Grief, Part Three (the Hopeful Part)

guilherme-stecanella-366390-unsplashIf it seems like I’ve given up, that’s not true.

I’m exploring all the regular stuff (medication, therapy, extra rest, a new mattress) alongside less typical treatments like dynamic neural retraining, placebo meditation, Acceptance and Commitment therapy, warm water therapy.

It’s been hard to blog because I can’t seem to think about anything else lately other than how crummy I feel. Even when I try to write about something else, something fun, it only reminds me that I have no energy for it. In some ways I am being reminded of the summer of … oh, 2006 maybe? When I had no energy. That was due to Luvox, an OCD med, and it was terrible-terrible-terrible, but it didn’t last forever.

I know that chronic means ongoing, but I am excited about all the different opportunities to work toward health. And I do not forget that miracles happen. I am in a weird season, I know, and I thank you for hanging in there with me.

My brother is getting married a week from today– it should be a lot of fun. I rented the most gorgeous dress, all navy blue and sequins, and I’ll be reading a poem I’ve written for the bride and groom. The writing conference a couple weekends ago was lovely and life-giving, so delicious to be in the presence of creative believers. I’ve been enjoying inspirational videos online too and wanted to share the one below with you. I’ll warn you that the music is a bit annoying, but the various speeches will give you so much strength!

Holding Both in Such Weak Hands

flare
verb
to suddenly burn or shine brightly

flare
noun
an exacerbation of a chronic disease

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Can’t write much today because my wrists have been in pain for almost 24 hours now. Just trying to rest: pared down my to-do list to just three things, this blog post being one of them. Earlier today, I would not have been able to type it out. This evening, I am a little better.

I want to shine bright, make a difference, be a leader in thought and action. Sometimes it can feel so impossible with a body that feels like a leaky bucket: hard to store up energy when the most mundane things seem to leech power. Some days I feel like a rag that has been wrung out.

I know I am blessed with resources, privileged: I can afford pain meds and peppermint oil, my employer works with me and not against me, I have a support system that could make a king envious.

So, somehow, I get to do both. I get to flare up in multiple ways. Perhaps not at the same time.

But then again, with all I’ve learned of vulnerability: maybe so.

blake-cheek-617240-unsplash.jpg

Photo by Blake Cheek on Unsplash

I’m so hot.

Being a freckled, Irish strawberry blonde, I’ve always been sensitive to heat. I have to be careful about sunburns because, oh buddy, they happen quickly and are brutal.

About two years ago though, I noticed that I was sweating all the time, mostly along my hairline, and even in situations that didn’t seem to warrant it. It also gave me a sense of claustrophobia and drained my energy at a faster rate. I started to choose activities based on temperature, no joke.

Fast forward to this past fall, when I finally started getting answers to my health questions. It turns out people with fibromyalgia often have temperature dysregulation, an inability to moderate our own body temperature. While it looks different for each person, for me, it means:

* being warm/hot 95% of the time

* even when the weather is freezing (hi, I’m a Minnesotan)

* a shower or blowdrying my hair can make me feel like I’m experiencing a hot flash

* I’m ultra sensitive to it to the point where I feel like I can’t breathe well and experience exhaustion

* I have a fan on while those who share my office have their space heaters going

* even coming in from a cold Minnesota day into a regular indoor temperature feels like such a sudden rush of heat that it spreads across my body, my entire scalp, and across my jaw

It’s actually been really good to read up about it. This is a particularly good article, but there are so many articles written and studies done on fibro and temperature problems.

What this means for me, much of which you will never see:

* when someone suggests an activity, I judge it based on how warm/hot it will make me and what opportunities I will have to cool down (for example, going to an outdoor baseball game in the sun would be a terrible idea for me … going hiking would be actually detrimental)

* When I feel myself overheating, I have to stop and cool my body temp down; letting myself pass a certain point will actually make me sick for 2-3 days. It’s better to just go stand in front of my open window for 5-10 minutes and cool my core down.

* it has very little to do with my weight and everything to do with my hypothalamus.

* I have to be careful with exercise. Walking and yoga do the trick; cardio would make me sick for a week.

* I’m ultra aware of not dressing too warm. I can only wear sweaters and fleece in the coldest weather. I barely wear a coat, even in winter, though I do bring it with me (safety first– Minnesota’s winter temps are no joke!). If I dress for cold weather, I need to wear layers because I will likely need to cool down layer on in the work day.

* Cooling down the palm of the hand helps cool your core. This is key.

Why am I telling you all this?

First, it took me a long time to figure out what was going on with me. Maybe this will help someone else.

Secondly, it’s a friendly reminder about invisible illnesses. Your friend or colleague might be dealing with something that doesn’t make sense to you, but it doesn’t mean it’s not real.

Thirdly, usually the person inside the body knows it best. Well-meaning friends can make all the suggestions they want (“Come to my spin class!” “You’ll feel better if you just …”), but it’s your body. You know what will feel better or worse. Trust yourself. Trust the body owner.