Improving mindset after multiple sclerosis diagnosis

Learn how Sabrina improved her mindset with meditation, exercise, and by building a multiple sclerosis community on social media!

Published and interviewed by Mariah Wilson
Interviewed July 18th, 2022

Featuring Sabrina

Sabrina_ me.against.ms

Sabrina is a mental health and multiple sclerosis (MS) advocate on Instagram (me.against.ms). She has connected with people around the globe to show a different perspective on disease and mindset. Her approach to her MS is based on mindset, exercise, healthy food, and supplements. She likes to lift weights and travels the world, mostly outside of Europe. 

Sabrina also volunteers as a blogger and advocates for different organizations that work with MS.

Jump into this health journey:

Join our conversation:

Mariah: Thank you for joining us, Sabrina. Before we begin today’s interview, where we talk about your health journey with multiple sclerosis, can you give our audience a brief introduction of yourself? 

 

Sabrina: Thanks for having me. My name is Sabrina, and I’m 30 years old. I’m from Germany, actually from the southwest of Germany, close to France and Switzerland, and I was diagnosed with MS in 2016. 


Mariah: Thank you for sharing all of that. I like to start our conversation at the very beginning…

Sabrina: I think my first symptoms were very vague, and I didn’t have any idea what it was. There was some paresthesia (numbness, tingling, lack of sensation) and I had some trouble concentrating, as well as trouble reading.

 

At the time, I just thought it was from stress because I was in a very stressful phase during university. When my vision got really bad, I was seeing double, so I went to the hospital, and they couldn’t really help me.

 

They just told me I needed an MRI, which would take a while to wait for.

 

Mariah: It sounds like your symptoms really affected your vision! 

Sabrina: The paresthesia mostly occurred when I was studying and when I was sitting at the table. It would start at my feet and go up my legs. Sometimes part of my nose would get really numb.

Sabrina: The first step was the MRI, which showed some lesions in my brain. Then I had to spend about 8 hours in the hospital where they checked my walking speed and how my hand-eye coordination was working. Then I had to get a spinal tap.

Sabrina: It took approximately 3 months. The first symptoms appeared when I was still in university and that was in February, and in May, I got the diagnosis.

Sabrina: The most well-known theory at the moment is that multiple sclerosis is an autoimmune disease. So the immune system is starting to attack its own body, and it’s destroying the myelin sheath around the nerves.

 

It often attacks the brain, spine, and optic nerve. When a nerve gets damaged like that, the signals it normally sends aren’t fast enough anymore, and that is when you get some of the symptoms I mentioned before.

Sabrina: I did a lot of research before I got diagnosed with multiple sclerosis. Basically, after the first symptoms started, I already had an idea that it could be MS – but I didn’t want to diagnose myself, so I waited till I saw the MRI, and then I was quite sure that this would be the outcome.

 

I read everything that I could because I really wanted to get a proper understanding of what’s going wrong in my body, what’s happening, and how I could help it.

Sabrina: I decided against medication right away, so I never tried anything like that. For me, it’s all about nutrition,  exercise, and most important of all is mindset. 

Sabrina: I think I realized that I was really hard on myself most of the time. I never cut myself slack. I was full of self-hatred and a lot of negative self-talk all of the time.

 

I felt like my brain didn’t want that anymore. That’s how I understood it. So I decided to really work on these things, to work on my mindset, and try and find a better way of treating stress and how to deal with it.

Sabrina: Meditation was a big factor. But the very first thing I did after I got diagnosed with MS, was that for two days I did not talk to anyone, I was just alone in my room. I sat and stared at the wall and tried to make a plan for what to do next.

 

After that, the first step for me was to understand that my self-hatred would do me serious harm. So I had to learn how to stop these processes, how to stop negative self-talk, and how to stop intrusive thoughts.

 

I did a lot of research to figure out what I could do for myself to keep my mind from spinning like that. So those were the first steps I took to change my mindset and slow all these negative things down.  Then I started activities like exercising every day as well. 

Sabrina: There are so many different ways you can meditate. And it doesn’t always mean sitting alone in a room.

 

It can also mean taking a long walk in nature. Often when I meditate, I take a walk in nature alone: no music, no phone, just me grounding myself. I like to do it barefoot which also helps me to ground myself.

 

I also found different forms of meditation, like yoga nidra, which is a body scan. It keeps you connected to all the different body parts. Sometimes I also try meditation that is not guided, where I’m just sitting by myself or lying down and trying to focus.

Sabrina: You do it while lying down in a specific yoga position. It is a guided meditation where you do a full body scan.

 

It starts with the right hand, often starting at the thumb, and then you go through the fingers, different parts of the hand, up the arm, then down to your waist, all the way down to your toes, and then you do the left side – and then it moves a bit faster too.

 

Your mind has to stay constantly engaged but you don’t physically move. I find it quite helpful.

Sabrina: I meditate daily, sometimes even like three times a day. Sometimes it only takes a few minutes where I just need to refocus, be aware, and be in the moment. I really didn’t like meditation at the beginning.

Sabrina: I think the first part was actively listening to myself. Many times I didn’t listen and it would just be this nagging voice in my brain. Like this voice, it’s telling me that I screwed up or that I did something wrong.

 

I really had to actively listen to that, and then I would tell these thoughts to “stop”. I would even say it out loud and then refocus on something else. 

 

I would practice this again and again. However, with intrusive thoughts, if you try to block them all of the time, they will just get stronger.

Sabrina: If it’s intrusive thoughts you’re thinking and struggling with, it makes more sense to think them through to the end and to see what’s going to happen.

 

That’s the problem with intrusive thoughts, they will try to make you feel very scared about something. If you have these kinds of thoughts I find it helpful to think about what is the worst-case scenario and then what’s the probability of this really happening?

 

That helped me because I’m a very logical human being.

Sabrina: Weightlifting is important for me because it keeps the muscle-mind connection working.  I also find weightlifting fun. I can see the results from building muscle.

 

At the time, I also had to lose weight. That was also a factor because excess body weight can increase inflammation in the body.

 

At first, I had quite an unhealthy way of tackling weight loss because I forced myself to do sports six days a week plus HIIT (high-intensity interval training) running.

 

Then I took a long break and now I’m back to going to the gym three or four times per week.

 

I don’t want to force myself anymore because that is the same bad mindset that I had, so I have to be careful with that too. 

Sabrina: I think it’s equally important for everyone to have a healthy mindset, but especially for people with autoimmune diseases. I think that negative self-talk is also you turning against your body, similar to how an autoimmune disease attacks the body.

 

So for me, it was helpful to try and make peace with my mind, at least so that I’m not attacking myself all of the time.

Sabrina: I’m going to therapy. It took me quite a while to get to the point of actually going to a therapist, but I have a good one, and that’s really helpful to have an honest look at your childhood, for example, and the trauma that you might have experienced in the past.

 

I think some people don’t like the thought of therapy. They think they’re stronger than therapy and they don’t need it. But it can be really beneficial for people. I’m that person who tells everyone to go to therapy, but I thought I did not need it.

 

At some point, I realized that there were many things happening in my life that were traumatizing and that put patterns on me that I didn’t want anymore. I wanted to rewrite my story in a way where I don’t have these unhealthy patterns.

 

If you have a broken leg, you would go to a doctor too, so why not go to a specialist if your psyche is struggling? 

 

Mariah: All very good points! Thank you for sharing all of that. 

Sabrina: I found the Wahls Protocol to be helpful, and also a German Book on MS! 

 

Mariah: I was hoping we could explore work by the German author, Sven Bottcher. He has quite a few books and a really good website on multiple sclerosis. I know that he played a big part in your healing journey. The only problem is that all of his work is in German!

Sabrina: This book was very important to me because my sister gave it to me about a week after I got diagnosed. This book described his process of taking his health into his own hands.

 

He had a very severe form of MS, and it started to attack his breathing muscles. He did a lot of mind work too, and he has some images that he used for himself on how to calm these “wild dogs”, as he describes it, that attack him and his nerves.

Sabrina: He cut a lot of different foods from his diet. I think the theory is that you should cut out everything that’s inflammatory or that can potentially be inflammatory.

 

The problem with dairy products, for example, is that the way we consume them is quite unnatural in the sense that there’s this high-speed process that breaks all the particles of water and fat and these are like “alien” substances to the body. So I think the body tries to attack them.

 

The problem is our nerves and the myelin sheath around them, for example, are made of fatty substances too, and if your immune system gets confused, it might attack that too.

Sabrina: I do not follow a specific diet. However, I don’t eat dairy or eggs, but that is because I don’t like them. My diet is definitely high in protein and a lot of good fats. And I don’t eat a lot of carbs.

 

I also try to eat low sugar, but I do love sugary things. I think what is important for me is to not force myself into a very strict diet. So if I really feel like I want to eat a product, I will allow myself to do that. I will not forcefully keep myself away from every food that I like.

 

Finding balance is important. I try to follow an 80-20 rule. Like, 80% of what I eat is really healthy, and luckily, I like eating healthy too. Then 20%, I’m free with what I consume, and I think that’s important for me.

Sabrina: Yes, so I do avoid wheat, MSG (monosodium glutamate), and processed foods. I cook everything myself.

Sabrina: I do use coconut oil a lot. Olive oil can also be helpful. I also use ghee, which probably is not the healthiest, but it is a very tasty one. I also love salmon and tuna, but that’s basically the only fish I like. Omega three is really important and I take it as a supplement too, but it’s really nice to get it from food.

Sabrina: No, it’s also a lot of tofu and plant-based proteins as well. I think most of what I eat is plant-based. The main thing is that I always eat a lot of greens, a lot of veggies, and then a nice protein source with some good fats.

Sabrina: They all have gotten better. I don’t have any progression of MS symptoms. All the trouble that I had with fatigue and my lack of focus – have all completely disappeared. The paresthesia is completely gone too. Never came back.

Sabrina:  I take many of them, just not all of the time. I think sometimes I get sick of it and I try to listen to my body, to see what it really needs at that point.

 

I will take supplements like omega three, grape seed extract, l-carnitine, MSM, BCAA powder, and high dose vitamin D – I had my vitamin D levels tested and they were quite low.

Sabrina: Getting rid of everything in your life that doesn’t make you happy. So anything that might cause you stress, so that could be people, jobs, school, stuff like that.

 

For me, it was very important to have a very honest look into every decision that I made, like what I studied and why, and ask questions like where was I heading and what were my goals? Is it really what I want in life? Is it really my principles, my values?

Sabrina: I started this as a coping mechanism. It was completely anonymous and I told no one about it. It was just me trying to process what was happening. Even now I try to document everything that I am doing and it is to also show progress to myself.

 

It was more like an online diary, but it grew quite fast, which was fun because I could connect with people all over the world and see how different the approaches can be and what works for whom, and so that you can learn from each other. And it’s fun for me too, because I have like five years that I can look back at and see my own progress.

 

Even now, if I have a new topic that goes through my head, I will write about it and see what other people’s experiences are with it.

 

It’s a really nice bubble because my experience with other MS patients has been that sometimes they were very mad at everything: mad at the world, mad at their bodies, and they didn’t have a very positive outlook anymore. And I didn’t want to be like that. 

 

Mariah: Before we end our conversation today…

Sabrina: I think it was very important for me to really know what’s going on. So that’s why I read a lot and I researched very different sources.

 

I made sure to question everything and to know what was really happening and how I can help it. I am responsible for my own health, and that’s something that I live by and that’s something that works really well for me.

 

I also think that fear is not good, even though it might be scary, especially for freshly diagnosed people, because there’s a lot of scary stuff you will read about online.

 

But there are many different ways, and so many approaches to treat it, and everybody is different. That’s the other thing too. There’s not one rule that works for everyone.

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