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.

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.