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.


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.


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.


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.


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.


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.