The drugs don’t work…

Yesterday was Fibromyalgia Awareness Day and I think my body knew it. My back is certainly making me very aware that fibro hurts. So much so that I couldn’t even finish this in time to mark the day. If I’m forced to know about fibromyalgia all the live long day, then I’m afraid you’re going to have to find out about it today.

Fibromyalgia difficult to manage. It’s unpredictable. You can hurt everywhere or the pain can focus on a new spot everyday. One day you might be too fatigued to get dressed. The next everything you eat sends your guts into a temper. It can have an effect on cognitive abilities, make your skin burn, muscles ache & head throb. Sometimes all the at the same time.

There’s no cure. Sufferers often experience constant pain. Treatment usually includes a combination of pain relief medication and non pharmaceutical interventions (massage, tens, specific exercises). Many also receive therapy aimed at helping accept chronic pain because treatment rarely results in the eradication of symptoms. Living with fibromyalgia means always feeling some version of unwell.

Whilst you can’t make any of us better, you can help. There are easy peasy ways to not make our lives harder.

Ditch ‘Get Well Soon’

Fibro is a chronic, incurable illness. We are never getting better. It may be well intended and seem like a little slip, but it’s exhausting. Luckily it’s simple to fix. You can express both your well wishes & your understanding of the situation with these words, I hope you have a better day soon.

Don’t offer magic cures.

Struggling with an illness that impacts every aspect of your life motivates you to get informed. Fibro folk don’t need your unsolicited advice. We definitely don’t need to hear about the same magic cures over & over. We’ve researched whatever diy fix you heard about in instagram. We try credible therapies available to us. We’ve considered our diets & yoga & cbd. We really don’t need to hear about how your cousin’s flatmate changed their life with turmeric. It’s patronising on so many levels. Stop it.

Invisible isn’t imaginary.

Fibromyalgia can be an invisible illness. It doesn’t necessarily leave any physical sign of its presence. That doesn’t mean it isn’t real. If you don’t know what fibro is, 10 minutes on google will be illuminating. No one is required to answer your intrusive questions. Medical records are private for a reason. If you don’t understand the condition, don’t worry about it. Extremely well trained medical professionals do. As a person with fibromyalgia it is not our job to convince you of the severity of the illness. It requires zero effort to mind your own business.

Don’t judge my good days.

Fibromyalgia is erratic. I never know how I will feel when I wake up. Sometimes I can go from reasonably ok to excruciating pain in the space of an hour. I try to plan around fibro, but nothing is ever set in stone. I can spread out appointments. Schedule rest days. Make a timetable for essential tasks, but my body doesn’t care. It will throw a painful spanner in the works whenever it pleases. The fact that I could do X yesterday is no guarantee that I will be able to today. An outing that I managed last week could easily leave me unable to function for days another time. I want to live as full a life as possible. So, on good days I attempt to get things done. The fear of being judged solely on those days is horrible. I’m not faking symptoms to avoid things I don’t want to do. I’m not lying when I cancel plans. In fact, the opposite is true. Most of the time I underplay how bad I feel. If I were to vocalise every dreadful sensation I’d never talk about anything else. I know my illness is frustrating. I hate that I inconvenience so many people. Please, believe that I am I trying my very best.

Most of the time…

I haven’t cut myself for a long time. Realistically speaking, I cannot ever cut myself again. They call this recovery. Apparently, I’m recovered. I just don’t always feel it.

Tonight I looked through my old self harm pictures. Yes, I have pictures. When I was in the thick of it I always took photographs. Firstly because I felt compelled to, it was part of my ritual. Also, because I couldn’t trust myself to judge the severity of my wounds. Those pictures gave me the tiny bit of distance required to see what level of medical intervention I could get away with. Now, they’re a stop gap.

They’re the thing I do when I want to cut so badly it hurts not to. I look at those images of gore & miss it.

I miss the blood. The hot, flowing, staining everything I own blood.

I miss the smell & that crackling sound my skin makes when I slice into scar tissue.

I want the pain. I want the deep, sharp trauma my blade inflicts & the hot throb of infected tissue. I long for the ache of putting a butchered arm into a sleeve.

I know that doesn’t make any sense. I know it’s sick & crazy. It is still true. There’s a reason I yearn for the carnage; it works. Only briefly and, sure, it also fucks up your life, but those moments of respite are everything. Physical pain is nothing compared to the relentless agony that can exist in my head. Most of the time it’s manageable. Most of the time I can make it sleep. Most of the time I’m in control. Control isn’t easy. It is work. Exhausting, consuming labour.

The blade is easier. In the short term it’s beautiful relief. All those horrific feelings pour out with the blood. I can slash through my anguish just as easy I hack through my flesh. That’s why we do it. In case you were wondering. The reason some us do insane things to ourselves is because it’s effective. We hurt ourselves to heal ourselves.

The calm just doesn’t last very long. The sickness comes back. It returns stronger every time. The crazy grows. You need bigger, deeper, scarier cuts to keep it quiet. Then the self harm becomes a crazy of its own. You need it. You find yourself listening to drs who say you’re going to die. And even though you really don’t want to die. It’s hard to care. Now the crazy is trying to destroy you & the cutting is competing to do you in first.

So, I don’t cut anymore. I can’t cut anymore because I cannot control it.

If I want to be in charge,

If I want a chance at living a life I love,

If I want to not hurt everyone who cares about me,

I can’t cut.

Sometimes, though, I desperately want to. The easy way out looks good. The horror movie in my head wants to come to life, but I can’t let it. I don’t cut.

I just look at old pictures

And

Write all the things I can’t bring myself to say out loud.

I don’t cut anymore & most of the time I’m glad.