I’d always enjoyed exercise and working out - until May 2012. What started with “only” two numb fingertips ended, within the following four weeks, in the loss of strength of my right hand and arm as well as a numb body, from head to toe. On June 25 2012, I was diagnosed with RRMS.
A surprise diagnosis
It came as a surprise to me, I am the only one in my family with MS and didn’t know anyone with it or what it was exactly until that day. Fatigue had the biggest impact on my life, I felt like my body and mind had barely any energy left to function. I slept for at least 16 hours a day, needed to take a nap after each shower and could barely hold cutlery or anything in my right hand as it didn’t cooperate.
My life as I knew it came to an abrupt halt. I’ve always travelled and worked a lot. I loved to go out in the weekends. That stopped after my diagnosis and was the hardest part to adjust to. It took me about one and a half years to digest that my "old" life didn’t exist anymore, I "retired" from work at the age of 33 and my social circle had also changed. I knew I had to reinvent myself and my “new” life with MS.
Slowly but surely the symptoms of my 2012 relapses decreased and I started to research what else I could do to improve my health. That’s when I found Overcoming MS and other alternative approached to treat my MS besides the usual DMDs.
During my neurological rehab I rediscovered my love for water sports and decided to pick up swimming again in early 2013, it’s a great low-impact exercise and my body couldn’t overheat. In the first weeks I was completely exhausted after swimming although I only swam for 15 mins but did slowly notice an increase in my fitness, overall well-being and surprisingly, less fatigue.
The exercise starts to pay off
On top of swimming, I regularly joined yin yoga, a slow-paced style of yoga with postures that are kept for longer periods of time. The instructor made me feel in very good hands as she propped up my weak body and helped me keep the postures. In the beginning I had to use a lot of yoga props like blocks and straps as my right arm didn’t work properly and my balance was completely off. However, I finally started to “feel” like I’m in my body again. I wanted to get my fitness back in year two after my diagnosis and joined a tiny gym across the road where I started to cycle and use the machines. It was very frustrating at first, I could only cycle for five minutes before the fatigue and all kinds of weird MS symptoms hit me hard. But then again, after only a few weeks I noticed that my fitness level improved, day by day, in baby steps. To me, adding a new kind of exercise or workout always results in more fatigue at first but once my body “understands” what’s happening, it helps me to improve my overall quality of life, health and fitness. In the summer of 2015 I decided to invest even more in my health and started to work with a personal trainer who created a training plan for me, focusing on heavy weights and high interval training, to get my strength and condition back on track.
A love/hate relationship
I really had a love-hate relationship with that kind of workout during the first months, especially pushing or pulling a heavy sled up and down the gym as I needed to sleep for two to three hours afterwards but, no surprise, my fatigue and symptoms improved yet again. That’s when I truly felt this whole gym regime is working and it was definitely worth hanging on, even on days I wanted to throw the towel.
I rediscovered my love for working out, even with this “new” body. In 2016 I even started doing CrossFit. After all the things I heard and noticed on the media, I wondered if that’s the right activity for a person with MS and the answer is yes! CrossFit really is for everybody and “every body”. Each part of a CrossFit workout can be individually scaled to what a person can or cannot do. It really doesn’t matter if you’re very fit, overweight or injured, the coaches have a solution in place for every challenge.
Starting CrossFit was the best decision as it was the beginning of further activities I thought I could never do again. Exactly one year ago the craziest thing happened, and if someone would have told me five years ago about what journey I was about to embark, I’d laugh it off and call that person insane.
I signed up for the 2017 Mission Summit expedition to climb to the top of the highest mountain in the Alps, the Mont Blanc (4,808 m or 15,774 ft) as part of the first MS Patient team to raise funds for MS research. I’ve always wanted to climb a mountain and in preparation for the excursion I started to exercise pretty much daily. Not only CrossFit but also running (which is my least favorite exercise) and long hikes with a backpack full of water bottles, up to 33 pounds in weight. I would do 12-18 mile hikes - of course with dog Ruby, my favorite training buddy.
See also: Overcoming MS challenges, including the Marathon In Many Bites, and hikes across Hadrian's Wall and The Himalayas
A personal mountain to climb
In mid-July 2017 I finally travelled to Geneva, together with the Mission Summit team, consisting of four people with MS, four friends/partners and two guides, to start our fundraising adventure. I’d never felt more alive since my diagnosis than up there in the mountains - despite the fact that we had to return 1300 m (or 4,200 ft) below the summit of Mont Blanc due to severe weather and storms. I conquered my 'personal' mountain nevertheless.
On the way up I had a very special moment when I realized how far I’ve come in the last five years. I remembered where I’ve been that day in July in 2012, in a neurological rehab clinic, not able to do a lot with my hand or arm and now I was climbing a mountain, finally trusting my body again. I know my body is different but I feel I can manage my symptoms and especially the fatigue with exercise. The last years have taught me to listen to my body and its signs, also when it is time to rest.
The Inca Trail hike
In addition to this new 'trust' I discovered my love for hiking, nature and the mountains. It was not so much the climbing I enjoyed but all the hiking involved with breathtaking views and the possibility to hike at my own tempo. That’s when the idea of my upcoming adventure, hiking one of the most famous treks in the world, was born. In March I’m going to Peru to hike the classic four day Inca Trail, all the way to Machu Picchu.
The trail is 26 miles long and the highest point we’ll pass is the dreaded 13,700 ft (4,200 m) Dead Woman's Pass. In a small group we’ll hike daily distances from 10 miles on the first to 2 miles on the last day when we’ll arrive at Machu Picchu during sunrise. As so often in life, they say it’s the journey that counts and not the arrival, I’m also looking forward to the beautiful Andean mountain scenery as we hike along the cloud-forest, subtropical jungle and a stunning mix of Inca paving stones, ruins and tunnels.
My next big challenge
The nights we’ll spend sleeping in tents along the trail and the temperatures usually drop down to zero degrees. I’m not worried about my MS causing any trouble with the hike, all I have are the usual concerns like developing high altitude disease but I made sure I got enough time to acclimatise to the height in Cusco. I love pushing my body and mind further, little by little and a healthy lifestyle showed me that the sky is the limit, even with my MS. I am very grateful for the work of Overcoming MS and other support groups that showed me that a few lifestyle adjustments like diet, exercise and meditation can have such a big impact on my quality of life and overall health despite MS.
Anja tweets from @With_MS, and also writes about exercise and multiple sclerosis on her blog, Stumbling Princess.