On chronic illness as a Beast


Beauty and the Beast by TGB-illustrations on DeviantArt

I want to link to a couple of great blog posts about chronic illness: Michelle Goldsmith talks about writing and chronic illness and Terri Windling talks about “Books, the Beast and me“.

I love that there is conversation about chronic illness happening.  I hate that anyone has to struggle with any kind of illness, of course, and if I had a magic wand, the first thing I would wish would be health for everyone.

I am really taken by Windling’s description of her illness as a “Beast”.  It’s apt – it’s a haunting, the monster that lurks beneath the bed or in the shadows behind the door, just waiting to pounce.  The Beast is unpredictable, the Beast cannot ever truly be tamed, though it can sometimes be lulled to quiescence if you use just the right song.

The Beast is a creature who has haunted me for almost thirteen years, and will likely haunt me for the rest of my life.  It has been lurking somewhat more than usual these past few months, and I am grateful, like Terri Windling, for the fact that, even when things are bad, I can usually escape by reading.  The early days of my dance with the Beast were much harder – I had stretches of time when I found it extremely hard to focus on words.  Which, when you’re someone who has grown up surrounded by books and the worlds in books, is akin to having some part of you ripped away.

Thankfully, I mostly know the ways to keep the Beast semi-tame, thanks to proper diagnosis, a good medical team, medication and an extremely supportive family.  And the days where I cannot read are very rare now.

Thank you, Michelle, and thank you, Terri, for your honesty and the reminder that even in living with a Beast, there can be Beauty.

I bring you your ink

Writing shrine

New grotto/shrine for Thoth from The Fable Tribe.

I’ve kind of fallen off the bandwagon of the photo-a-day thing for this year.  I always like the idea of doing it, and take photos happily for a few weeks and then end up just standing and staring at the same things in the house, thinking that they’re boring.

I think it mostly just reflects how much of a hermit I am, really.  I will keep on taking occasional photos, I think, but not hold myself to taking one every day.

It’s been an interesting last few weeks.  Went through some medical testing last week (which has, pending some other tests, revealed nothing dire, which is something).  I have my first chest infection of the year right now, which is just *awesome*.  I’m hoping that it’ll pass quickly, but possibly not, since I’m immunosuppressed right now, and will probably need antibiotics.  Autoimmune diseases suck.

I have been writing, and holding to achieving 10,000 words per week.  Still working on Shaede, and feeling really happy with it.  I think it may end up being a bit longer than I’d planned, but we’ll see.  I am going to need to hunt up some new beta readers once this draft is done, I think, since everyone who’s betaed for me in the past is probably sick of reading this one (though you’re all welcome to beta again if you like!).

An unintentional hiatus

So, I had been all gung ho on blogging here every day.

And then I started the couch to 5k program, and promptly injured both knees on the second week.  Now, after a lot of physio and a lot of exercises, we’ve figured out that it’s not a structural problem with my knees (thank goodness, especially since both of them make rather horrid crunching sounds when moving) but actually problems with my hips and muscles basically not doing what they’re supposed to.  It’s improving, but I still can’t walk more than about 200m without being in pain and limping.

The basic gist of this is: I’ve been in a lot of pain from it, and I haven’t been sleeping well because of the pain, and because I haven’t been able to get enough exercise.

And, as a result, I’ve been a grumpyguts.  I’ve also been dealing with some side effects of coming off medication, which has made that even worse.

Naturally (I suppose), I haven’t really been accomplishing much of anything.  I’ve been writing, because turning up to the page is what I do, no matter what, but everything else has kind of been piling up.  I need to kick my own arse into gear and get back into the routine of it all, dammit.  Maybe starting to blog here again properly will help a little.

The ironic thing is that I’m pretty much used to pain.  Fibro pain is always, always there, no matter what, and has always been there since I was about thirteen.  But it’s like background static, except when it flares badly.  I feel like a wuss for how badly this knee/hip issue has derailed me.  But I am working on strength, working with my physio, and I will get back there.  Walking first, then running very slowly.

And for the record, a couple of wise people have pointed out to me the huge injury rate that couch to 5k produces – I think it’s an awesome thing for some people, especially if you’re already somewhat used to exercise and have no muscular or joint programs, but for true couch potatoes (of which I categorically was not one when I began, being used to walking 3-4km daily), a much slower program is probably a much wiser choice.

 

Things that make me happy

Australian Raven

I woke up this morning with a migraine.  Not sure why – possibly consumption of trigger foods, possibly just incipient Weather.  I stumbled out of bed to take some meds, and the nausea is only settling down enough now to get some food on top of them.  Hopefully I’ve gotten to it early enough that it won’t become crippling.

As a result, I am feeling pretty cranky about life.  And so I make an effort to cheer myself up and list things that are making me happy right now:

  • There is a flock of Australian Ravens that have taken residence here, to the point where I can see one almost every time I look out the window.  Just glanced up now and saw one wandering across the neighbour’s roof.  I cannot express how much I love these birds.  We also have Willie Wagtails nesting somewhere in the garden again.
  • I am so incredibly amazed by the person that my son is becoming.  I cannot believe sometimes that my husband and I made this little boy, and I am so grateful for the opportunity to have him (and to have the support I need to be able to be a parent).
  • Never.  I feel like I am learning so much as a writer these last few years, and I really think I’m going to be able to make this book good.
  • My writing group.  We are diminished by one member at present, due to complications in her life, but we are still going.  They feed my soul and I am constantly astonished by how amazing they are as writers and people.
  • My health, which is slowly improving, migraine be damned.
  • Having found a massage therapist who is incredibly gifted at dealing with and easing the pain of fibromyalgia.

I could actually go on for a long time.  Huh, six months ago I probably would have struggled to list even two things.  Take that, depression!

Some moments are sobering: Pain

Pain scale from Hyperbole and a Half, which remains the Best Ever.

Sometimes you have moments that are sobering.

For example: this morning, while browsing Twitter, as I am wont to do in the mornings, I came across someone posting a pain scale.  This one was slightly different to what I get to use at my rheumatologists’s, which is just a little sliding scale thing from “Hey, I’m okay” to “Kill me now” (I may exaggerate slightly on those labels).

Anyway, on that little sliding scale I usually put my daily pain levels at somewhere in the middle.  Because, yanno, it’s there, but mostly I just ignore it and get on with everything.  Sometimes its worse, and I head to the painkillers.  For the record, it’s usually back pain (SI joint mostly) and headaches that have be running for the pills.

Also – Running for the Pills is totally my new band name.

Ahem.  This pain scale was slightly different to what I’m used to:

So, on my rheumatologist’s sliding scale, I usually place my regular amount of pain somewhere in the middle, around a 5.  But looking at this, and the activity tolerance scale, I’m actually usually at a 7-8 on a daily basis.  That kind of stopped me in my tracks.

I know that there are probably people who would say that these kinds of pain scales aren’t that useful for chronic pain, and maybe they’re not.  It’s certainly true that I’ve gotten used to being in some kind of pain pretty much all the time.  Right now, most of that pain is fibro related, since it’s cold this morning, which always triggers at least a mild fibro flare.  That will improve as the day gets warmer and I move around more.

These days I put a lot of effort into appearing functional, despite the pain.  I get up, I shower, do my hair, put on makeup.  I try not to talk about it much in real life.  I don’t need a cane to walk any more.  I can stand on public transport if I need to.  I go out walking, I lift my kid up when he needs it (which is a bit, since he’s a huge cuddler).  But it’s still there.

And still, I know that there a lot of people who have a lot more, a hell of a lot more, to deal with.  I am acutely aware of the privilege I have.  I don’t have to work, because I have a wonderful spouse who supports me financially.  I choose to work on writing, and I am mostly able to pursue this because of family support giving me childcare.  I have access to the medical care I need and can afford to see specialists and get tests done.  I don’t have to worry about affording medication.  I am so, so, lucky, and I know it.  Hell, I even got to have a kid, which a lot of people don’t get, especially those with chronic illness.

Still, it kind of sucks, and sometimes I need to say that.  And then I get up, and just get on with things.  There’s a lot to be done, even with pain.

Sometimes there are rainbows…

Rainbow

Supernumary rainbow spotted yesterday

 

This is a post that, frankly, I hesitate to make.

Here are some facts: I have been sick with autoimmune illness for over ten years now.  It’s a vague thing, this illness, and has been shifted around from being called lupus, to undifferentiated connective tissue disease, to seronegative rheumatoid arthritis.  Fibromyaglia is always along for the ride, as well.  Whatever it’s called, my treatment has remained the same – DMARDS, painkillers, the occasional fun dose of drugs that come with the warning of “Side effects may include death!”.

This illness was the prime reason I had to give up my career in science, any chance of working full time.  I took pills to sleep, took caffeine in a desperate effort to stay awake.  On a bad day, the most I could move was between the bed and the couch.

There has been improvement over the last decade, slow but sure.  I was able to do some gentle exercise, but the pain and fatigue was always there.

These last handful of months I was trialling a new drug for the arthritis, since it had gotten bad over the summer.  It looked good, but then looked bad, eventually causing liver damage.  I was pretty much a mess, then, with all the symptoms that I hadn’t realised were caused by that damage.  Chronic illness is fun – you can be nauseated, unable to sleep, unable to think, in pain, bloated etc etc – and you just think that it’s part of the usual mess of symptoms.

I have now been off the drug of evil for a week and a half.  I’m going to go and get my liver functions tested again today, but I’m going to be very surprised if they’re not normal now.

But, here’s the rainbow: I feel fantastic.

I’m sleeping without needing to take drugs, my mood is awesome, I’m walking between 3-4km most days (including a handful of sprints in there), I’m losing weight for the first time in years (weight I need to lose).  I’m not needing to nap during the day, and I’m actually able to work and concentrate for a decent length of time.

I don’t know if it’s even possible to challenge your body in such a way that you can “fix” autoimmune illness.  It’s entirely possible that I’ll crash and burn sometime soon.

But for now, I’m feeling awesome.

And oh Gods, I had forgotten what it feels like to have energy, to be able to concentrate properly.  I managed to work my arse off getting a short story written and submitted on a tight deadline.  I have energy to actually play properly with Liam.  I walked around the zoo on the weekend and still had energy to walk home from the train station.  I had sore muscles after that, but I didn’t crash out.

I don’t know if this will last.  I hope it lasts.  To not have to ration energy again…well, I’m probably not going to do myself any good in thinking that way, in case this doesn’t last.

But for now, I’m making the most of it.

How to be sick

How to Be Sick by Toni Bernhard

 

Here’s a thing: coming up in March it will be ten years since I first fell ill.  At first, we thought it was a simple flu.  And then I ended up with severe post-viral fatigue.  And then everything else – the headaches, the joint pain, the sleep disturbances.  Cue two years of struggling through, with the eventual diagnosis of lupus/rheumatoid arthritis (depending on who you’re talking to; for me, the treatment is the same) and fibromyalgia.

It’s hard to believe that it’s been almost a decade.  This illness was part of the reason that I didn’t pursue a career in science.  This illness put me on a disability pension after I finished my PhD.  This illness has limited my life, but thankfully, has been treated well enough that I’ve been able to put my life back together, albeit not in the fashion I always thought I’d live.  Despite it, I have continued to write, and run a household.  Thanks to the support of my husband and family, I’ve been able to have a son.

And yet.  Despite all of this, despite getting the right treatment, despite therapy, despite everything, I’ve still found in myself a lot of anger about being ill in the first place.  This book is the  first thing that I’ve discovered that has given me some peace with that illness.

I owe a great debt to an online friend who pointed me towards this book (as well as the facebook group that was created to help people work through the book).  I am not a Buddhist, and I thought at first that would be a problem with working through the book and implementing work from it.  And yet, I didn’t ever find that to be a problem,  Bernhard’s style is so open and easy to read, integrating some of her own Buddhist practice in easy ways to help find some peace.  I’ve found myself incorporating several of the practices into my life since finishing it, and have found that they’ve given me a lot of peace.

I highly recommend this book to anyone who is dealing with a chronic illness, or to anyone supporting someone with a chronic illness.  I don’t believe that anyone should stop fighting to find a way past illness, but there is a lot of peace in acceptance of it at the worst times.