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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Symbols of my Life

I was considering the Weekly Photo Challenge of ‘Symbol’ and wondering how this could be applied in my macro world. I could have taken photos of my engagement ring, but that’s not very original, so in the end I decided to think about important moments in my life and photos that symbolise them.

This was just over 3 years ago, when I’d just about gotten over a really difficult couple of years and was trying to feel more positivity about the future. I took this photo of myself with a remote shutter, with the camera on the tripod. I was trying to capture myself twirling, letting go of the past and its heartbreak, and feeling the joy (it was my birthday). It symbolises the end of one era and the start of a new & better one.

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This one is me with my camera a few weeks later. I was in Bournemouth with my sister and my children and you can see that the positivity was working, I was beginning to find myself again and enjoy life. And of course I was really getting into photography. I’d had the camera for about 3 months at this point – my first proper DSLR – and I was finding my niche. (Thanks to my sister for this photo)

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And then a wonderful thing happened… through blogging I met a lovely man 🙂

Here’s Bruce and I out for a walk during our first weekend together. This is symbolic, as I’m sure you can imagine, of the beginning of our relationship, when we met in person for the first time after getting to know eachother online.

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And here we are nearly a year later – happy and together, engaged and sharing a home. This one symbolises the real, solid, happy partnership that developed from the virtual, online beginning.

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And just to finish off … this one is now – just a few minutes ago 🙂 I dragged poor Bruce outside to take a selfie with me so that I could add it to this post.

This one symbolises the future.

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In response to The Daily Post’s writing prompt: “Symbol.”

Pony Love

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As you know, if you have been reading for a while, my daughter is horse-mad. I spend many weekends watching her ride in lessons and competitions. It’s her ‘thing’. This is her in the middle of a competition at the weekend, between rounds. She looks like she’s communicating telepathically with the pony! I decided to have a play with this photo so it ended up black & white. I think my daughter’s horseyness is rubbing off on me as I caught myself wondering if I should give it a go … I’ve never so much as sat upon a horse, and I used to be quite scared of them! I’m not sure, but I am becoming rather fond of these horses and ponies.

Bee Memories

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Here’s a lovely little bee for you from a week or two back, before the weather turned wet and blustery.

Remember the bees? They swarmed in our house, which was a tad unfortunate, and then set up home in the soffits of our roof. We grew quite fond of them after a while as they didn’t bother us once they were settled.

Sadly their nest has since been overtaken by wasps which insist on coming into our bathroom on a daily basis! We’ve had to resort to insect-killing spray 😦 Hopefully soon the weather will get too cold for them and we have read that they rarely return to old nests. Fingers tightly crossed that’s true – I’m so sick of having to warily enter my bathroom incase there is a wasp buzzing around in there.

I remember our bees with fondness … much preferable to wasps!

On typewriters, of romance

 

Today we have forgotten
whose shoulders we stand
 
On typewrites, the greats works have been produced
but on occasion, mediocre sequels too
let us not be an unkind sequel
 
Typewriters were the combination
of engineering meeting out romance and the mundane
Love letters producing the most careful of tears
“My dearest darling”
 
Letters to mothers and wife’s
tears of such loss – “we regret to inform you”
Your son/husband was lost
 
There were Clanks and Clunks
of success and failure
a smell of correction
liquid paper to cover
 
I cannot produce great works
of love, but I can lease my heart
for an undisclosed time
 
I can stand on the shoulders
of Shelly or Byron
and tell you
 
That the shore in no longer lonely
‘so lift me as a wave, or let me
bleed as a cloud’
 

Let me type this romance
on a keyboard, though lifeless
with no typewriter action
it can still produce, thus
 
‘face the thorns of life
together, pricking neither thumb
nor forefinger’
 
Let us carry it as one


~~~~~~~~~~~~~~~~~~~~~~~~
Bruce Ruston 2014

Indeed standing on the shoulders
of Shelly and Byron

Guest Poet

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.

life

I feel solid
strong
permanent
yet
this life
is fragile
the end
unavoidable
unmentionable
undeniable
abrupt
and when it comes
will I be ready
have I lived
truly lived
have I
left my mark
or will I fade
forgotten

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.

unabridged

within these walls
my heart’s desire
my soul’s requirement
family remade
from ruin
with love and laughter
playfulness
tomfoolery
where parsnips and bacon
are as bouquets
received with joy
affection and silliness
are one
and with my hand in yours
we are living
unabridged

the passing storm

the tide is turning
     waves are building
          higher with each day
     a build up of
          tension
               stress
          until all is
               drowning
                    sinking
                         suffocating
               overcome by
                    obligations
                         responsibilities
                              a task list so long
                                   its a novel
                    so many things
                         so many pills
                              so many, many things and pills
                                   all piling up so high
                                        so high
                                             so very, very high

     

and
crashing
smashing
down

     

     ’til I’m left
     just afloat
     on top of the swell
     treading water like hell
     to keep up my head
     so my face can tell lies
     about ‘everything’s fine’

     

and then later

     

in your arms
the dam bursts
no lies only truth
and there will be tears
many tears falling fast
’til the beat of your heart
and the warmth of your love
sooth my life-battered soul
into calmness and peace
as sleep forgives all
till the morning

my day

rising
into the summer
of your nearness
you are a vision
bearing tea
a balm to my tired eyes
and dry throat
then leaving
for the daily grind
a wrench
of separation
tearing me
from your side
and later
at the edge of the day
you feed me bacon
and know my
heart

to you

in this life that I live
   with its ups and its downs
      with its tears and its frowns

when I’m often in pain
   and feeling so weary
      so tired and dreary

in this wild head of mine
   where the worries swirl round
      anxieties abound

where golden honey’d glow
   can swiftly change its hue
      to deepest darkest blue

in this life that I live …

      there’s YOU

and no matter what
   brings me down
      you always
            lift me UP
               ’til I’m flying
                  above all the clouds
                     and I’m happy inside
                        where it matters the most

I can’t tell you
   enough
how you changed me
   for good
and how precious
   you are
how I love you
   so much

so much more than too

         x