Celiac disease, such fun

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My dearest bloggers,
If you’ll indulge me for a few minutes I’d like to take a hiatus from the book posts & poems to talk about something different. Something that has become uncomfortably close to me very recently.
You wouldn’t know this, but I have spent a fair portion of the past decade sick. This has ranged from nondescript ick feelings for several weeks at a time, my immune system attacking itself for an unknown reason (seriously, I baffled my gp for a long time), having such bad Raynauds disease that I was put on meds for 3 years, & having an awful digestive system. The digestive issues led to me being tentatively diagnosed as wheat intolerance about 7 years ago. due to this I have lived a mostly wheat free life since then. But I haven’t been really getting better.
In March of this year, I was finally diagnosed with celiac disease, after 6 months of new symptoms & fresh hell. The GI doctor said yup you’re celiac, my own consultant said yay we have a reason for basically all your symptoms ever, they were both happy & told me to go live a gluten free life & be well.
Except…that’s not how that works.
Now I’ll admit, I thought that was how it worked, I had no idea what to expect & thought I’d just eat the right stuff & be better. Well that’s not the case.
Since my diagnosis I have definitely been better in terms of stomach pains, bloating & the random vomiting I so regularly suffered with. What I didn’t realise is that there are other symptoms to celiac disease that simply will not go away.
I’ve had fatigue before, that crippling I-cannot-get-out-of-bed fatigue that I put down to tiredness from working mad hours. What I have now is what a dietician friend called ‘gluten withdrawal fatigue’. After talking to her & then searching the gluten free community online, I’ve discovered that this may never go away. I may have this a couple of times a week/month as standard. And let me tell you, it is hell.
I’ve had days where the effort of getting out of bed is to much, when I cannot fathom getting up the stairs to go to the bathroom, when I have to stop & rest on the street for a minute. I cannot describe it without tears forming in my eyes.
Apart from this, I’m still getting stomach tenderness, something that I’ve frankly been living with for so long that I’m completely used to it.
Actually there’s a plethora of symptoms that I could go through & bore you with, but I won’t. This is not a pity party. This is an educational party. I knew nothing about how horrible celiac disease was going to be until I was diagnosed with it & trying to live with it. & it’s only been 6 weeks really. But I did, genuinely think I was going to start to feel better straight away, & have since discovered it will take months & months, & may never actually happen.
There has been a lot of frustration since then, I will admit. I have been so angry. I thought I’d be better, but I’m not. I thought it would be instant, but it won’t. It’s clear that very little is known about this disease by health care professionals, unless they have it. & it is a disease, something I have to wrap my head around. It has its own agenda. & the only management for it at the moment is to stay away from gluten in my diet.
My doctors have been taking it as a sort of victory – yay we finally know what is wrong with you after all these years, celebration – but that’s not how I feel. I now have two autoimmune disease at work in my body, hitting me at every turn. & though there is a certain relief that there’s a reason behind me being ill all these years, it doesn’t make it better.
Do you know what celiac disease does to the human body? Coz I do, I know now. & it’s horrible & it’s exhausting, & I didn’t know that it would be constant.
It’s so frustrating, but I’m sure that once I wrap my head around it, I’ll be able to cope better. Right now, especially because of the fatigue, there’s a lot of tears, a lot of anger. But I’ll get through that, I’ll make a plan, & I’ll struggle through like I have been for the past decade.

NaPoWriMo day 30

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A spark,
a brief flash of flame
in a darkened room.
An idea flares with it,
the spark lights words
in the back of my brain
& sentences begin to flash
& flare inside my mind.
I reach for pen
for paper
to catch the words as they flow,
lest I forget,
& lose the light,
wasted before it fades
back to darkness.

NaPoWriMo this year has been different for me than previous years. I had less time to work on the poems daily, they were more caught as they poured out & recorded on the app rather than paper which is a first for me. I followed none of the prompts this year either but I still greatly enjoyed thinking in poetry, which I do fairly often in fairness! Altogether an enjoyable month of words. I hope you all enjoyed it too🙂

NaPoWriMo day 28

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Grandfather clocks always appear to me
to add an elegance,
an unspoken rapport to a room.
It was something I always coveted,
a polished mahogany monster
hulking in my hallway
chiming the hour in tinny bells.
At night it would cheerfully
mark the passing hours,
by echoing across the rooms
of my house.
I find now a sad grateful part of me,
that is content without a beautiful grandfather clock echoing
its deep tones,
when in the wee hours of the morning
as I lie between waking & sleeping,
I cannot settle with the minute ticking
of the wristwatch at the bedside.

NaPoWriMo day 27 – A small homage to tea

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Tiredness drags me down the street,
like a child with a heavy coat & schoolbag
slouching towards home.
My bones appear to me to ache
through my skin,
radiating fatigue.
I pull myself to the kitchen
to find tea waiting;
the Irish cure-for-all.
I envelope the mug with my hands
& sigh, feeling relaxed at last.

NaPoWriMo day 26

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I share a sunbeam with the pets,
the dog spread- eagled in front of the glass doors,
the cat a more prim figure sitting upright but enjoying it no less.
I move my kitchen chair to feel the heat with them,
a rare snatch of sun in this grey April.
We three turn our faces towards the light & the warmth,
& are one,
just for a moment.

NaPoWriMo day 25

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When my day is fogged over,
threatening rain,
clouds fat & heavy with moisture
beginning to drop
on my weary head;
you are there,
with soothing hands
to cool my fevered brow,
soft words to ease my racing mind,
protecting arms to hold me.
I rely on you like no other,
a fact that frightens me
but comforts me too.
I lean into you,
close my eyes
& breathe clearly
for the first time today.

NaPoWriMo days 22, 23, 24

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I’m a few days behind with posting, but not with writing. Indulge me while I play catch up🙂

Day 22

The taste of salt
on my lips
wakes me,
my face is tear stained
and damp.
I turn to you
with words of my nightmare
and you envelope me in warm arms
until I sleep once more,
safe against the bad dreams.

Day 23

I am in a temper,
railing against myself
against all in my way.
I am soothed,
without words
by your presence,
a warm furry body
pressed against me
in comfort.
I steal a hug,
a cold nose pressed
against my ear,
& am comforted.

Day 24

The weekend slides away
like leaves on water,
my free time spent
in a relaxing haze
before the week comes round again.
I waste my time
on books, tv, the couch
& moments with him.
Not waste,
you might say
spent wisely,
penny by penny
given to a precious wishing well
of time, in happy nothingness.