5th MSanniversary

5 year MSanniversary 2

Happy diagnosis anniversary to me ūüôā

Yes, a happy one as this is how I feel¬†on most days. ¬†Sometimes I wonder if I’ m a real weirdo as I usually wake up feeling super happy, lucky, but most of all, grateful.

It’s been 5 years and I can’t stop laughing as I type this! Gosh, I would have NEVER thought to be where I am now 5 years ago.

The past year has been the very best MS year so far, finally!

First of all – a quick health recap. Not much to report as I feel the best I have since my diagnosis despite that new lesion they found on the MRI in September and I blame that one on a very stressful time in my personal life. I don’t have any new symptoms and can’t ¬†say that I’m bothered by my existing symptoms – I also don’t focus on them. Energy flows where attention goes so I rather focus on other things ūüôā¬†However – I also learned when these symptoms are a warning sign that I overdid it again or – that my body simply has a suboptimal day and needs a break.

I also ¬†started to meditate on a daily ¬†(these days only “regular”) basis last year and went to two Dr. Joe Dispenza workshops, one here in Amsterdam and to the Advanced Workshop in Mexico where I met so many inspiring people.

Still sticking to a meat, dairy ( except every few months when I’m having a fancy dinner somewhere I’d go for a bit of cheese instead of dessert), soy and gluten free diet but reintroduced eggs and coconut oil which isn’t allowed on the “Overcoming Multiple Sclerosis Diet” so I guess I just follow my “own” diet and needs now and truly ¬†learned to listen to my body.

In addition to a healthy diet I still take my daily supplements ( Vitamin D, B12, zinc, fish oil, magnesium, non-acidic vitamin C, super greens powder, Sugarbearhair gums ) and also supplement my protein intake with vegan/gluten & soy free protein powder shakes, especially after working out.

I joined a Wim Hof workshop and finished it with an ice bath Р it felt so amazing I decided to stick to a cold shower regime and even made it to FreezLab for a whole body cry session in Р110C / -166 F a few times !

I must confess I still don’t do yoga on a regular basis but have been to Garth McLean‘s Iyengar workshop in November and will also join one next week as he’ll be in the Netherlands again. Can’t do everything ūüėČ

In March I went skiing for the first time in 5 years and even surprised my dad as everything went very well, I really love the cold, snow and winter as my body feels super normal in these temperatures and I hope to ski more often next winter.

Mountains – I also started indoor climbing to prepare for our Mission Summit expedition to Mont Blanc and even passed my top rope climbing exam.

The biggest change of all ¬†has happened in my working out routine as I started CrossFit in August 2016 and that was my game changer. I tell you, the first weeks were a fight as I had the worst fatigue after each workout resulting in ¬†3h siestas but now, 9 months later, I feel like I totally own it ( most of the times) and the progress I’ve made is incredible. Just to name one, when I first started I couldn’t really jump ( MS related, it felt like I’m pretty much glued to the floor the past years but hey, that’s also pretty much an invisible symptom as how often do you jump on a daily basis ) and started with a very low box about the height of a shoe box. Since April I jump the regular height for ladies which is 50 cm/ 20 inches. I ¬†go to CrossFit 3-4 times a week and it is one of the most important things to me. Not only do I love to challenge myself mentally/ physically but I also met so many super nice people there and made a bunch of new friends I also hang out with outside of the box.

The second BIG thing that happened in the past 12 months is the Mission Summit expedition that will start in exactly 4 weeks, flying out to Geneva on July 16th, wohooo! I will climb my very first mountain! Well, actually we’ll climb 2 mountains and both are above 4000m ( 13.100 ft), the Grand Paradiso in Italy and Mont Blanc in France. BOOM. Moving mountains for MS as the first team of MS patients to summit Mont Blanc ( we’re 4 with and 4 without MS) , if you would like to donate for the study “Project Y” at VUmc MS Research Center we’re fundraising for, please visit my page.

I’ll celebrate my 38th birthday in Chamonix on a glacier learning how to use the ice axe, crampons and navigate safely along the crevasses.

Thanks to all the training for the expedition I’m most likely in the fittest shape I’ve been in a long while and this is just the beginning.

5 years ago ( actually up to 3 years ago) I couldn’t do ANYTHING with my right arm and hand, slept 18h a day and considered moving back to the small village I come from in Germany, kind of giving up as I thought well, that’s it. ¬†I’m glad I didn’t as I would have missed this fantastic life and I’m loving every second of it.

Got to go, representing Mission Summit today at the largest MS event in the Netherlands, Arena MoveS. We even got a mobile climbing wall where everyone is welcome to have a go. Later in the afternoon I’ll climb a few hundred stairs along the football arena with my 12kg backpack. Unbelievable. I feel so lucky and blessed ‚̧

Just thinking about how strange it is that Arena MoveS is on June 25, ¬†my 5 year diagnosis anniversary and that the Mission Summit expedition starts on July 17, my birthday. Synchronicity at its best. I guess I’m right where I’m supposed to be at this point in my life. All is good.

Here’s to ¬†the next 5 years and new, bigger adventures. Already thinking about what to do after I return from Mont Blanc, need to find a new challenge to keep up my 6 days a week training routine ūüôā

5yearMSanniversary collage

 

 

Mont Blanc climb itinerary

The countdown is on, only 3 months to go until the Mission Summit Mont Blanc 2017 expedition and I wanted to share our climbing itinerary with you.

On Sunday, July 16, 2017 we fly out from Amsterdam to Geneva, a day before the expedition officially starts¬†to make sure we‚Äôre all well rested (no matter how ‚Äúfit‚ÄĚ we seem, travelling with MS still gets me every time so the more time to recover and to “arrive”, the better)

Day 1 ( Monday, July 17, 2017) Arrival in Chamonix ( and my birthday, wohoo!)

Day 2 ( Tuesday, July 18, 2017) Mer de Glace ( 2100m)

We will meet our guides, get the equipment ( like harness, crampons, ice pick but also the mountaineering boots that most of us rent as they are very $$$, fingers crossed they have a comfy pair that fits me) and take a train to Mer de Glace (¬†‚Äúsea of ice‚ÄĚ, it‚Äôs the largest glacier in France, 200m deep and 7km long) for altitude training and to practise how to walk¬†with crampons on the ice.

Day 3 ( Wednesday, July 19, 2017) Rifugio Vittorio Emanuele II ( 2735m)

Leaving for Aosta Valley in Italy via the Mont Blanc tunnel ( approximate travel time 2h) where we‚Äôll start a heavy 3h long hike to Rifugio Vittorio Emanuele II, a traditional Italian mountain hut first build in 1884 and as I was told, loved by sociable Italians who like to share their climbing adventures till late at night over a glass of red wine or two ( I already ¬†like that part very much or at least the idea as I guess I won’t be drinking ūüėČ ) – except the climbers who plan to summit the highest mountain in Italy early the following day which is the¬†Monte Bianco aka Italian side of Mont Blanc.

Day 4 ( Thursday, July 20, 2017) Ascent to Gran Paradiso ( 4061m) 

We‚Äôll start our climb up the Gran Paradiso ( highest mountain entirely within Italy) ¬†by moonlight. The first hour of the tour is going to be¬†tricky as we need to make our way through a very rocky terrain with big boulders. By sunrise we‚Äôll attach our crampons and harnesses that connect us to the rope. Safety first! ¬†( I hope it won’t be too scary, that’s why I’m already busy with taking climbing classes each Monday).¬†The route leads us right over the glacier¬† and the higher we climb, the steeper and tougher it gets (hmm).

Once the sun is up we will hopefully have a great view to make up for all the hard work! After climbing a couple of hours we get a first glimpse of the top of Gran Paradiso. The last 100m to the summit ask for a lot of focus and concentration as we’ll¬†reach the top over a very steep ridge of rocks¬†– I guess by then everyone will know for sure if they are afraid of heights or not. ( After watching this video I’m not so sure of it anymore, kind of made me dizzy but I’ll find out!).

On top there’ll be a picturesque 360-degree view on the Alps famous mountain range Рif the weather plays along.

Descent  into the valley using the same (very steep and very scary)  route , a quick stop at the hut for some food ( and most likely a sneaky sip of vino) and back to Chamonix/ France where we’ll arrive around dinner time.

Day 5 ( Friday, July 21, 2017) REST

Rest from the last couple of days, we can chill out at the chalet or explore Chamonix for a bit. This rest day is extremely important to recover from climbing the top of Gran Paradiso  ( 4061m)  before we attempt to climb Mont Blanc ( as you know, most of us climbers have MS so rest is very important)

In the afternoon we‚Äôll practise again some more rock climbing techniques for the ascent of the very steep Grand Couloir ( ‚Äúlarge gulley‚ÄĚ) at a local climbing garden. This spot is well known for accidents and¬†notorious for falling rocks so it‚Äôs vital to learn some extra safety rules. It’s really the most dangerous part of the ascent/ descent and to be honest, I¬†really fear and respect the “gulley”.

After the training we’ll have a meeting with the guides to discuss the strategy for the next days, build the climbing teams ( teams of 2 climbers and 1 guide), get further advice and check what needs to be in the backpacks for the following days during the ascent ( hard shell clothes, extra warm layers, powerbanks to charge our phones/ cams, SNACKS etc)

Safety is of course our number one priority that‚Äôs why we chose for a very well known tour operator with many years of experience and great guides who will make sure we’re safe, for the Mont Blanc the ratio is¬† 2 climbers / 1 guide and all other tours during this expedition ¬†4 climbers/ 1 guide.

Day 6 ( Saturday, July 22, 2017) Ascent Tete Rousse ( 3167m)

After breakfast we depart to¬†Les Houches where we‚Äôll take the cable car to Nid d‚ÄôAigle ¬†( “Eagle‚Äôs nest” 2372m), this is where the hike to Refuge de Tete Rousse (3167m) starts. The trail then¬†passes rough boulder-strewn terrain and snow patches. After approx. 3 hours we should arrive at Refuge Tete Rousse ( 3167m). Once there our guides will discuss¬†the strategy for the next day(s) over dinner and if the weather forecast is on our side, we’ll climb to the top of Mont Blanc the very next day!

Day 7 ( Sunday, July 23, 2017) Summit Day!

All fingers crossed today for good weather and a safe ascent to Mont Blanc!

Rise and shine at 1 AM ( ūüėČ this will be a 10-12h climbing day!!!) A quick bite, drink and off we go, out into the cold dark ( usually -5 to -10 degrees in July), attached to ropes, on our way to the goal, the top of Mont Blanc.

We’ll use¬†headlamps that give just enough light to see where we can carefully place our feet. Via the steep Gran Couloir ( yes, we’ll do ¬†the “gulley” in complete darkness besides a tiny lamp on my forehead!)¬†and attached to ropes we‚Äôll climb up to Aiguille du Gouter ¬† ¬† ¬† ( 3817m) for ¬†a quick break at Refuge du Gouter before moving on to the glacier. If we‚Äôre on schedule the sun should be¬†coming up slowly behind the mountain range at this point¬†and we‚Äôll finally see our goal¬†– the summit.

The next part of our route runs from Dome de Gouter (4300m) to the Vallot shelter (an emergency bivouac that sleeps up to 12 climbers) , from there it’s ¬†‚Äúonly‚ÄĚ 400m climbing over the very narrow ice ridge ‚ÄúArete des Bosses‚ÄĚ ( picture that crazy ridge of Gran Paradiso but then with snow ūüėČ ) to the top of Mont Blanc ( 4810m).

Once we‚Äôll reach the summit¬†we should be able to enjoy a breathtaking panorama view and you bet we take some pics, I might even try to livestream on Facebook ūüôā

Afterwards we return to the Gouter hut ( approx. 3800m) for¬†some well deserved rest and a good night’s sleep.

Day 8 ( Monday, July 24, 2017) extra day for Mont Blanc 

This is an extra day in case we couldn‚Äôt attempt to climb¬†the summit due to bad weather, Mont Blanc is known for its almost unpredictable weather and especially strong winds. From the Gouter hut it‚Äôs ‚Äúonly‚ÄĚ a 1000m climb, an advantage and¬†great chance for a second summit attempt.

Otherwise/ and this will be the day we descent to Chamonix and we should arrive at the chalet in the afternoon. Finally time for a shower ( will be the first one in DAYS) , fresh clothes, a delicious meal, for sure some wine and time to reflect and CELEBRATE.

Celebrate us, our personal, small win against our fears and MS but hopefully also that we hit our fundraising goal for “Study Y” to get a step closer to understanding this disease.

Day 9 ( Tuesday, July 25, 2017) 

A last breakfast with the team before¬†heading back to Amsterdam in the early afternoon. We’re all booked on the same flights so there better be a welcome committee waiting at the arrival hall ¬†ūüėČ

 

 

 

 

 

Mission Summit – climbing Mont Blanc

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

mission_summit_logo

 

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