What my fibromyalgia feels like.

While not exhaustive, this post is meant for you – the person who is trying to figure out exactly what’s causing you so much pain, the person who is looking for answers after a fibromyalgia diagnosis, the person who is trying to find better ways to care for your body.

I’m going to try to be as thorough as possible and share what has helped me, but different things can help you. Do your research. Consult doctors and wellness professionals but know that you know your body best. Look into patterns. Keep food and activity journals.

Just like with my type 1 diabetes, my fibromyalgia is a game of data. I have specifically engineered my life – what I eat, my activity levels, my exercise, and more – to gain control of my health. You can too (and no, I didn’t just meant to sound like a motivational poster. I just legitimately know that you got this. It’s hard, but you do.)

On my worst days, noises cause me pain. I’ll hear a car horn blaring and it feels like every nerve ending in my body has been set off. I’ll try to tense and release my muscles – my calves, my thighs, my forearms – as a distraction, but it’s like the sound waves are reverberating through my body and there’s nothing I can do to stop them.

On my best days, it’s like I’ve never been sick. The human brain is a wonderful thing and tends not to hold on to pain if we train it to do so. People will ask me how often I have pain flares and I can cheerfully answer, “Oh! Not more than, I dunno, once every few months? It’s not awful.”

In reality, I have pain and inflammation flares once every few weeks. Some are worse than others. Sometimes I’ll just wake up with pain – a lulling ache in my muscles, sharp pains in my joints and the typical fibromyalgia pain points (all of which flare for me) – feeling foggy and lethargic, my brain chemicals doing everything but helping my mood, but my symptoms will level out by midday and I’ll be back to feeling like myself. Sometimes the flare lasts a month or more and I’ll be working from bed most days, willing my joints to stop feeling like they’re on fire, avoiding eating for as long as possible because anything I consume seems like it sends me into further inflammation. Continue reading “What my fibromyalgia feels like.”

What it’s like to watch people die from your disease.

My immune system attacked my body when I was 10, resulting in a loss of ability to make a crucial hormone called insulin, which turns the food you eat into fuel for your body. Without insulin, the sugar from your food compounds in your blood stream, quickly poisoning you from within.

Before 1921, this event was a death sentence. The only “treatment” was starvation. Even over the last few decades, being diagnosed with this autoimmune disease meant shorter lifespans and drastic changes in what life could look like. Outcomes weren’t great. Complications were inevitable.

Technological advancements have made it so that I, by being born at the right time and into privileged circumstances, can not only live, but can live the life healthy-me would’ve lived too.

But the reality is, people still die from complications of type 1 diabetes all the time. And whenever I hear stories of it, I break down. When people die from this disease, it’s rarely from their own negligence. It’s mostly from simple mistakes – not realizing that what felt like the flu was actually diabetic ketoacidosis. Not waking up from a low blood sugar and dying in your sleep. Miscalculating how much medicine or food you would need when you’re out and about. Or, also commonly, from not having the money or resources to afford what you need to survive. Continue reading “What it’s like to watch people die from your disease.”

Have no idea what I’m talking about when I say ‘spoonie’?

As I develop content for my book, publishing in September 2016, you’re going to keep hearing me refer to this thing called a “spoonie.” Nope, not a trekkie. Not some weird reference to cuddling. It’s a way people with chronic disease describe ourselves, and here’s why. Continue reading “Have no idea what I’m talking about when I say ‘spoonie’?”