However, by remaining positive and as accepting as possible, I have most likely left space for several unintended consequences, including but not limited to:
- Being misunderstood by others in my life -- "What's the big deal? You don't seem to mind that this is happening to you."
- Short cutting my own grief -- "It is okay, I am okay. I will be okay." But sometimes I really am not okay.
- Potentially not getting the care and support I need from others -- "She seems so capable. She will let me know when she needs help, if ever."
This post is dedicated to the fact that I am not always okay. In fact, sometimes I am quite miserable. HM has taken away my career. HM has taken away my independence, my ability to just hop in a car and go, my ability to take off on an adventure. HM has taken my confidence. HM regularly turns parts of my body off and then back on again. HM takes my children's mommy away several times a week. While I am fairly used to the daily episodes, looking at the worst episode ever makes it hard to deny that this is a huge problem with a life threatening potential.February 28, 2015 - We were met with a surprise snow storm. The reports called for a few light flurries but we got around 10 inches. My episode began with me feeling extremely anxious and confused. I was unable to comprehend some family obligations which were expected of me the following day. My husband was on the phone trying to make arrangements to keep the tasks as simple as possible for me before he left for an entire weekend for work. I was sitting in the chair trying to follow his half of the phone conversation when both my elbows began tingling. Within moments, both of my arms were paralyzed. (HM is characterized by one-sided paralysis and mine is almost always on the left, however it is possible for it to switch sides or present on both sides at once.) Shortly after he got off the phone both of my legs became paralyzed. Luckily I was still able to speak clearly. I shared what was going on with Steven and he came over and did some testing. He touched my fingers one at a time. I was able to feel his touch but I was wrong about which fingers were which. I was also able to feel him touch my toes but again I was unable to properly identify which toes were being touched.
We discussed it and agreed that I should go to bed. I was unable to move either leg or arm on my own. I was still able to move my spine and neck, but at a reduced range. In past experiences when my feet will not respond to my brain I have found that Steven can give me a gentle pull or push and once moving they will work properly. Assuming this could work again he got me to my feet and with his strong arm around my back and under my arms we set off shuffling toward the bed. As we sat at the edge of the bed he asked me to try very hard to move my left foot. We both saw twitching in my left knee, but no movement of the limb. The same thing on the right side. He tucked me into bed. After a bit my head was tired of being lolled to one side but I was unable to move it on my own. Steven adjusted my head.
The entire thing lasted around 40 minutes and it broke as suddenly as it had begun. I was able to stand up and walk to the dinner table for dinner, though I felt like I had been hit by a truck. After dinner I slept very hard for 3-4 hours. I woke up feeling very hungry and thirsty. Knowing these episodes can take a lot out of me, I decided to get up and take care of myself. The rest of the house was asleep. After eating, drinking, and poking around on FaceBook I went back to bed. At that time I noticed that as I became closer to sleep my breathing would stop and I would jolt awake. I tried several times and as I drifted away from consciously taking deep breaths my body would jolt awake due to lack of oxygen. I sat up the rest of the night. I found that I had to force myself to take deep slow breaths and that any time I was too distracted to control my breathing it would diminish to a point that caused the sudden alarming feeling of not having enough oxygen.
I knew it was a serious episode and that my lungs were heavy and sluggish, just like my arms and legs are so often. This is called hemiparesis when one side is weak and less responsive but not fully paralyzed. Thanks to my HeartMath practice, I also knew that getting upset and anxious would make the episode much worse. So I sat by the fire in the dark of the house and took deep breaths. I calmly took inventory of the coming weekend and made a safety plan. My husband would be waking up at 4:30 and heading out to work. My son and I would be home alone. My daughter was sleeping at a girlfriend's house and would be snowed in there until it melted. We had enough fire wood stacked on the porch, out of the snow. We had electricity and water. We had plenty of food.
Had it not been for the snow storm I would have gone to the emergency room. Not because I was afraid for my life or in a great deal of pain... but because it would have been very useful to have been hooked up to a variety of monitors and tests and gotten some real time data for my doctors and records. You see, this was the fourth time I had episodes in which I had to labor to breathe. It had happened once at night, once while meditating, and once in the broad daylight. In March of 2014 I had a sleep study in which they confirmed a mild level of obstructive sleep apnea and called my upper lungs "a bit lazy." But that was on an ordinary night when my brain's signals were getting to the lungs and the lungs were no partially paralyzed.
Steven woke up for work and found me sitting by the fire. I calmly explained to him that I was okay because I had chosen to control my breathing. Naturally he was worried but I was past the worst of it. He braved the roads and made it to work. That weekend I fed the chickens, dogs, cats, bunny, and my son and I. I kept the fire burning. I brought in many armfuls of wood. Having duties kept me going calmly, and I survived.
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