Tag Archives: control

A Chronic Pain Primer – Part One.

My radio silence for the last little while has been due to finishing my lit review on chronic pain management by health care professionals. It’s interesting stuff (to me, because I am a nerd), but it surprised me constantly how much there was in the literature that was taken for granted as the best way to do things, that I had never heard before. I’ve been a pain patient for nearly five years! Why hadn’t anybody told me this before?!

I wanted to share some of the big, important stuff in case anybody else didn’t know it too, and doesn’t have the luxury of journal access via their educational institutions.

The widely accepted definition of pain is from the International Association for the Study of Pain; “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”

There are a couple of important parts to this. Here’s the first one:

Pain does not mean something in your body is being or has been damaged. It feels like it, which sucks horribly. But pain in and of itself is not harmful. If you have new pain, get it checked out, thoroughly. But if you’ve been scanned and tested and your doctor had assured you there is nothing physically wrong, it’s okay to believe it. It’s okay to move your body without fear that further damage will occur.

This does not mean your pain is not real and valid. The pain might be an ongoing signal from an old injury that’s healed, or a disproportionate response to a minor injury, or occurring in the absence of an injury. The definition of pain means that pain is whatever the person feeling it says it is. End of story. So even if medical professionals can’t find a concrete physical cause for your pain, it does not mean that you are imagining it. More importantly, it does not mean it cannot be treated.

The bad news that nobody told me? It might not go away. It’s difficult to fix something if you don’t know what it is. Even where a specific physical cause for pain is identified, as with a damaged disc, and surgery is undergone to fix it, the pain may persist. Because your brain is blessed with the very cool and adaptive ability of neuroplasticity, it learns and changes. Once it gets used to feeling pain, it gets really efficient at feeling pain. It can amplify small amounts of pain or just keep re-sending the same ‘OUCH!’ messages once the problem that prompted them has stopped. For some people, this means that once chronic pain has developed and gotten really entrenched, it can be incredibly difficult to re-program and get things back to the way they used to be. So that’s the hard bit; there may not be a cure for your pain.

Stay with me though, because there’s good news. When the cause of pain cannot be cured, treatment can allow the reduction of pain, the reduction of suffering (that’s the emotional crappiness and distress that comes with the physical sensation), functional restoration (getting your body to be able to manage doing things you used to be able to do), and improved quality of life. And what it boils down to is that pain which has the disability and distress stripped away from it is manageable, even if you don’t ever know where it came from.

It’s not peachy-wonderful, because it’s pain, and it will always be a noxious stimulus. But if you can move and sit and exercise and go dancing and pick up your kids for a cuddle, and if pain is irritating but doesn’t cause you to become depressed and anxious and feel like the world is ending, and you can work and drive and have sex and pay your bills and get by without medication if that’s important to you, then you can have your life.

So, that’s the key. Finding ways to work with it. Getting to do what is important to you and be happy and fulfilled and well in spite of pain. I’m not saying it is easy, I’m saying it is worth it. Because living with pain can suck, but having pain and not living your life is the cause of way more suffering and heartache.

That’s easier said than done, you’re thinking. Pain hurts. It is by definition unpleasant. Well, yes. But a lot of things are unpleasant, and people manage to live good lives in spite of them. So the important thing is to get treatment that enables you to reduce the unpleasantness of the pain as much as possible. And I’ll talk about that in Part Two.

Let me know – are you sitting there saying, well, duh, or do you disagree? Or do you tentatively agree but haven’t been able to make it work for you yet? I agree with this whole-heartedly, and living well despite pain is my over-arching goal, but that does not mean I am a happy ray of sunshine every day, so I’m still somewhere in the middle too 🙂

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Thought for the Day.

One of my favourite things to do used to be going out to this awesome little Pad on Thursday nights with my friends and dancing the night away. I haven’t been in months now – I blamed mostly giving up drinking, poverty, and being busy. Actually, I’m pretty sure I haven’t been since my back surgery last July… hmm.

But it’s a public holiday tomorrow, and my friends are going, and I agreed happily. And I’ve missed it, and I’m glad to be going. But at the same time, as the hours have passed today, I’ve been getting more and more anxious and felt panic tightening my chest.

What if I look awful, because I’m eczema-blotchy and purple-legged and my bald spot is showing? What if I can’t do it without my old, eight-times-what-I-currently-take levels of opiates? What if I’m hobbling and people look at me weird, or I look strange dancing because I’m in pain, or I’m just awkward and a fun-spoiler because it hurts?

So, it appears I may have had some serious fear-avoidance happening without realising it. But tonight I’m determined. What if the worst happens? Well, people will think I’m odd (won’t be the first time), my friends will think I seem grumpy but forgive me because they love me, and I’ll come home early but hopefully still feeling triumphant I gave it a go.

So send good, strong-backed vibes my way and wish me luck! I’m feeling the fear and doing it anyway.

In, On, Move: A Wellness Series.

At the start of the year, I made some resolutions, which I’ve managed to maintain reasonably successfully. The core aims I had were to care for my body and try and minimise the strain on it by being mindful of what I put in my body to nourish it, and what I put on my body in terms of personal care. I also wanted to focus on moving my body when I am able in a way that celebrates the function and strengths my body has, rather than beating myself up because I can’t do things ‘right’, or as punishment for unhealthy eating, or purely to burn calories for aesthetic reasons.

I realise these things probably sound like no-brainers, but it took me a long time to start being kind to my body post-chronic pain and illness. I fought my limitations, berated my body for its weakness, and restricted food and pushed it to exercise in ways that made me unhappy because I was trying to mould it into something it wasn’t. My mental shift has been gradual, and I still have lapses, but I feel like I’m in a much better place than I’ve ever been before in appreciating my body and prioritising my health and wellbeing.

Wellbeing is a huge part of my approach to living with chronic pain and illness. The goal of a lot of current chronic pain management programs, when they can’t cure the source of pain, is to maximise wellbeing, or physical and mental health, even in the presence of illness and pain. My goal is to be as well as I can be given my circumstances, and the resolutions were my way of prioritising that.

Because I’m nosy, and I like hearing about what others do in their pursuit of health, and also because I use this blog to keep myself accountable for continuing to try and implement positive change, I wanted to start sharing some things I’m trying and enjoying in terms of food (in); beauty, personal care, and cleaning products (on); and ways of moving my body (move, obviously).

As with absolutely everything on this blog (and elsewhere on the internet!) these are suggestions. I like recommending what I’ve found helpful, but people vary! You may not have the same issues I have, and you may not approach things the same way I do, and that’s fine. If, however, you see something you think would be helpful for you, please, please, make sure with your health providers that it is safe for you to do, with your particular set of circumstances. Especially in the case of movement, one size does not fit all where sick people are concerned!

In: Having been in a particularly chocolate-craving frame of mind lately, I decided to give making my own chocolate a go. I don’t tolerate dairy, and soy also leaves my digestive system disgruntled, so since cutting those out of my diet store-bought chocolate is pretty hard to come by. I’ve had some luck with organic, raw varieties like Pana and Loving Earth, but they get expensive! I tried this recipe, which was quick, easy, and delicious. I used maple syrup as the sweetener and added in sultanas and crushed cashews to make a Cadbury Fruit and Nut imitation (apparently I am the only person alive who enjoys it!), but the potential varieties are endless. Tastes amazing, and no tummy dramas = bliss.

On: My skin has been struggling this week. My dermatitis seems to be getting worse and worse, and I’ve tried a variety of creams and serums which seemed promising for a day or two, and then exacerbated the problem. I also had a couple of giant, sore pimples, courtesy of having a couple of higher-dose oxycodone days.

My go-to emergency mask is just two parts organic raw honey to one part baking soda. I add in some oats if I’m particularly itchy. I just put the ingredients in a bowl, mix them with a finger, and then goop it on to a dry face (and in this case, chest and arms). Be warned, this can be messy, so do it over the sink. Leave it on for 10 – 30 mins (I like to have a bath in this interim so I’m not dripping honey everywhere), them add some warm water to your hands, work it in to exfoliate with the baking soda a little, and wipe off with a warm washcloth. Use a cotton ball dipped in half-and-half apple cider vinegar and distilled water as a toner afterward if you feel like going full hippie (by the time I followed up with my usualy moisturiser I no longer smelled like a bizarre salad, in case you were wondering).

I have crazily sensitive skin and this doesn’t bother me, but if you’re concerned, either patch test or use less baking soda to begin with. The honey is antimicrobial and helps with infections. I find this leaves my skin smooth, settles the flakes for a day or so (I tend to use it the day before I have somewhere nice to be), and takes the redness and swelling out of spots. Plus, I get a childlike glee out of smearing food all over my face. Just me?

Move: I have been all about yoga this year. I’m noticing distinct differences in my muscle strength with brief daily practice that fill me with glee, and most importantly, they can be done in the privacy of my lounge room, which means I can fearlessly wear a sports bra and shorts, and also do my routine directly in front of an air con vent. Key considerations to getting through a Western Australian summer! (Useless fact: the highest temp in my state this summer was 49 degrees Celcius, which is 120 degrees Farenheit. I can’t even.)

I’ve been mixing up back, neck, and shoulder routines from Ekhart Yoga on Youtube, with this and this being current favourites. She often outlines accommodations if you can’t manage a pose, but generally speaking hatha, yin, and restorative yoga are helpful for people with pain or injury. Several of these poses and stretches have been recommended for me by my physiotherapist, so they suit my issues, but be careful to find something that suits yours if you’re interested.

I’d love to hear what you do to keep yourself well and get some new ideas (like I said, nosy).

The Patient.

While being fully aware of the beneficial effect of a positive and optimistic mindset on pain management, I am also a firm believer in the therapeutic value of validating experience. So in the interests of being honest and accepting about what I am feeling: I feel awful.

My 16-hour excursion just over a week ago (public transport, a lecture, errands, a meeting, a car trip, more public transport, and several hours at a crowded music festival alternating between standing and sitting on the ground) precipitated a massive system shutdown. Which I expected, but I didn’t think it would be this severe. I realise I probably deserve it for going so overboard, and I think it was worth it, and I realise when you can’t cure chronic pain you have to find ways to live your life anyway. But ugh. So awful.

I managed to avoid drinking at the festival, but ingested a lot of refined sugar and somehow inadvertently some gluten (don’t ask me how I know!), which potentially have made this worse. I also got sunburned at uni yesterday, so I’m headachey and extra-fatigued on top of already being bone-weary, nauseous, and brain-foggy.

I don’t have the energy to prepare meals, or to make myself eat them, so I’m eating one meal a day. I don’t have the energy for yoga so my stress and muscle tension are worse, and the gains I had been making in flexibility are diminishing. I’m behind in my reading because my brain won’t work and I’m exhausted, so by the time I get into bed I’m too stressed to sleep. Then I end up double-dosing my sleeping medication, waking up med-hungover and late, and wasting half the day gearing up enough to do basic tasks (don’t ask if I’ve showered today). I’ve had to go back up to my prescribed painkiller dose, which I had been reducing successfully, which makes me stupid while it’s working and exhausted once it’s over.

The cycle is frustrating and predictable, but feels unavoidable. I feel stuck.

There are things that are incredibly difficult for me and yet helpful, like being kind to myself and asking for help when I need it. Sometimes I get the vague suspicion that these things are what chronic pain is in my life to teach me. The lessons are hard. But in the interests of doing them, I’m asking.

What do you do at times like these, when you are at a loss and nothing is helping? How do you pick yourself up again?

I’ll start, and I will implement these tonight (or may the gods of internet accountability smite me!), even if it means getting further behind on chores and uni work, because if I am not well, none of those things get done anyway.

I will eat a healthy dinner even if I am tired, because my body needs fuel to function.

I will have a warm bath with Epsom salts, while watching an episode of something cheerful and trashy.

I will do 20 minutes of yoga (I like this one at the moment) and I won’t skip through the meditations because I’m too busy.

I will listen to this and remember to be patient and wait it out.

I will get into bed and have a cup of passionflower tea.

I will turn off the light by 10:30.

I will breathe deeply.

I will trust that this too shall pass.

Your turn. I would love to hear your suggestions.

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 🙂

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?