The Fibro Toybox Part II – All things not Barbie

Fatigue feel like being one of those dolls with weighted eyelids. The ones whose eyes are open when they are say up and fall closed as soon as you lie them down. You wake up, lying in your bed and your eyelis feel so heavy you would think that they were weighted shut. You want to open them and look around but it is out of your control. It feels as though they won’t open until someone takes hold of your exhasted form and sits you up.
Next in my toy box is playdough. Not because I’m chunky and mouldable.  The sensitivity which many people suffer with fibro can – and often does – make them shout out in pain at the lightest touch. That is not an exaggeration. It is like being playdough with nerve endings. When playing with playdough it’s so easy to leave you mark on it; if you poke a smooth ball of playdough you’ll almost certainly leave a print on it. That’s how being poked is on a highly sensitive day. Only you can’t see it: the skin looks normal but that mark is felt, and of the poke is hard enough it can linger for quite a while.
My fibro fog makes me a teddy bear. I’m a bit out of it so I want cuddles. Okay, okay that’s not all the comparison I wanted to make there. This one is very simple. Fibro fog just makes me feel like my head is all full of fluffy, fluffy stuffing. Usually I call it candy floss brain but that wouldn’t fit with my toy theme here because who on Earth would want to stuff their teddy with candy floss? It would be sticky and go all mouldy and attract ants. Anyway, the fluffy teddy brain means that I can’t think straight. It isn’t necessarily too distressing for me, a lot of the time I’m just a dopey, cloud brained girl. However, if I’m really trying to do something and I can’t think right or focus it can be extremely upsetting, not to mention embarrassing. There’s not much room for thoughts and clear memories amongst all that stuffing. Of course, sometimes I feel over stuffed and the pressure of it all jammed into my glassy-eyed head give me pressure headaches. Ouchy.
When I’m feeling particularly stuffing brained I can have quite a bit of trouble with my speech. I won’t be able to remember words, sometimes I’ll just stop what I’m saying and others I’ll replace it with a different word entirely. Not on purpose though: that wrong word will just come slipping out of my mouth leaving my conversational partner having to figure out what I was actually trying to say. When this happens, I must be a furby.
And on that note: me way-loh koh-koh.

Just kidding, no more sleep for me just yet. I’ve got a baby to care for and I need try not to turn into a slinky on the staircase.
If anyone has an illness-to-toy comparison to make I’d really love to read them in the comments.

The fibro toybox Part I or Why I’m a Barbie.

Me as Teacher Barbie.

Every time someone asks me about fibro I freeze up a little. What is it? How does it feel? They question and I begin to mumble. I just can’t come up with an explanation that seems adequate. I can never think of an example of what having fibro feels like that I think will possibly make any sense. When I’m not trying to explain my fibro I can come up with various descriptions. I’m still not sure how much sense they make but then it doesn’t really matter when no-one is questioning me!
Here’s a little comparison I came up with lately, shortly after waking up on a bad pain day.

That day I woke up in almost instant pain. My body ached all over and I felt like a doll.  Not the cliché ‘fragile as a china doll’ (although some days that can be an accurate description) but I felt like a Barbie doll. I don’t just mean because I have long blonde hair and a fairly well-endowed chest.
Think about playing with a Barbie doll. Imagine moving her into new positions to enact her sitting down for a picnic with Ken or doing various day to day activities. If you happen to have one nearby why not really try to have her perform simple tasks for a few minutes. You’ll become acutely aware of just how inflexible she is. It used to drive me mad as a child.
You can move her hips backwards and forwards (within limits) but she can’t bend her knees. In fact, I had one Barbie – gymnast Barbie I believe – who was supposed to have flexible joins. He flexible joints turned out not to be as flexible as anticipated. Whilst I was playing with her one day I bent her ‘flexible’ knee. It flexed a bit and then it broke, so much so that the plastic  joint in side it stuk out through her ‘skin’. So gymnast Barbie had to have a home-made knee support and live out the rest o her existence with a broken leg. They can only sit with their legs out straight. Well almost straight: they’re forced into a permanent slight curve at the knee like a pin-up girl pose. She can’t cross her legs to sit comfortable on the ground at that picnic with Ken, she can’t sit normally on a chair.
Her back is a solid length of plastic; she has no smoothly gliding vertebraes to enable her to lean forwards easily. It is completely straight and she can only bend at the hips. Picking things up off the ground must be inredibly tricky for her.
Her arms will move up and down to the sides like she’s doing a funky chicken dance. They’ll usually move a little forwards. Then there are her fingers.  Oh her poor, poor fingers. The basis of my original thought for this post came from her fingers. They’re dead straight and welded together. Try holding your hands like hers, just for a moment. I don’t know about you but I definitely find that uncomfortable. She can’t separate them, she can’t BEND them. Picture her trying to pick up a kettle with her immobilised flipper-fingers. It just looks awkward and painful, doesn’t it? Hard to imagine Barbie getting herself a cup of tea. That is how fibro feels (to me, at least). I have a little more movement than Barbie; clearly in my worst flare up I’m still not melted together with plastic but every movement of those joints hurts, it is a strain. Sometimes the bits don’t move right. I feel almost unreal in my stiffness and mobility troubles.
I am a doll.

7th November

Today is an anniversary.

One year ago today I was I was getting frustrated that the horrible flu I had been suffering for two or three weeks wasn’t showing any sign of going away. I had had enough of feeling extra exhausted and just wanted the horrible nausea to end.

One year ago today I cried and sulked at my boyfriend because I didn’t want a milkshake. Or maybe I did. I can’t remember and I may not have known then but either way it was absolutely the end of the world. I wondered why I was planning to move in with a man whose every breath annoyed me. A man who, with incredible patience, was trying to cheer me up. A man who wanted me to take I little test that I was all but screaming was totally unnecessary.

One year ago today I went into a toilet in the public library.

One year ago today I saw two dark lines.

One year ago today my jaw plummeted, my stomach tumbled and my heart jumped. I was shocked. I was shaking. I had no idea what to do and the biggest decision of my life had to be made.

One year ago today I said the words ‘I’m pregnant’ for the first time. The man with near infinite patience thought I was ‘kidding him’, to paraphrase it politely. He thought I was getting him back for making me take the test.

One year ago today I was terrified as my life changed in an instant.

One year later, I think back and smile.

Right this second my wrist is being gummed by the most beautiful baby boy I have ever seen. He is holding my bracelet and I’m cuddling him tight. I am kissing his forehead as he watches me type. The year certainly hasn’t been easy but it has been absolutely magical. I find it funny just how horrified and confused I felt. Now I can’t even imagine life without my baby boy, or his father. We are family and we made a home.

One year ago today I absolutely made the right call.

One year ago today I started the hardest challenge and the best journey of my life.

Caffeine Highs and Baby Cries

Holy crazy woman at a keyboard, Batman! It’s a blog update! Yes, that’s right fellow super-somethings (everyone is a super-something) I am alive.

Warning: This post is all procrastination and no plot.

What am I doing, you probably aren’t asking? Why I’m blogging in a towel because I just showered away some of my pain from the day. Tango Milk In, you say?! (Just for reference that’s how we say TMI in our house now) Isn’t over sharing what blogging is for? No? Alright sorry. I’ll try again.

Ahem.

What am I doing? You might be but still probably aren’t asking especially if you were frightened off by my awesome towel. I am drinking energy drinks in the way that if I had a tiny shred of sense I would be drinking water. I’m also comma splicing everything I write like crazy. Now you probably aren’t wondering why I’m doing that. I mean the energy drink guzzling not the comma splicing. Well, because I like a huge number of other people am attempting NaNoWriMo this November. Nano is a challenge to write a 50000 word ‘novel’ by the end of November. So far I’ve written around 6000, I’d like to write at least another 1000 tonight hence the trying to over-dose myself on caffeine and sugar. I intend to try and blog through the month about how nano is going for me.

I have had some success in that I’m feeling more awake since finishing my last can of drink and my brain is certainly working a mile a minute on… urm… creative thoughts, however, they haven’t really been about the story that I am writing. What I’ve actually done is think up things like ‘if I became a superhero I would call myself ‘Fibromaniac’. I also sang a song ‘head, shoulders, knees and toes’ then – in order to cater to what seemed to be his currently interest – I reworded it to be ‘toes, toes and toes and toes’. At my boyfriend’s wonderful suggestion I periodically threw in ‘mouth’ as well. Although it has to be said that the singing had less to do with the energy drinks and a lot more to do with the fact that I had to do something make a four month old stop screaming more than an Edvard Munch painting.

For the rest of my evening I plan to continue my nano story and possibly braid my hair into lots of tiny braids. If I manage to do it then I’ll try to post a photo. Not tonight though.

Bye bye!

P.S. This post is going up totally unedited so sorry about any typos etc.

P.P.S. I’m wearing a dinosaur onesie and it is amazing!

Bitstrips and Balancing Eggs

I spent a little while today playing around on bitstrips.com. It was actually major procrastination  from drafting blog posts because I’m such a serial procrastinator that I even put off doing things I want to do. I’ve used bitstrips before to make silly things to send to Scott back when we still lived quite far across the country from each other. I’m sure it used to be more customisable but perhaps I’m being daft.

In my playing around I made a comic to illustrate the odd little way that I think. I’ve probably paraphrased a tiny bit but this is pretty much how it went.

 

The really daft part about this is that I haven’t been able to stop  thinking  about ‘balancing eggs’ for several days. I want to invent them. I have no idea who would want them but maybe I’d produce them as a baby toy because, hey, I’ve got a baby. Don’t steal my awesome idea 😉

 

I was going to make a couple more of these to show just how dopey, forgetful and strange I can be but I just couldn’t remember any other weird things I’d said. *Sigh*. They’ll have to be something to look forward to when I’m less tired.

The Ailment Game

I have a little game. I remembered it in the early hours of the morning whilst waiting for the sleep fairy to grace me with her presence. It isn’t much but I’d like to share it. So here it is, along with the story of its origin plus the benefits I think it could have for people with fibromyalgia. Or people with another chronic pain disorder. Or people with no medical problems at all. It’s like a three-for-one special.

In my early teens my mother and I used to go into town for some ‘girl time’ almost every Saturday. Of course, it involved a lot of wandering around. The walk back from the city centre to our home usually took us about 20 minutes and the majority of it was one long road, uphill. It was dull. We were often lugging shopping and there wasn’t much to amuse us about the rows of houses we walked past. On one of these ventures I complained to mum – as teenagers often will – about something fairly trivial. I’ve forgotten what it was exactly but it would have been something like ‘my nose is stuffy’ or ‘my feet hurt’. And so the game began…

The basic concept of this game will be familiar to pretty much everyone. My drama lessons in high school used to occasionally involve ‘the shopping list game’ to improve our memories. I’m going to be truthful here and say that I hated it. I honestly don’t care if someone bought an imaginary banana which someone else forgot to mention when the bought an imaginary cabbage. Of course, I might just be bitter because even pre-fibro I had the memory of a goldfish and an infantile attention span on top of that.

However, the impromptu version mum and I created I didn’t have a problem with at all. It feels both fun and a little bit functional. All we did was name something that was wrong with us at that moment and the other one would repeat it back, adding a new problem of their own. And so it continued; the list growing longer until we either ran out of complaints or reached home.

 

Here’s an example:

“My nose is stuffy.”

“Yeah well, my nose is stuffy and my feet hurt”

“My nose is stuffy, my feet hurt and I bit my tongue.” – Just imagine how that could sound when spoken out loud; “my dose ish shtuffy, my feet hurt and I bit my thung.”

“My nose is stuffy, my feet hurt, I bit my tongue and I dropped my bouncy ball.”

 

Yes, ‘I dropped my bouncy ball’ was a genuine complaint of mine during the game once. I had to go chasing after it in the middle of a park. It also led to list additions like ‘I feel like an idiot and ‘now my ball is dirty’. I’ll throw in here that I was 19 or 20 at the time and also that I was with my ex-boyfriend that time, not my mother. It’s a versatile little game; one with surprising entertainment value.

You might be wondering why I’ve decided to share this, and what I think it has to do with fibromyalgia. So here are the benefits from the ailments list game.

People seem to often think that those of us who suffer from fibromyalgia (or any other invisible illness) enjoy complaining. We know that isn’t true but what is true is that sometimes it feels good to be able to express your problems. That’s true for people with or without an illness. This game lets you vocalise your problems in short phrases. They’re off the cuff and off your chest.  The best bit is you’re doing it in a fun way. The game has a tendency to turn a bit silly which is a nice distraction from the discomfort used to begin it. There’s only so long you can have serious sounding problems like ‘I’ve pulled my calf muscle’ before you move onto things that sound silly like ‘my hands are buzzing’ or ‘I don’t like that garden gnome’. Once those sort of comments start coming out it becomes tricky not to laugh. We’re all aware of how great laughing feels.

 

I’d like to take a moment here to complain that ‘my boyfriend is trying to distract me by whispering the names of the famous five in the hope that I’ll accidentally write them’. Go on, add a problem to the list which competes with that 😉

 

Plus, as with the ‘shopping list’ game, you have the benefit of a bit of a memory workout. You could find that you remember a longer list than you believe yourself capable of but I doubt you’ll notice that because you’ll be too busy laughing and trying to think of what else you can possibly complain about. Imagine the feeling of struggling to think of a problem. Doesn’t that just sound like a nice rarity?

I hope you give this game a chance when an opportunity arises.  When out on a walk or during a car journey or whenever you’re with someone and want a short time filler. Share pains and discomforts and for once actually enjoy it. Take something serious and make it silly.