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

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 ????

Have you heard? A new Harvard study finds a strong link between Epstein-Barr virus (EBV), the virus that causes mononucleosis, and multiple sclerosis (MS). Presumably, EBV is a major cause of MS. The Harvard press release says:

„Multiple sclerosis (MS), a progressive disease that affects 2.8 million people worldwide and for which there is no definitive cure, is likely caused by infection with the Epstein-Barr virus (EBV), according to a study led by Harvard T.H. Chan School of Public Health researchers.“

https://www.hsph.harvard.edu/news/press-releases/epstein-barr-virus-may-be-leading-cause-of-multiple-sclerosis/

Virus might cause MS

This is not new. Many neurologists and other health care practitioners have long suspected that EBV is an important cause of MS, but this is the first large scale study with significant results. Many researchers have reported that it has been difficult to receive funding to investigate the link between MS and EBV. Gavin Giovannoni writes about this in this month’s Preventive Neurology newsletter:

„After reviewing the epidemiological data about the association between EBV and MS in the late nineties I became convinced that EBV is the cause of MS. One of the reasons why I moved academic institutions, from UCL to Queen Mary University of London, was to study EBV and to develop an MS prevention research programme. Despite being very positive I found that it was difficult to convince my colleagues and the wider MS community to invest in EBV-MS research. I was fortunate enough to get an MRC grant application, but since then I must have had at least 20 grant applications around the EBV-MS hypothesis rejected. It is very disheartening when this happens.“

https://preventiveneurology.substack.com/p/are-we-one-step-closer-to-proving

To be fair, it isn‘t easy to establish a causal link between MS and EBV. As the Harvard press release says:

„Establishing a causal relationship between the virus and the disease has been difficult because EBV infects approximately 95% of adults, MS is a relatively rare disease, and the onset of MS symptoms begins about 10 years after EBV infection. To determine the connection between EBV and MS, the researchers conducted a study among more than 10 million young adults on active duty in the U.S. military and identified 955 who were diagnosed with MS during their period of service.“

MS the immune system attack the myelin

What do the study results mean?

First of all, the study results tell us that MS might be avoided by not contracting EBV. But EBV is VERY widespread: an estimated 95% of all adults worldwide have been infected with EBV in their lifetime, and most people contract the virus as teenagers or in early adulthood. Many infections are asymptomatic, so it is difficult to avoid infection and you may not know if you’ve ever had the virus, The only likely way to prevent an EBV infection therefore might be through vaccination.

Also this week, the pharmaceutical company Moderna announced that they have begun testing an mRNA EBV vaccine on humans. More information about this, including the impact on the Harvard study results, can be found here:

https://www.forbes.com/sites/roberthart/2022/01/14/moderna-starts-human-trials-of-mrna-vaccine-for-virus-that-likely-causes-multiple-sclerosis/?sh=7c59c1411a0

More detailed technical information about the vaccine and the study are available in this Moderna press release:

https://investors.modernatx.com/news/news-details/2022/Moderna-Announces-First-Participant-Dosed-in-Phase-1-Study-of-its-mRNA-Epstein-Barr-Virus-EBV-Vaccine/default.aspx

What if I have MS?

In the articles cited above, it is mentioned that there may be anti-viral drugs that cure MS in the future. This does not help people who have MS now. But there are things you can change in your diet and lifestyle that can help keep pathogens in better check. For inspiration on an “antiviral lifestyle”, check out these websites:

https://www.earthclinic.com/cures/epstein-barr-virus.html

https://www.healyourlife.com/14-ways-you-can-heal-from-epstein-barr-virus

To be continued…

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Frau, Mama, Partnerin, Berufstätige (außer Haus), Köchin, Finanzministerin, Therapeutin, Putzkraft, Innenarchitektin, Nachhilfelehrerin, Taxifahrerin, Geliebte, Ärztin, Gärtnerin und… Multiple Sklerose.

Es gibt so viele Rollen, die ich in meinem Leben habe. Du bestimmt auch! MS ist ein Teil meines Lebens. Das wollte ich lange nicht wahrhaben. Aber in den letzten Monaten war ich innerlich sehr unruhig. Irgendetwas fühlte sich nicht stimmig an, aber ich konnte es nicht eindeutig identifizieren. Dann hatte ich einen MS-Schub. Zum Glück war er leicht und wurde nicht schlimmer. Nach 20 Jahren mit dieser Erkrankung kann ich meinen Körper und meine Seele diesbezüglich ganz genau lesen. Ich weiß, was ich tun muss, damit es mir besser geht, auch wenn es nicht immer schnell geht. Ich habe mich in all den Jahren immer intensiv mit allen möglichen Ansätzen und Therapiemöglichkeiten beschäftigt.

Und dann hatte ich eine wunderbare Lesung meiner „Seelenformel“. Das ist eine Lesung des eigenen Kosmogramms und kommt aus der Astropsychologie, einem kleinen Teilgebiet der Astrologie. Es war „mindblowing“. So Vieles, was immer schon schlummerte, kam zum Vorschein oder wurde bestätigt.
Aus mir kamen Sätze, die in meinem Bewusstsein gar nicht so klar da waren. Manches fiel mir erst beim Replay auf (ich bekam den Zoom Call als Aufzeichnung zugeschickt). Es fiel mir wie Schuppen von den Augen, welchen Themen ich meine Kraft und Zeit widmen möchte.
Ich möchte mich klar und eindeutig dem Thema Heilung widmen. Was immer das heißt.
Es wurde mir auch zum ersten Mal bewusst, warum ich das nicht vorher erkannt habe: Ich habe mich mit den Themen bisher nicht rausgetraut, weil ich keine medizinische Ausbildung habe. [Noch nicht ????]
Aber es ist für mich heilsam, mich im Bereich Gesundheit auszudrücken, zu schreiben und zu sprechen. Wie im Kosmogramm stand: Kommunikation ist eine meiner Aufgaben auf dieser Welt. Dadurch lernt meine Seele.
Und ich habe sehr viel Erfahrung mit allem, was mit MS zu tun hat und kenne mich gut aus.
Ich möchte mich diesem Thema widmen. Dieser klare Fokus ist wichtig für meine eigene Heilung (und das meine ich ganz allgemein) und um meine Bestimmung zu leben: dich bei deiner Heilung zu unterstützen.
Davor habe ich mich bisher immer gedrückt. Aus Angst. Angst, mich selbst ganz offen zu zeigen. Angst vor Ablehnung. Angst, nicht gut genug zu sein. Schluss damit. Ich bin bei Weitem nicht perfekt. Aber das ist niemand. Ich freue mich auf diesen Weg und bin gespannt, wo er hinführt ☺️