5th MSanniversary

5 year MSanniversary 2

Happy diagnosis anniversary to me 🙂

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 🙂 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 –  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 – 110C / -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 😉

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 🙂

5yearMSanniversary collage

 

 

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 ❤

emiratesomanmaastrichtcote

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 🙂

 

The making of the “Million Euro Woman”

I always thought you are supposed to rest and relax during a rehab program – turns out, it’s the opposite. All patients are constantly on the run from session to session and it really does feel like a sporty Club Med as all you see are tanned, smiling people in sport outfits no matter what condition they are in. I even woke up to the sound of Nordic walking sticks this morning as they start as early as 6 AM to get everything in one day.

I had my intake examination first thing yesterday and the prognosis looks good – but again, MS has 1000 faces. My program is based on sports and psychological sessions and I got to know more about drug treatment for the first time – I will be a “Million Euro Woman” if I life for another 40 years, that covers only the daily basic meds and I honestly had no idea how expensive these drugs are.

I’d rather have no MS and the money instead 😉 Yay!

Not to mention that I might need to inject the Meds myself 3 times a week…I really really hope and believe that thanks to research meds will get better and easier to use.

I am worried about the medication as the side effects must be horrendous – there is even one pill that requires you to stay in intensive care for the first days as it completely slows down your heartbeat.

Well, I am still super positive – probably I am just pushing it all far far away, but that’s ok for now, I have enough time to worry about MS the next weeks, if at all. I just want to move on, like I always do.

I also never asked myself why I got MS ( one of the questions during the intake) – some people get diabetes, cancer or other things, I got MS. End of story. I am not a “why” person by nature, I just accept it and deal with it. “Why” is a dangerous word and it’s easy to get stuck in it and let life pass. Not me and there is no answer. Destiny. One day I’ll know.

#Accept and overcome like Jack Osbourne would say.

Off I go – Rehabilitation Time

Just a quick update – I got a spot in very good clinic that specializes in neurology and will check in today for at least 3 weeks. The Schmieder Klinik is in the very South of Germany at the Swiss border in the picturesque village of Gailingen am Hochrhein. Not sure what to expect as I have never been in a rehab program but what I heard about it, it must be great – and most of all, get me back up to speed and “heal” the psychological damage caused by the MS diagnosis. Still not sure if theinsurance will cause issues, but I deal with it another time and just go now and claim expenses later ( again, insurance is a different chapter 🙂 )

I picture Club Med meets hospital meets summer camp, but we will see – I can’twait to finally start working on an improvement and get ready for a life with MS. They offer all kinds of therapies from aqua, physio, dance etc. and I hope to meet fellow MS patients and specialists to get further information on the topic as I got no and am still a newbie. Searching the web on it only drives you crazy.

OK, time to pack – I really hope they got wifi there, still need to get a German mobile but will also have a single room with own landline in case you want to call, will send you the number/ address if you PM me on Facebook.

Have a nice day,

Anja