If you were looking for an inspirational story about coping with chronic illness, this is definitely not it.

I usually write a travel blog. That’s because I usually travel and I’m usually free spirited and exuberant and adventurous. Lately I’ve been a bit busy having a chronic illness.

According to said travel blog, I am currently hanging around in Billy, our beloved black Ford Econovan, somewhere on the South West coast of Australia. I think I was walking along jetties and paddling with dolphins, not far away from riding horses through rivers and accidently swimming with stingrays. In reality I’m in bed in New Zealand with Lupus, regretting that I even started thinking about writing this because today it feels as though I’m typing with fingers I broke about 2 weeks ago.  (Lupus isn’t a cute name for my dog by the way – it’s an autoimmune illness that is refusing to leave me alone.)

Image and video hosting by TinyPic – Lupus? What Lupus?

There are a couple of reasons I decided to write this today, despite the arthritic fingers. Firstly I feel like I owe a proper explanation to those (few) that did read my travel blog and those that keep encouraging me to write more. Secondly, I need to admit to myself why I’ve not been writing it.

Truth is, I feel so far removed from that person who paddled with dolphins, rode horses through rivers etc etc. I can barely remember what it feels like to wake up each morning, hungry not only for bacon and eggs cooked on a camp stove and a 3-in-1 sachet of instant coffee…but hungry for new sights, new sounds, more red dirt on my feet, more sun-weathered skin, more to take in, something else breathtaking, something else astounding. It’s hugely addictive. It also demands a lot of energy. Lupus unfortunately is a master at zapping all energy and enthusiasm so as I became more ill, keeping up with the blog became a chore. I concentrated on being a traveller and chose to write later, once we settled for a short while.

Since Lupus started winning I feel grey. Dull. I wake up exhausted. Perhaps I’m having all of my adventures in my sleep now, because I wake feeling as though I’ve climbed a mountain. My lungs hurt. My joints stab and throb and stiffen up. I walk awkwardly, like I don’t fit together quite well enough. My head feels thick and heavy – I’ve lost my quick wittedness and spark. My hair falls out. I have coldsores and mouth ulcers. I google my symptoms way too often because I’m desperate for an answer that might lead to the right treatment. (I believe the term for this is “cyberchondria”). I’m counting down the days until my specialist appointment. I never even used to be aware of what day it was, just what time the sun would rise and set; a blissful lack of structure, devoid of numbers and definitions. Now I’m aware that it’s exactly 17 days until I can get some further clarification on what my body thinks it is doing. 17 days and counting.

I thought perhaps that speaking to other people with Lupus would help me deal with all of this, so I joined an online community. It has some benefits, the main one being that you never need to explain everything from scratch; most people there know exactly what you’re talking about and accept it without questioning it. Unfortunately though, most of them are a bunch of fruit-loops. They believe in God and some even think that Lupus was chosen for them and that it has gifted them with many other things, like slowing down to appreciate life more. Fuck that. They get sun-protective clothing custom made (Lupus makes you sun-sensitive, and UV makes lupus worse) and have it emblazoned with logos like “Hope, Strength, Courage.” These people get tattoos, declaring their health conditions. They suggest crafting as a good pastime activity for when you’re ill. My partners’ 63 year old mother crafts – I will not craft. These people write inspirational stories. Inspirational stories about coping with chronic illness make me sick and pressure me into being positive about feeling like shit. I don’t want to be patronised by a smug twat who has gone into remission and got on with their life, I just want to be a smug twat who has gone into remission and got on with my life. I want to go into remission and write a travel blog.

But currently, I cannot connect with the woman I used to be, that one in the van with the window down, driving barefoot, vibrant orange sands and pristine blue skies whizzing by. I can’t deal with the unpredictable, the unplanned. And I can’t write about it because it hurts. It’s like writing about a lost loved one…only it’s myself. I’ve tried so hard. I’ve sat, laptop open, my scribbled journal notes to hand, flicking through hundreds of snapshots, trying let the words come out – but they won’t. They just won’t. I cannot do it without getting upset. And I don’t want to be upset while writing about some of the best times of my life.

So please, bear with me while I kick Lupus’ arse (hang on…that almost sounded inspirational…) and I’ll be right back with the travel blog. I’ll keep trying. I’ll keep opening my journal, looking through photographs. And it will happen when it happens.

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16 responses to “If you were looking for an inspirational story about coping with chronic illness, this is definitely not it.

  1. I can’t even begin to understand what ur going thru – just wanted to say, if u didn’t aim to sound “inspirational” u definitely failed 🙂 in a good way, bcz i don’t know u and it sounds to me like ur already on ur way to kicking lupus’s ass! gluck in whatever u choose to do and become.

    • Thanks Tala – I shall have to try harder to be cynical, bitter and twisted next time. I’m not sure “inspirational” suits me. Thanks for the well wishes!

  2. The best views aren’t from the tallest peaks, but from being above the deepest valleys. Keep climbing.

    Thanks for keeping us up to date. Now get back to ass kicking!

  3. Life with lupus is not what I expected either, but I have been determined to make it what lupus didn’t expect from me! Focusing on what I CAN choose, accepting what I CANNOT. I hope this lupus flare passes quickly for you! LA

    • I’ve forgotten what flares are…just been feeling terrible non-stop for the best part of 6 months. But thank you and I wish you luck in your adventures.

  4. As a 13 yr severe chronic pain sufferer you’re post definitely resonates with me. Especially since my pain level has gotten worst. I’m usually trekking along but there are times you just got scream!

    • 13 years…wowza! After 13 years of this shit I think you are perfectly entitled to scream. In fact, I reckon you should swear as well. Do it! You’ve earned it! Be as cynical add you like.

  5. DAMN good blog right here. I haven’t had quite the adventures you have, but this resonates with me just the same. What you said about maybe having adventures when you are asleep is so good. It sure seems like SOMETHING is going on when we wake up with everything hurting, huh? thanks for sharing this!

    • Hi Tony, many thanks for returning the favour! I’ve really enjoyed reading your blog although find it challenging at the same time. I look forward to reading more.
      Helen.

      • Hi Helen,
        I’m pleased you enjoy reading it.
        I suspect it gets a bit challenging because it pretty much comes out in the same way I think about these topics. Imagine living inside my head!
        All the best & I’m looking forward to reading more of yours
        Tony

  6. “Unfortunately though, most of them [members of online community support] are a bunch of fruit-loops. They believe in God and some even think that Lupus was chosen for them and that it has gifted them with many other things, like slowing down to appreciate life more. Fuck that. ” Ha!! My thoughts exactly, although for a somewhat different community (multiple sclerosis). I’m so sick of reading the mental diarrhea from these groups that, if it weren’t for the occasional nuggets of useful information or advice, I’d chuck ’em all out the window! Thanks for following my blog (http://stargzrblog.wordpress.com/) and thereby introducing me to yours. I can already tell that I’m going to quite enjoy your writing!

    • I was worried when I wrote that, I didn’t want to alienate an entire community that do, on occasion, prove rather useful.
      I have to say though, since developing my “new” illness (neuromyelitis optica) I’ve ventured into that community and they seem better. So it sucked to be paralysed but at least I’m not going to end up knitting EVERYTHING and posting repetitive, vague motivational quotes on Facebook.
      Looking forward to reading more from you too! Stay sane (ish)!

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