Sunday, May 29, 2011

Pacing, planning and prioritising....

I am again, sitting on the couch in my pyjamas, though this time I am actually working (and by working, I mean waiting for a call to come through.) Note: if you ring a mental health helpline, the person you speak to may very well be wearing pyjamas. It's kind of an industry thing :P

Anyway, I wrote a blog post last night, but then the internet stole it and won't give it back.... or maybe I'm just really technologically challenged. The point is, I was too tired to re-write it and in the interest of not exhausting myself, I'm just going to post an article I wrote for my work newsletter instead. It's about pacing, so I thought it was apt...

When I think of self-care, I usually think of adding things to my day: adding exercise, eating healthy foods, getting enough sleep. Recently I’ve realised self-care is just as much about saying “no” to things. Now, I’m not talking about the obvious – saying no to cigarettes, alcohol, stress etc. (although that’s a part of self-care too!) What I mean, is saying “no” to those things that suck up our time and leave us collapsed on the couch at the end of the day.

When I’m trying to explain what it’s like to live with a chronic illness, I often talk about Christine Miserandino’s “spoon theory”. The essence of this theory is that, when you live with a chronic illness, everything you do costs you a “spoon.” Under normal circumstances, a healthy person will have an almost unlimited supply of “spoons”. They don’t need to worry too much about overdoing it and running out. A person with a chronic physical or mental illness will have a limited amount of “spoons”. To make sure they still have enough energy to make dinner at the end of the day, they will need to keep an eye on how many “spoons” they use up during the day.

This is where pacing, planning and prioritising come in. I know that for me to stay healthy, I need to really think about what I include in my day. There are things that I have to do because... well, they’re just facts of life – work, study, chores, cooking. There are things I need to do for my health – exercise, physio, doctors appointments, and then there are things that I want to do – creative projects, socialising, retail therapy etc. Prioritising doesn’t mean anything that’s not 100% necessary gets chucked off the list; it just means I have to work out how I’m going to fit it in without running out of “spoons”. It might mean that I choose to meet up with friends on the days I’m not working. Or it might mean that if I’ve got a doctor’s appointment and a deadline on a writing project, the cleaning might have to wait until tomorrow. If I know I’ve got a busy day coming up, I’ll make a big meal the day before so I can have leftovers for dinner rather than having to cook after a long day.

Learning to pace myself has been a hard journey. Sometimes I’ll wake up feeling like I have an unlimited number of “spoons” only to get halfway through the day and realise I just don’t have the energy to get everything done. Then there are the days where unexpected things happen, and my energy is taken up with things I hadn’t planned for. Either way, the next day I have to come back to it: pacing, planning and prioritising. It’s a slow journey, but in the end, it will all get done. Just maybe not as quickly as I thought.

Check out spoon theory at:

Little Miss Autoimmune :-)

Saturday, May 21, 2011

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.