#WhyImNotSleeping Chronic Memes

There was a Tumblr some time ago that touched a chord with us as parents. It was called Why My Child Is Crying. It saw the funny side of situations that make so many parents want to bathe in wine until it goes away. Here’s a few choice examples :

There was something about those parents sharing the photos of the realities of parenting a small human that made us feel a bit better about how we stumble blindly through parenthood hoping we don’t mess them up too badly. So that got me thinking. Surely there should be something similar for those of us with chronic illness who have the option of drowning or seeing the ridiculous & amusing in our situations. The thing that gets to me the most is my sleep pattern (or lack thereof), so here is is, #WhyImNotSleeping is now a thing. Tweet me your photos & I’ll collate them on here.

For now, here’s my own personal collection 😴

Perhaps there’s a noise in the room…

Or because of our nightly 1am visitor

Or maybe it’s because my friends are also nocturnal…


Finding humour in my strange little quiet & low lit world certainly makes it a nicer place to be. So, Why aren’t you sleeping?

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#spoonie #blogs about #chronicillness (hashtag city)

See that? That’s my final spoon flying into the distance. Off it goes along with my ability to appear like I’m coping.

A year ago, I said I’d be happy if I made it to Christmas with my job and life in general in tact. I pushed for medical help & I’m the end paid for it as it was not forthcoming locally.

At Christmas, I was determined to make it to the end of the year (academic, so July. I know, us teachers even mess with the calendar). Since then, the liquid food is almost gone & I’ve gained most of the weight I lost (meh, would’ve preferred not to, but health over flubber). By my own criteria in two weeks I will have won. Made it to the end. Two short weeks currently feels like a lifetime & I’m not wholly sure I’m going to get there.

Let me tell you about EDS fatigue. I’m writing this whilst I clock watch because in 15 minutes I can take more painkillers. I’m exhausted, but every time I lay my head down I’m jolted awake by the pain in my legs & shoulder… & neck. I have a migraine brewing at the base of my neck & pushing against my eyeballs. 13 minutes.

I took on too much this week (normal teaching + new form induction for year 8 + year 5 taster day + parents evening). Tomorrow is Friday, but also sports day #2. I’d sent a concerned email to PE about my ability to trek across the field and through trees in potential rain to the athletics in my powerchair, but was assured that the field was totally accessible and the weather would be “hot and sunny”. Actually, it was chilly and drizzly and whilst the powerchair did make it slowly this was not without having my bones shaken out of place to a point where I took oramorph at school for the first time in several months. I have to do this again tomorrow. The fear of adding to current pain levels combined with zero spoons = no sleep and rising anxiety levels.7 minutes.

The question should be asked at this point, why don’t you just put the blog down and get some sleep?

Well, here’s the thing about fatigue and EDS. Imagine you got up at 4am (bleary & a bit confused). Now stand up holding cans of beans in each  hand – raise your arms & keep them there… how long? Well, all day. Gravity isn’t working in our favour – where connective tissue fails, simple lifting of your own arm can be exhausting and eventually painful.

Now you have another tin strapped to the back of your head – tilt your head back and look at the sky. Same thing – All. Day. Spines are there to keep us upright. Unless the connective tissues are lax meaning that sitting up straight, or holding your head up is akin to doing situps all day. I wobble between focused controlled posture & slumpy withered flower.

Finally, get home and drink three cups of coffee before bed because your autonomic system is wrecked and thinks it is bloody hilarious to release a shit tonne of adrenalin into your system as you try to rest. Couple this with overnight hives due to mast cells chucking out histamine in reaction to the drugs that keep you from becoming one of the zombies from 28 days later through sheer pain levels, and EVERYTHING IS JUST PEACHY.

So yeah, when I grit my teeth and sing song “good morning! Yes I’m fine thank you. Nearly there!” at you in the morning, I’m doing it to hide the rocking quietly whilst I do mental battle of “I can’t do this anymore…” with the “yes we can!” chant missing in action. 

Times up. The cavalry has arrived.

Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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Testing 123

This weekend is my final chance to make utterly sure that I want to return to my GP and hand back the Tramadol. I’m also going to hand over these blog posts as they are more “at the time” accounts. (Like childbirth, after the event the more unpleasant bits are blanked out).

We decided to wait until Friday night to give tramadol another go at night after last week’s lack of sleep.

I took 100mg at 9.30pm alongside the usual gabapentin. On previous nights I have taken 60mg dihydrocodeine and 2 x 30mg/500mg co-codamol which takes away just enough pain to sleep from 11 ish until 3, then with another 60mg of dihydrocodeine I get through to the morning.

It’s 2.30am and I’ve not got to sleep yet. My right hip is throbbing and my right knee popped out as I turned over. There’s throbbing and pressure pain all down that leg. My lower spine & pelvis is burning, although the sciatica remains at bay. Higher up, my mud back aches as do my shoulders – my left shoulder is sharp and  stabbing as I move (from my collarbone being slightly out and won’t go back in easily). I have a headache that is more of a neck ache that is hitting the back of my head.

I’m on a definite 9 on the pain scale right now. I’m blogging both for reference and as a tool to remain calm. I’m using breathing techniques to control my breathing and remain in control of my pain.

2nd dose of 100mg tramadol taken at 2.40pm.

Ok, dose 2 had more effective. I slept on and off until 7 this time and woke up with my teeth clenched so hard that my jaw aches (it was already sore as it had popped out at school on Thursday ).
4 hours broken sleep is not enough though, and I shouldn’t need to be held like a small child just to get though the pain.

My leg has dulled now, my mid back pain has spread out to my ribs & my elbows have joined in with my shoulders. However, I think now having done this experiment under a number of conditions I can safely say it doesn’t work for me, but I’ve given it my best shot.

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It’s 4am, it’s dark, it’s time to play Name That Pain!

Sod it. If we have to go through this again, let’s make it a game show.

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What’s behind door number 1?

This is the pain that woke you up through the painkillers. It’s sharp,  it’s yellow, it’s because you ate too much broccoli. ….  it’s your intestines!

Let’s see what you could’ve chosen behind door number 2.

This could be from typing or pushing your chair. They’re sore, they’re stiff, they’re swollen,….. it’s your fingers!  (But only on the right so type with your left)

What about door number 3?

You coughed too hard last night & now it pokes you when you breath. It’s sharp, it’s red, it’s a bit disconcerting. It’s your rib!

Now let’s take a look at the conveyor belt of “the usual aches”. Actually, you know what? This game sucks. I’m changing channels.

Please don’t wake me, no don’t shake me….

On tucking my little people into their beds, I felt a pang of jealousy. Not for their sweet innocence, not for their love of all things Narnia (or banarnia as they’ve decided it is), not even for their array of funky onsies. I was jealous of them being tucked up in bed with a book. Being warm and snugly, and ready for sleep. At best, I not very good at autumn weather (shocking at winter) – I’m a summer girl and these dark, damp days are just not my thing.

So, against all grown up dictation that 8pm is way too early for sleep, I’ve thumbed my nose to the world, curled up in bed and selected a good book.

I’m putting money on the germs making a virusey appearance in the next few days.

#5minutefriday – musings on rest

I have five minutes to write without editing or really overthinking what I’m saying. Whatever appears on the topic goes down on the screen…

Join in with Lisa-Jo Barker’s Project here.

This week’s topic? Rest.

GO

I need a rest. I actually look like the Corpse Bride.

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I actually have those scary staring eyes. The last month has been busy beyond belief and following two weeks where the usual days occur (7am – 7pm) Monday to Wednesday, then Thursday and Friday have started with me leaving the house at 7am and not returning until nearly 10pm or later, I am physically knackered. Mentally, I’m not sure. If I think therefore I am, I’m not sure that I am. Maybe I’m so tired, I’m not really here….

But what is rest? I have daydreams at the moment of curling up on a pile of furry rugs and just sleeping for days on end. I have caught myself occasionally whilst I’m marking work wondering if I could just put my head down for five minutes…. Just on the desk….. Or just laying down in the floor… Just because gravity is extra heavy at the moment…

What I need is sleep. But not the sleep where I am analyzing test scores or coursework grade boundaries in my dreams. I need the sleep of the dead. The brain dead. Or to sleep like a frog – quietly soaking up the surrounding heat and occasionally peeling open an eye to survey my surroundings. With a weekend packed full of kids activities, there’s not much chance of sitting around on my lily pad.

Still, as they say “a change is as good as a rest”. I’m pretty sure sleeping for several days is better than a change…

STOP.