In which I learn and try new things

Diary of a chronically exhausted vicar image

Always learning

It is difficult to discern what exactly triggers each pain flare, each energy slump. Stress, a late night, too much dairy or sugar or carbs, too much activity … often several of these things can happen within a short period of time, or simultaneously, so what caused it and therefore what can I change so as to avoid pain and fatigue in future, is hard to identify.

Sometimes it seems obvious, but is actually more complicated, on reflection. Tuesday, for example, I was experiencing significant pain, and identified the stronger swim strokes of backstroke and freestyle on the tether in the pool on Monday as perhaps pushing my muscles further than they would like. And/or the rearranging of storage on Monday afternoon, moving boxes and baskets around, and having a tussle with the double memory foam mattress that has lain around, victim of my indecision regarding its use or storage for months. Oh, I fought with that mattress! It resisted my every attempt to encase it in its plastic cover, or to fold it or roll it or wrangle it somehow into the cupboard. I yelled at it, I swore at it, I was surprised at the depth of my anger. Eventually, I gave up and stood it by the wall behind the equally unused cross-trainer, to deal with later.

Wednesday, my chiropractor heard all this and at that expression of anger, exclaimed, good! That’s what we’ve been reaching for for weeks. And it seemed that the cause of the pain might not be, or not entirely, the physical activities of Monday, but the result of resisting that anger because I was afraid to feel it properly. And I talked about that in another post.

Sometimes it seems complicated, but on reflection, is reasonably obvious. Several weeks ago, I thought I was confused about the pain I was experiencing – there had been no extraordinary physical activity, I’d paced myself and rested in the days leading up to the pain flare. Then I looked at what I did not really want to see. Two bottles of white wine consumed in four days. Wine, I had not really allowed myself to suspect before though the thought tried to be heard, wine might not mix well with the Chronic Fatigue. Sigh. Actually, I think it’s more likely to be white wine than red, and certainly drinking half a bottle in one sitting triggers pain. So moderation.

The key to living well with chronic illness, I have discovered, is to learn more about the illness, to pay attention to what helps and what hinders, and implement that learning.

As I wrote last week, feel the feelings, Sarah. And one glass of wine, or maybe two, is enough.

Wisdom for all, I suspect, in there.

wine glass

Trying new things

Living well with chronic illness is also helped by listening to the experiences of others, and trying new strategies, practices, tools, to help minimise the symptoms, and encourage healing and well-being.

I had seen weighted blankets being used by people with sensory sensitivity and muscle pain illnesses like fibromyalgia and chronic fatigue. I wondered, would that be helpful for me?

I ordered one from a kickstarter campaign, which described a blanket that would be well made, learning from the weighted blankets that had gone before it to use only the best elements. It took six months from order to delivery. Thank you global pandemic.

weighted blanket

The day it finally arrived, I unwrapped it from its box and bag, lay down on the couch, and pulled the blanket over me. It enfolded me like a hug. Applying gentle pressure to somewhat hold me down, pin me in place, calm the restlessness of aching muscles and bones. Such comfort. It is not warm, on its own. So a rug over it if I’m needing warmth is helpful. That the weighted blanket breathes, feels almost cooling, is a good sign for use all year round.

That night, I placed the weighted blanket on the bed, finding it works better beneath the quilt. To properly give the feeling of pressure, of enfolding me in a hug, it needed to be the first layer. The quilt on top keeps the warmth in.

I have been a fairly restless, messy, sleeper most of my adult life at least. After we have as adults had to share a double / queen / king bed on a number of occasions, my mother expresses a preference for not doing so again. With the weighted blanket, I turn less often in the night. I have hardly woken in the night, even when we’ve had below zero temperatures, since I began sleeping beneath a weighted blanket. I wake much more refreshed, feeling more able to rise and greet the day.

Because I am resting well at night, when I need to rest during the day, I often lie on the couch with only the throw rug, warm but not weighted. When the pain is worse, as it was on Thursday afternoon, I carry the weighted blanket from my bedroom (it is quite heavy to carry, the weight condensed) to the couch, pull it over me, and listen to Michelle Obama read Becoming aloud, and breathe back into a deeper well-being.

A weighted blanket to soothe aching muscles. Reading by listening to rest weary eyes. New things I am trying, as I continue to learn how to live well with chronic illness.