’s that simple. ¬†I increased my CrossFit workouts to 3-4 a week and hardly suffer from fatigue anymore. It wasn’t easy to start with these kind of intense workouts but it’s so worth it, the benefit of what I get is greater than the pain or discomfort – and also that gets less and less as I push¬†my own boundaries each time.

Now in year 4 in notice MS doesn’t rule my daily life anymore and very often I don’t even think about it and am only dealing with the normal, average things in the life of an ordinary ¬†21 year ¬†old ( well ok, 37) woman again which feels great.

Pushing boundaries – that’s what I’ll do the next months BIG¬†time and with a crazy goal but I’ll tell you in another post very very very soon, I promise ūüôā

Off to new beginnings, stay tuned!

x, Anja

 

 

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 ūüôā

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 ūüôā

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 ūüėČ ) 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 ūüėČ 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 ūüôā 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 ūüôā

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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 ūüėČ . 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 ūüėČ

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

 

self-experiment #fail: Space Muffin

Don’t try this at home kids ūüėõ

Millions of tourist visit this beautiful town every year with only one goal – the famous coffeeshops of Amsterdam. Seems like I’m one of the few people with¬†almost¬†zero experience when it comes to cannabis¬†and a few weeks ago I decided to give it a go.

Sometimes I feel bad about it as I know for many of you marijuana is illegal while I just need to walk down my¬†road for about 30 seconds to reach the next coffeeshop. Luckily more and more countries prescribe cannabis or medical marijuana and with MS you are one of the lucky qualifiers ( hey, there need to be some perks after all). In case you wonder and are not familiar with it, marijuana is really good for us living with MS, especially it’s compounds THC and CBD look very promising in studies. Don’t worry, I didn’t and won’t turn into a pothead and you actually see very few in the coffeeshops, the customers are of all ages, professions and backgrounds once you leave the center and its very famous coffeeshops where you’ll find most tourists.

A few weeks ago I decided to give it a try and got myself a pre-rolled joint at the coffeeshop down the street Рmany years ago I tried to roll one and it looked like a ball, not even close to joint. The moment we lit it, it burned down within seconds. So the pre-rolled option comes in very handy for not origami gifted people like me. I smoked it with a friend at my place and it was a fun eve involving lots of giggles and a 4 hour long painting session, I slept like a baby for the first time in ages.

After discussing with two¬†very¬†experienced friends ( you know who you are ūüėČ ) I decided to try and eat it rather than smoke as it must be healthier and more efficient for the healing compounds. You can dissolve cannabis in coconut oil, butter, cook with it, bake with it – you name it. ¬†Said and done, I walked back to my local coffeeshop and got myself a little “special”muffin. I had a bite that same night and felt great, super relaxed, giggles, slept again like a baby. Had another bite the next eve and the same results.

Yay, maybe this is working for me.

BUT THEN, one day…

I got this big and beautiful muffin for my 4 year MS diagnosis anniversary.

space muffin

So pretty, isn’t it? The day I got it I visited my experienced friends and they introduced me to vaping, had some organic cannabis and these cuties even prepared¬†a yummy dinner that contained a bit of marijuana. Thank you again for the great day you two ūüôā

I didn’t feel high at any point, just relaxed and that is a feeling I honestly forgot. I’m always on the edge, even when I think I’m relaxed. So experiencing that feeling again was shocking and wonderful at the same time.

The next day I wanted to repeat my experience and decided to have a tiny bit of that pretty muffin. Just look at that size! I ate the dolphin first (of course) and maybe 1/10 of the muffin. I even went for a quick walk with my dog and did groceries afterwards. It all started on the way back, something wasn’t quite right, lol.

10 mins later, all hell broke loose, totally unexpected! ¬†I have just sat down, finished¬†dinner and watched THE (if you’re a fan you know which one) ¬†very sad and dramatic episode of Orange Is the New Black ( I think this is the reason why it turned out the way it did) when my heart started racing and I felt kind of panic coming up. FEAR. I tried to ignore it at first but it got worse by the minute.

What do you do in these situations?

Well, I skyped my mum in Germany ( who is super cool btw and supports me with all my crazy ideas and self-experiments) . Unfortunately she has no experience herself and her google results were not very positive. I also started chatting with my dear friend who got me the muffin as I was sure she could help.

Her first advice – don’t eat anything. That was unfortunately already too late as I just had dinner. AFTER I had the muffin. Bummer.

Drink water and sit on your balcony was the second advise. Tried that, but things got still worse. I even thought about what would happen if I lose consciousness or if that was a heart attack of some kind, I’m all alone with my dog, nobody would find me for days – at least until Wednesday as this is the day my cleaning lady comes around. But it was only Monday night, help! ¬†I even thought about calling an ambulance at one point or just sit outside my door for a while.

Then I freaked out a little more and even considered that I might need to get a boyfriend so I have someone around I could call 24/7 and who would prevent future stupid things I’ll do ( and before I get a ton of messages, I know I can call many of you 24/7 but you know me, I wouldn’t ūüėČ )¬†. HA! ūüėõ It was that bad! But I felt so lonely and totally helpless, I can’t even describe it. After an hour the panic and fear only came in waves, my mum had to leave me on Skype and I decided to join Ruby in her dog bed.

 

It took another 3 hours ¬†until I felt more stable – but it took another 3-4 days until I felt like my old self again. I don’t even want to know what would have happened if I ate the ENTIRE muffin – it tasted yummy though, I never have chocolate muffins anymore so it would have been tempting. The next day I told several friends about this horrible experience and, it seems like I’m the last person living in Amsterdam to have had¬†a space muffin ( why did I miss out on the space cake craze, where was I??) ,¬†they all made kind of the same experience at one point or another. It also always depends on your mood I learned and that day, thanks to the dramatic death on OITNB, my mood wasn’t great. I had no idea a space muffin could¬†do that to you. So be warned if you ever come to town, better smoke/ vape a little ūüôā

Well, it’s been almost¬†4 weeks since and I still can’t smell marijuana without feeling sick, so that self-experiement is on hold for a while. But not forever.

I mentioned earlier that I’d love to go to an Ayahuasca retreat in Peru – not anymore, EVER! I felt so much fear during these 3 hours after that tiny bite of space muffin that I would just die of fear in the jungle during an ayahuasca session. No, thanks!

I’m sorry that I freaked out some of you as I obviously must have snapchatted and instagramed the incident live – at least I could amuse some of you.

For the ones who missed out this very entertaining event – this is how I woke up that evening, poor Ruby. Poor me. The muffin went into the bin the next morning.

space muffin hundekorb