Sunday, 12 May 2013

What's Your Something?

Next week (Monday 13th to Sunday 19th of May) is Arthritis Care Week.  This year they're running a campaign entitled 'What's Your Something?'.  It basically boils down to the fact that there is always something you can do to make living with a chronic illness a little bit easier.

So, what's my something?  My something is a whole collection of somethings.

Distractions

Sometimes pain can be at a level where the only 'something' is a date with a bed and a darkened room, however for the pain level before that I find distractions hugely effective.  Everyone's different, but I personally find doing things which require concentration really helpful.  From cross stitching to stupid iphone games, anything which occasionally makes me want to throw the thing out of the window seems to do the trick.

Good Medical Professionals

To me, it's not so much the 'good' part, more the absence of horrendously bad medical care.  If you want to read how frustrating and infuriating it can be dealing with a bad doctor, please see here for the adventures of Dr Twatface.  Ever since I completely proved Dr Twatface wrong (*cough*incompetent*cough*), my GP's have taken to trusting that if I say something is wrong, then something is wrong.  It makes so much of a difference to have every doctors appointment not be a battle, to not have a lecture on how expensive your medication is and how you're a drain on society every time you go in to get a prescription. 

Walking into my pharmacy is a bit like this:
Where everybody knows your naaaaaaaame. 

I get the same warm welcome at my maxillo-facial clinic, where I can walk to with  my eyes closed (don't ask).  Although this points me out to everyone else there as some sort of regular, which lets face it is really quite pathetic - if I have to go to these places all the time, a little friendliness makes the whole ordeal...much less of an ordeal.

Organisation

I feel like such a nerd for putting this in here, but honestly being organised about my illnesses gives me one less thing to worry about and that is worth it's weight in gold.

Case in point - medication.  A few days ago I had a prescription to pick up.  When I got home from lugging the giant sack, and I emptied it out it looked like this:

Managing medications is harder than a lot of people think.  Especially when a symptom of your condition is brainfog.  Six months ago, I was an absolute nightmare.  I would take painkillers and then have absolutely no recollection of doing so.  Quite often I would ask people around me if they remembered seeing me take anything recently, which really is a recipe for your workmates thinking you're (more) crazy.  I was also a nightmare at remembering to order repeat prescriptions, and had one too many close calls for my liking.

Well, as it turns out, there's an app for that (cringe).  I tried out quite a few apps to manage my medications, and only one has actually stuck for more than a week - Dosecast.  It sends me reminders when I need to take something, I can then skip, postpone, or take the dose.  This allows the app to keep track of how much I've got left of each medication, and I get alerts when I'm running low on something.

You can also print off reports from it which can come in handy to review your medications with your doctors.  Honestly I can't recommend this app enough.

I also went through a phase of constantly losing my appointment letters and never knowing when any of my clinic appointments were.  This led to many an embarrassing phone call to the nice receptionist at my maxillo-facial clinic which basically went like 'Hey can you check when my next appointment is?  While you're there can you also give me a list of all my various clinic appointments for the next six months or so and I promise I'll actually write them down this time?  k thnx'.  What technological discovery did I discover to help with this?  A plain old paper diary.  I keep it in my drug bag and again, it gives me one less thing to worry about.

Honestly, I've only gotten this whole organisation thing down in the last six months or so, but I've been surprised by how much of a weight has been lifted off my shoulders for doing so.  Not being so chaotic seems to give me a few extra spoons.

Humour

You may or may not have noticed, but I try not to take myself too seriously.  You get to a point after diagnosis after diagnosis where if you didn't laugh at the monumentally crap hand you've been dealt, you'd cry, and crying hurts my jaw so that's not happening.  Plus, there's just something inherently funny about trying to eat something, it not fitting in your mouth, and instead it ending up all over your face and clothes.  EVERY. DAY.

People

I met my boyfriend right before I was due to have the first (of many) operations on my jaw.  For some bizarre reason, he didn't run for the hills and we've now been together for five  years and live together.  My friends and family often lovingly refer to him as my carer.  I often joke about this too, and as it becomes less and less of a joke, in order to preserve my sanity I now like to think of him more as my 'bag of extra spoons' (now there's a sexy nickname).  He's there to pick up the slack when I can't, which as it happens is most of the time.  Now far be it from me to be mushy (this whole paragraph is already kinda making me want to vomit) but I think this is the biggest of my 'somethings' as it's the one I honestly don't know what I'd do without.

*vomit*

As well as next week being Arthritis Care Week (which by the way, you can find more info about here), today is also Fibromyalgia Awareness Day.  Why not help raise awareness of both by sharing the spoon theory on Facebook, Twitter, or whatever new fangled social media is currently all the rage?  Yes, the spoon theory is probably the most overlinked site on this blog, but the constant barrage of links are there for a reason.

Here endeth the novel.





Sunday, 28 April 2013

This is the Story of a Flare

The last week I've been in the midst of a pretty serious flare. The worst I've had since being diagnosed with fibromyalgia last year.  Not all flares have a definable trigger, but this one did - a trip to the dentist.

I hadn't been to the dentist for several years until recently when the mouth guard I wear to stop me grinding my teeth away into nubs was beginning to get so worn I feared it might dissolve completely.  My dentist is lovely, he put me at ease, made me a new mouth guard and commended me for taking such good care of my teeth during my seven year dentist hiatus.  Unfortunately I needed a few very small fillings, which is always going to be tricky for someone with a mouth opening of under 2cm.  I had my most recent appointment last week, and I was having one of those days where my jaw just wasn't wanting to cooperate,and wouldn't even open to its usual 2cm limit.  I think the dental nurse also thought I was having a psychotic episode as every time the dentist used the drill, I started to giggle as it made my prosthetic joint rattle and tickled my earlobe.

My life isn't like other people's.

Anyway, the dentist visit triggered a migraine which meant I couldn't sleep and the pain and the lack of sleep (did you know there's a word for that?  Painsomnia - my new favourite word) culminated in my body deciding it had had enough and checking out of life for a week.  None of the many medications I take made any dent in the pain, or the exhaustion.



I've spent the last week in bed, getting very acquainted with my Buffy box sets which was the only thing stopping me from going completely mental with boredom.  There were (many) days where lifting my head or lifting my hand to use the TV remote just seemed like far too much effort.  I tried a few times to play games on my iPad or phone to help pass the time and had to stop after a few minutes as I was physically exhausted.  I basically felt like I woke up every day and someone had stolen all my spoons (damn spoon thieves) and I was working on negative spoons for the rest of the day.  



And then there's that delightful Catholic guilt that creeps up on you.  Guilt that you're not pulling your weight, not working on that custom Etsy order you really should be working on, not answering your phone because it's too much effort, cancelling appointments because leaving your bed (never mind your house) is just not going to happen, and guilt that you're just generally not functioning as a useful member of society.  The guilt (as well as the pain and exhaustion) was making me stressed and my usually fairly well controlled hypertension became... not so well controlled and I started getting chest pains.

Then there's the wonderful thing that is selective memory. I've mentioned before on here that sometimes (in the brief instances) when I'm not in pain my brain convinces me that there's nothing wrong with me and that I made the whole thing up.  During a flare I get the opposite effect, my brain had me convinced that this was how I was always going to feel and I might as well just get used to it.

Today I feel a bit better, I mean I'm still in bed but I've at least washed, remembered to eat, answered my phone, and written this blog post, which is pretty much more than I've done the rest of the week.  I recently saw a consultant at the Pain Clinic and she said that I had excellent coping mechanisms already in place, and I suppose I must do - it's taken more than a year for my body to give in to the fibromyalgia and I don't intend to let it win again any time soon.




Sunday, 31 March 2013

Newy Newness #2

New shop stuff!  Yay!



This design proved to be quite popular and sold really quickly, so I decided to restitch it, plus I do love it.  Might make one to keep myself at some point.


This particular pattern was the first one I made after starting to use PCStitch, but I only just got around to stitching it.  I love the way it turned out!


This 'Oath of the Night's Watch' piece was actually one of the first more complicated pieces I ever made, and one of the first pieces I sold.  I always loved it and really wanted to get it relisted before Season 3 starts, so I stayed up until 3am last night.  I was completely cross-eyed by the time I was finished.

I am so excited for Season 3!  Technically it airs tonight, but I won't see it until I get home from work tomorrow, so excited!  The season finale of Walking Dead will also be waiting for me when I get back from work tomorrow, honestly not sure which one to watch first!  


This is another new design.  Based on the popular British 'Keep Calm and Carry On' thing that is absolutely everywhere, but using the Spoon Theory (which you should be familiar with if you have ever read this blog before!).  I really like the simplicity of this design.


My 'Stick 'em with the pointy end' piece was recently featured in a Buzzfeed article!  I'm an avid reader of Buzzfeed so I was absolutely ecstatic!  I love that it was featured in an article with a flattering title, not just pointing out weird stuff you can buy on Etsy, as so many of their articles are.  You can read it here.  I'm at number nine!


In other news, I'm currently hobbling along like a nutter as I just had a course of steroid injections put into my hip (I have bursitis in one of them) and the physio forgot to mention beforehand that ideally I should have a week to rest afterwards (just not going to happen) and that although they should help in the long run, in the short term they'll make my hip sorer, angrier, and stiffer.  And I get to have another course in a fortnight.  

Ah the joys of being a spoonie, eh?




Saturday, 2 March 2013

Popping my Pecha Kucha Cherry

Last Tuesday marked the 5th volume of the Dundee Pecha Kucha, and marked my first ever Pecha Kucha experience.  It's one of those things that I've always meant to go to, and then kicked myself afterwards for not getting a ticket.

If that entire paragraph made no sense to you, then you've probably never heard of Pecha Kucha and are wondering what the hell I'm babbling on about.  The first ever Pecha Kucha (Japanese for chit chat) happened in Tokyo in 2003 and the aim was to provide a creative platform for people to share ideas within a fairly rigid presentation format.  Each presentation has 20 slides which show for 20 seconds each which in my opinion, keeps each presentation snappy and to the point.  If you want more information the global Pecha Kucha site has an FAQ and Creative Dundee has more information on the Dundee events.

The host (named Gillian I believe) did a really good job of pulling all the presentations together, and was wearing an absolutely adorable dress that I want.  Now.



The unintentional theme that ran through each presentation was how much they all love Dundee, which as someone who wasn't born here, but has since chosen to live here, was really lovely.  I won't mention every presenter (more details about all of them can be found on the Creative Dundee page), but I will mention a few that stood out to me.


Irving Miskell-Reid is a hairdresser and owner of Freedom Hair Experience in Dundee.  My first impression of him was "wow that man is a snappy dresser" and I loved that in every photo of him that appeared in his presentation, he had a different pair of specs on.  It's the little things.  What I really liked about his presentation was that it provided a potted history of the Dundee creative scene which was really interesting to a transplant like me.


Jonathon Baldwin told us the story of his life as a Whovian (Translation for the non geeks - A Whovian is a Dr Who fan).  Although I've never been particularly into Dr Who, I am a giant Whedon and GRRM nerd so I loved his presentation.


I think my favourite presentation of the night was the one given by Mhairi Wild.  Although she's a textile artist by day, her presentation was about cake, and my goodness I have never heard someone speak quite so passionately about cake before. The event was actually the day before her birthday, so she brought a huge amount of cake to share with everyone after the show so she was a very popular lady!


The evening was rounded off by a musical presentation from Chris Marr from Esperi Music.  His slides were filled with pictures of his dog, which was just adorable and his music was a perfect ending to the evening.  You can't see them but as well as the guitar, he's also playing bells with his feet.  It sounded really really pretty.

The whole ethos of Pecha Kucha (which was definitely evident at the Dundee event) is "celebrate what you do", and the more I listened to each presenter, the more I realised it's something I really struggle with.  I was trying to describe to my mum what Pecha Kucha was and when I did I used the word creative in quotation marks.  Not because I doubt the creativity of the presenters, or the rest of the audience, but because I really struggle to think of myself that way.  The more I listened, the more I thought, you know what, I am creative.  To me being creative means you have to create, whether whatever you create sees the light of day or not is (in my opinion) irrelevant.  When I get an idea, whether it be for a blog post or a new cross stitch piece, I can't concentrate until I get it out.  It took me a long time to finally start my Etsy shop, because putting yourself out there like that is really bloody scary.  Each thing I make or write is a little piece of me and I was always terrified nobody would like them.  So far each and every one of my shop customers have been absolutely lovely and have sent me the sweetest feedback, and after my blog post about the invisible illness bingo a reader posted on Facebook that they had said every one of those things to their wife (who has disabilities) and my blog post had given them the wake up call they needed to be more sensitive.  This for me, makes the whole thing worthwhile.

I loved volume 5 of Pecha Kucha Dundee, and I will definitely be there on May 21st for volume 6.  Will you be there?

If you want to see more pictures and reviews of Pecha Kucha Dundee you should check out the hashtag #PKN_DND on twitter.  As always, you can find me on Twitter and Instagram as @goramstitches and there's a link to my facebook in the sidebar, I'd love you see you there!


Sunday, 17 February 2013

Newy Newness

Hello world!

I just posted a number of new pieces in my shop, so I thought I would also post them here.  If you're not a fan of shameless self promotion then look away now!


In hindsight, I should probably have had this up before valentine's day, but I'm not very good at this so I didn't.  I only made it yesterday.  Obviously inspired by the wonderfully ridiculous Morrissey song of the same name.


Why Joss, why?  Why did you have t break all of our hearts?  I heard a joke recently that is sort of related to this:

Joss Whedon, George RR Martin, and JK Rowling walk in to a bar...

Everyone you love dies.


I have this listed twice in my shop - you can either have the version above with Dr Horrible's name on it, or you can have your very own PhD in Horribleness.  Who wouldn't want that?!


This is my attempt to pretend I'm down with the kids.  I'm really not though.


I enjoyed making it so much, I stitched it twice!

I also made this recently but it's not for sale:


Why isn't it for sale?  I like it too much and it's probably too niche even for my shop.  It's from the Smiths song 'I know it's over', and the rose is to show that I'm a proud member of the Blue Rose Society (an uber secret society of Morrissey fans).  Whoops, shouldn't have told you that...

Related to the above, I saw the lovely lady from RARA Showroom in Dundee tweeting a picture of the following valentine's card, and I absolutely had to have it:



What makes it more realistic is that it says this on the inside:




If you want to see what I'm upto, I post most of my work in progress on twitter and instagram, some follow me! @goramstitches


Saturday, 12 January 2013

Invisible Illness Bingo

I first stumbled across an invisible illness bingo card a few years ago.  No doubt via someone posting it on Facebook - isn't that usually how we stumble across things?

The idea of the bingo card is that it's filled with statements that people with invisible illnesses hear so often that you could no doubt complete your bingo card and shout "house!" in less than a week.  There generally isn't a cash prize in this bingo game though, which really is a shame.





In this post, my general plan (as if I plan these blog posts) is to tell you why I personally find most of these statements fustrating/insulting/stab inducing. There are a few different versions around the internets, and I chose the one above because it was the one I related to the most.  A quick google image search should help you find more if you so wish!


My friend/ex-wife/brother had that but then it turned out he/she was just a hypochondriac.
I started getting this one when I began telling people I had been diagnosed with fibromyalgia.  The most frequent version was the response "isn't that one of those things that they can't prove exists?"/"isn't that one of those things that benefit cheats pretend to have?".  Don't believe people would be so insensitive to someone newly diagnosed with a debilitating condition?  Do me a favour - go to google and type in the words "is fibromyalgia" and see what suggestions you get.  The first time I did it I got "is fibromyalgia real?" and "is fibromyalgia a mental illness?".

But you don't look sick!
Ah, the good old "you don't fit with the image of a person with a disability in my head, therefore you must be faking".  I don't look sick generally, not with three inches of makeup on my face.  To the casual observer I look like a normal twenty something.  It doesn't mean my disabilities aren't real.

'But you don't look sick' is the name of the website of Chistine Miserandino who wrote The Spoon Theory - for this very reason.

If I haven't heard of it, then it doesn't exist!
Worryingly, I tend to get this attitude most often from healthcare professionals who think I'm making up the whole jaw arthritis thing because they've never heard of anyone having it.  Hello?  Is it a joint?  Then it can get arthritis just like any other joint!  Obviously, I'm just a silly little girl who occasionally gets a headache and has read about this on the internet, so I've decided I've got it. Obviously.

I generally manage to snap them out of it when I show them the scar from when I got my right jaw joint replaced/they see my numerous MRI scans/they realise I've accidentally memorised my CHI number because I use it so often.

You just want an excuse to be lazy and have people feel sorry for you!
I hate how easily I get tired out, or how quickly I can get sore doing 'normal' things.  Sometimes I spend an entire day doing nothing other than catching up with the sleep I haven't had all that week because I've been in too much pain.  My catholic guilt means that I feel ridiculously guilty on these days that I haven't done anything 'useful'.  As for the feeling sorry for me part - I hate it.  If I'm going through a rough patch/flare I will actively avoid answering my phone (which annoys my family to no end) because sometimes I'm just not up to either lying and saying I'm fine, or talking about how bad I'm feeling because it's really not a fun thing to talk about.

You have it so much better than some people!  Think of the starving children all over the world!  They don't have problems like this!
I think this is my least favourite.  I get it quite often, generally not with starving children but with a comparison to someone who has severe disabilities.  I honestly don't know what people are hoping to achieve with this one?  Any ideas?  When I hear this it doesn't make me feel better about my issues, it just makes me feel guilty that someone else is suffering.  It makes me feel like a crappy person for daring to mention my issues when anyone else in the world might be suffering a bit more.  Saying this kind of thing is likely to make me never open up to you ever again.


On a vaguely-related-but-not-really note, a few years back I saw Morrissey live.  At the time I was at the end of my tether with my jaw and my head felt like it was constantly in a vice.  Morrissey came out on stage and the first words he bellowed were "SOMETHING IS SQUEEZING MY SKUUUULL!" and then launched into the song of the same name:


Now Morrissey is clearly a man that understands suffering and this song became known (between me and my boyfriend) as the official sponsor of my arthritis and was the anthem of my  joint replacement.  The fact that Morrissey expresses that he would love to not have to take any more pills in this song, along with it being his first words in my home town clearly proves to me that this song was definitely written about me.

Definitely.

OO

Saturday, 29 December 2012

Boring Post About Boring Things

So I'm boring.  Hands up, I admit it.

I might as well as I'm constantly being told it's the case.  My boringness seems to be particularly noticed and highlighted around this time of the year when I'm asked what my Christmas and New Year plans are and the answer every year is always the same - quiet.  The thing is though, quietness to me is somewhat of a necessity in order for me not to want to stab myself in the eye.


Have you ever had a migraine?  If you have, did you want to be around a lot of noisy drunk people?  Or, did you spend your time doing nice quiet activities, possibly involving a bed and a darkened room?  Did you feel like you were being boring by not 'sucking it up' and 'living a little', or did it seem like the totally sensible non mental thing to do?


I live my everyday life with that 'migraine'.  According to the Hyperbole and a Half's 'Better Pain Scale'  I'd estimate I rank between a 5 (Why is this happening to me??) and an 8 ( I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.) most days.






I honestly can't remember the last time I experienced any less than a 3 (This is distressing.  I don't want this to be happening to me at all).  I don't say this for pity, just for clarity.  The way a 'normal' person feels the day they have that 'migraine' is how I feel all the time.  I reason I don't look as bad as you do when you have a migraine is because I'm so used to it.  And foundation. Lots of foundation.

People seem to be able to tolerate one off instances of being unwell enough to mess up plans or make a person feel less sociable, but when it becomes the norm, somehow it's seen as the person giving in when actually they are just feeling the totally appropriate need to adjust their daily lives in the name of self preservation.



Would I be a different person, with different interests if I hadn't been diagnosed with arthritis at the age of 21?  Most definitely... but I don't care.  

A few years ago (after one too many binges at the local all-you-can-eat-buffet after receiving bad health news and deciding to fix it by eating my feelings) I decided that in order for me to not go completely bat poo insane, I needed to cut the links 'normal' people have between health and happiness.  I like my life, I like my quiet hobbies, I like that they are realistic hobbies that aren't going to tire me out so much that I'm going to lose all interest in them and make me feel more guilty than I do most days anyway (damn catholic upbringing).  

Would I be an ultramarathon runner if my life hadn't turned out the way it did?  I seriously doubt it, but who knows? Would I be a crusty baguette (the nemesis of the TMJ 'issues' patient) taster for a living?  Would I finally have perfected my quiff and followed Morrissey on tour?  Who knows.  My life is different that most people my age, but you know what, I've always been a weirdo so it almost makes sense that my life has turned out so differently to most twenty somethings.

I've been turning to Dr Seuss a lot lately, but let's face it Dr Seuss basically exists to affirm the lives of weirdos like me so it seems only fitting to end this post with a quote:

Now excuse me while I spend my Saturday evening watching the Gilmore Girls for the fiftieth time... and liking it.