Fitness & Wellness, Life, Thoughts, 日本語

Living with an Autoimmune Disease ・自己免疫疾患

Summary: Writing my thoughts on having a debilitating flare up. I’ve been unable to function as a normal being for the past three days. The English entry is below the Japanese one.

まずは、日本語で書いた部分:

起き始めるのは知っている。野球に打てない変化球ピッチのように切っ掛けを感じれる。その節にある痛み。その胸と腕にある赤い湿疹。その無気力。全てはすぐ出てしまっていく自己免疫疾患について兆候なのだ。アーユルヴィーダ薬、ベジタリアン食、ぐっすり休むことで自己免疫疾患の強烈をコントロールできるようになるはず。だが、ときどき私は古い木みたいに具合が崩れて、落ちて、全焼してしまう。

誰でも、自己免疫疾患が出たときに、自分の努力は差し支えるに決まっている。例えば、家族と旅行を準備中なのに、兆候がパ!と出たら、全ては無意味になってしまう。

踊り者に対して、その時は好きなダンスから妨げられている。振付をやるのは拷問のようになってしまう。思考は遅くなったり、神経系は砕けてきたりしている。密に泳いでいるような感じがある。

そういう状態に、自分のことが嫌い。限界まで動かせることで自分のストレスが高まって、兆候はもっと悪くなってくる。でも、本当に踊りたいので、自己免疫疾患と言えば、きっと悪夢だ。この痛みは表現できないほどだ。身体は心から欠かれて、離れられそうだ。

“Push through it.”「何とか頑張って」

“Deal with it.”「我慢しなさい」

“Don’t make excuses.”「言い訳を言わないで」

残念だが、自己免疫疾患の兆候は普通の筋肉痛みと同じじゃないんだ。身体を無理にすると、筋肉じゃなくて、神経がピリピリし始めることだ。全体の筋は染みる。指策をゆれて、節が詰まって、背中が固くなる。その以外、起きているときには、話せる能力もなくなってしまう。だから、痛みや混乱などのせいでホラーの仮面みたいな顔をしている。

自己免疫疾患という病気は軽く話題じゃない。最初の兆候を経験した以来、弊害で適当な健康が戻らない。

人口が自己免疫疾患に関してもっと意識があった方がいいと望んでいる。でも、多くの人はこの病気が分からないかもしれない。

**

I know it’s going to happen. I can feel the wind up as if I was at pitching getting ready to throw a curve ball I can’t hit. The faint ache in my joints, the red rashes breaking out on my chest and arms, the apathy that creeps in are all signals to the impeding flare up of an autoimmune disease. Though I can often control the severity through natural and Ayurvedic medicine practices, eating anti-inflammatory foods, and getting plenty of rest, there are some days when my entire physical self crumbles, crashes and burns.

For anyone, this can impede a month of effort. You could be preparing for a family vacation, be super excited, and then a flare up strikes and renders everything meaningless.

For a dancer, this means being physically disabled from doing what you love. Moving through choreography becomes torture. Every joint, every inch of your skin is resisting the movement. Your mind is sluggish, your nervous system is dampened, and suddenly it’s like swimming through molasses.

I hate myself when this happens. I also know that pushing myself to perform only increases the stress, amplifying the effects of the autoimmune disease. But when I want to do nothing more than dance, a flare-up is a nightmare. The pain is indescribable. My mind and body connection feels like it’s getting shredded into a million pieces.

“Push through it.”「何とか頑張って」

“Deal with it.”「我慢しなさい」

“Don’t make excuses.”「言い訳を言わないで」

Unfortunately, pushing through a flare-up is not like pushing through muscle pain. If I push energy through one affected region, another begins to ache. I get twinges that radiate through every sinew; and my fingertips tremble, my joints lock, and my back stiffens. What’s worse is that, at the moment when this is happening, I lose even my ability to speak. And so my faces distorts into a picture of pain and uncertainty.

Autoimmune diseases are not something to be taken lightly. Ever since experiencing a full blown attack from my own immune system, my body has been affected in terrible ways:

Anxiety
Depression
Receding gums and hypersensitive teeth
Heat and humidity sensitivity
Loss of appetite coupled with severe weight loss
Arthritis
Osteoporosis
Muscle atrophy – especially in my lower back, which possibly contributed to my whacky scoliosis
Infertility
Sensitive skin, coupled with butterfly rash on my chest, back, arms
Loss of skin pigmentation
Dry eyes
Nose bleeds
Hair loss
Light sensitivity
Insomnia
Neuropathy and periods of numbness

I wish more people understood the implications of autoimmune diseases, but most people don’t even know how many actual disorders there are. Heck, most people don’t even understand how big a deal it is to be diagnosed with an autoimmune disease.

How many of these do you know?

  1. Alopecia Areata
  2. Antiphospholipid antibody syndrome (aPL)
  3. Autoimmune hepatitis
  4. Celiac disease
  5. Diabetes type 1
  6. Graves’ disease
  7. Guillain-Barre syndrome
  8. Hashimoto’s disease
  9. Haemolytic anaemia
  10. Idiopathic thrombocytopenic purpura (ITP)
  11. Inflammatory bowel disease (IBD)
  12. Inflammatory myopathies
  13. Polymyositis
  14. Dermatomyositis
  15. Multiple Sclerosis
  16. Myasthenia gravis (MG)
  17. Primary biliary cirrhosis
  18. Psoriasis
  19. Rheumatoid Arthritis
  20. Scleroderma
  21. Sjogren’s syndrome
  22. Systemic lupus erythematosus (SLE)
  23. Vitiligo

Listed is credited to: http://www.womenshealth.gov/publications/our-publications/fact-sheet/autoimmune-diseases.html

Though fibromyalgia and chronic fatigue syndrome (CFS) are not considered autoimmune diseases, they do involve similar symptoms. And trust me, I know those aren’t fun either.

You can fight back against these attacks on your body a multitude of ways, but there’s no true cure for autoimmune diseases. Sometimes they go into remission. Most of the time, an autoimmune disorder is more like a volcano everyone thinks has gone dormant.

Then BOOM.

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