Thought for the Day.

I went with my partner yesterday while he enrolled in a massage therapy course (this is why I love him, and no, I didn’t make him do it, but I am happy and grateful). It involved sitting bored in a classroom featuring anatomical posters for about an hour, so I read the posters in excruciating detail.

One was on the spine, and I discovered that everything on the ‘disease’ half of the poster features in my scans. I also have a couple of things that weren’t on the poster. This was simultaneously depressing and filled me with a weird sense of achievement. At least I will be the best, most complicated massage practice dummy ever! Yay for something about my medical weirdness being helpful 🙂

Motivational Conflict and Pain Avoidance.

http://www.bodyinmind.org/a-new-perspective-on-avoidance-behavior-research/

I recently read some research on avoidance of behaviours which cause pain, and the effects of conflicting goals on that avoidance. The gist was that people with pain will engage in behaviours that they know will cause pain if there is motivation to do so because the behaviour will fulfil a goal that is important to them. There was also evidence that the brain helps override the pain avoidance by dulling pain signals, thus facilitating the achievement of the goal.

I found this kind of irritatingly simplistic. Of course people with chronic pain sometimes override their inclinations to avoid pain so that they can do something that is important to them. I’ve done this recently; on a bad back day, I was giving my favourite six-month-old boy a cuddle while walking around. It was uncomfortable but manageable. When my discomfort increased, I went to lay him down on the couch next to his mum, which involved bending over with a few kilograms in my arms; usually a big no-no for me, but I hadn’t really thought it through. Halfway down, my back seized and I was suddenly in intense pain.

My choice was to drop the baby and right myself, or continue in the movement causing me pain. I did not drop the baby (thank goodness!) because the goal of keeping him safe was more important to me than the goal of making the pain subside. In the moment, the decision to not avoid the pain was easy. The aftermath of that movement was five days largely bed-ridden and in agony. I would still make the same decision again.

I find this research, and the line of thinking it implies (that if it is important enough to you, you’ll do [painful thing]), problematic because it omits the consequences from the equation. When medical staff or allied health professionals see chronic pain patients, they see our present pain but not the aftermath of our actions. When I visit a physiotherapist and she asks me to bend in a certain way, the movement may not cause unbearable pain in the moment, but it may mean a week spent in bed because I pushed beyond what was comfortable. The next time I see her, she will say, “I know you can do it, I saw you do it before”, but she isn’t the one helping me get to the toilet for a week in between appointments.

To me, the equation is not:

If [importance of goal] is larger than [immediate pain of action to fulfil goal], then complete action.

It is something more complicated:

If [importance of goal requiring action] is larger than [Expected intensity + duration of pain] x [fear of that pain and consequent disability], then complete action.

It also makes me wonder where novelty comes into it. When [expected intensity + duration of pain] is novel and therefore unknown (such as when engaging in a new or unfamiliar activity), is an individual more or less likely to act? Will that vary by importance?

Personally, when the goal is more important and the potential pain is unknown, I think I am more likely to act than when a goal is important but the potential pain is known (because I can hope that the pain will not be too bad, and I know the action is important). When the goal is less important and the potential pain is unknown, I am less likely to act than when the goal is unimportant and the potential pain is known (because I am not willing to risk large potential pain and disability for a relatively unimportant goal).

How do others deal with these decisions? How do you decide when to override your pain-avoidance behaviours? And does anybody else sometimes just say, “Screw it, this isn’t important and my potential pain is likely to be huge, but I’m going out dancing anyway because I’m tired of being sick” – or is that just me? 🙂

Silver Linings and Small Victories.

Being chronically ill or in pain is not, generally speaking, particularly awesome. It isn’t always terrible, but sometimes it is, and people aren’t exactly lining up to be gifted with the eternal joy and enforced co-dependency of being sick for most of their lives.

Also, chronic illness and pain aside, I am not a hugely positive person. I am sarcastic and cynical and live with the mentality that, if I expect the worst, at least I can prepare myself for it, and if it doesn’t go as badly as I’m expecting, I’ll be pleasantly surprised. I have kind of a dark sense of humour. I understand that this type of disposition makes you more prone to depression and a short, nasty, brutish life, but it’s a hard thing to turn around.

I’m probably slightly more complainy and pessimistic on this blog than I am in real life, because I feel like I can vent about the negatives to the faceless internet in a way that I can’t always to the people who love me, care about me, and worry about me. Plus, they get sick of hearing it by virtue of being stuck with me a lot more often than my readers. Having this blog as an outlet for when I am struggling or things aren’t going that well is important, and serves a purpose for me.

However, I don’t want it all to be doom and gloom here. There is research in the positive psychology and resilience realm which indicates that individuals with chronic pain and illness who practice mindful gratitude – taking time to note what is good in their lives and for what they are grateful – have better outcomes.

(Side note: this topic is something I have encountered in my studies, but a quick search turned up these two pieces of related research for anyone interested:

http://greatergood.berkeley.edu/pdfs/GratitudePDFs/6Emmons-BlessingsBurdens.pdf

http://hpq.sagepub.com/content/early/2012/03/12/1359105312439733.full.pdf+html)

I don’t want to pretend it is always (or even ever) easy to be grateful for my illness and pain, but there are things in my life which I am grateful for and proud of, which have come about as a direct result of my spinal problems and autoimmune disease. So, I will be making a concerted effort to, once a week, make note of them here. Sometimes there might be lots, sometimes only one, but this is me making myself accountable for my own mental health in the face of adversity.

This week, I am grateful to have a mother who understands what I am going through.

I am grateful to know how deeply my partner cares for me and wants to help me.

I am grateful to be much better than I used to be at prioritising what is truly important and to have finely honed time management skills.

I am grateful to have access to the internet, which facilitates connection and entertainment when I cannot leave my house, or my bed.

I am grateful to have grown in patience and to have a less judgemental attitude than I used to.

I am grateful to have a significantly increased capacity for empathy for those who are distressed or suffering, which will make me a better psychologist, in addition to making me a better person generally.

What are you grateful for?

Sick Day.

Weary, weary.

I am having one of those bone-crushing, limbs-made-of-concrete, too-tired-to-walk-across-the-bedroom-for-my-meds days. Which is made even more frustrating by the fact that I’m not even in much pain today. This should be a good day, where I catch up on chores and walk to the shops, and instead, it’s 3:50pm and I’m still too tired to shower. Washing my hair seems about as achievable as climbing a mountain right now. I am hungry and home alone and too tired to prepare food.

I realise sharply, on days like this, that although I tend to think of myself as having ‘a stuffed back’, or sometimes as having chronic pain, what I actually have is an illness, of which my back problems are only one symptom. The largest, most inconvenient, and most life-altering symptom, definitely, but taken together my health issues are more complicated than that.

Most of the time my other problems are minor: skin rashes and eczema, hair loss, poor temperature regulation, low blood pressure, dizziness, nausea, vomiting, reflux, diarrhea, constipation, profuse sweating, shortness of breath, heart palpitations, tremors, Reynaud’s phenomenon (purple feet with white toes), occipital neuralgia (migraine-like symptoms from a neck issue), other joint pain. Each of those things in isolation, although irritating and occasionally debilitating, is largely manageable, so I often focus on the minor problem occurring at the given moment and lose sight of the fact that each piece is part of a bigger picture.

For the last week or so, my brain fog has been particularly bad. I’ve kept losing words on the tip of my tongue, forgetting why I entered a room or opened a browser window or the fridge or picked up my phone, started a sentence only to leave it hanging mid-air while I panic, eyes darting, trying to retrieve my thought. Sometimes I can piece it together, sometimes it comes back the next day, sometimes it is gone for good and I worry it was important.

When my lovely, articulate, intelligent brain – the brain I count on to get me through my course and into my profession, to keep me who I am, to make me who my partner and family and friends love – is failing me;

When my body, despite having nothing obviously wrong with it, is overwhelmed by the simplest tasks;

When this happens, on days like today – more than in hospital, hooked up to IVs, with fresh surgical scars and scans and doctor’s appointments – I feel sick.

Thought for the Day.

Worst effect of peripheral neuropathy ever: I just put a piece of chocolate to my mouth, lost my grip on it, and it fell onto my filthy (currently can’t vacuum!) kitchen floor. It touched tongue so it was wet and got fuzz stuck to it. Devastated.

Side note: Let me plug Loving Earth chocolate for a moment. It’s raw, gluten-free, dairy-free, superfood-packed, and organic, and comes in versions sweetened with either agave or coconut nectar, with the later purportedly being better for people sensitive to insulin spikes. My favourite flavours are sour cherry and acai (tastes like dark Cherry Ripe) and orange and gubinge (Kakadu plum). Available here http://www.lovingearth.net/

Blog Award.

The very kind Mommabel from True Life is Stranger than Fiction nominated me for a Versatile Blogger Award! I only found her blog on living with autoimmune disease recently, but am already enjoying another perspective on many of the same challenges I face. You can find her writing here.

The award involves picking 15 other bloggers to award, and listing seven interesting facts about yourself. I follow approximately a million blogs, but I thought I would stick to my favourite chronic illness/health bloggers, since that’s more likely to be relevant to my own readers, so I have a few less.

I would like to nominate:

http://livingsick.com/

http://sunlightinwinter.wordpress.com/

http://mlindh359.wordpress.com/

http://dysautonomiac.com/

http://mecfsdreamland.wordpress.com/

http://fibrofeist.com/

http://bobisdysautonomia.blogspot.com.au/

http://25pillsaday.wordpress.com/

I’ve been following some of these for longer than others, but all of them have a writing style I love (is it just me, or do people with chronic illness have an awesome sense of humour?) and a lot of useful information.

And I’m not sure how interesting these are, but some random facts about me:

1. I am ambidextrous. I could write with both hands until I was six, when my teachers told me to focus on one (I went with left). My writing has deteriorated through lack of practice, but I still use both for painting, sport, using scissors, makeup application, and pretty much anything else. I like that I defy generalisations regarding brain lateralisation!

2. In addition to a 2.5 year old black cat named Bella, I share my house with a 4 year old, 2.5 metre, 5 kg carpet python named Tannis. I was terrified of snakes when she moved in, but have grown much fonder of her since, although I’m still not brave enough for cuddles.

3. I am a word nerd. I studied linguistics briefly, and have English teacher as my back-up career. I am constantly mentally correcting typos and mistakes in other people’s writing (although I’m sure my own has plenty!), and correct my partner’s word usage a lot, which needless to say he does not particularly enjoy. It’s a compulsion.

4. I am wildly unathletic but have always enjoyed ballroom dancing (particularly Latin styles). I did lessons from the age of 10 to 16 and got to competition level. I’m still hopeful my back will allow me to restart lessons soon, although my spinal implants have forever ruined my fluid hip-swivel.

5. I am pretty awesome at baking, but can’t cook to save my life. If it does not have a high sugar content, I will ruin it. I recently started eating Paleo and am discovering that baking with grain, dairy, and sugar free ingredients is a lot more challenging.

6. I also have a black thumb. I kill plants at an alarming rate, even when I try really hard to keep them happy. I am still mourning the loss of a beautiful purple orchid, although I think this one survived for record time (about two months). Unfortunately, I live in the house my grandmother (an avid and talented gardener) used to live in, and I have killed at least half of the plants here.

7. My mother is Scottish, and I did some family history investigating for her recently. It turns out that her father’s family motto some several hundred years ago was Latin for ‘Swift and Strong’. Considering my family is more ‘Slow and Crippy’, I find this intensely amusing.

That’s it! Thanks again to Mommabel for the nomination.

Link Round-Up.

http://hyperboleandahalf.blogspot.com.au/2010/02/boyfriend-doesnt-have-ebola-probably.html

At the risk of being hyperbolic about a site called Hyperbole and a Half, this is the most important thing on the internet for individuals with chronic pain. Nope, not the Wikipedia page for your illness, or the website you can use to make doctor’s appointments, but this: A Better Pain Scale. I would have already had this printed on a t-shirt to wear to medical appointments if that wouldn’t require me pointing at my boobs when confronted with the “where are we today” question.

http://www.xojane.com/healthy/my-disease-my-family-and-my-finances

A realistic and practical (while simultaneously depressing) account of the financial impact of degenerative illness, and one family’s measures to deal with it. While the government support and likely the legal issues vary between the US and Australia, it still raises some useful things to think about when preparing for probable long-term disability and unemployment.

http://now.tufts.edu/articles/world-hurt-pain?utm_source=Tufts+Now+-+Faculty+and+Staff&utm_campaign=c675a03828-Tufts_Now_internal_120919&utm_medium=email

An interesting look at the history of pain management in the medical field. Happy 60^th anniversary, pain specialisation! The article touches on the mechanisms by which chronic pain perpetuates and is distinct from acute pain. It also relates research findings that for individuals with chronic pain or illness, “blogging relieved personal isolation while providing a renewed sense of purpose”. Win!

http://now.tufts.edu/articles/healing-words

Further information regarding the research mentioned above. I had a project involving use of health blogging as a support for those with chronic illness in mind for a potential Masters project, so I’m excited to see research being done in this area. I think online services are uniquely appropriate and important for individuals with illness, pain, and mobility, who may otherwise be isolated and unable to attend pain management or support services. Also, I really wish I was in the US and could do the Tufts School of Medicine Masters degree in Pain Research Education and Policy. It sounds amazing! Hopefully more universities will begin to offer pain management-related courses in the health professions.

http://www.youtube.com/watch?v=KRFanGInvlc

A video on Ronald Melzack, a psychology professor who was a pioneer in pain research and whose findings are integral to our current understanding of the complex processes involved in the pain experience. The video also gives a good outline of historical and current pain theories, including the gate control theory of pain. Melzack also created the McGill Pain Questionnaire based on his research, which as a pain patient I am very familiar with!

http://www.bodyinmind.org/seeing-a-needle-prick-makes-it-worse/

Empirical support for my mother’s advice to wiggle your toes when you are getting an injection/ having an inept phlebotomist dig around for your cowering veins during a blood draw; by not only avoiding looking at the needle go in, but focusing on another part of your body, your perception of the pain is reduced. My mother also sings ‘So What’ by Pink during particularly painful procedures, but each to his/her own.

Thank you to Sunlight in Winter for pointing me in the direction of a few of these valuable links, and for the further resources available she has collected here:

http://sunlightinwinter.wordpress.com/resources/

Acceptance and Giving Up.

http://fibrofeist.com/2013/01/15/what-i-need-you-to-know-part-3/

http://bobisdysautonomia.blogspot.com.au/2013/01/acceptance-is-not-giving-up.html

Having read these two posts on the same issue this week, the difference between accepting your life and illness as it is and ‘giving up’ is on my mind. From my experience, chronically ill people tend to understand acceptance, while non-sick people tend to view it as giving up if you’re not constantly pushing for new diagnoses, new treatments, and new information.

I think, at least for me, once the time comes when you have all the information you can, and have tried all the treatments that are appropriate and suitable for you (which includes only as many as you are comfortable with), if you are then still ill or in pain, there is a lot of wisdom and peace that comes with accepting your life as it is. Which is not to say I can always manage it!

At this point, I realise that, as of now and short of developments in stem cell technology or some awesome laser reminiscent of sci-fi, there is no cure for what ails me. I can manage my symptoms using medication for pain and steroid injections for flare-ups, plus surgeries as they become indicated. However, none of these things can fix the degeneration causing my pain, or the genetic predisposition causing the degeneration, and sometimes they cannot even manke my pain manageable.

Although I continue to educate myself and be quietly hopeful for medical advances that could benefit my hypothetical children if not myself, I am not counting on my problems going away. I am getting on with my life as best I can, making decisions which increase my wellness and health to the greatest extent possible, and being kind and patient with myself.

And I don’t think there’s anything wrong with that.

Good Day.

I’m having a good (or at least better) day today! And I am grateful. But good days present me with a bit of a dilemma.

Do I make the most of my good day by catching up on all the cleaning, errands, and socialising that have fallen by the wayside over my bad patch, thereby overdoing it and making it likely that I will crash and burn? Or do I deliberately pace myself, doing more than I would on a bad day but less than I want to, in the hopes that my good day can be stretched out into a good week?

Despite plans to the contrary, I frequently go with the former. I never know when the next good day will come, and it seems like too much of a risk to me to hope that I’ll have another one tomorrow. I do, however, realise that I would be more likely to have a second good day if I didn’t thrash myself so hard on the first one, and I realise as I’m doing it that it’s probably a silly way of doing things.

How do you use your good days?

Thought for the Day.

My autoimmune disease makes my hair fall out (it’s noticeably thin on the right side of my head, which to me looks weirder than it being thin on both sides, but I try to be grateful that I still have a good side).

My chronic pain has resulted in an increase in my facial hair (I have no idea why this happens but my doctor said it was a not-uncommon reaction, and not related to hormones, which was what I expected).

So there is too little hair where there should be hair, while simultaneously having too much hair where no hair should be.

My body has a jerk sense of humour.

My autoimmune disease makes my hair fall out (it’s noticeably thin on the right side of my head, which to me looks weirder than it being thin on both sides, but I try to be grateful that I still have a good side).

My chronic pain has resulted in an increase in my facial hair (I have no idea why this happens but my doctor said it was a not-uncommon reaction, and not related to hormones, which I expected).

So there is too little hair where there should be hair, while simultaneously having too much hair where no hair should be.

My body has a jerk sense of humour.