Bios foto

Shymo’s blog: the worst

06-08-19

The last couple of weeks a lot of people asked me what the worst thing is that I am going through or have gone through. For now, the worst I can think of was the recent hospitalization.

What matters to me is that during the process of losing strength, functionality and feeling in my legs, I at least got time. It is incredibly tough to go from being able to walk to becoming bound to a wheelchair, but I did get more than a year to go through the process. You get to a point where you accept it. Also the doctors call it an “incomplete paraplegia”, which could mean that someday I might be able to walk again. So what can I do about it? Keep doing my exercises and just keep going; that is what you can do. Or at least, what I will do. After some time you discover that your progress halts. From that moment on you reach a point that you can only work on your endurance. Fine; let’s do that. Let’s work on my endurance three times a week, I also enjoy it! You do have to imagine that this is a process that happened over a longer period of time.

On Monday I was still working out as usual, Wednesday I had to skip because of the pain in my stomach and back. Then, suddenly on Thursday I was in so much pain. I never screamed from pain, but that day something went horribly wrong. Back- and stomach pain, where was it coming from? What was going on? There was no other option but to get to hospital as soon as possible. I went to the hospital with my dad and Siem and when we arrived I got hospitalized and checked by the nurses almost immediately. But why is Mo having so much pain? That is what everybody was trying to figure out. At a certain point I got told it could be appendicitis or stomach ulcer, so first I thought “yes they take out my appendix and I’m good to go”, but that wasn’t the case. Many questions remained unanswered. After a lot of morphine and esketamine they were finally able to get the pain under control. Still we didn’t expect that I had to stay that long until the nurse said: “I’ll see you next week!” From that moment on, I lost it and almost EVERYTHING changed.

We got to a point where the paralysis moved up in my body. My paraplegia wasn’t limited to my waist anymore, no, it moved to above my shoulders. Believe me when I say that you have no idea what you’re going through when that happens. Your mind does not get the time to process this. Your body is ahead of your mind and then you need to adapt, it is the only thing you can do. But how should I deal with it if I was capable of doing everything at first and that turns into almost nothing?

So they did an MRI scan and result showed that all of the tumors had grown. Really; I have never been thát angry. Why, after two-and-a-half years of pushing through, fighting and never giving up could I still not have a bit of luck? Where is my bit of luck? Personally, I believe that I deserve a hundred pieces of luck already. And come on, I have to live with this. t’s not like that I can turn the feeling in my stomach or left toe on and off whenever I like. That makes me upset. Not knowing what’s going to happen, every day. That day was one of my biggest nightmares and guess what: nightmares can come true as well.

Anyway, a month and a bit has passed and some of my functions are coming back. This is good news, because the longer you lose an ability, the lower the change that you might get it back. My right arm is almost back to normal, but senses still lack in my fingers. It could be that the feelings in my fingers come back, but for now, no one knows. Also, some feeling is coming back in my torso. You could say that the new paraplegia has been reduced by half, but this is far from good. I keep discovering new things like this on a daily basis, but again, no one knows what will happen next. Currently I am getting back into a rhythm during the day and I’m sleeping quite well again, which is good! Also I’m finally able get out of the house again and take part in some activities, such as the fundraising dinner (which was very impressive!), going to the forest for a stroll, and I even went to the movies and saw the Lion King! You can imagine that it’s quite challenging for me to do these things, but for some reason the amount of fun and excitement give me the energy to do this. That is the fun part! I feel well, as far as I can be! I’m having a great time with all the beautiful people around me, it can’t get any better than that right?

Mo en Siem blogpost

Siem: “Mo is the strongest woman that I have ever met”

I’ve been Mo’s boyfriend for a year and a bit now. A year in which a lot has happened. Having a girlfriend with a severe disease can be tough, but Mo and I are still having a wonderful time. I truly enjoy it and am learning so much from Mo’s perspective of life.

Fight, never give up and always have fun is what she taught me. It is only some of many things and I apply these lessons to my own day-to-day life. I am so happy that we are together! Shymo and I have known each other since 2015, before she got sick. rom the first time we met we already had a connection and we never lost contact. I’m glad because she is my true love and I already knew that at that point. But then Mo heard that she got sick and everything changed. This event and the loss of functions in her body was not good for her self-image. “No one will like me like this”, was her thought. It became my goal to always be there for Mo. Often people ask me: “why a girl in a wheelchair?” Because I love her, no matter what. She believes so as well and together we are capable of anything!

Our daily life changes constantly. I help Mo with her daily routine: shifting and moving her, showering, shaving her legs… you name it. Together with Ilonka (her mother), Ruud (her father), Zyara (her sister) and her brothers we are a strong team that takes care of Mo. Ruud and Ilonka took me into the family this year and treat me like one of their own. I feel at home and welcome and am really grateful for this. Together we ensure that Mo’s life is as normal as possible, she deserves this. Mo is kind, beautiful and the strongest woman that I have ever met.

Laatste bestraling

Shymo’s blog: hair loss

03-08-19

I started losing my hair already; we did not see this coming. Totally unexpected and quite early. My mother and I thought it would be nice to have a hair-wash-day, but that turned out into something else. Hair kept falling from my head up to a point that it became so much that we both started crying. Just the hair on the back of my head can’t be that much right? I am confused and don’t know how to cope with this. How should I act on this? It seems I’m losing all of my hair but wouldn’t that happen much later?! What a mess.

But in general I am able to deal with it a lot better than I dared to expect. That is because since the first chemo that I had (two and half years ago) I always took into account that I could lose my hair someday and this is the third time that I received radiation treatment already. For now it is only the back of my head but everybody knows that I have a lot of hair. It was quite shocking.

05-08-19

I’m feeling happy. Today I had my last radiation treatment and what a day it was. My best friend just came back from holiday so I immediately dragged her along to the hospital. Amazing to see her again of course! I was already happy to go to the radiation treatment, purely to get it over, so imagine when your best friend joins as well! At home I had a cheeky piece of cake because this had to be celebrated. It feels good to close another chapter. Yesterday and today I improved a lot and if I keep going like this I expect to be back in the gym in about two weeks. But, we can’t move beyond the facts just yet. Three to four weeks of side effects are yet to come from the radiation treatment. There are also positive side effects from the treatment, such as getting functions in my body back, which is happening already. Today at the radiation treatment I thought it would be nice to take a picture to close this chapter, but I wanted to do this while sitting. While I was getting up to sit I thought “why is she pushing that hard?”, because someone was helping me. But that was not case: I was doing it by myself! Haha, I was in total shock but if felt great! The picture turned out good and I took my radiation mask home. So far the negative side effects of the radiation treatment are: painful esophagus, hair loss (the bald skin feels burned as well), itching neck and a very swollen face. We shall see how long it takes but in the meantime, the radiation machine cannot bully my head any longer!

Blogpost Zyara

Through the eyes of a sister

Shymo, my little sister, my friend. We would have thought that you of all people would become sick? And why you? This disease only happens to people that had a long life already, right? And how will this continue? Will my little sister always remain in a wheelchair or will you be able to walk again? These questions often go through my mind.

Mo, two and a half years ago we discovered that you are sick. It seemed so innocent but look where we are now. This is so mean and it sucks. The bond that you and I have is what all sisters should have with each other. We could do almost anything together: shopping, go out for a coffee, to the beach, festivals and parties, or sell our clothes at the vintage market; I can keep going like this for a while. I am so happy to have you as my sister. Yes, I dare to say that I cannot wish for a better sister than you!

The day that I heard you have tumor, I was in Malta. My first week out of the ten that I had to be there. My world collapsed; I wanted to go home, be there for you, join you to the hospital, watch movies together… But you told me to stay in Malta and have fun. “You went there for a reason and we can facetime every day” you said. So I stayed. You were right, but it felt weird.

I don’t say it out loud normally, but I am having a very hard time with this situation. All those setbacks every time are like being hit against the head with a frying pan. But then you, the strongest person I know, say “screw them, I am not giving up!”. And then I think “Yes, Mo does not give up! We go for it”. And that is how you drag me through all this drama.

Mo, you are the strongest person that I know. So down to earth but at the same time fully aware of what is happening and the risks that are involved. You always want to make the best out of a situation, have fun and stay positive. Because what is the added value of being sad? It won’t make you feel better. Your mindset is something that a lot of people can learn from.

Sometimes it is tough. Because I want to do stuff with and for you. But lately you are very tired and not feeling that well, which is because of the medication and treatment that you currently get. That is when I often realize that you are sicker than you actually look like. That is a compliment Mo, because even with all of this going on, you still look really good. And look at everything that you are still getting done even while you are feeling so bad. That is amazing, it really is.

The only thing that I still want to tell is that I am very proud of you, of everything that you do and how you are doing it. You are an amazing person.

I love you.

Lots of love,
Zyaar

Shymo en Oties

Shymo’s blog: fears

30-07-19

Did you know that I can smell it when they give me the radiation treatment? And I mean at the exact moment when it happens. Then they take a short break but after that I can smell it again. It is a very distinct smell, a bit magnetic maybe?

I still don’t know what day it is. What time it is. How I feel. How long it has been since I left the hospital. To me it feels like days, but the reality says something else.

Today Elsa dropped by for my physiotherapy and I could do a lot more compared to last week. That feels really good and motivates me enormously to become able to do things by myself again. As example, currently I am not able to get in my wheelchair by myself. Since I cannot do that, everything has to be done for me, things like preparing food, going to the bathroom, or even switching from laying to sitting down, but I am improving again.

Some moments can be really tough. Yesterday I had to cry when I realized that I can NOT lay or sit down comfortable, while those are the only two things that I’m currently able to do. Should I lay sideways? No, that doesn’t feel nice. My back? No. Straight up? No. It is tough not being able to get into a comfortable position, every position felt bad.

Try to imagine (which would be very hard or maybe even impossible): I was hospitalized with two legs that are not working. Drip connected to one hand and suddenly you other hand that is not responding anymore. For days you’re laying on your back in the same position. You are scared, frightened, and you feel trapped. I have screamed for my mother because I suddenly thought she left and did not realize where I was. Every day I thought I was in another room and in another bed. I never had fears, but when I came home I did not even dare to sleep in my own bed. Especially not alone.

Still I have nightmares every night and mentally that upsets me a lot. I am very happy to be home again, but I did not expect the fears to remain that long.

Happily I’m getting more and more grip and feeling back in my body, my ribs start to feel like ribs again instead of plastic or “flubber”.

What is also annoying is that I’m not tasting anything. We are not sure if it is because of the medication or radiation. Every day I have to figure out again what I do taste that day, to me it feels very annoying towards the rest of the family. One day I taste everything inside my tortilla, while the other day I can only taste the flavor of a “kroket”.

Every day is a new battle, every day I feel mentally much stronger. But I’m not there yet. We will get there; step by step, but it will take a very long time.