wolfsong

Chronic Pain, Writing and Just Getting By

sage wolfsong blog title graphic chronic pain writing and just getting by

Recently, my writing partner Allie McCormack wrote an extensive blog post on her experiences with chronic pain and being an author. While I agreed with most of what she had to say, I realized that my own experience is very different (we have moments in our conversations when one of us says "Wait.. you WHAT?!"). This is not meant to diminish her message in any way - her blog post was birthed after she was attacked on Twitter for having a (cough cough oh-my-goodness) positive outlook on living with chronic pain. 

Oh, for the love of Mike, people! I've been there, done that, have the scars to prove it. Sometimes, I post on social media, and my own family just cannot fathom the idea that I might pull something good out of having a laundry list of life-altering, unpleasant medical issues. "Yes, I appreciate your prayers for my healing, but here's why I'm grateful for having had to deal with this..."

**Before I go any further, I would like to remind you that I am not a physician - this blog post does not constitute medical advice, diagnosis, treatment, cures or anything of the sort. This is my own personal experience with chronic medical conditions.**

To date, I have been diagnosed with severe depression, anxiety disorder, PTSD, chronic migraines, cluster headaches, fibromyalgia, psuedoseizures (a severe form of anxiety attack), a blood clotting disorder, hypertension, high cholesterol and obesity. I'm sure I'm forgetting something in there, but you get the idea. 

I have been told to "just get over it," asked "what on earth do you have to be anxious about?", been advised to "just exercise and eat right." You get the idea.

sage wolfsong blog graphic talking to someone with chronic illness

These kinds of statements are damaging. There, I said it! I know you mean well when you tell someone these things. Well, most of you do. And when you say those things to someone struggling with ANY of those problems, you're doing more harm than good. Take a moment to look into the life of a chronic pain sufferer:

My alarm goes off at 6:15 a.m., so I can spend a little time cuddling with Hubby before he has to get up and ready for work. Unfortunately, when I wake up, my head is pounding - a migraine has set in overnight. Daughter has schoolwork that she needs guidance with, so sleeping all day is not an option (though it sure sounds good!). I meant to get up at 7 when Hubby hits the shower, and do some yoga, but when I sit up on the edge of the bed, the whole world sways, and my stomach clenches, thanks to Mr. Migraine. Making the call that doing yoga (even the act of rolling out the mat is dicey as my balance is off now) isn't a safe idea, I lay back down and steal another 30 minutes of blissful dark before I crawl out of bed and find clothing.

Breakfast does not appeal, and I'm still wobbly, so skip the shower and have a cup of coffee (I have a love/hate relationship with caffeine - right now, we're in love, and headed towards hate, but that's a different blog post). Get Hubby off to work, help Daughter with schoolwork, hold my aching head in my hands in between parental demands and the kitten clawing for attention. A nap sounds good by 10 a.m. but I have this long list of other stuff that needs to be done, so I suck it up, put on headphones and music and do my best to ignore the pain and see past the floaters in my vision and get something done.

Because I've spent three hours trying to crank out work of some form or another, my shoulders are now tight from managing the pain I'm already in and I've been clenching my jaw as I deal, which has only intensified the headache. But, why haven't you just taken something for the migraine and gone back to bed? Because - two reasons. 1) Migraine meds barely touch the pain now, so there isn't much use taking them and 2) Taking medication for breakthrough migraines (I already take a medication to control them... and I still have two to three a week) on a frequent basis is deadly. I've been there, too. Thanks! Oh, and did I mention that I have two businesses to run and a twelve year old to school? Right. Bed's not an option.

Even if it was... here's my Catch 22:

Standing, sitting or laying down for long periods generates nerve and muscle pain from the fibromyalgia. So, I sit for a while, get up and do a little housework until my body is screaming at me (hello, clenched jaw and migraine again! Welcome back), then sit back down to work on business stuff or writing for a while once more. I head to bed around 9 every night, because I'm absolutely exhausted and I'm desperate for sleep. Waking up in pain makes staying in bed an attractive option until I wake up a couple hours later with my body screaming in pain. Again. So I drag myself out of bed and try to be functional, while my brain is shutting down and my eyes are slamming shut. Going back to bed is not an option - my body is still screaming at me for sleeping too long to begin with. 

On top of the personal dilemmas, I have a daughter to think about. Her school years have been a struggle, as school outings and activities have meant pasting a smile on my face, despite extreme pain and anxiety, and exhausting myself so that she isn't isolated, too. This is not a reach for martyrdom. This is my reality. When Daughter volunteers on the weekends, I get dressed, skip the nap and go along with her. Halloween was fun - standing in the damp and cold for three hours to hand out candy. We did have a blast laughing and joking with others at the lighthouse, but... I paid for it in more than usual pain for the next week. And the next. It's mid-November, and I am still struggling to get the flare up under control. 

Sounds like fun, huh?

I run on two cycles:

One - The good cycle. This comes from enduring days and weeks of increased pain, dragging myself out of bed to work out, eating absolutely NOTHING fun (how much chicken breast and salad can you tolerate before you're dying for something else?) and meditating three to four times a day. Each day I can stay in this cycle, I do a little better.

Two - The bad cycle. Stress is literally a killer for me. A few days of heavy intensity stress can and will leave me utterly wiped out. Extra sleep is a must, which means that I wake up in excruciating pain - migraines and body both. More pain means I move less. Less movement means more water weight gain (thanks to the meds I have to take because of the blood clotting disorder), which makes it even harder to move. Additionally, extra pain means I'm more isolated, because I can't get out as much. More isolation leads to feeling very alone. And by the time it's all said and done, my depression is a million times worse. Technically, this is called a flare up. Privately, I call it Hell.

So why don't you just take one of the medical marvel drugs for any one of these conditions?

Just take a pill and that'll fix everything, right? Except for the miserable side effects that are worse than the original problem, sure. At my worst, I took no fewer than 15 prescriptions and three supplements (D3, Magnesium and fish oil). That particular path put me in the hospital, by the way, and I still have massive gaps in my memory from that time period, and I have never fully physically recovered from the damage to my body. The last round of anti-depressants made me suicidal. The constant pain medications didn't touch the pain, but they made me lethargic and fuzzy-brained. I couldn't mother my own children, I still had pain, anxiety and depression - plus all the nasty side effects from the medications I was taking.

Instead of all the funky chemicals, I managed to work with a doctor and narrow the prescriptions down to just three: one medication to manage my pain, migraines, anxiety and depression, of which, I'm still on a very low dose; one medication for the clotting disorder and inject-able birth control to deal with the female side effects of a blood thinner.

I cover the rest with nutritional supplements, do my best to exercise when I feel up to it, and try to eat healthfully more often than I junk out. (NaNoWriMo means that I eat junk more than healthy, but I still try to sneak veggies and lean protein in when I think about it.) I feel very fortunate to have a medical provider who doesn't reach for her prescription pad at every visit (other than to write down adjustments for my blood thinners), and knows her supplements and what they're good for. She has also dealt with chronic migraines, chronic pain and depression. She might encourage me to push through it, but she never tells me to just get over it.

So, now that you've read my "sob story" (really, folks, it's almost impossible to convey what this kind of life is like to someone who isn't in it), here's where people get pretty upset.

I am grateful for my disabilities.

Yes. You read that right. I. Am. Grateful. Not for the pain itself, the miserable nights, the very long days. I am grateful for the experience.

I've blogged before about what I lost when I got sick. A great career, my driver's license (the seizure activity makes me behind the wheel very dangerous), my freedom, and for a long time, it robbed me of my joy.

But then, after my discharge from the hospital, when I needed a walker just to get around the house and was trying to piece my memory and independence back together (I couldn't even get dressed by myself), I had this moment of revelation. 

I had to stop running the rat race. I had to learn to budget my time and get my priorities in order. I suddenly had the opportunity to be hands-on in Daughter's education and was able to give her options that work better for her short attention span and low levels of stimuli-tolerance (she gets overwhelmed easily, even at home) as well as let her work at her own pace (she has a very high intelligence as well). I can be here for Hubby. And I can pursue my own business ideas. I can write the stories in my head and share them with others. 

And I've learned one hell of a lot of empathy for others.

Do I miss my pre-illness life? Yeah. I do. At least, parts of it.

Do I wish I had never gotten sick? No, but yes. As much as it's sucked over the years to have to learn to cope with one thing after another, I realize that I never would have slowed down to enjoy Daughter's childhood. I couldn't have been there for Hubby when he needed it. I wouldn't be loving my writing, even though I'm not yet published.

I have chronic pain and mental health issues. But I'm not sorry for it. I don't resent it. I keep going. Chronic pain has given me an entirely life than I ever could have imagined, and I don't regret it for a moment.


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