The realities of CFS and Endometriosis
On days like today, bad days, blip days, whatever you want to call them, I wake up and wonder how I’m going to get through the next hour, give or take, until Ethan goes to school. Except today I’ve been awake a while, already having cycled through the 60 minutes routine 4 times.
0.55
1.49
4.19
5.01
Add a.m to those numbers and you have the times my mind recorded on each occasion I looked at my phone to check the time. Just get through the next 60 minutes and then make a plan for the following 60.
5.01 a.m
Nausea. Pain. Combined they’re an interesting cocktail.
Tackling pain is usually defined by medication, heat, and rest until it passes, or atleast abates enough for me to be able to continue my day. But I have nausea too, from both pain and hunger. I daren’t take the meds because they sometimes make me sick.
I already feel sick, I don’t want to feel any worse. Addressing the hunger issue is usually straightforward.
Eat.
Simple, right?
Except nausea. Eating will make that worse.
So I’m stuck in a pain, nausea, hunger loop, unable to sleep as the fickle combination prevents my mind shutting off enough to allow it.
I can hear the advice now….have a snack, maybe some dry biscuits, at the side of the bed. It’s good advice, sensible even. But CFS loves to play it’s game of complication, and on bad days, blip days, sometimes even good days, just the smell of food of any kind, overwhelms the senses, and my stomach lurches. So I don’t have anything in my room that may trigger that response.
Self preservation, because nobody else can do that for me.
Sensory overload.
Sight, sound, smell are the three that are affected the most.
Sight.
I love the dark anyway, but this love works in my favour for too much light hurts my eyes as I squint against it. I can tolerate candlelight, though. Early hours means light is low, thankfully. The rain once again fell overnight, clouds hang ominously in thd sky, my allies against the brightening dawn.
Sound.
Luckily early hours waking isn’t punctuated by noise, but as the day begins in ernest the sounds collaborate, and my head begins to pound.
Smell.
The most affected of my senses, the most sensitive., and I calculate what I must do that involves the olfactory.
Make the boy’s breakfast. Euch, grill, toast, margerine, jam. Just the thought of it makes the bile rise.
Feed the cat. Opening a tin of cat food is the very last thing I want to do, but domestic cats are dependent upon our care, and not feeding them is not an option.
Washing up dishes still in the sink from last night.
Hmm, a funny one this given I can almost hear the cacophony of ‘well, why didn’t you just do them last night?’ Another day I may tackle that question, but not today. It isn’t encumbent upon me to educate the owners of the ignorance which underlines that sentence. Neither am I obligated to explain myself to those whose minds are already closed.
Doing dishes equals washing up liquid, equals smell, equals stomach churning nausea, equals headache that sticks around all day.
So.
The dishes remain by the side of the sink.
Both cat and boy are fed, both at a price.
Complications;the boy’s mind is on next week, and he’s feeling ill. And now I’m wondering how I’m going to get through the next 14 rounds of 60 if he stays home from school.
Sensory overload preempted.
Noise, no break, loss of control over taking the time I need to do what I can to manage the symptoms in order to get through the day.
I have to put him first, because parent, because responsibility. I tell myself I’m a bad parent for hoping he leaves, as he does each day, at 8.09a.m. That 8.09 a.m is reached and silence, peace, calm arrives in it’s wake 60 seconds later.
Guilt.
Guilt stamps all over the pain and the nausea and the sensory overload, and the room spins.
He makes the decision to go, reassured by my assertion that school can ring me if there are any problems, that I’m home all day if he needs to return.
Relief. More guilt. Stomach lurches, head explodes.
I mentally calculate, even as he opens the door to leave, the items I need around me and with me to get through the next 60 minutes.
A drink, as food still isn’t an option.
A hot water bottle, although where to apply the heat, as pain is a whole body thing today, not just abdomen confined.
Duvet…*wry smile* there’s always a duvet downstairs.
My phone incase school need to ring.
Do I yet dare take the pain meds which may offer some relief?
Closing curtains to block out the light of day.
Candlelight, from which eminates tranquility
Kitchen equals food equals smell equals stomach churns, but the kettle won’t boil by will alone, hot water nottle cannot fill itself, pain meds cannot remove themselves from packets, drink cannot pour itself into a glass.
So that is where I am now, mentally trying to block the olfactory in order to get myself the things I need, the things without which I will be worse off for.
This isn’t catastrophising, this is the reality, an every day reality…or rather a small, literally presented slice of it.
I’m tired now.
Pain makes me cold, fighting the pain exacerbates the fatigue which loves it’s endometriosis companion.
The next 60 minutes are crucial, how they play out will define my day.
