What is mental strength?

“Even now, as broken as you may feel, you are still so strong. There’s something to be said for how you hold yourself together and keep moving, even though you feel like shattering. Don’t stop. This is your healing. It doesn’t have to be pretty or graceful. You just have to keep going.” – Maxwell Diawuoh

I am very fascinated by anatomy and if I didn’t have FA I would actually consider becoming a cardio surgeon. My two favorite organs are the heart and the brain, even though I have a love/hate relationship with the brain. I love it because its so interesting that literally everything we do is because of the brain. How we react, how we see the world, how we think, how we treat ourselves and others…but at the same time I hate the brain because of all the pain it can cause.

According to Wikipedia “Psychology is the science of mind and behavior. Psychology includes the study of conscious and unconscious phenomena, as well as feeling and thought. It is an academic discipline of immense scope.”

We unfortunately cant change the physical flaws of the brain that causes pain (yet). But we can work on our mental strength. Not long ago I didn’t really know what mental strength was. When I think about strength I immediately think about physical strength, but Cambridge Dictionary defines strength as “the ability to do things that need a lot of physical or mental effort.”

But how can we train our mental strength? Its not like we can go to the gym or go for a bike ride and come back mentally strong. If you put it into perspective it is kind of like that. Just like physical strength, mental strength is built over time. To see physical gains we must also give up unhealthy habits, such as eating junk food, and for mental gains, give up unhealthy habits. We are all able to become mentally stronger, the key is to keep practicing and exercising your mental muscles.

There is 3 kinds of destructing beliefs and bad mental habits:

1.Unhealthy belifs about ourselves. I dont know about you but I have found myself scrolling trough social media and felt really bad about myself. Feeling bad about how I look and how I do things because everyone seems to do it so much better than me. And feeling sorry for ourselves. Everyone can find a reason to feel sorry for themself but its so easy to feel sorry for yourself when you have a chronic disease. You’re not going to become better anytime soon. Especially if you have a progressive disease, you’re gonna get worse over time.Thinking `why do these thing have to happen to me?` and `I shouldn’t have to deal with this` makes us keep you focus on the problem.

2.Unhealthy beliefs about others. We think that other people can control us and it makes us give away our power. Saying `I have to work late`, there might be consequences if you don’t work late but you don’t HAVE TO do it. Or when you say `my mother in law drives me crazy` you give away your power. maybe she’s not the nicest person on earth but its up to you how you respond to her because you’re in control.

3.Unhealthy beliefs about the world. We belive that the world owes us something. I have thought for many years that if I work hard enough I deserve success, but thinking that will lead to disappointment. Dont get me wrong, hard work is much more effective than doing absolutely nothing. But you cant expect success or some kind of reward.

And just like physical training, mental training takes effort. Our minds get stuck in negatives. Theres actually a neurological explanation for this. It has to do with the part of the brain called the amygdala, which functions as an alarm and is constantly on the look out for danger, fear and bad news. We’re always looking for negatives that we can fix. Thats how our brain is built, so being positive and showing respect does take effort.

So what is the point in thinking positive if our negativity protects us from danger, fear and bad news? And if thinking positive takes effort then why bother? Well, of course you cant be positive all the time, nobody can. But have you ever thought that your negative thinking can be the source of your tired body or prolonged aches? If you have FA, like me, its going to take more than just positivity to fix our tired body. But negativity can be a big reason to why you’re struggling with your physical health.

In fact, doctors have found that people with high levels of negativity are more likely to suffer from degenerative brain diseases, cardiovascular problems, digestive issues, and recover from sickness much slower than those with a positive mindset.

So what does mental strength mean? Personally, I think it means to be kind to yourself and others. Not thinking too much of yourself but at the same time not thinking too little of yourself. Showing sympathy and showing respect to yourself and others. Knowing your self worth and knowing other peoples worth. Also, your inner dialogue is not only the longest dialogue you’re going to have but it’s the most important dialogue. The way you talk to yourself has a lot to say about how you treat yourself and others.

The goal is to grow so strong on the inside that nothing on the outside can affect your inner wellness without your conscious permission | motivational quotes | encouragement quotes | mentality quotes | wisdom quotes | words of wisdom | goal setting | quotes to live by | worthy quotes | consistency quotes

Interview with Hasitha Illa

Introduction 

Hi, my name is Hasitha and I am a FA’er in India. I was diagnosed with Friedreich’s Ataxia when I was 10. This diagnosis took a mental toll which lasted all of my childhood but, it shaped me into a beautiful young adult. FA is a genetic disorder which basically affects our balance, coordination and movement. To know more about it, I repeatedly write in my blog, Lifewithhasi.com. 

I’m a graduate in Biotechnology and looking to do my Phd in neuroscience or genetics even. After the pandemic, all universities have been shut and I thought of following my interests during these times. My passion for writing led me to start a blog at Lifewithhasi.com and courageous personality made me start a youtube! I use both of these platorms to raise awareness not only about FA, but, disability in general! Youtube link: https://www.youtube.com/channel/UC_uhC5nYOxYQefcIwZpfxeg 

What is the best thing about living in your country? 

The best thing about living in India is definitely the variety of food one can get here. You can get literally everything here and you can choose to live cheaply or as royalty. You can live in India with a very minimum income and that’s why my country stands out from the rest. 

How do people in your country treat you as a disabled person? 

As a wheelchair user living in India, I feel that more than the disease itself, the problem lies with the environment that surrounds us and the society we live with. I am pretty confident and experienced now but, initially I had a tough time dealing with my inner battles as well as the nosy Indians. In India, people often have their own notions about people with disabilities. Apart from their constant, sympathetic stares, they believe that disabled individuals have zero potential. They often discriminate us and some even rudely deny us to enter their place! I understand that the human brain is constantly curious. But, it is not polite for a random 

stranger to come up to me and ask me, “What’s wrong?” If I would get a dollar every time a person questioned me then, I’d be a millionaire! 

Some bad incidents you faced? 

It is not at all accessible in India. As a girl who loves to travel ; I’m disappointed by most of the accommodations and I would end up being carried anywhere that I need to go. The wheelchair makes me independent but, the environment is making me more dependent on my fellow Indians. Some places are accessible but, they are mostly expensive places like 5 star hotels, malls and airports. Man, its expensive to be disabled! 

Apart from that, the accessible washrooms tend to not work or be occupied by abled-bodies which is so insensitive! 

How are your support groups/medical facility? 

What makes me envious about the Foreign Countries is that they made a community for FA, there are activities they do and together they spread awareness. There is nothing of that sort in India. All the people that I’ve met are online and some I became close enough to meet. I really wish to meet the community when I do travel to any of the countries. 

Whats three things that being disabled has taught you? 

Being disabled has taught me many things. It taught me how to be empathetic, how to face my fears and be bold with your feelings. Overall, it taught me how to be a leader! 

Why did you start a blog? 

Despite conquering over my disability and accepting who I am; I faced an abundant amount of hurdles which affected my mental health. The issues was mainly from people due to the lack of awareness and also with accessibily, which basically means not being able to go to a building because it has steps and no ramps or elevator. The issues with these people can leave you helpless or surround you with 

negativity. For example, lectures looked at my wheelchair and concluded that I was incapable of a degree. Just the amount of stares that I get when I step out could be very stressful. So, I decided that there is a lot of awareness that needs to be spread, especially in India. Because its not only me but, 1000’s of others as well. I started this as Covid hit. As everything is virtual ; I’ve started spreading awarenesss on my blogs as well as Youtube! Blog Link: https://www.lifewithhasi.com/ 

What motivates you? 

My mission towards making a more inclusive and accessible India motivates me.

Thank you for this opportunity Ilva and you guys can always connect with me on Instagram: https://www.instagram.com/lifewithhasi/

FALL/WINTER 2020/21

What you wear is how you present yourself to the world. Especially today, when human contacts are so quick. Fashion is instant language. – Miuccia Prada

Dolce & Gabbana

Gabbana said “It’s very Italian, like the menswear,” and “It’s a tribute through our eyes to tradition.” as a preview of the collection. Dolce & Gabbana is all about Italian tradition but this collection had a sweeter affect to it. Its a collection filled with big coats, knits and slippers. Yes, you read that correctly. SLIPPERS. The designers sent out their designs to home knitters. Dolce said, “It’s not like cutting fabric with scissors.” He continued: “This was a beautiful experiment for the whole company, these knitters were teaching us.”

I really liked this soft and cozy collection. Its very wearable pieces and even though its very casual and cozy you can still see the luxe. Dolce & Gabbana are always keeping il sarto and la sarta busy; the difference this season was how boyish the tailoring was. And while models were walking they were playing Amy Winehouse. My favorite looks:

 

Dior

Since arriving at Christian Dior, Maria Grazia Chiuri (Chiuri is currently the creative director for Dior) has used her runways to amplify feminist discourse. A lot of the inspiration comes from Marias feminist awakening in the 1970s in Rome. At a preview she said this collection started with snapshots of herself as a teenager with her seamstress mom. “It’s a very personal visual diary,” Chiuri explained. “The ’70s gave me the attitude I have.” The season’s message tee read, “I Say I,” a phrase lifted from the Italian critic and activist Carla Lonzi that is more or less the 1970s equivalent of the millennial “you do you.”

There is a lot of different colors and fabrics in this collection. And you can clearly see the 70s inspiration. A lot, if not all looks are not over the top but not boring which makes them very wearable. The styling, head scarfs and fishnet socks, is not really my style but I actually like it here. It gives the looks that little extra. My favorite looks:

 

Saint Laurent

Ever since his arrival at Saint Laurent, Anthony Vaccarello (creative director) has endorsed a woman’s right to express her own physicality, and ergo her sexuality, any way she wants. Backstage post-show, Vaccarello readily acknowledged the current #MeToo climate, and spoke of celebrating a woman’s power and her own sense of self. Vaccarello chose to riff on the kind of tight yet lush sensuality that Yves Saint Laurent was such a master of.

I love this collection! The colors are so beautiful and the colors are very YSL, if you look at their makeup you can find a lot of these colors. The style is a mix of rock and elegance, in my opinion, which I like and is totally up my ally. The styling was pretty simple which was fitting so the clothes could shine and speak for themself. My favorite looks:

 

Fendi

Silvia Venturini Fendi’s celebration of femininity knew no size, age or ethnicity barrier. Venturini Fendi, as a preview, described her vision of a woman who is “independent, free and strong.” She continued with saying: “In a moment where we talk more about feminism than femininity, it made me want to analyze the concept of the feminine wardrobe through the decades. My wish for the new generations is to be perceived as strong while keeping the codes of femininity.”

There were over 50 looks and only 3 models wasn’t 85 pounds and under, as far as I could tell. I am a little bit disappointed because of that but its better than nothing. However, it was something that really stood out from the other fashion shows and it got a lot of attention because of the “plus sized” models. When it comes to the clothes Fendi had some really beautiful dresses but nothing was outstanding for me. The colors of this collection felt more like spring than fall/winter. My favorite looks:

 

Oscar de la Renta

The 9 p.m. time slot was apparently chosen with intention: Kim and Garcia wanted to do “a party collection.” They referenced photos of Truman Capote’s famous 1966 Black and White Ball for Katharine Graham as inspiration. De la Renta is known for his beautiful evening gowns and extra looks. And this collection was really all about cocktail and evening wear.

I loved this collection. Its so glamours and have some toned down pieces that are very wearable. The color palette is very natural and the luxe is shown from the different fabrics. My favorite looks:

 

Chanel

The set for Chanel’s Fall 2020 show comprised of simple, undulating benches in black and white. Models emerged from the middle, sometimes in groups of two or three, casually strolling through the scene. Karl Lagerfield always had ”over the top” runaways in Grand Palais, one year the models walked around a “real” spaceship! The collection was inspired by Gabrielle “coco” Chanel’s riding horse, Romantica, the movie “Les Biches” by Chabrol and a photo of Lagerfeld wearing a striped suit and riding boots.

Virginie Viard worked very close with Lagerfeld for years but this is her first collection on her own. To be honest I’m a little disappointed. First thing that is a no go for me is snap pants. Snap pants belong in street wear, not in French couture. Second thing; the boots. I do understand that the collection is inspired by riding clothes but what annoys me are the colors. I have learned, from French fashion, to never mix black and brown. But the natural color palette with a pop of color is good and the simple pieces with that little extra is there. Chanel is the most expensive fashion brand on the market but I don’t think this collection lived up to that. My favorite looks:

 

Sick at Heart

I am in a few different FA groups on Facebook and I came in contact with Yesenia, a 23 year old women with FA from USA. She is really interested in poetry and has a published poetry book. She let me share one of her poems called Sick at Heart.

FA is all that I am anymore

All I have to offer people is a big ball of symptoms

I am as burdening as a nonstop war

My life is a sore, truthfully I take everything with hurt on the side it’s outrageous

I’m truly empathetic

FA also makes me less “useful” like a imitation of a drunk

With awareness of a hawk

I’m learning to accept my limitations but I’m struggling with accepting the reality of my limited life and brutal future 16 years later and the only thing that’s changed is my emotional tumor

It’s so easy to feel like a bad friend for needing more help than others

Its as if my reality was abruptly full of highly sensitive ulcers

No one teaches you how to grieve the life you should have had

Friedreichs ataxia defines me

It’s literally all over my DNA

It makes me sick at heart.

-Yesenia Ramos

 

You are not alone

‘Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; it’s our greatest measure of courage.’ – Brene Brown

I’ve always thought showing that you’re struggling is a sign of weakness. Crying in front of people shows weakness. False. This is very stereotypical and causes a lot of harm. “Boys don’t cry,” “girls are too emotional,” “it’s weak to show your emotions.” Crying or feeling your emotions is definitely not a sign of weakness. On the contrary, it’s even been said that you have to be strong to cry.

Crying is the body’s way to not only reduce emotional stress, but also process it. Think of emotions as an invisible force moving through the body. When emotions are held back, such as swallowing or holding back tears, the emotional energy gets congested in the body. Rather than having that flow of emotional force circulating and completing its cycle, it gets stopped up.

Most people (including me) feels uncomfortable talking about it because it’s so personal. But the reason I started this blog was because when I struggled I tried to find a person with FA talking about depression. I couldn’t find a single person with FA talking about this. Of course, there’s tons of people talking about depression on the internet. It’s a bit different when you struggle with FA at the same time as depression. That loneliness was so incredibly unbearable. Not only do I have a rare disease which makes you feel very alone. At one point I was the only person with FA in south Norway. I also have depression. Loneliness and depression goes hand in hand. Being alone doesn’t automatically mean that you are depressed. As loneliness increases, symptoms of depression increases.

I have had a lot of moments where I thought I hit rock bottom. But I can say without a doubt that the start of 2018 I hit rock bottom. I was in my last semester of high school and I didn’t have a plan for the fall. I couldn’t get imukin for 4 months. When I get stressed I tend to hide from everything. Stress, exhaustion, loneliness. I struggled a long time with this but I never called myself depressed because I didn’t know what it meant. As far as I can remember we didn’t learn anything about mental health at school.

I came to a point where I just felt completely numb. Like everything had lost it’s purpose. My mind went completely blank, like everything from the past had disappeared and been erased, the future wasn’t there like it was unimaginable. Time had stopped. I didn’t find joy in anything. Music, food, art, fashion, school..I just wanted to sleep and be alone and disappear in a black hole. So what was the point if I had no joy? If there was no future? I was self harming, both mentally and physically, as a way to cope with this feeling. And I became suicidal. I think one of the most painful and indescribable things about depression is wanting to die but being afraid of death.

After a while I started thinking “I want to see my siblings grow up.” “I want to find the love of my life and get married.” and most important “I want to get cured for FA.” I want to know how it feels like to not have FA and I want to experience gene therapy. So I started reading and asking my mom to fill me in on everything about gene therapy. The more I found out I thought “I can wait. I can keep fighting because it’s not a very long wait. Only a few years.” So I decided to continue. Some people find God, I found medicine.

Sometimes I have episodes where I get so impatient. Don’t get me wrong I’m impatient about this 24/7 but when I have these episodes where I get so impatient and I feel like I have so much energy and my thoughts go 100 km/t. I don’t know what to do, like physically and mentally I don’t know what to do. I feel like the squirrel from ‘over the hedge’ because I have so much energy! Most likely I get depressed the day after because I decided to keep living for something that doesn’t exist and that reality hits hard.

When I tell anyone that I’m sick of waiting for gene therapy the response I always get is “live your life now. Whatever you plan on doing when you get gene therapy you can do now!” IT WILL NOT BE THE SAME! For example I plan on traveling to Paris when I am cured. Of course I can travel to Paris now but I won’t be able to walk in the streets with heels. When I say my goal is to walk in high heels people always say “you’re already so tall!” You know what? Yes, I am 175cm and yes, it will probably be painful to walk all over Paris in high heels. And I want to go to the 3rd floor in the Eiffel tower (you can’t go up there if you’re in a wheelchair) and I am afraid of heights. I also want to go skydiving when I’m cured. I want to do these things when I’m cured so I can feel my freedom. And I want to do scary things without my body spasming so much that I’m in pain and get heart fibrillation. I want to walk to a French bakery and eat macrons and petite gâteau without taking an insulin shot. I want to be able to play with my own kids, dance and sing to Disney movies with them. I want to be able to dance at my wedding. I want to run a marathon simply because I can. And I want to wake up everyday without wanting to go back to sleep because I know when I start my day I feel fatigue in my entire body.

I try to live my life as much as I can but it’s almost like I lost a part of myself. Im just trying to do my best with the situation.

If you have FA and struggle with depression its easy to feel like you’re alone about this. After getting more involved in the FA community I have talked to a lot of people who say they struggle with depression so I can promise you for sure that you’re not alone.

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New decade

‘If you’re brave enough to say goodbye, life will reward you with a new hello.’ – Paulo Coehlo

It’s pretty cool that 2020 will be the 4th decade that I experience, and I’m only 20 years old. I have experienced a lot in this decade. It was a lot of happy tears and a lot of not so happy tears. I think one of the most important things I learned this entire decade is there’s nothing wrong with being who you are. I have learned that when people confront you about your flaws they are most likely really insecure about their own flaws.

I’m happy that this decade hasn’t been all beautiful and perfect because it has shown me how strong I am. First of all, I had a scoliosis surgery and I learned how to walk again. I learned how to give myself a shot. I got diabetes when I was 17 years old so I have to take 2+ shots everyday. I was taken to the ER because of a heart fibrillation. I’ve tried a lot of new medications, some worked and some didn’t. The last few years I struggled a lot with mental health. All of this has made me stronger.

I have also experienced a lot of amazing things this decade. I have traveled to Iceland, Denmark, Germany, Poland and 3 times to Paris. If you know a little bit about me you know I LOVE Paris. Paris is the fashion capital of the world, it’s where my absolute favorite designer is from (Chanel), most people are so incredibly nice and polite, the food, the architecture, the language and so many other things.

And I’ve gotten a lot of new family members this decade. Some related by blood and some not but I love them all equally as much. I don’t want to insert photos of them so they can keep their privacy. But I can show pictures of two very new family members. The cat is named Finn and was a birthday present for my 18th birthday. The dog is named Pia and is technically not my dog. My mom got her when I moved from home. But she is a family dog.

As I said, I moved from home this year. Six hours from home so it is a big change. I also got assistants for the first time this year. And I started going to university this year so there’s been a lot of changes this year. Change is hard but it’s necessary for moving forward.

And I got 3 tattoos this decade. I love them because they all have meanings. My back tattoo covers my scoliosis surgery scar and stands for patience. And is a reminder that things can happen differently than what I planned. My Hurricane tattoo is inspired of a song called ‘hurricane’ by Halsey.  The overall meaning is that I do not belong to anybody but myself. My panther is probably the one with the least meaning. I got it because I absolutely love what panthers stands for, creativity, leadership, motherhood and sensuality. Also I love cats.

I don’t really like new years resolutions. But my new years resolution is to have more confidence and stop doubting myself. The goal is to have as much confidence as Rihanna..but you gotta start somewhere. So I hope all of you have a great new years and a fantastic new decade!

I think this song is a mindset we should all have going into a new decade.

20 things Ive learned at 20

On september 12 I turned 20 years old. I have mixed feelings about til because Im entering my second decade with FA, but at the same time it is the decade that there will come a cure. I have seen people do this on YouTube and I thought it would be fun to write. Ive experienced a lot in these 20 years, but I am only 20 and I have a lot to learn. These are things Ive learned or in the process of learning.

1. Love yourself first. This is something I live by. It’s important to remember that loving yourself doesn’t mean you have to be superficial or cocky. Taking care of yourself, buy flowers for yourself, go do that thing you’ve always wanted to do. To quote Rupaul: if you can’t love yourself, how the hell are you gonna love somebody else? Love your body because you don’t look like her! Love your mind because you don’t think like them! Love yourself because you are you. Trying to be someone else is a waste of who you are.

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2. Be you. This goes hand in hand with loving yourself. To quote  Coco Chanel: beauty begins the moment you start being yourself.

3. Stop apologizing. Of course you have to be polite! But stop apologizing for your feelings, your thoughts, your opinions, your choices etc. because they are yours! All of this is a part of making you who you are so don’t apologize for who you are! Stop apologizing for how you do your hair, how you dress, how you laugh, how you smile. You have to spend the rest of your life with yourself so start accepting all your weird quirks, your awkwardness, your everything. Because life gets a little easier when you’re being yourself.

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4. Life is now. Life is what happens when your busy making other plans. So just take one day at the time and don’t stress about the future.

5. Never look back. You can’t change the past so don’t stress about the mistakes you have made. Learn from them and move on.

6. Everything is temporary. So the events you’re anxious about or the exam you’re  stressing about, it’s just temporary. If you fail your exam, it’s not the end of your life. Life goes on.

7. Don’t care what other people think about you. If you think about it, your just 1 in 7 billion+ people on earth. The earth is 1 in eight planets in the solar system. Our solar system is 1 in tens of billions, maybe even 100 billion, different solar systems. So what’s gonna happen if you do something people disagree with? If you wear that outfit you have that you love but never dear to wear because you’re afraid of what others will think? Of course there are people who judge and are mean, but you can’t change them. But you can change the way you think about it. If someone looks at you funny, what’s gonna happen? Absolutely nothing.

8. Never stop dreaming. Maybe it’s because I watched to much Disney when I grew up. I have always had a lively imagination. Dreaming is like a break from real life.

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9. You’re allowed to have a bad day. Everyone has bad days. Maybe some people are better at hiding them, but we all have them.

10. Do your best. Doing your best is more than enough. I forget this a lot of times because I am a perfectionist. It doesn’t mean that you should work to the point of a mental breakdown, it means that what you can do is good enough. And if things don’t work out exactly the way you wanted, things will always work out some how.

11. You have to do it yourself. Of course you’re allowed to ask for help but you can’t relay on others to get what you want.

12. Self-irony is important. Not taking yourself too seriously is important. Having a disease that a lot of people feel uncomfortable asking about, self irony is almost like an icebreaker. Showing that I don’t take myself too seriously and that I’m comfortable talking about it makes it easier to interact with new people.

13. Mental health is just as important as physical health.

14. Courage doesn’t mean you don’t get afraid, it means you don’t let fear stop you. Fear limits us to achieve what we want. Of course, if you’re in a situation that logically is gonna end bad then it’s ok to take a few steps back. But don’t let fear be in charge of your choices.

15. Fashion and makeup is a way of expressing yourself, introducing yourself to strangers.

16. As an adult you should aspire to be the person you needed as a kid.

17. Being stubborn doesn’t have to be a bad thing. The definiton of stubborn is “having or showing dogged determination not to change one’s attitude or position on something, especially in spite of good arguments or reasons to do so.” Being stubborn can mean that you’re strong minded. Ive been told that I am really stubborn because I know what I want and how I want it. I work for what I want, but I have gotten more flexible with how I get there.

18. Being kind makes you beautiful. One of the best feelings ever is being kind to others.

19. You’re allowed to be who you are. No matter gender, sexuality, beliefs. No matter if you’re disabled. No matter what language you speak. You’re allowed to be who you are.

20. The storm will pass. Im in a great storm right now. But I know that this storm, just like the other storms I have experienced, will pass. And the storms I’ve been through have made me wiser. “The greater your storm the brighter your rainbow.”

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29 weeks with Etravirine

Be careful not to see failure as a “sign” that you’re on the wrong path. Failure is nothing more than a test of how badly you want something. So maybe you need to try something different or maybe you need to try something better, but always try again. – Sam Brown

Ive used Etravirine for 29 weeks now.

When I started, I had a lot of improvements. It was working so well that I stopped taking Imukin. After a few weeks I started taking Imukin again, not because Etravirine didn’t work but because I had to change heart medication.

In week 11-12 I noticed the improvements started to weaken a bit. But I didn’t think much of it because maybe I just had a couple of bad days. Now I can say for sure that I don’t have the same effect of Etravirine as I did in the start.

The thing that we have to remember is that our bodies are different. No matter if we have the same disease, our bodies will react to medications differently.

I notice a lot of people share their positive experience with Etravirine which I great! But I have also noticed a lot of people feel angry, disappointed and ashamed if they don’t have the positive effects that “everyone” else has. And I totally understand. It is frustrating when someone with the exact same disease has better effects than you.

It is frustrating because we want Etravirine to work so bad. The expectations get really high when people are only sharing improvements. If the improvements stop after a while or if you don’t have any improvements at all, there is nothing to be ashamed of because you’re not alone.

Before anyone think Im against Etravirine, Im not. Etravirine might not work really well on me, it might work really well on others with FA. I have at least tried Etravirine and now I know its not the most suitable medication for me. I have tried a bunch of different medications and have found that Imukin works best for me. But I am still taking Etravirine because I am curious if somethings happens.

To quote Pink:

Where there is desire, there is gonna be a flame
Where there is a flame, someone’s bound to get burned
But just because it burns, doesn’t mean you’re gonna die
You gotta get up and try, and try, and try.

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Mental Health Awareness Month

 

“Let`s make mental health a priority in 2019. That means if you need to take more brakes, seek assistance, cut out toxicity, read more books, meditate or develop new self-care habits, you do those things! Once you take care of your mind, everything else will feel right.” – Vex King

May is mental health awareness month. Some people might not understand what that means. Most people have some sort of mental health issue. And having a physical disease you can look at someone and wonder how its possible to live a dream life. Or what its like to dance around on rose petals like nothings wrong. Truth is, that person might be good, almost to good, at hideing their emotions and feelings. But if you decide to hide it, to push everything into a box in your head it might feel great but after a while that box will be stuffed so much its gonna explode.

My point is, we shouldn’t feel like we can’t talk about what is happening in our head. And  its really easy to think you’re alone about your thoughts, especially because of todays social media.

I am diagnosed with depression. And Ive learned that happiness comes in waves. But people with other mental health issues might not get those “breaks”. Imagine being alone  in a room with nothing but yourself. Not only would that be torture in itself, I have claustrophobia so that’s not a good combination. And after my experiences I am serious when I say MENTAL HEALTH IS JUST AS IMPORTANT AS PHYSICAL HEALTH.

Im not saying you should be talking about your mentality to everyone like nothing. Because it is hard to talk about. It takes courage to talk about this. But talking about it with someone you’re comfortable with feels like you’re not alone.

So we have to stop be uncomfortable about this topic. There might be a person who feels comfortable talking to you about this. And the point is not that you’re suppose to understand, the point is to just be there for them and show them support.

Watching youtube videos of people struggle with the same thing as me makes me feel less alone. The video doesn’t necessarily have to be about the struggle.

I feel like I can’t speak directly about other mental health issues because I haven’t experienced it. But I would like to learn more about it.

These are videos about different mental health issues. And each video is a collection on different peoples experience. And I have watched the video about depression a few times in the past cause it made me feel less alone because the video is true to what depression feels like.

(There are a lot of other mental health issues besides these videos!)

And one more thing, you can’t think your mental health issue away. Just like with FA, I can’t think FA away or exercise it away. Its just there.

8 weeks with Etravirine

“Nobody can save you but yourself and you’re worth saving. Its a war not easily won but if anything is worth winning, this is it.” – Charles Bukowski

First of all, I stopped taking Imukin. A sentence I didn’t think I would say before I got gene therapy. Yes, using Imukin for 4 years included a lot of shots (three times a week to be exact) and side effects (headaches, fever and body feeling very heavy). But I would NEVER have given it up because it basically helped me feel more human. I don’t remember the progress I could feel at first, but if I didn’t take Imukin for a week I felt so heavy, tired and it was very difficult to do every move slightly controlled.

But I stopped taking Imukin because of Etravirine. Not only is Etravirine helping me just as much as Imukin, I have a lot more positive progress and none of the side effects I got from Imukin. I listed the first progress I noticed with Etravirine and I still have better blood circulation, better hearing, better speech, I feel more awake, I can move my feet and toes and I have better balance when I sit without back support. And my movements are still a lot smoother. I have noticed that I need less insulin trough out the day, but I still take my daily dose of insulin.

Any new improvements? Yes. I have a lot more contact with my legs and feet, my legs and feet have better nerve signals. I am a lot more stable when I stand. I have a lot less of the little FA movements. And I have more energy to get involved in a conversation, I can show much more passion and personality in conversations.

In my last blog post about Etravirine I said that its not an “on” switch and all of a sudden you can walk. You have to train up your body (muscles, nerves) and you have to train up your brain (cerebellum which is the part of the brain controlling balance, coordination and fine muscle control.)

I started going to my physiotherapist three times a week. Some tasks are hard and tiring and some tasks are not tiring but I need to concentrate a lot cause my brain isn’t used to certain movements. Its like dancing, at first you can’t dance cause your cerebellum don’t know how to. But the more you practice the better you will get.

Side note: The FXN gene is located in the cerebellum.

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