See-Sawing.

Growing up, I did ballroom dancing for several years. As an adult I’ve always wanted to get back into the Latin side of it (give me a Paso Doble over a foxtrot any day). My partner was wanting to give it a go too, so we bought an online voucher for eight weeks of lessons last year in June, around the time of my back surgery. We knew we had plenty of time to use them after a couple of months for my recovery.

We’ve talked about it intermittently since then, but never made concrete plans, since my recovery didn’t go as expected and I’ve had several facet joint and nerve flares since the surgery rather than the smooth sailing I was expecting. I thought we had until this June, he thought March, so we checked the voucher recently to confirm. Turns out it expired at the start of January and we had missed our chance. I was so upset.

It’s not just the waste of money (it wasn’t that expensive), although I did feel awful since he had paid for it and it was my fault we hadn’t used it. I was disappointed because it was something we had both been looking forward to (we’ll probably still get around it to eventually). But mostly, I was upset because it drove home the fact that, in the last seven months, I haven’t had eight consecutive weeks in which I was pain-free enough to go dancing, despite having spent roughly $7000 out-of-pocket on painful back surgery that was essentially guaranteed to fix me.

I had vastly different expectations for how the last six months were going to go, and it didn’t pan out, and I am disappointed and grieving my loss. That’s life, particularly with chronic illness and pain. On the plus side, I did a shoulder stand for about 2 seconds yesterday, which at any earlier point in the last five years would have been impossible, and I was filled with a massive sense of excitement, pride and achievement. Here’s to the ups and downs!

Chronic Coupledom.

http://www.xojane.co.uk/sex/on-dating-with-a-disability

As I’m both in a long-term relationship, and someone with a predominantly invisible illness/disability, this article raised some interesting issues I hadn’t previously considered regarding being approached by men as a woman with a visible disability. It got me thinking about my own illness-specific issues around dating and romantic relationships, and I wanted to share my own experience.

I’ve only begun one new relationship (my current partner) since becoming sick, and it wasn’t an issue then since we had been friends for a year before we got together (he knew of the existence of my spinal issues if not their severity), but my main concern in dating would be when to disclose an invisible illness to a new partner.

I certainly had ‘the talk’ with him early on – as in, you don’t know how bad this gets and if you want to back out now I won’t think less of you – and still have periodic breakdowns where, in my weaker moments, I try to get him to leave me because I worry about him being stuck as my carer for the rest of my life. I haven’t managed to discourage him so far, but I still get incredibly anxious that he doesn’t know what he’s in for, down the line; as my body deteriorates further, as money is always tight because I can’t work full-time and my medical costs are high, as having children is complicated (or maybe impossible), as I snap at him when I am exhausted and in pain and out of patience, as I get sicker and need more humiliating assistance that you don’t want from a man who sees you as sexy and desirable. As I die a few decades before him and he is left alone. As the stress of being a partner and a carer makes our relationship strained and makes him resent me for needing help, and me resent him for seeing my weakness.

Love is always terrifying. There is a vulnerability inherent in giving someone the capacity to destroy you. It seems so much more complicated now, though, with the added stresses and strains of illness, particularly at a young age where I feel like things should be easy, and we should be getting our family established and secure. Our coupled-up friends have their own stressors, obviously, but they don’t seem to have that looming spectre of future complications shadowing their relationships. Maybe it’s just in sharper focus for us, because we know the form it is likely to take, while for others, the shadow – the cancer or infidelity or infertility or death of a family member or job loss or a thousand other stressors and traumas – will be a surprise.

Maybe because we know it will be difficult, because we are prepared and braced for the struggle, we will deal with the strain better. Since we know our future together will be difficult, we bond all the tighter and can put conscious work into strengthening our resilience and our relationship, perhaps in a way that other couples our age don’t consider until they are in the middle of a challenge.

I hope so. I hope we get through it, that we’re one of the couples who manages to survive chronic illness and be made stronger by it. Whatever happens, I am so glad for this time and this support, and the patience, love, and strength of a man who can and will carry me to the bathroom or the ambulance if I need him to, and never make me feel less for having to ask 🙂

Link Round-Up.

http://www.bodyinmind.org/does-every-pain-have-its-own-psychology/

Some useful definitions of types of pain and the parts that make up the pain experience, as well as evidence that the psychosocial aspects of pain are similar between patients, regardless of the aetiology of their pain. This supports the notion that chronic pain patients can bond over their pain and be treated to some extent as a homogeneous group, although the pain can result from many different issues. I already knew this anecdotally; I follow health bloggers with fibromyalgia and myositis, cystic fibrosis and other respiratory illnesses, Crohn’s disease, Sjogren’s syndrome, dysautonomia, Marfan syndrome, and assorted other health issues, yet aspects of each of their experiences resonate with me.

http://www.bodyinmind.org/cognition-and-pain/

Some research evidence that the anxiety and attention / concentration issues often experienced by individuals with chronic pain are caused by the pain (as opposed to the idea that people who are anxious and/or have poor attention are more likely to develop pain problems). This gives me hope that if I can get my pain under control I will not always feel quite this brain-dead!

http://theconversation.edu.au/good-news-for-chronic-nerve-pain-sufferers-but-it-could-have-been-better-10818

Lyrica (pregabalin, commonly used to treat neuropathic pain) will be covered by the Australian Pharmaceutical Benefits Scheme from March 1^st this year, which means it will cost just under $6 compared to the current $80-ish, more than half of which is not covered by private health insurance. I cheered.

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

An hour-long yin yoga routine for the spine. This is my favourite routine from my favourite teacher; I find her accent soothing and her attitude of “whatever you can do is perfect” makes me feel better that, forget my toes, sometimes I struggle to touch my knees!

http://www.xojane.com/relationships/im-pretty-sure-my-loved-ones-are-going-to-murder-me-if-i-dont-start-getting-more-sleep

Ahh, insomnia. Along with pain and fatigue, poor sleep seems to be a unifying symptom among hundreds of different ailments, and certainly one I battle with (and lose) constantly. This is a funny account of life when sleep-deprived. I think I need a ‘sleep troll’ shirt to wear for those days to warn my family.

http://lethargicsmiles.wordpress.com/2013/01/06/life-is-kind-of-like-an-arcade/

This is a great expansion of / alternative to the Spoon Theory – a way to explain to others how living with chronic illness limits your resources. My friend and I refer to our ‘credits’ rather than spoons.

http://25pillsaday.wordpress.com/2013/01/16/an-animated-version-of-my-sick-week/

This made me laugh so hard, and I wanted to share the love for anyone who hasn’t already seen it. Sometimes, when you’re sick and feeling awful, cute and funny animals gifs are the best medicine.

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/

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.

She’s So Unreliable.

I’m unreliable. I know it. I hate this about myself, but it’s something I often don’t have control over.

I used to be reliable. Punctual, trustworthy; if I said I’d be somewhere I got there, and on time. I’ve always been a hyper-organised Virgo, and that hasn’t changed; these days I write everything (everything!) down in a pink Filofax planner, to be later transferred to my laptop and wall calendars, because a combination of my painkillers and my pain have converted my brain into something strongly resembling a sieve. So I know where I’m supposed to be, but more often than not I can’t get there.

My pain and mobility vary wildly, even in the course of one day. I have good patches and bad patches. When I hit ‘attending’ on a Facebook event that’s a few days (or weeks) into the future, I have no way of anticipating how I will be when it arrives. So often, I flake out. I say ‘maybe’ a lot, and then never turn up. One of my friends, who also deals with chronic pain and illness, understands this completely. The rest get mildly to very annoyed with me after a while, because it seems to them like I can never commit, like I don’t care enough to try. Most of my friends don’t see me when I’m bad (I go to ground like a wounded animal and embrace my inner hermit) so they have trouble understanding.

Being unreliable is one of my biggest concerns about being able to work in my profession once I finish studying. I can’t imagine many employers would be sympathetic to the fact that, on any given day, I might not be able to turn up. Or if I do, I might not be able to do anything. Some of my uni lecturers seem to find it irritating enough, and they’re not paying me.

Of all the identity shifts that have occurred for me since being sick, this is one of the most painful. I tend to overshare about my condition so people don’t just assume I’m flaky because I’m lazy and I don’t care. I do care, so much; my body just isn’t good at showing it.