Tag: *Sick Chicks who Craft

A very special Sick Chick who Crafts

Marian is six years old and has been blogging for over a year now (by dictating to her mum, Valerie). From what I’ve seen she so very enthusiastic about crafting which is so great to see in a girl her age.

But there’s something potentially getting in the way of her crafting this year: her bone marrow transplant. Because of the way this transplant will work, she will undergo chemotherapy in March and then go into the hospital for her transplant surgery. Her older sister is her donor, a perfect match, but that’s still a painful operation for both little girls 🙁 Anyway, after her transplant, Marian’s immune system will be so fragile that she will only be able to use brand-new craft supplies that can be easily cleaned.  She will be in hospital for a long time until she is recovered enough to be able to take her new immune system out into the world so will need a lot of supplies!

Not taking this lying down, she’s raising money through the sales of craft kits and other artwork to fund her supplies with leftover money going to a charity called Caitlyn’s Smiles which provides craft kids for children in hospitals. The kits and things are for sale through her mom’s Etsy shop, Purple Petunia which is due to be restocked today.

I don’t know what else can be done for this amazing crafty family, but I’m going to try whatever they ask 🙂  I’ve written to get a t shirt (which features a drawing Marian did of a pop singer with the caption “Project Superstar” which is the codename for the fund raising and Marian-cheering efforts) but I don’t know if they are sold out already.  If I get one though I shall take a photo of me in it in front of major landmarks in London and Paris and email them periodically while Marian is recovering.

So I encourage everyone to go over to the blog and post comments, to go to the shop and buy some of the snowglobe necklace kits made by the girls, and to watch this space as I’ll post if I hear of any other ways to help.  Let’s do what we can to keep this sick chick crafting! 🙂

Too much downtime leads to dangerous scheming

I’ve made my peace with pain, for the most part.  I won’t stop trying to get new and improved meds, but probably 29 days out of 30, pain is not stopping me from doing what I want to do and on that 30th I just have to rest up, pace and work around my limitations so that I can still do  much of what I want.  I still spend a lot of time in bed as it’s the only way to keep up my treaty obligations, and that leads to an overactive brain frustrated by inability to do anything.  More on this later.

Fatigue is another story.  I have not made peace with it, we’re still at war.  It is my primary nemesis and the cause of most of my inability to get things done. You see, 90% of people with chronic pain will experience fatigue.  On top of that I have two more diseases that cause fatigue, lucky me.  It comes in many guises and has more causes than a bleeding heart liberal.  (Not that I have anything against bleeding heart liberals 😉 ).  For me, fatigue can come at full blast or sneak up on me on silent cat feet, usually attacking *because* I am at peace with my pain.

Confused?  Well, part of my being at peace with pain is learning to ignore it.  It becomes just another annoying signal coming from the body, like hunger or the need to pee. When you are wholly engrossed in a project to the point where you don’t notice time passing or hunger pangs rising, you can also ignore pain too.  Hours later, you look up from your craft table and realize that you’re really hungry,  have a desperate need to pee and you’re in massive pain.  Hey, I’d rather have a burst of pain quickly quashed by big drugs (quickly being a relative term) over annoying pain all of the time.  Your mileage may vary, but that’s what I have chosen.

But ignoring pain like that drains you of energy without you even noticing it.  (After all, you’re not noticing the pain either…)  And unlike pain, the fatigue that can come doesn’t wait for you to look up from your fantastic project.  Oh no, it sneaks up behind you and pounces, knocking you flat.  You have no choice, you are wholly within its mercy.  And mercy, it has none.  So you can be doing your favouritest thing in the world but when fatigue strikes you have no choice but to go lay down and probably sleep.

This happens to me a lot and is the main cause for UFOs.  Actually, Fatigue’s nasty sister Insomnia is equally to blame for UFOs.  If I’ve crashed out in the middle of the afternoon for a few hours, it’s practically guaranteed that my sleep schedule will be borked.  You see, insomnia is not a lack of sleeping, it’s the inability to sleep when you want to and can be coupled with the inability to stay awake when you want to.  It’s simply a messed-up sleep schedule.  But oh, how a messed-up sleep schedule can mess up your life!

There are three types of insomnia: not being able to get to sleep in the first place, getting to sleep but then waking up in the middle of the night unable to get back to sleep for several hours, and waking up well before your alarm and unable to get back to sleep.  I get the middle one, my husband t gets the latter, but due to the fact that he sleeps half as much as I do, we often wind up dealing with insomnia at the same time.

Insomnia is insidious: you want so badly to go back to sleep, you hope and pray that you can get to sleep any minute now.  So you don’t do anything that’s going to wake you up even more and you don’t get too involved in anything so that you can go back to sleep the moment insomnia releases you from her evil clutches.   You’re awake, but can’t really be productive unless you’ve given up entirely on getting back to sleep.  You pass the time, knowing that every minute you’re awake in the middle of the night is probably one that you’re going to be asleep during the productive part of the day.  (At least for me, as I have the option to sleep whenever my body demands it.  Unlike poor t whose work frowns upon keeling over in meetings, etc.)

For me, passing time without doing anything so taxing as to wake me up fully involves a lot of random web surfing and a great deal of churning my mind over and over. (Actually the mind churning over and over can be why I can’t get to sleep in the first place on those sorts of nights.  Go generalized anxiety and ADD!) I have to admit that a lot of my great craft ideas come from this semi-meditative state, but it’s not always a consolation.  I can’t *DO* anything during this time, except maybe fairly mindless online things like adding my entire blogroll to this site, so it means I am filled with ideas that have to wait until I have the energy to do them.  Often without regard to whether I already have a project on the go  that I really should finish first…

This week I was upin the middle of two nights and caught myself blog surfing and actually commenting. Rare for me, but hey, I had nothing better to do and was already awake enough to form coherent sentences.   I came away from these periods of meandering with two burning desires:

1) I want to do MORE with this craft blogging thing.  OK, I want to do a podcast but my track record with podcasting isn’t so great. But maybe I will get into interviewing Sick Chicks who Craft for the blog?  Or would that be better as a podcast anyway??  (Thoughts welcome.)  The problem of course is that I am barely keeping up with this blog this as it is, so a desire to do even more than I’m attempting to do now isn’t really helpful at this stage 😛

2) I want to learn to spin.  This is not a new feeling, I’ve wanted to learn to spin since before I’ve wanted to knit, I just fear failure a lot more in this area.  I’ve even looked up spinning classes in my local area but none of them tell the prices and well, if I have to ask I know I can’t afford it.

This spinning-lust has been made even worse by egging on from Violet of (of Lime & Violet), which happened because I commented on a review of a new spinning book and she actually responded with said egging. (Thanks :P)   It’s pretty overpowering now and I think that when I make a run to the Handweaver’s Studio for some fiber (for felting), I will ask about their spinning classes.  And maybe their fiber dyeing classes, as I love dyeing (and am going to do some Kool Aid dyeing as part of Thing a Day).  *deep sigh*  I can just see my craft budget for the rest of the year slipping away to course fees…..

And now it’s half five in the evening and I have nothing but this post to show for what I’ve done with my day.  I’ve been too drained to do anything else.  I know it’s not my fault, but I can’t help simultaneously feeling guilty and silently cursing the fatigue monster that made me sleep sixteen hours straight….oh well, my fingers say I have typed too much for one stretch so even if I wanted to get more moody at you it’s time to stop.  So goodbye for another day…