Fibromyalgia and Me

I have Fibromyalgia. Well, technically, I probably have Fibromyalgia. According to my doctor there is no single test that can tell you that you definitely do or don’t have Fibromyalgia. It’s all about looking at the “constellation of symptoms” and ruling out other possibilities. It boils down to me “most likely” having Fibromyalgia. There is no cure.

It’s good to have a label, I think. It’s useful to have a named disorder to explain why you’ve had more days off sick than the average person. Although having a label doesn’t really change anything in terms of how I am feeling.

I also have disk degeneration in my lower back.

What is Fibromyalgia?

Fibromyalgia is a neurological condition where our bodies, in essence, overreact to things. This causes pain, fatigue, digestive issues, anxiety etc.

Here’s a quote from a website called VeryWell which I think explains it well:

Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.

That’s what’s happening with pain signals in those of us with this condition.

The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn simple things like mild pressure or even an itch into pain.

When those pain signals reach the brain, they’re processed by something called serotonin. However, we don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.

This is why we have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the nerves and brain turn into actual pain.

Other substances in the patient’s brain amplify a host of other signals—essentially, “turning up the volume” of everything. That can include light, noise, and odor on top of pain, and it lead to sensory overload. This can lead to confusion, fear, anxiety, and panic attacks.

From: https://www.verywell.com/a-simple-explanation-of-fibromyalgia-716142

It seems that Fibromyalgia can be triggered by a physical injury. I can only assume that when I first hurt my back 3 1/2 years ago, with the hideous sciatic pain, it sent my nerve system into meltdown. All because of a cold, where my coughing made my back twinge.

How does it affect me?

  • I am in pain all the time. The severity and location varies. My legs hurt. My left leg in particular hurts all the time. I get pain in my feet, knees, calves, thigh, and hips. My arms hurt. I get pain in my hands, lower arms, upper arms and shoulders. My neck hurts. My head hurts. I can usually deal with the pain around my body, although of course it gets me down and makes physical activity difficult. It’s when it is in my neck and head that I am at my worst. It generally turns into a migraine and I am unable to function. I also have pain in my back that I put down to the disk degeneration.
  • I am nearly always tired. I rarely if ever wake up in the morning feeling refreshed. Generally I don’t sleep through the night. I wake up repeatedly and struggle to get back to sleep. I go to bed around 9pm each night because by then I am physically exhausted. Since I’ve started taking some new meds I have occasionally slept through the night which is an improvement, but I still wake up tired. As my family will tell you, I’ve always been grumpy and irritable when tired, so imagine what I’m like when I am almost always tired
  • I am anxious. I have always been a bit of a worrier. In recent years this has become worse and I get more physical symptoms of the anxiety like palpitations.
  • I have digestive issues. I have IBS (irritable bowel syndrome) which is affected by both physical and emotional stress.
  • I have issues with smells and light. I can feel unwell due to having to deal with bright light or strong smells.

Why am I telling you this?

I’m telling you because I’ve been having a flare for the last couple of weeks, and I haven’t been able to find the motivation to blog. I usually do the weekly photo challenge, but I couldn’t find the right photos, and the weather wasn’t helping. I’ve just been surviving. Even though I’ve been in pain for the last 3 1/2 years, I always used to hope that one day it would stop and I’d be fixed. But now I need to adjust to the fact that this is me now. This is me for the rest of my life. I need to learn my new limits and avoid pushing myself too far. I need to accept that this is how things are, and make the best of it.

Remember that there are many other ‘invisible’ illnesses like Fibromyalgia. People who look fine may not be. Whether it’s physical or mental illness (or both), everyone has their own burden to carry.

Let us be kind. That’s all. Just be kind.

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Pain & friends

I have been struggling a bit recently with my pain levels which can lead me to sink into a cloud of gloom. Pain and tiredness can bring along their lovely friends anxiety and depression and it’s easy to fall into a blue mood.

Barbed wire droplet
Pain and tiredness can leave me prickly and tearful

Some days I struggle. And foolishly I try to pretend I’m fine. But I’m not.

These are a few things I need to remind myself to do when I’m down…

  • Look at the world around you and don’t just focus inwards on the pain and muddled emotions. The simplest, smallest things can lift you up. Look outwards!
  • Don’t forget that “this too shall pass”. Spring will come again. This is not forever.
  • Talk about how you’re feeling (or write it down). It helps to let go of the burden. So don’t keep it to yourself.
  • Practice the art of distraction – watch a happy film, read a happy novel, crochet, take photographs – do those things you enjoy even if you don’t feel like doing them right now.

 

What helps you navigate blue days and escape from pain?

Snowdrop
Simple beauty soothes the soul
(this photograph is available to purchase as a digital download)
Crocuses
Spring will come again

A Quiet Walk

Stepping out of the door for a walk yesterday, drops of rain touched my face and I nearly turned back. With a sigh I tucked my camera under my coat and urged myself to just walk and breathe the fresh air, never mind the photos I wanted to take.

I was glad to have persisted as the rain soon stopped and there were splashes of sunshine among the puddles.

Bluebells glistened, with droplets reflecting greens and blues among the soft petals. The woods were quiet and soothing. My lungs filled with the essence of life, and the walk would have been worthwhile even if the camera had been left at home.

However it was there in my hand and the moments were captured with care, droplets surveyed and approached from angles. Joy felt as newly grown spring flowers were noted.

And a snail, untrodden, carried on his purposeful glide across the watery grass on to who knows where.

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Thoughts

I have most of my thoughts while doing something else. Usually something that I should be concentrating on really. I have on occasion got out of the shower, lost in thought, only to discover I accidentally forgot to wash my hair (one of my main reasons for being in the shower to start with). Earlier I had a really interesting thought while making tea and coffee. I was staring out of the window at the rampaging ragwort, and stirring tea, and I had this thought, such an interesting thought. But then I was distracted by the hungry people in the house and lost track of the thought. It has since been irritating me beyond measure as I can’t remember what it was that I was thinking about. I’m pretty sure it was a really interesting and amusing thought, but no, it’s completely gone. My brain is vacant.

Crazy Ideas Abound

Ok, so I had an idea. I may have been slightly off the planet on tiredness and codeine, but it seemed like a good idea. The theory is that I blog on wordpress.com, but by the wonder of IFTTT my blog posts appear by magic on suzyblue.org.uk. So here I am, writing this and wondering if this was a good idea or if the codeine has messed with my ability to make sensible decisions. Ah well, if it turns out to be a silly idea, I’ll just turn off the IFTTT magic, and all will be as it was. So much pain the last couple of days means more codeine unfortunately.

Showering with Sheep

I’m showering with the window open again, despite the chill.

It’s one of those summer mornings where the sun hasn’t got going yet. The kind of day that saw me as a child stood at a bus stop for a day out dressed in shorts and a jumper in a strange mix of optimism and realism. Cold legs shivering but with the desperate hope that later I’d be glad.

There’s a sheep staring at me while I shower, eyes meeting mine as I contemplate the brightness on the hill. Of course it probably can’t even see me – it’s eyes are looking across half a field and a garden to see me through the crack of a small window. But nonetheless it does seem to stare right at me.

Eyes closed while washing my hair I’m considering how far away the sheep is – perhaps a hundred yards? But I can’t visualise a yard. All I can think of is a little rhyme my dad must have taught me: “a metre measures three foot three, it’s longer than a yard you see”. Not really all that helpful as I can’t visualise a metre either.

Shampoo rinsed off I peer blearily at the window. The sheep has moved away and just a patch of blank hillside remains.

I am disproportionately disappointed.

Home

I can’t write poetry. My brain is slightly addled by codeine as the pain was lingering long today. I’ve tried to assemble my thoughts but they keep running away. I am thinking of home, and how this was my home, my childhood home. Visiting is comfortable, like wearing old familiar clothes. Though things have changed round here, it’s somehow still the same, despite the extra houses and rearranged roads. I am sat here, comfortable, but my heart is elsewhere. A thread stretches out from here to there, where you are, and though I’m comfortable I feel its tug pulling at me. It’s just been a few days, but I miss you. Home is where you are. So I’ll enjoy the comfortable feeling here and the time spent with family, knowing soon I’ll be home with you. I’ll return to our little village, back from the big city, reaquaint myself with the frogs in the pond and the insects in the tall grass. And catch up with missed kisses and hold on tight.

Doubt

So I moved all my blogs here, and now I’m doubting if it was a good idea. With my tired eyes staring blurrily at the screen, I sit and doubt. I doubt and sit. Stretch and wriggle my gammy leg, and doubt some more. I doubt myself and my ability to make good decisions. I doubt my ability to write or photograph or even exist. I miss the community back in the main wordpress.com fold. I miss the likes and the random arrivals who found me by accident in the reader. I miss the way it was. But change is good too. I have all my blogs in one place, I have full control over themes and CSS and everything! I am a web developer by trade, so this is good, this is very good, but was it the right decision? You there, you reading this, you were probably imported as a follower (I’m sorry I didn’t give you a choice in that) so do you like the change? Are you still there? Is anyone there? Did I do the right thing?

squatters

Sometimes when I think about the bees I get a twinge in my foot, right where I was stung. It twinged when I heard they’d come back, along with a shudder of fear right down my spine. Because that day, that day was the stuff of nightmares. Bees everywhere, a sting, and no sleep all. But they live with us now. We co-habit. We have the house. They have the soffits. I didn’t even know what a soffit was until they decided to live in it. Funny word, soffit. So there they are, unmovable, squatting in the soffit, and really, as it turns out, they’re not so bad. I still shower with the window open, bringing the countryside in despite their proximity in their soffit home. And sometime soon, when I think of the bees it will be with a smile not a twinge.

pain

In the silence I think about the pain. I think about the days and days, so many days, since it wasn’t there. One day it wasn’t there, and then it was. And is. Still. Around about 300 days. 300 days of pain in varying amounts. Some ups. Some downs. But always pain to some degree. And there is nothing I can do. Take drugs. Do exercises. Hope. But there is nothing I can do to make it stop right now. There is no magic pill, no doctor will fix me (not bad enough to fix). Nothing I can do. Nothing. Is this who I am now? This person in pain? This person who has to find a ‘special’ chair in meetings because the posh chairs hurt? This person who limps along on bad days? Who moves uphill at snails pace, and wonky-walks back down again? Who takes more drugs than I would have ever imagined? Who is still in pain, despite them? And people offer sympathy (so gratefully received) and ideas of swimming and yoga and osteopaths. But what I need is healing of my heart. Adjustment of my mind. Not activities or manipulations (that cost too much). I need to cease this fruitless railing at the pain. Is that giving in, or just accepting the truth? 300 days of pain. 300 days of moaning. And wondering still, why me?

The Bees

I am fond of bees. Correction, I was fond of bees. I like bees outside on plants and buzzing happily. I like taking photos of them about their business. I do not like them in my house, gathering in the windows and setting up home in my loft. I especially do not like them underfoot. I had never been stung before. I was a bee-sting virgin. Just that one false step and my foot descended on a sleepy bee resting on the carpet. The viscious pain caught me completely by surprise. For an instant I thought I’d simply stood on something sharp, but then it dawned as the pain spasmed through my instep. A bee. One little bee that I had failed to carefully and oh-so-gently remove from my house. A moment of sheer panic – it hurts it hurts it hurts – what do I do now? On hand a loved one with a phone to google … should I pull it out!? Yes yes yes! And then the waiting, will I react, will it stop hurting, what is going to happen? Fortunately not a lot. A lingering achey soreness, but no real damage. Apart from to my mental health … a night spent sleeplessly, anxious about bees underfoot, anxious about the possibility of a bee lingering in my daughter’s bed, her carpet, her slippers … And now I sit afar, lunch-breaking, and hoping that the news of the bees departure is the end of the story. No re-runs please.

cold horror

My nose is full of custard. My head is packed with booze-soaked sponge cake. I am become trifle from this cold. This summer cold that my daughter gave me, after bemoaning her fate repeatedly. Now it’s my turn. My trifle-head may be worse than hers unfortunately, what with the drugs and all. All week my right eye has been inexplicably annoyed with my glasses. My left eye has been twitching (with surpressed rage?). Today the world is slightly slanted. If I take off my glasses the slant increases, so I put them back on in a rush.  My face wants to slide down onto the desk and sleep, but I fear the cardigan-sleeve-shaped imprint on my forehead – the badge of sleepy office workers. And who might pass my corner and spot me here snoring gently. So stay open eyes, I plead, as one twitches rebelliously and the other blinks and blinks and blinks as if to flap the glasses right off me. This is the horror of my situation.