French disclaimer: Je sais, je n’ai pas écrit depuis 2 ans et en plus j’écris cet épisode en anglais. Désolé, j’ai envie que ce post puisse être lu par mes amis ici au Japon et il est un peu trop long pour le traduire en français pour le moment. J’espère que vous ne m’en voudrez pas trop!
I am walking. I walked 3 kilometers without any problems now. It feels good. You might be thinking: “3 kilometers? That’s nothing, what the heck, Bolubo? I thought you were a sporty guy!”
Well, yesterday morning I was beginning to think for few seconds that maybe I would not be able to walk again ever. These were these first few moments after you have just woken up to pain all over your body. When the smallest movement makes you wince. When you suddenly feel like you are 80 and your body is deteriorating more and more every day.
I like to think that I am usually an optimistic person. I am always trying see the good in everything that happens to me. But then there are theses few seconds sometimes. I brushed them off quickly: pain is making me feel alive. If it was not painful, I would be dead, right? So, I am alive. I feel something. This time, it is pain. And it is fine. I will be fine.
It started a week ago. Thursday morning, I woke up knowing I already had to go to the hospital to monitor my wrist problem. But I woke up with a wry neck. “It’ll heal in couple days”, I thought to myself, “It’s fine”. I went to the hospital with a friend so I could understand. The next day, my right index finger was a bit swollen. I had some trouble stepping on my left foot sometimes, but I did not think much of it at the time. I went on with my day.
The next day, Saturday morning, shit started to get real. My first step out of the bed was truly painful. My neck still hurt. My finger even more swollen. I decided to go to the hospital. I thought I might not even be able to walk there at first but after a few minutes trying to walk in my house, I figured I could try to make it. It took me about 30 minutes to go there and it was pretty late. I asked another friend living nearby if she could come with me and thankfully, before I was called after waiting an hour and a half in the waiting for my turn, she arrived to help me translate. One blood draw and a few x-rays later, the doctor gave me some painkillers and told me there is nothing he could say before the blood test results came back… a week later!
The painkillers were somewhat effective at the beginning. Walking was less painful than it had been that morning. I was supposed to stay home all week to recover and wait for the results. I still asked my boss if I could work from home and he said no problem. I stayed at home all week end despite all the plans I had.
I was not expecting how it turned. Sunday morning, my other foot started to hurt a bit at the same spot as my left foot and my left index finger also started feeling swollen. It was hard to walk but I could sit or lay down as much as possible to avoid the pain. Monday morning I felt my body was worse and worse. Both my feet and indexes were really swollen and I started to feel pain and soreness in my whole body. I had a visit at night which brighten a bit my sad recent days so I felt better. The next day, I tried to stay in bed as much as possible, I needed more and more rest everyday, but now it was hard to find sleep. The pain was starting to wake me up at night. Wednesday morning arrived with huge pain around the abductors muscles, the inside join between the thighs and the hip, on both sides. That day, I woke up at 6:35 and could not go to sleep again. Now, not only walking but just turning my leg even a millimeter could give me more pain than I had had for the past 5 days. Every time, I took some painkillers and forced myself to move. But Wednesday the pain was too strong and I thought maybe I should go to the emergency room. But how?
And that’s mainly the problem here. I am in a country where a lot of people think I can speak the language. But I cannot. Yes, I can have a normal conversation with someone. Where do I come from? What is my job? What should we order tonight? What shows am I watching recently and what do I think of them? Yes, easy questions, easy answers. But when you are in front of someone who asks you questions you don’t understand, what do you do? Sometimes I would understand the question but I cannot find the words to explain what I have. How do I say “swollen”? How do I say ligament? Heartbeat? During the past few weeks I realized the only medical thing I can say confidently in Japanese is “it hurts” (“itai desu”). Most of my friends here are not French speakers. English is not even my first language and you know how difficult it is to understand medical explanations in your own first language… now think about trying to get it in your second or third one! I already knew that medical problems were scary in Japan because I already been in the hospital here before, but this time, it felt like it was another level.
I could not focus enough to work on Wednesday because of the pain so I asked my boss for the end of the week off. A friend came to see me that evening and I tried to be as strong as I could be, I often try not to show weaknesses (damn you, patriarchy!).
Yesterday was Thursday. The pain was the worst I had experienced this week. I have had surgeries, injuries, and sprains in the past but I cannot remember experiencing this type of pain before. I think the fact that it was steadily intensifying was the worst part. Because when you realize it’s not going to heal on its own, you are thinking what is the next stage? Can I handle it? I woke up at 5h15, tried to sleep an hour more without success. I could not find a laying down position where it was not hurting. Trying to switch positions was even more painful. I stood up to take my pain killers. It took me five minutes to go to my kitchen (my apartment is not that big!). I forced myself to eat something because I knew I needed energy and watched two episodes of Rick and Morty waiting for the painkillers to set in and could go back to bed to sleep for two hours.
I could barely walk after that but it was way better than earlier. I was not sure I could wait two more days for the results. Maybe I should go to the emergency. A couple of friends came after I woke up and we actually called the hospital to know if the results arrived. Arrived, so we went to see the doctor right away and even if we waited quite a long time, he could finally tell me what I had… or that is what I thought. He was clearly seeing that my symptoms worsened quickly but he didn’t know exactly what I had so he told me to see a specialist the next morning in another hospital. But he also gave me steroid based painkillers to go through the night and the next morning.
My friends went home and when I arrived home I napped a bit before dinner and I took the steroid for the night and went to sleep right away. I woke up today jumping out of bed with my alarm clock at 7 because I wanted to be at the hospital as early as possible. I couldn’t believe it. I was so happy. I slept like a baby, I got woken up by my alarm and not the pain. I could walk without almost any difficulty. Some movements felt somewhat hard to do still but overall, it was totally night and day compared to yesterday morning. I was not dying anymore! I went to the hospital where I met my friend who came with me yesterday so he could explain everything. Way bigger hospital, lot of paperwork to do, different people to see. After an hour and a half we saw the doctor and I stayed with him fifty minutes. He explained to me all his thoughts and what he thought I had based on the blood results and the symptoms I had. He checked my body with medical ultrasounds to show me where I had arthritis on my inflammations and check a lot of spots. He also made me do more x-rays, blood tests and urine tests. I saw him again after the x-rays results came back and he gave me a beginning of a treatment.
What was the most reassuring was knowing you are with someone who knows what he was talking about. Even if you don’t yourself understand what he is saying! After a week of uncertainty, it felt so relieving to finally have a name on what I had but even more so a way to cure it. The fact that my symptoms were also mostly suppressed by the medicine was such a relieve too.
What I have is a kind of rheumatoid arthritis. There is a lot of diseases in the arthritis family and my symptoms were not really fitting one of them but several. For now, I have a treatment based on steroids, DMARDs and NSAIDs painkillers. If it’s not enough I might have to do injections but I am confident I will not need that. It should take between one and three months to totally heal. I cannot do any sports until it does not hurt anymore. I should take at least 3 to 4 weeks for that.
But right now, I am walking. I am walking back from the hospital. I am feeling great. I wanted to walk. I did not use the train at all to come back from the hospital. I will be fine.
This story is already too long. There is some subject I still want to talk more about: the fear of not understanding medical issues, the medical system in Japan, the hospitals here, pain and how this episode made me realize that my entire life was painless when comparing to tons of people. But I might write about this later.
In the end, I want to thank a lot of my friends here. I want to thank you who is reading until now. If you are interested in my condition to read my wall of text until the end, I am really thankful to have you in my life so, thank you! I also want to particularly thank all the friends who reach out to me this past week for offering help and check on my status: you know who you are and I can’t thank you all enough. Finally, thank you Inès, Brooke, Miral, Matt, Zara, Rie, Yue for being there when I needed people to hang out with and also for waiting for me in hospitals and for translating everything I could not understand. Just making yourself available like you guys did is really precious to me. You guys are the best.
I might write again to give news to update on my status!