The Difference A Decade Makes

(Cross posted from Facebook)

Happy New Year, everyone! (It's already new year's eve here in New Zealand, with the decade ending in just a few hours.)

At the end of 2009, I was on a lot of steroids and pain killers, neither of which were really helping my autoimmune arthritis. My weight was ballooning, my muscles were weakening in an alarming way, and I could barely walk. I was very depressed and anxious, and it didn't seem like any of it would ever get any better.

But... a lot can change in 10 years.

I had friends and family who loved and supported me, a counsellor who really helped, and a nurse and GP who fought for me, at times against my own specialists. The nurse got me on an amazing miracle drug, I went into a partial remission, and got my life back on track.

But of course life is never that simple. There have been many ups and seriously low downs, many extra diagnoses, and the amazing life-changing gift of an assistance dog, from the fabulous team at Assistance Dogs New Zealand.

I've written books, fallen in and out of love, and had so many joyful, exciting, weird and wonderful moments.

My body has done some f**king weird shit, and it's been both hilarious and terrifying, but I'm glad to say most of the time the laughter has won. And I'm even more glad to say, I am ending this decade happy, and with more health and strength than I ever could have imagined ten years ago.

Living with chronic illness and disability is so so hard at times, but part of what makes it hard is the fact that it's so changeable. Don't ever forget, sometimes that change can be for the good.

Little Miss Autoimmune

Shoulds don't work for me...

There's a part of me that feels silly, sitting down to write a blog post at this stage. This is only partly due to the fact that as I write, I'm sitting on my couch wearing pyjamas - that can only be described as reminisant of the ones Bridget Jones wears during her All by Myself meltdown - fluffy pink bed socks and an over-sized dressing gown. See, this doesn't embarrass me. Despite the fact that I'm still in my twenties, this is pretty much an average Saturday night for me. After years of thinking "I should be doing what other people my age are doing" or more realistically "I should pretend that I want to be doing what other people my age are doing" I have come to the realisation that "shoulds" just don't work for me. I'm happy sitting on my couch in cozy clothes on a Saturday night, and if I'm happy, why "should" I be doing something else.

But I digress...

The reason I feel silly writing a blog post at this stage, is that it has been *gulp* five months since I posted anything. I gave up even pretending I was going to post soon, because I could tell it just wasn't going to happen.

When I last wrote, I was incredibly sick. Both the joint symptoms and systemic symptoms of my arthritis were out of control... things got pretty hairy there for a while. I was having trouble... well doing anything really. Even getting up to go to the bathroom was a huge struggle, especially as I was having frequent falls. Simple tasks had become incredibly difficult and solid food had become a distant memory as the pain and stiffness in my jaw made chewing near impossible (eating icecream and soup for months on end, is not as fun as it might seem!)
Added to this, I'm prone to periods of insomnia and the constant pain was making falling/staying asleep hard to say the least. Crazy Helen was starting to emerge...

But, it's not all bad news. In fact, what happened next was about the best news I could have hoped for. I'm currently in a partial theraputic remission*

A stint on pain killers helped with the pain levels and sleep problems (thus saving my sanity!) but they couldn't do much to help the systemic symptoms. Among other symptoms, I had to have several weeks off work as the inflammation in my voice made shifts on the phone impossible (no-one ringing a helpline in crisis really wants to talk to creepy-croaky voice lady) and I had near constant double vision.

Fortuately my nurse managed to get me switched from Humira injections to Enbrel. Up until this point, I'd been told there were no more medical options for me. My doctor (and my nurse too, really) believed my condition was drug-resistant. Therefore switching me was going to have no effect. My nurse insisted on at least trying (she told me later that after arguing with my doctor he ended up saying "fine, do what you want, but it's not going to work.")

12 hours after the first Enbrel injection I was in a partial remission - at which point my nurse became pretty much my favourite person in the world! For a year before this, I hadn't been able to leave the house without Molly Stick, but the day after the injection I walked down the stairs unaided. Of course, my dad wouldn't actually let me go anywhere without Molly. I was all for going for a run that first morning, but he wasn't so keen on having to rescue me, if I collapsed!

It became clear that I wasn't in a full remission - I still had symptoms, though for the most part they were pretty minor. Every so often I'd wake with full on swelling and pain, but mostly they were at a manageble level.

Now... this post is getting a bit long, so I will pick up the story from here in my next post... (in the next installment I go to pain clinic and almost get murdered by an ipod!)

I'll just skip to my point. Part of the reason I've left it so long between posts is the number of shoulds piling up in my brain - "I should have posted already" "I should write my post tonight, despite the fact that I'm too tired" "I should have something more interesting to say" "I should be able to write this more coherantly" "I should do the housework/washing/cooking before I post" "I should write something BRILLIANT to make up for the long absence."

Well, I'm done with shoulds. I refuse to be paralysed by shoulds.

So there it is - I'm a Bridget Jones look-a-like, slack blogger... and I'm proud of it.

Thanks for reading

Little Miss Autoimmune :-)

*Not sure if everyone will understand the word "remission" in this context. I'll include a definition in my next post.