June 25, 2012 – June 25, 2018
Happy 6th multiple sclerosis diagnosis anniversary to me!
The sixth year living with MS ( after diagnosis that is, I have it waaaay longer) was the BEST one yet – I attempted to climb the highest mountain in Italy, Gran Paradiso ( 4,061 m / 13,326 ft ) the highest mountain in the Alps, Mont Blanc ( 4,810 m / 15,774 ft ) and hiked the classic 4 day Inca Trail and its infamous “Dead Woman’s Pass” ( 4,215 m / 13,828 ft ) all within 9 months.
Only one year ago I didn’t even know how much I love hiking, the great outdoors and -CAMPING of all things.
I got to be part of the Mission Summit team and in addition to other fundraisers and previous events we finally received enough donations ( Thank you to everyone who contributed! ) to get the VUmc MS Research team started with the study “Project Y” that will hopefully find out why some MS patients progress faster than others and what the triggers are.
I had the honour to be part of a great MS campaign, write several articles and finally met some of my fellow MS bloggers in real life , told my MS story in a video and interviews for the MS App CLEO and to many people and professionals throughout Europe.
Without MS none of these challenging, adventurous, fun and interesting things would have happened.
You bet I am thankful for my struggle as it really did open completely new possibilities and makes me love life to the max each and every day.
I made friends with my MS, I don’t see it as an enemy as that would mean I am the enemy myself and that’s a not very productive thought pattern if you want to overcome and change things, only love can do that, not hate or fear. The few really bad days I’ve had in the past 12 months I can 100% blame on my own reckless behaviour and I know I totally overdid it for 3-4 days prior to one of those – old me said limits are there to be pushed 😉
But all of the above also means I’m not sure if or how I’ll go on with Stumbling Princess moving forward.
After living this new life for several years and constantly raising awareness for MS I think it’s time for a break, or even a goodbye, of Stumbling Princess and I feel the desire to start searching for another “life” purpose. Yep, at the moment I’m pretty tired of it, that’s why I’m offline for the summer. I don’t want to put that MS stamp on my forehead anymore, that’s why I also hiked the Inca trail to Machu Picchu as a secret “closet” MSer which was weird as I’ve always been very open about it.
I want people to get to know ME first and not my MS. Believe me, I’m way more fun 😉
I’m one of the ( MANY !!! ) MS patients that don’t “fit in the box” and unfollowed all “classic” MS societies/ groups out there over the past year as they just don’t cater to “patients” like me. Most of the times I don’t find any new, useful or inspiring information on their pages but at least some have finally started to pick up the healthy lifestyle, exercise and diet approach. However, thanks to social media I know there’s a HUGE tribe of other out of the box MS patients/ MS groups out there and I hope over time it’ll change the program run by the MS societies as MS is the disease with 1000 faces – and my face is also one of them.
That’s another point I’m really tired off – the arguments and judgements amongst MS patients themselves although, in the end, we’re all in the same boat. None of us have an idea what’s going to happen tomorrow ( neither do “healthy” people by the way…) and want a cure for MS. Whenever a new MS campaign comes out it starts all over again, the disease is either pictured as too positive or too negative and there’s always a huge, often mean discussion going on.
I just don’t like how it makes me feel and avoid reading/ watching anything “negative” in general as I don’t want to feed my subconscious mind with it. In the past months I even had a few moments I started to feel guilty about how “well” I am doing and that’s total BS and a clear sign to simply step away.
Believe the diagnosis, not the prognosis.
If I could make a wish for my diagnosis anniversary it would be the addition of mind body medicine within the MS centers ( actually within every hospital as all patients could benefit from it ).
In the Western medicine we have a disease management system and not a health care system, it’s focused on the symptoms and not the actual cause of a disease. Our Western system is great when it comes to crisis care but definitely not for chronic conditions where you need to find the root cause of the disease and not only suppress the symptoms. That system leads to the typical situation where a patient gets 3 pills to treat the symptoms and 5 additional ones to treat the side effect of those pills and so on.
Did you know that it’s not even sure yet if multiple sclerosis is an autoimmune disease at all or something completely different?
That’s why I’d like to see neurologists not only prescribe “disease modifying drugs” but also a healthy diet, exercise and something to calm down the “nerves” and help to “relax” like meditation, massages, mindfulness, breath work, TCM, yoga – whatever supports and works for the individual patient ( and the hocus pocus me definitely wants to see something like psychotherapy in there as most MS patients have a trauma and emotional blockages)
Puking my guts out in the Peruvian Amazon during mainly terrifying ayahuasca ceremonies and by doing so releasing so much sadness, anger and grief was the most healing thing I ever did. Feeling unconditional love and self love for pretty much the first time in my life definitely has changed me. I’m eternally grateful for the “gift” I received from the Shipibo shamans, the facilitators, volunteers and my fellow ayahuasca drinkers. So much love. I wish I could organize a retreat especially for patients suffering from chronic disease ( maybe I’ll make this my new life purpose 😉 ).
I feel so blessed for all the support I received from my family, Mr. X, Ruby, friends, coaches & trainers, kundalini/ breathwork/ meditation teachers and all of you that have touched my life and heart in the last year.
No one knows what the next 12 months will bring but my intentions are to find a new meaningful (life) purpose and to focus on even more (self) love and healing.
I can tell you one thing for sure:
I’ll keep on loving and living life to the fullest and make it an even better year no matter what 😛
Sending you love and blessings,
Stumbling Princess Anja ❤