It has been two years and nine months since I started receiving treatment for my illness, Myalgic Encephalomyelitis (a.k.a. Chronic Fatigue Syndrome[CFS] or ME/CFS), in September of 2015.
Many of my symptoms have improved, but there also are many symptoms that are the same or have gotten even worse. So I have been trying really hard to get through each day one day at a time.
I would like to write about my prognosis for ME/CFS along with my thoughts on this illness and how I’ve been dealing with my daily struggles.
Prognosis
It has been over a year since I wrote my previous blog post, but my physical condition is the same as before.
I have been feeling fatigued, had headaches and had trouble sleeping. There have been many days when I feel extremely bad regardless of how much I rest, while I feel a little bit better for unknown reasons some other days.
There are symptoms that have been relieved and stablized.
My hay fever has difinitely gotten milder. I don’t sneeze, feel chilly or have a runny nose nearly as much as I used to. Since my prime symptom of hay fever, a runny nose, has improved, I have gotten nosebleeds less often and consumed noticably fewer tissues.
Also, I do not catch colds as easily as I used to. Even if I do, I no longer get a high fever. I have become able to stop making my cold worse at a very early stage. Whenever I feel slightly cold or have a mild sore throat, I warm myself up with a hot water bottle and put on some extra clothes to keep warm. I have become able to differentiate whether it is because of a cold or if my body is just cold. I haven’t had a fever of 37.5℃(99.5F) or higher since I started receiving treatment.
Additionally, I also get upset stomachs and stomachaches much less frequently. I used to have stomach problems after breakfast almost every morning. However, since I started warming myself up before breakfast, I have been able to eat after my stomach is fully awake, and that has helped me relieve this condition to a great extent.
On the other hand, headaches and fatigue have been truly awful. I work at home for two to three hours a day every other week. I feel extremely fatigued and my head hurts unbearably on the next day of work, to the extent where I cannot even get out of bed. It usually takes a week to get back to my normal physical state. If it didn’t take so much time before I recover, or if I could recover to the extent of being healthy, I would be able to work a lot more. It has been extremely frustrating, so I really want to change this current state.
My thermoregulation has still not been functioning at all. I sweat all over my body when it is cold and I cannot get to sleep due to my feet that get burning hot. It has been extremely uncomfortable regardless of the weather or the season.
How often do I receive treament?
I warm myself up with a hot water bottle every single day. I do it at least three times a day regardless of the season. We have a kettle that’s exclusively for re-boiling the water for our hot water bottles. The hot water bottle is essential to my treatment, so I took it even when I went to Nagano to attend my cousin’s wedding in November last year. I sometimes take my hot water bottle with me even for short distance trips.
Related Post: 【やわらか湯たんぽ】を買う(ヘルメット潜水株式会社製) | Got a Hot Water Bottle
I practice the kyu treatment that Dr. Madarame instructed me to do at least once a month, or two to three times a month at most. If I push myself to practice kyu when I feel ill or tired, I will get horribly fatigued and have to stay in bed in most cases. So I practice it when I feel a little better than usual.
▼I wrote about how I receive treatment in my previous posts.
Treatment of Chronic Fatigue Syndrome Part 1, Part 2, Part3
Giving-up and hopes
In my previous post, I wrote about how much I like building models (only in Japanese). I have been a model lover for as long as I can remember, and I enjoyed modeling as much as I could on my tight budget.
In recent years, however, I have grown to be too sensitive to paints and thinners, and the smell from the chemicals surely worsens my headache. Also, I can sit up only for two to three hours a day before I feel ill and awfully tired. If I push harder, I would have to stay in bed for a few days afterward.
It has already been eight years since I have been able to enjoy modeling. I didn’t want to let my unbuilt plastic models and parts just take up space. Instead, I wanted to utilize the space for my CDs and English books. Also, I thought of using the money I would get from selling them for an iMac (computer) or an Xperia XZ1 (smartphone).
I sold the unbuilt plastic models and parts the other day. The value was not as much as I had expected, but the second-hand shop bought everything that I took in. I was happy about it…. or at least I thought I was.
To my astonishment, I found myself crying on the night I sold my models. I sold them not because I grew to hate them or got tired of them, but because I had to give up on modeling due to my deteriorating physical condition. That’s when I came to realize that it was shocking and sad.
Ever since I contracted ME/CFS, I have had countless things that I had to give up on. I have given up on events that I wanted to go to, plans with my friends, sports, travels and so on. And now I have to give up on modeling, something that I have loved since I was a kid. It felt like my hope was gone along with my models.
It was my close friend from elementary school that saved me from this depression.
He knows me and my illness well. He said: “You can keep your hope as long as you want because it won’t take up space.”
It may sound dramatic to you, but his words helped me regain my hope for the future. He made me decide to keep moving forward until the day I can restart modeling.
I still keep my airbrush and other tools for modeling. As my friend said, I will keep my hope along with them until the day I can enjoy modeling again.
Conclusion
When you have ME/CFS, you will encounter many things that you have to give up on no matter how much you love or want to do them. You will have to quit things that you would otherwise take for granted such as a job, housework and hobbies.
I had never imagined that I would get so shocked by letting go of my models because I thought I had become accustomed to giving up on things during my life with ME/CFS for 23 years.
I have come to realize once again that ME/CFS is an illness that gives you so much pain both physically and mentally. It would be ideal if I could keep trying my best to recover while being grateful to people who understand my struggles and support me. I will continue to do my best to recover.
Useful links
Lastly, I’ll put the links to the websites where there are lists of doctors specializing in chronic illnesses. (All of them are only in Japanese, though…)
青山・まだらめクリニック 自律神経免疫研究所
https://www.dr-madarame.com/
ME / CSF-info
https://mecfsinfo.net/doctors
名医を探すドクターズガイド
https://dr-guide.net/
その他、筋痛性脳脊髄炎に関する情報サイトです。
筋痛性脳脊髄炎患者会「笑顔の花びら集めたい」
https://egaonohanabira.net/
CFS支援ネットワーク
https://cfs-sprt-net.jimdofree.com/
NPO法人 筋痛性脳脊髄炎の会
https://mecfsj.wordpress.com/
