As the autumn air ushers out the summer sun I, like many of my friends around the world living with fibromyalgia reel from a flare of unforgiving symptoms.
A change in season. You’d be forgiven for thinking I’d be used to it by now, seeing as I live with a chronic pain condition. Fibromyalgia is not a one time thing, or an occasional flu type thing. It’s an all the time kinda thing. It never goes away. It rises and ebbs depending on the day and is different for every person living with it. But it does not go away. (No cure, no thanks to the lack of research and attention paid to it by the powers that be). It is chronic, you get it.
But the truth is it gets me every time. Every time.
Every time the seasons change or the weather shifts suddenly I experience a fibromyalgia flare. Unrelenting and destabilising. It devastates me.Fibromyalgia is not a one time thing, or an occasional flu type thing. It’s an all the time kinda thing. Click To Tweet
Different types of pains in various parts of my body are going constantly at the moment. I am exhausted from pain and I know that if this continues, in a few days, maybe three or five or seven, I will get delirious from it.
Throbbing, stabbing, burning, achy, stinging pains, ones that travel… in my fingers, my back, my head, shoulders, arms, legs…
Oh the pain
It keeps me awake even as a heavier than normal fatigue lays itself over me daily like a weighed winter coat loaded with boulders in its pockets.
In the mornings a heaviness settles on my head bringing me into the day with a lingering migraine.
Together with the crippling fatigue I’m struggling again to get out of bed in the mornings. It calls to nausea and dizziness and I feel like I will pass out even while I’m horizontal.
I’ve gone from proudly coping with my pain most days without painkillers to praying that my 1000mg four-times-a-day painkillers will at least help me get the edge off the pain.
It’s failing spectacularly.
Over the years, through self learning and sharing with other bloggers, I’ve gotten to a place where I manage through the days without taking painkillers – it is my choice- because I don’t want them to lose their effect for the days when I’m in severe pain and in need of relief. Particularly given the great injustice of many doctors refusing to give chronic pain patients drugs that actually provide relief.
I do that so at times like now, when I’m having a severe flare I have something that helps, even if a little, so I don’t endure additional sufferation aka suffering.
Note: Sufferation (Trinidadian slang; Noun)- Suffering to a higher degree
Compassion and a little help from our friends
But my God it is hard. This is even with the things that help like the Epsom salt baths, juicing to keep up my intake of fresh anti inflammatory foods like ginger and turmeric roots, eating clean, stretching etc. And even with the things that are supposed to help like vitamins, iron supplement, managing stress etc.
Change of weather/season flares often leave me feeling dejected. It ushers back in hopelessness where I think how much longer can I live like this. But I know many other fibromyalgia friends are suffering more. I am thankful at least that outside of changing seasons I’ve found a routine and ways of managing that have improved my quality of life so everyday is not like today.
I am grateful, utterly grateful that my workplace has shown compassion and flexibility. Without it, I wouldn’t be able to work. Before the pandemic I had a mix of working from home and going into the office. This has continued and I cannot overstate my thanks. Because it means that when I get very unwell, dizzy, having bouts of sleep paralysis or am delirious from pain and so on, it means I can have a safe space to recuperate comfortably and look after myself until I am well enough to work again. No worrying about how I will survive the journey home without passing out while standing on a packed train. And to all the work-from-home sceptics (if there are any left!) I’m more productive than I’ve ever been. Even with my sleep deprivation (thanks insomnia and pain).
My heart goes out to all fibromyalgia friends struggling, going through flares and feeling alone. Those without compassionate employers and/or families/friends.
You’re not alone.
Living with fibromyalgia isn’t easy, add the lack of research and understanding from the medical fraternity. We need compassion and a little help from our friends. Where we cannot find it, we must give it to ourselves. Be kind to ourselves.
My friend phoned from Trinidad yesterday and said “What would grandma tell you to do?”
“I dunno,” I shrugged, feeling sorry for myself and wishing my Ma was here to fuss over me as she did my whole life until departing last year.
“You know what she would say! She’d say go make a cup of tea”
And he was right.
Later that night I dreamt Ma encouraging me to juice more turmeric and ginger root with vegetables. I woke with a tear but encouragement.
I am not alone, she reminded me, even if it feels like it at times.My heart goes out to all fibromyalgia friends struggling, going through flares and feeling alone. Those without compassionate employers and/or families/friends. You’re not alone. Click To Tweet
So today I am giving myself the kindness my Ma would have shown to me. I am fussing over myself, making my tea, having my Epsom salt baths, I will juice another batch this weekend, remember to take my meds, try to rest and every time I feel like fretting I will ask myself “what would Ma do?” And do just that.
I hope that you have someone in your life to encourage you as you ride this wave of fibromyalgia flares.
Sending you love and hugs x
Photo by Nick Fewings