Have you heard about MS warriors? It’s a term that many use to empower themselves or others who have been diagnosed with multiple sclerosis. I think the aim of calling oneself MS warrior is to change perspectives: from feeling like a victim (“poor me”, “this has happened to me”, “I am powerless”) to taking matters of health into one’s own hands (“I’ve got this diagnosis, but I am not giving up.” “I will fight for my health and happiness”). This idea of empowerment is great.

However, whenever I hear the term MS warrior, I shrink. I feel uncomfortable. I don’t like it. MS is a disease where our own immune system, which is meant to ensure our health, attacks our bodies and weakens them. Multiple sclerosis means “many hardenings”. In many ways, we describe MS with war terminology: attack, hardening, flare… And conventional medicine (this is not a post against western medicine, I’m being treated with Natalizumab), treats MS just like that. We “suppress” the immune system with interferon or chemotherapy, we “prevent” our immune cells from entering the brain with mononuclear antibodies, and we are potentially “confronted” with a disability.

Calling ourselves MS warriors implies that we are at war, that we

  1. vigorously fight against this disease and/or
  2. fight to live a happy life despite the diagnosis.

In either case, it is us against MS. That doesn’t seem right to me. It means responding to aggression with aggression. Why not approach MS peacefully? What if a change in attitude helps us understand our bodies better and supports holistic health? I sincerely believe that our bodies always do the best they can to work in our favor. What if we approached MS with that in mind? What if we gently turned inward? What if we learned how to listen to our bodies? You can ask your body what it needs at any given moment. Is it sleep? Is it nutrients? Is it movement? Is it more community? Is it quiet time? What do you need more of and what can you let go of because it does not serve you anymore?

Maybe there is causation: if our thoughts are hard (“I am fighting this disease,” “I won’t give up,” “I will win”) our bodies harden even more. And, just maybe, when we soften our thoughts, our bodies soften as well? I don’t know if this is true, but I know that I feel a lot better when I take notice of MS symptoms with loving kindness. When I ask my body what is wrong and how I can support it best at any given moment.

War is fear-based. If there are only two underlying emotions: fear and love, why not approach MS with love? How about choosing a term that expresses love for ourselves, our bodies, the entire world? How about “MS peacemaker”? I think I like that a lot better. Let me know if you like the term MS warrior in the comments!

girlfriends

(no, not my weight ????)

  1. I was born in 1974, the year of the tiger in the Chinese horoscope and the year when U.S. president Richard Nixon resigned following the Watergate scandal.
  2. I was diagnosed with MS in 2000 when I was 26 years old. I had just finished graduate school.
  3. I first learned that I might have MS from an ophthalmologist in the U.S. right after I graduated from graduate school. He told me not to worry and that it wasn’t a big deal. This is still engrained in me today.
  4. After graduating from a German high school (Abitur), I moved to Paris to study international relations at the American University of Paris (AUP).
  5. After three semesters at AUP, I did a semester abroad at American University (AU) in Washington, D.C. I loved AU and D.C. and transferred there.
  6. My dad is Palestinian, my mom is German.
  7. I have four children, two boys and two girls.
  8. One of my biggest passions is reading, but I rarely have time to read these days.
  9. I am a night owl, not an early bird.
  10. I love to cook.
  11. I love creative work.
  12. I love being around people.
  13. I love to travel.
  14. We renovated our home with sustainable and green building materials.
  15. When I worked for the UN, I traveled to countries like Tajikistan and Angola, places that I might never have gotten to know as a tourist.

This list will irregularly be updated ????

Whew, bummer. You’ve had weird symptoms. Maybe numbness, a tingling sensation in your arms or legs, or double vision. You didn’t understand what was going on, and, most likely, it took doctors quite a while to figure out what was wrong with you. But then you got the diagnosis: multiple sclerosis. What a big scare. Now you’re worried: You don’t know if or how this will change your life, and you imagine all kinds of scenarios. Many are frightening. Maybe you’re even concerned that soon, you will end up in a wheelchair.

But don’t worry too much! I was diagnosed with MS 22 years ago and have talked to many people with MS since then. Here are my top 5 tips for the newly diagnosed that I wish I had got when I got my diagnosis.

Yes, that’s right. Take a slow, deep breath in through your nose. Breathe in for at least five seconds. As you breathe in slowly, try to feel your breath fill your belly. Hold it for two seconds and then breathe out slowly through your mouth for six to seven seconds. Repeat until you feel calmer and more relaxed. It shouldn’t take long.

Take a slow, deep breath

Why you should do this? When we worry, we tend to tense up and our breathing becomes shallow. Because worry activates our fight or flight system, we take small, short breaths. When we do this for too long, we can hyperventilate, which can cause a host of symptoms that people might then attribute to MS, such as lightheadedness, weakness, and tingling. When you become calmer and more relaxed through conscious breathing, you can assess your situation from a more neutral and inspired perspective and not based on fear. The following tips will become way easier to implement.

Find the right neurologist

It is difficult to find your way through the jungle of MS treatments that standard Western medicine offers. Try to find a neurologist that knows MS well and regularly treats MS patients. I know from my own experience and from what many others have told me that it can be hard to find a physician you can trust and who knows his stuff. When I first got diagnosed, I was lucky to have a doctor who was an MS expert. Then I moved to Bonn and saw at least five neurologists in my quest for a new doctor to treat me. None of them knew about MS. They told me that no treatment worked, that I would just end up in a wheelchair, etc., etc. Every time, I left the office crying and never went back. After a few months, a physical therapist told me about a neurologist who had an excellent reputation. From the first appointment, I was taken seriously and felt well cared for. The search for a doctor is worth it. Your health is on the line. Trust your intuition and keep looking until you find the right person!

Become aware of the support that exists

When you have got an MS diagnosis, find support and all the information you can about how you can take care of your health! Maybe some people you know also have MS and can lead you to resources that can help you. Search the internet. There is a lot of very valuable information out there about diet, supplements, exercise and many other aspects of living with MS. Join a Facebook or other online group or find an offline support group that you trust, but make sure the people don’t bring you down. You don’t need anyone telling you that doomsday has arrived and your health will just decline from here. Find the right people! Everything is easier when you know you are not alone.

Listen to your body

When you pay attention, your body will tell you what it needs. You will realize what supports your health and what undermines it. Focus your awareness on the present moment and notice and accept your feelings, thoughts, and bodily sensations. Doing this is called mindfulness. When you are mindful, you will understand your body’s signals better and can act from that understanding to best support your health. Are you stressed? Are you eating nourishing foods? Are you exercising enough?

Being mindful is difficult, but it can be learned. If you are new to the idea, create cues that help you remember to be aware. Set an hourly reminder on your phone, or put a post-it note on your bathroom mirror. When the alarm goes off or you see the post-it, focus on your breath for a few seconds. Then turn your attention to your body. How are you feeling? Is there tightness somewhere? Are you comfortable? Once you are aware of those things, you will notice what helps you. You will make the connection between the food you eat and how you feel. You will understand how or if a supplement helps you. You will be able to guide yourself the best you can.

Don’t be ashamed

When I was first diagnosed with MS, I didn’t want anyone to know. Well, at least not anyone who should have known. Not my employer, not potential boyfriends, not strangers. I was worried that they would look down on me. That they would pity me. That they would not take me seriously anymore. Hiding my MS worked fine until I started having symptoms that didn’t subside. But even then, I tried to lie about what was wrong.

Over the years, I have seen many people act just like I did in the early years (well, probably 10 years ????) after my diagnosis. Quite recently, I have even met someone who did not want to tell an acquaintance who also had MS about their experiences because they were worried that “the wrong” people would find out. Twenty-two years after my diagnosis I want to shout out: Don’t be ashamed! There is nothing wrong with you. If anything, telling those around you about your MS helps you! Everyone has a network, and who knows? Maybe your boss will be the missing link who can guide you to the right doctor, or maybe your new partner is relieved to find out that they are not the only ones with a potentially undesirable health condition. ????

What are your best tips for those newly diagnosed with MS? Write them in the comments ????

Es ist wieder soweit: 12 von 12! So ein tolles Format, und es ist so viel einfacher, daran zu denken, wenn der 12. auf ein Wochenende fällt ????

Kennst du 12 von 12? Am 12. eines Monats dokumentieren Blogger ihren Tag in Bildern, und bei Caro von Draußen nur Kännchen verlinken ganz viele von ihnen ihre Beiträge.

Slippers
Es war zwar ein Sonntag, aber der Tag begann früh: um sechs Uhr klingelte der Wecker, da unser Ältester auf Klassenfahrt fuhr. Nach dem Wiegen des Rucksacks haben wir auf den allerletzten Drücker noch ein Paar besonders leichte Hausschuhe hervorgekramt, denn jedes Gramm Gepäck zählt. Er macht eine Hüttenwanderung.
Auf dem Weg zum Ausflug
Am späten Vormittag sind wir zu einem Ausflug aufgebrochen.
Hoergeraet
Der begann mit einem kleinen Schreck, als mein Auto sich mit dem Hörgerät von Stefan (https://www.apertureonepointfour.com/) verband und der Parkassistent in seinem Ohr sehr laut piepste ????
Fliegen
Es war ein warmer Tag. Wir hatten uns verfahren, und kaum hielten wir an um den richtigen Weg zu finden, paarten sich zwei Fliegen auf der Windschutzscheibe.

Fotoausflug
Und dann sind wir doch angekommen ????

verlassenes Haus
Hier lebt schon lange niemand mehr…

Birken
Birken sind Pionierpflanzen. Sie schaffen neue Lebensräume.

Aachener Printen
Spaß schadet nie ????
Mohn
Der leuchtende Mohn kündigt den Sommer an ????
Baum
Was nicht passt, wird passend gemacht? ????
Kopfsalat
Abendessen aus dem Garten.
Teddybaeren
Meine Tochter ist nicht zum Ausflug gekommen. Sie war auf dem Flohmarkt und hat einen riesigen Teddybären erstanden. Nun haben wir zwei von der Sorte ????
Der Vollständigkeit halber noch dieses Bonus-Foto: Schattenseite – Am Ende eines Tages in der Natur sehe ich um diese Jahreszeit so aus: Gräserallergie.

Das war mein Sonntag. Was hast du am 12. Juni 2022 gemacht? Berichte sehr gerne davon in den Kommentaren!