Thursday 20 August 2015

Stress, and Struggles, and Making it Worth It

I'm back already!  This is because I've got things to tell you all about.  Some of it is even about knitting.  Quite a bit is about penguins.

So we'll settle in by starting with the regulars.  I haven't finished anything in the last week or so there's no FOs.

WIPs

I've mostly been working on the scarf I'm making for Stephens mum.  She has now arrived in Sheffield, but I'm nowhere near finished.  She says she doesn't mind :)


My second WIP is a small blanket, designed to fit a pram for a newborn.  This will be for my new niece or nephew, due this winter.


The pattern is a simple basketweave, with a moss stitch border.  The first time I made a blanket like this was before my first niece was born, and I had only just returned to knitting after a 20 year break, so I stuck to a simple pattern, and worked each colour of square separately.  Then of course I had to sew them all together afterwards.  I hate the sewing together bit.  This time I'm going to avoid all the sewing by making the whole thing as one, and working the different colours with intarsia.  I hate intarsia too, but I hate it marginally less than sewing up!


Stash Enhancement

I haven't got any new yarn to show you!  For a change I haven't broken my yarn diet!

I have found some yarn though.  During the continuing effort to clear the dance studio I found a bag full of Patons Fab.  I remember buying it to make hair falls to be used in dance costuming, but they never got finished.  Now I have to say that I doubt very much I'll ever find a use for this much purple acrylic.  If you think you could make good use of it, then please let me know, I'll gladly donate it to a good home!


A bit of a disaster

My new yarn cave doesn't just contain yarn.  It also holds a reasonable number of my books.  Some are craft related, but most are a strange selection of fiction.  The room is small, so I'd saved floor space by stacking 2 bookshelves on top of each other.  I hadn't taken the advice of affixing either bookcase to the wall with those handy brackets that always come in the flat pack.  The result was that this happened:


For those of you adept a identifying book covers, I'd appreciate it if you'd keep any judgements on my reading materials to yourself please :p  Typically, the absolute trashiest of my collection are the ones most visible!

The worst part about this happening was that Stephen was sat on the edge of the bed at the time, and ended up with his foot trapped between the bed and the bottom of the bookcase. This of course then resulted in my driving him to A&E, and spending 4 hours waiting to be told that his foot isn't broken, only badly bruised.

Also, a full bottle of Clinique Happy was broken during this incident, and I suspect that my yarn cave may smell of this perfume for the rest of eternity.


A difficult achievement

Just to add to my distress at the events detailed above, they happened in the middle of the night on Sunday.  I was already exceptionally tired and sore from my efforts on Sunday morning.

You may recall my rant on the subject of chronic illness - A Game of Spoons.  Well, I don't just rant about it.  I live it.  I try to do something about it, for me, and for everyone else too. 

The doing something about it for me is that I try my hardest to remain active, even though my body tries its hardest to do exactly the opposite.  I run whenever I can, for certain values of "run" anyway.  I run slightly slower than most people walk, I aim to do this 3-4 times a week, and on average I manage 1-2 times per week, but for me that's doing really well.  It's doing really well because I have Ehlers-Danlos Syndrome.

The doing something about it for everyone else is that I try to raise awareness of the condition.  I tell you guys about it here, I share information about it on facebook, I tell anyone who will listen basically! and on Sunday last week I took part in a 5k "fun run" with all sponsorship going to help EDS Support UK.  

I'm a big girl, it's taken over a decade since my symptoms started to become a problem for me to get this tentative diagnosis, and for quite a lot of that time I hid in my house crying over the things my body could no longer do, and avoiding anything that caused the pain to get worse.  If you do that, you gain weight.  I gained a lot of weight.  I don't think EDS Support UK make their T-shirts in my size.  But they do make them to fit Kelly, so he got to be my EDS flag for the day:


We got to tell everyone there why we were running, because the chap with the microphone came around the crowd before the warm-up.  He was impressed that we were supporting a charity that he'd never heard of before, and it felt good to know that at least the people there had learned something about EDS that day.

As you can see, it was a sunny day.  The weather report had assured us temperatures wouldn't get above 15°C.  It was already 20°C when we left the house before 10am, and it just kept getting hotter.

On a good day, running 5k is hard, but well within my capabilities.  Sunday wasn't a good day, and the heat did not help.  I struggled.  Before we reached the 2k mark I had to stop and walk for a bit.  It wasn't the effort, or even the pain, it was just the heat!  I honestly felt as though my brain was being boiled.  I couldn't see straight, I felt dizzy, I felt sick.  I started crying as I walked, telling Kelly how much I hate my body.  I hate knowing that it didn't have to be this bad!  If I'd got my diagnosis 10 years ago I could have kept the weight off, I could have started my physio exercises before I'd done 10 years of damage, I could have slowed down the progression of this disease in my system.

That very fact though is what kept me going.  Well, that and Kellys constant reassurance.  If I can help raise awareness now, help fund research now, then maybe by the time my niece and her new sibling grow up they won't face the same sort of off-hand dismissal by the medical profession that I have.  They will have a better prognosis than I do.

So I kept going.  We walked through a bit of shade, and I summoned the energy to run again.  Probably for less than 1k, then we were not only back out in the sun, but also running up a hill.  I was so dizzy I was afraid I might fall in the lake.  So we stopped and walked again.  At the 4k marker we started running again, and we kept running until we'd crossed the finish line.  The chap with the microphone recognised us, and we were cheered through to our medals and the all important bottle of water!

There was an icecream van near the finish line, so Kelly bought himself an icecream, and an ice lolly for me.  I collapsed on the grass, everything from my ankles to my neck screaming in pain, but I didn't care, because at least I'd done what I needed to do.  I ran this race, I raised awareness, and I raised money for a cause that I really believe in.


The icecream wasn't really as big as Kellys head, I promise!


Then this morning (Errm, yesterday morning now, as usual my insomnia means I'm writing this in the early hours) this arrived through the post:


Somehow knowing that the effort is appreciated really does make it feel so much better.  Just remind me of that when I get to the next run... and keep your fingers crossed for me that I'm having a Good Day that day!

Delayed Birthday Presents and Penguins

Errm, so yeah, sorry, a lot of that wasn't about knitting.  Important to me though, so thanks for reading it!  And this is about knitting:


As I said up near the top somewhere, Stephens parents have arrived for a visit, and they brought my birthday presents with them :)  This one is to be hung up in the new Yarn cave.  Oh, I should also say that the bookshelves are now repaired, and back in position, and bracketed to the wall this time!

They also gave me these (again, ignore the books, they're just what was to hand for demonstration purposes when I wanted to take photos):




One of Lizs friends is apparently also a knitter, and she was clearing out some things and found this:


She didn't want it any more, so it has been donated to me!  Which is perfect, as with the trip to Shetland next month, I'm particularly interested in Shetland lace work, and Fair Isle knitting right now.  I've picked out a couple of favourites from this already, although I'm not sure about this chaps facial hair:



My sister came to visit not long after I'd written my last blog post too, and as well as another gorgeous grown-up colouring book, she brought me something that I love, even though it's purely decorative at this time of year.  By the time I get back from Wool Week you can bet I'll be even more grateful for this:


Finally, to cheer me up after the pain and stress of running such a difficult 5k, Kelly bought me not 1, but 2 presents from a little artisan craft shop in Rother valley Country Park, which is where the run was held.  The first present caters to my crafty side:


Apparently the card was added by the vendor.  Possibly because she got the impression that I really like penguins for some reason, but I suspect it was actually because she quite fancied Kelly.  I can't be sure though, because the part of the shop where Kelly bought these was upstairs, and by then I could have flown to the moon as easily as I could have climbed those stairs!

The second present is just perfect for helping me achieve a comfortable sleeping position.  Often my shoulders and hips sort of collapse in on themselves if I sleep on my side, which causes pain, which wakes me up.  A body to snuggle helps, but since my insomnia often means I have to catch up on sleep during the day, when normal, functional members of society are at work, this isn't always feasible, but now I have this:


This is a lovely, squooshy, but firm cushion, and it's perfect to support my saggy joints.  Plus - Penguins!

I do believe that's it for now.  Thank you for your patience with the excessive amount of this post that has been devoted to my illness.  TTFN my dears!

Tuesday 11 August 2015

Presents, and moving, and sewing, oh my!

Hello my darlings!  I have so much to tell you, I just don't even know where to start!

So I'll go through the regular WIPs, FOs, and stash enhancement first, then I'll tell you about the excitement of relocating my yarn cave, and my new, teeny, tiny, sewing machine!

WIPs


I'm down to just 2 active WIPs right now.  One knitting, and one spinning.


This is a Countess Ablaze custom blend fibre called Aristocratic.  It's Merino, Shetland, Alpaca, and Tencel.  I'm aiming for around a DK to Aran weight, so that I can use it to make a nice warm hat.



This is one of the many birthday presents that I've been working on for the plethora of summer birthdays.  It's for Stephens mum, and although her birthday was actually over a week ago, I have until she comes to visit in a week and a half to get this finished.  I've done hardly anything with it in the last month, due to a combination of too many other things  to do, and a massive pain flare up that seriously curtailed my effective knitting time.  You can start to see the shape of the scarf emerging though.

The yarn is Araucania Botany Lace, and the pattern is Hypernova, by Arlene's World of Lace.


FOs


As I've mentioned above, my health has been annoying me for the last couple of weeks.  You probably got that idea already when I wrote the big ranty rant about chronic illness.  As far as my crafting goes, it has slowed me down a bit, so despite the fact that it's been a whole month since I last showed you what I was working on, I've got less to show you than I'd hoped.  Still, there's enough to be getting on with I think.


This is Finns sweater, finally finished.  I'm really pleased with it, and yes, I had plenty of yarn in the end.  This took me just a few yards over 5 balls of Drops merino DK, to knit the age 4 size.  I thoroughly recommend the pattern, which is Abernathy Sweater, by Terri Kruse.

There was drama and distress during the final stages of making this, as I managed to snap one of my favourite needle tips :(


These were my 4mm Knitpro Dreamz.  Part of a set of interchangeable needles that Stephen gave me last Christmas.  I was already sore, and tired, and annoyed at how hard I was finding it knitting at all, then this happened.  It really upset me :(  Fortunately I do also own a set of Knitpro Symphonies, which are the same as the Dreamz, except they don't have the really useful identifying colour scheme.  I had to hunt them down, as they were still in one of my many hibernating WIPs, and due to events that will be discussed later, locating said WIP wasn't as easy as it might have been!  But I did find it, and I did finish the sweater.

I'm hoping to make it up to Newcastle at some point in the next few weeks to deliver this, and Ollies sweater too, as both boys have their birthdays this week.


I couldn't show you these in progress, partly because I hadn't actually cast them on before my last knitting post, but mainly because Kelly does read my blog, and I wanted these to be a surprise.  He liked the colourway when he saw the socks I made for myself from this yarn, so I decided I'd make some for him too, but I had only half a skein left, and Kellys feet are somewhat bigger than mine, so I had to be clever to make them work.  

I used Artesano Definition for the toes, heels, and cuffs.  The main yarn is King Cole zigzag, and the colourway is called 'gorse'.  I knit the socks toe-up, and two at a time.  If you've never tried this before, you have both socks on a pair of circular needles at the same time. Each row is worked by knitting the front of sock 1, then the front of sock 2, then you turn, and knit the back of sock 2, then the back of sock 1.  So both socks grow at the same rate, and if you run out of yarn before you reach the desired leg length, then at least both socks will be the same length!  The pattern that I used for these was the Fish Lips Kiss method, by Sox Therapist.

Here's how these socks looked while I was working on them:


I confess that I found working two at a time to be fiddly, and I spent a lot of time untangling the 2 strands of yarn, and trying to prevent a ladder developing at the needle joins, because arranging the cable is a lot trickier with 2 socks on it at the same time.  It's a great idea for exactly this scenario, when you may run out of yarn, but want to be sure that both socks match perfectly, but I think I'll stick to one at a time whenever I can!




I'm so sorry for the poor quality of this photo!  It's actually a screen capture from Episode 22 of the DancingGeek podcast, because I'm certain I took photos of this before I sent it, but I can't find where I saved them if I did!  Anyway, this is one of my moth repellent herb pouches, and the reason that I particularly needed orange cotton yarn when I broke my yarn diet last month.  James loves the colour orange, and he's had a tough time this year, so I thought I'd send him a little present to cheer him up, and it was his birthday just a few days after mine too, so it just seemed like a nice thing to do.  I also made some stitch markers for him, and I did my best to make them manly, if manly stitch markers can be a thing?


I was so excited when he showed these little gifts on his birthday podcast!  You absolutely need to watch his podcasts, he's just so lovely, it's like having an evening in with a knitting friend, but without any of the anxiety that goes with entertaining actual guests!  


These are the crochet flowers that I've made for this years Yarndale community display project.  The flowers themselves have been ready for about a month, but I only got around to buying safety pins (where do safety pins go?  I swear I bought a whole box of them less than a year ago, and I managed to find just 1 of them when I searched the house!) so now they have pins attached to their backs, and they're on their way to the Yarndale team.  I won't be at Yarndale this year, it's finally confirmed.  I'd be sad about this, except the reason I won't be there is that I will be in Shetland, during Shetland Wool Week!  Squee!!!


My final finished object for this update is a spinning project.  This is 100g, and 175 yards of chain-plied, roughly DK weight silk, mohair, and nylon.  The fibre was from Countess Ablaze, and the colourway is "All Emperors are necessarily wretched".

I am incredibly pleased with this.  It still amazes me that I have learned how to take a pile of fluff, and turn it into yarn, which I can then turn into a wearable item.  Post-apocalyptic life-skills FTW!


Stash Enhancement

Hmm.  So I continue to fail at the yarn diet, but at least I have some good excuses this time!


For reasons that will be explained later, I had to go to Hobbycraft.  Hobbycraft have a semi-permanent deal on, where if you buy 2 balls of yarn, you get a 3rd for free.  My sister is expecting her second child later this year, and she loves the blankets that I made for my first niece.  So does my niece.  She still keeps them on her bed now, even the tiny pram blanket! We don't think she'll want to part with them for her new sibling.  So I've been asked to make new ones.  Obviously, this will need to be easily washable, so I'm not making it from the finest silk and cashmere, but I'd like it to still be soft and smooshy.  I'd heard good things about a new line of yarns made by the Womens Institute, that are exclusive to Hobbycraft, so since I was there, I went investigating.  I came out with 5 balls of WI Soft and Cuddly, in various shades of white and blue, which will be perfect for the blanket (we don't know the gender of the new baby, and to be honest, none of us care, as long as it's healthy.  But I figure that blue on a girl is probably more socially acceptable than pink on a boy).  5 balls will be plenty for a pram blanket, but that 3 for 2 offer meant that I could get a 6th ball for free! So I picked up a single skein of Soft and Silky, in Lilac Mix, just because I liked the look and feel of it really.  Then I spotted a sign saying "Reduced to clear", and behind it there were several balls of this Regia sock yarn, in shades of grey.  £1.50 per ball!  It would have been criminal not to!  Obviously the 3 for 2 offer doesn't apply to stuff that's on sale, but I only need 2 balls of this to make a pair of socks anyway.



This doesn't count as breaking my yarn diet, because Kelly bought me this for my birthday. What's even better, is that I already have a skein of this that Stephen bought for me from the last update!  So now I have 1000m of Countess of Mohair in the colourway "Dark-Clouded son of Kronos".  That's enough to make myself a little t-shirt style top :)  


Then there's these.  As well as the Countess of Mohair skein, Kelly also gave me a Countess Ablaze gift voucher.  I was going to save it until Lyndsey returns from her dying hiatus, but then I had a look at what was still available on the site, and found this gorgeous One-Of-A-Kind colourway of greens and blues, as well as the stunning bright green that would work so well together, and even better, the bright green colourway is called "Oh Kelly!" How perfect is that?!


Sewing?

Sewing isn't really my thing.  I've done a fair amount of embroidery, and cross-stitch in my time, and I am capable of sewing, but it's not a thing that really gets my juices flowing, if you know what I mean?  I have friends who do the quilting thing, and post photos of fabric the way that I post photos of yarn.  I'm not like that about sewing.



However, I did hand stitch this little felt toy as an advertising tool for Kellys latest work project.  I'm allowed to tell you what that is now, because it officially launched this week. Kelly and his work mates have made an app called Tengi, it's sort of what would happen if the lottery and Whatsapp had a love-child.  A free messaging app that awards you tickets for using it, and every week there's a prize draw.  So the more you message your friends, the more likely you are to win a pot of cash. 

So word seems to have got around that I can sew, but that I can't work regular hours due to illness, so I could do with a source of income.  I've been asked if I might take on other sewing projects, nothing massive, but hopefully something to add to my fledgling pattern designing, and Etsy shop, as a means of making a little cash, so I feel somewhat less like a great big slobby waste of valuable space and oxygen.

I own a sewing machine, but it let the magic smoke out some years ago, and I've never had it repaired.  I've considered it many times, and it seemed a sensible thing to do if I might be sewing more often.  So I looked at getting it seen to, and balked at the cost.  Then I looked at replacing it, and found this:


OMG!  How cute is that?!  This is a ludicrously small, and inexpensive sewing machine.  It's perfect for what I need.  It's also the real reason that I had to go to Hobbycraft, as this is made by Hobbycraft, so isn't available anywhere else.


Moving


No, I'm not moving house.  I've been moving my Yarn Cave.  Remember how not too long ago I said I'd finally got around to tidying up my stash?  Well, doing so made me realise that I was actively avoiding going up to my knitting room.  That I was slowly developing a 'downstairs stash', because climbing the attic stairs was simply becoming too difficult.  It's hard to carry the acquisitions of a fibre festival, or open studio, up to their proper storage place when you have to crawl on your hands and knees to climb the stairs.

It also occurred to me that I was dodging a selection of guitars and guitar flight cases at the top of those stairs every time I did go up, largely because there wasn't enough room for Kelly to store them in his Man Cave.  

The solution was obvious - we needed to swap.  I only had the bigger room for historical reasons.  It used to be my dance studio, back in the days when I was slim, and fit, and active, and my most all-consuming hobby was Bellydancing.  I performed with Boomshanka Tribal, and I had to practice a lot.  For this, I needed space.  So when we claimed hobby rooms, I claimed our large attic room, and Kelly got the box room.  When illness took away my ability to dance whenever I wanted to, and made regular practice an impossibility, knitting took over as my primary hobby, my "dance studio" became a combination of yarn storage, and guest bedroom.

So last weekend, Kelly, Stephen, Liz, and I, all worked together to swap the contents of these 2 rooms.  I confess that mostly I worked on logistics and planning, then arranging things after they'd been moved.  The others did all the heavy lifting.  There's still a significant selection of dance paraphernalia and costumes filling the triple wardrobe in Kellys new Man Cave, but the rest of my stuff is now comfortably ensconced in my new Yarn Cave, and I am stupidly happy with it :D




And finally... Penguins!


Yes, I had a birthday!  So there are new penguins!


These aren't all new, only the 3 at the front, and they weren't technically a birthday present either.  Kelly found them when he was out shopping for something else, and brought them home for me just as a random gift.


This chap wasn't a birthday present either.  He was also "Reduced to clear" at Hobbycraft, and I couldn't resist.  He's a money box, and he comes in plain white, with a set of paints, so you can paint him yourself.  I have little skill with paints, but I'm quite pleased with him :)


This was a gift from one of my oldest friends, a fellow knitter, and the mother of 2 of my 4 amazing godchildren.  She bought the fabric used to cover this lovely notebook at Bakewell Wool Gathering last year. Apparently there was some amusement between her and the vendor when I also spotted the same fabric later and went into paroxysms of squee.


Saving the best for last.  Kelly also bought me this.  I've always wanted to own an erotic bronze statue.  Kelly didn't know this, it's not a thing I've really mentioned, because bronze artworks are ludicrously expensive.  He knew I'd love this though.  When I told him about my dream of owning an erotic bronze he was amused.  When I pointed out that the pose of this penguin is one common during the mating dance of the Emperor penguin, so technically I suppose you could call this 'erotic' art, he laughed at me.

Addendum

I've spent a lot of this post singing Kellys praises, and showing you all of the marvelous things he's bought for me, but I don't want you all to think that Stephen forgot about my birthday!


This is thanks to Stephen.  He bought me a ball-winder and sunflower swift for my birthday. I always used to hand-wind my balls of yarn, but that too is becoming painful for me.  So Stephen has given me the means to create yarn cakes.  There is a strong probability that Kellys socks would not have been completed in time for his birthday if Stephen hadn't given me the ball-winder, because I would have used too much precious time hand-winding 4 separate balls, in 2 different colours, and been in too much pain afterwards to cast on until I'd rested.  It took hardly any time at all to get everything ready this way!

So this post comes to you all with a great big dose of love, and gratitude to my 2 lovely boys, for all the help you've both given me, and for the perfect presents too :)

Thanks to everyone who reads this too, for taking the time to join me in a little bit of my life. Goodnight my lovelies!

Sunday 2 August 2015

A Game of Spoons

Sorry guys, this is another post that isn't going to be about knitting, or penguins.  Although one of the things that has inspired it is related to knitting, sort of, if that counts?  And I am going to write another post that is about knitting, and penguins, very soon, I promise!

This post is going to be about chronic illness, invisible illnessEhlers-Danlos Syndrome, and frustration. Yeah, sorry, it's going to be a big miserable ranty rant.

So, if you don't already know, I have EDS.  Probably.  My doctor didn't know what it was and had to ask a specialist what the diagnostic criteria are.  I meet them.  So I've been referred for further investigations.  It's slow, and it's tedious, and it's frustrating.  It causes me chronic pain and fatigue, as well as numerous other niggles and inconveniences, follow the link if you want to know details.  

It makes my joints hyper-extend, like this:



And means my legs always look like this, and I never know what caused it:




Last night I went out to celebrate the 40th birthday of a very good friend.  I don't make it out to parties very often these days, but I couldn't miss this one.  Certain of my joints have been particularly troublesome of late, especially my right hip, and right wrist.  The hip issue means that I've been unable to do any training for either of the races I have coming up for a couple of weeks.  The wrist issue means I can't knit more than a couple of rows without needing to stop.  It also means that last night I was wearing a support bandage.

I swear that everybody asked me "what have you done to your wrist?"  Which sounds innocuous enough, except that every time I have to explain that I haven't "done" anything, other than exist.  That's enough to cause pain and damage to someone like me.  And every time I have to explain that, it's another reminder that my life will never be the way it used to be ever again.  Another reminder that I'm not "normal", and can't do "normal" things.

Between that question, listening to my insanely active friends discussing plans for 20 mile runs, or 70 mile bike rides, and not even being able to knit to calm myself down, I ended last night in a state of barely contained misery, and did not sleep at all.

Instead of sleeping, my brain came up with this "game", of sorts, to demonstrate what it's like to live with chronic illness.  It's based on the now well known Spoon Theory, combined with a very accurate cutlery related theory once expressed to me by the lovely Lyndsey of Countess Ablaze when describing how living with chronic illness makes her feel.

So if you'd like to try living in my shoes, or the shoes of millions of other people out there with chronic illness, join me in playing the Game of Spoons!

Game of Spoons

Requirements:

1 x D6 (I'm a gamer geek, if you don't already know, D6 means 6-sided dice)
1 x D4 (4-sided dice)
20 x spoons
5 x knives
Large dollop of empathy
cupful of compassion
a sense of humour

Starting the day

Roll a D6.  This is your "Physical Wellbeing" die.  It determines how your body feels and behaves today.

5-6 = Good.  Your pain is controlled by your regular meds, you feel alert.
3-4 = Average. You need to take a few extra pain killers, and a whole lot of caffeine, but you can just about manage.
1-2 = Bad.  Even at maximum allowed dosage, your meds still aren't helping.  Even though you slept until 1pm, a trip to the bathroom leaves you so exhausted you need to go back to bed for an hour before you can even consider making breakfast.  If you roll 1-2 on your Physical Wellbeing die, you must use a D4 as your Mental Wellbeing die.

Roll a second die.  This is your "Mental Wellbeing" die.  It will be either a D6, or a D4, depending upon the results of your Physical Wellbeing roll.  Your Mental Wellbeing die determines your mental state for the day.

5-6 = Good.  You feel almost normal.  You might even be able to handle trigger activities such as opening post, or making a phone call today.
3-4 = Average.  Your world is not the happiest of places, but you have people who love you, and the motivation to attend to your duties and responsibilities.
1-2 = Bad.  You feel worthless, useless, a burden to those you love.  You feel the world would be better of without you.  You have the motivation to achieve very little today.

Now add the results of these two dice together, and divide by two.  This is your overall score for today, and determines how many spoons you have to work with.

5-6 = Good day.  Receive 20 spoons.
3-4 = Average day.  Receive 15 spoons.
1-2 = Bad day.  Receive 10 spoons.

Roll a third die, a D6.  This is your "Sleep" die.  If you roll a 1, then you did not sleep last night due to pain and/or stress.  You recover only half of your allotted spoons for today, and your knife count does not reset. 

Additional rules:

If you roll 5-6 on your Physical Wellbeing die, combined with 3 or above on your Mental Wellbeing die, and do not roll a 1 on your sleep die, for 3 consecutive days, your Physical Wellbeing die automatically becomes a D4 for the following day.

If your combined result for any one day is 6, and you did not roll a 1 on your sleep die, you automatically feel so amazing that you attempt to achieve ALL THE THINGS!!!  Your Physical Wellbeing Die becomes a D4 for the following day.

When you spend spoons on any activity, you must roll a D6.  If you roll a 1, then your body betrays you during this activity (eg. you get dizzy and fall over while taking a shower, you lose grip while loading the dishwasher resulting in you dropping and breaking your favourite mug, or you suffer brain fog while travelling on public transport and garble nonsense at the bus driver instead of asking for a ticket).  This causes you frustration and anger.  Gain 1 knife.

If you gain 5 knives during any one day, you will lose your temper and have a fight with a loved one.  Lose 5 spoons.

You may 'borrow' spoons from the next day, but you must remember that you do not have those spoons the following day.

Your knife count resets to zero after a full night of sleep, but only drops to 3 after a fight with a loved one.

Spoon Costs

Get out of bed - Spoon cost = 1

Make a cup of tea or coffee - Spoon cost = 1

Make a snack, or light meal - Spoon cost = 2

Perform a household chore (eg. 1 load of laundry, 1 dishwasher load, 1 bedding change, prepare a full meal) - Spoon cost = 3

Have a shower - Spoon cost = 3

Get dressed and leave the house - Spoon cost = 3

Grocery shopping - Spoon cost = 5

Attend an appointment (eg. medical, bank, solicitor) - Spoon cost = 3

Meet a friend for lunch - Spoon cost = 3

Perform any 'trigger' activity that causes you anxiety (making a phone call is a common trigger activity) - Spoon cost = 5

Do 30 minutes of exercise (any activity that raises your heart rate significantly) - Spoon cost = 5

Use public transport (not peak times) - Spoon cost = 2

Use public transport during rush hour - Spoon cost = 5

Drive into town (not peak times) - Spoon cost = 1

Drive in rush hour traffic - Spoon cost = 3

Attend a party/wedding/funeral - Spoon cost = 10

Spend a full hour resting, and doing something you really enjoy (eg. reading, crafting, playing a video game) - Gain 1 spoon.  You can gain a maximum of 2 spoons in this manner during any one day.  This activity is also subject to a knife-gain roll.  If you gain a knife, you may not gain a spoon from this activity.


Further play

Continue in this fashion.  Every.  Single.  Day.  For the rest of your life.


Life goes on

I don't really expect this post to change anything for anyone.  The concept of pain that never ceases, and fatigue that does not necessarily follow exertion, is impossible to understand if you have not experienced it for yourself.  Most especially, it's easy to FORGET if you don't suffer from it yourself.  I assure you that those of us who are in chronic pain can never forget about it!

Perhaps for a little while though this silly game might make you think again when a friend cancels an arrangement, or a seemingly normal young person takes the priority seat on the bus.

Perhaps it will help you understand why I am so determined to run my next race.  5k to raise awareness of EDS, and make you consider helping me to spread the word.

Perhaps it will also help you to understand exactly why knitting is so important to me.  It offers the only means I know of gaining spoons!