The Hard Stuff.

Rusty Hoe over at Living with Bob posted this today, about the benefits of being honest regarding the hard parts of chronic illness. While wallowing isn’t terribly helpful, reaching out for help in the inevitable dark places that come with chronic health conditions is a valuable way of establishing social support, which can mitigate the experience of pain and distress associated with illness.

I know this very well (very! It’s the underlying topic of my thesis!) but still fail frequently to walk the walk. I’ve been avoiding this little space because of a horrible flare, which has left me intermittently screaming aloud (hadn’t done that in a while and didn’t miss it), crying on public transport, and mentally way, way down in the dumps. I thought that because I was feeling bad, I had nothing worth sharing and should keep my thoughts to myself. The Living with Bob post reminded me today that that isn’t necessarily so.

I can be honest and say I’m struggling, and that it’s okay. I can hope that if you’re struggling too, you can take some comfort knowing you’re not alone, and that you don’t have to always pretend everything is perfect for fear of being a downer. I can say that acknowledgement of your struggle, from others and from yourself, is incredibly important to wellbeing in chronic pain and illness. I can say that I’m sorry that we live in a society where asking for help is often construed as weakness. I can say that just by virtue of continuing to put one foot in front of the other and endure, you are showing incredible fortitude, bravery, and strength, whether you can see it or not.

I can remember that even when I do everything right in terms of self care and treatment, sometimes I will have flares anyway, and that they don’t mean I’ve screwed up or let anyone down. I can remind myself that even where I have slipped up and not taken care of myself as well as I could have, that doesn’t mean that I’ve brought this on myself and deserve to be punished.

I can remember that I’ve gotten through every rough patch so far, and that I’ll get through this one too. And you will too, whenever your next flare arrives. We just have to wait it out.

Brain Fog & the Blahs.

So the post title might sound like an unappealing band, but that’s the state of things at the moment, I’m afraid. Nothing big and horrible, just a whole bunch of small irritations and disappointments compounding to make me feel generally – ugh.

I applied for a job, which was huge for me; I’ve been talking myself out of it for so long that summoning the courage to actually apply took a lot. I sorted referees (terrifying! I hate asking people to vouch for me), bought interview-appropriate clothes (I’ve lost 16kg and all my tailored stuff now looks ridiculous) and updated my resume (a.k.a. engaged in a brief exercise of ‘let’s look at all the ways in which I have failed’). I didn’t hear back, so I’ve been doom-and-glooming about that, even though I rationally know that at least now I’m prepared for the next thing that comes along. I also was recommended for a position a friend is vacating, and was assured that I wouldn’t need to interview or anything, I’d just get it, and haven’t heard back about that either. I feel like, hey, you don’t even know how crap I am yet! Och well.

I’ve just switched to the slow-release of oxycodone, after being on fast-release for a couple of years. The latter worked well, but makes me hyperactive, so at night-time I’d have to choose between sleeping in the next three hours or pain relief. It also wore off too quickly to get by with one dose during uni days when out for several hours at a time, and the facial-but-especially-my-nose itching which has been a constant side-effect for me had worsened to the point of being unbearable lately.

So, I asked for slow-release, and on all those counts it is better – but the pain relief is less effective. And pain relief is kind of the most important thing when it comes to pain medication, right? I’ve been waking through the night feeling like the muscles in my back around my facet joint are burning (new and exciting pain symptoms, yay!), and my gait is worse because I can’t force my leg through the swing as I take a step in the way I need to. And because I am eternally terrified of seeming like a junkie, I will have to put up with it for a month until this script runs out.

Worse, I’m going on a date with my partner tonight, and have been looking forward to it, and now sitting through dinner and a movie is looming, horrible and insurmountable. I am determined not to (for the umpteenth time) get halfway through dinner and have to go home because my back hurts, but I also get really surly and curt when I have to work through pain. Not the best setting for an enjoyable romantic evening.

And last but most importantly for me, oh god the brain fog. It’s been particularly malicious for the past week or so. I’m trying to finalise a research proposal and rewrite then incorporate some theoretical content into a literature review, both of which are fairly highly demanding cognitive tasks (at least for me). My usual coping method during particularly bad bouts is to put the hard stuff on hold and do mindless busywork tasks, but my deadlines are looming and it needs to get done. It’s like mentally walking through very deep mud trying to have ordinary conversations (I felt like the world’s biggest moron in my last supervisor meeting), let alone produce fluent academic writing. It’s massively frustrating to be sitting there, knowing I know the perfect word to describe a complex concept and yet not for the life of me being able to retrieve it.

So, after all that whining, in an attempt to be constructive; help! How do you manage brain fog when you have to work through it? Any strategies that might help? I’m open to anything!

Link Round-Up.

It’s been a while since I did one of these, but I just found a few links I had saved, so here’s some reading for your Sunday afternoon.

This report on study findings suggesting a potential link between salt and autoimmune disease makes me sad, because I love salt, and I do not love my autoimmune disease. My blood pressure is low and I tend to use salt to ward of extreme dizziness and faint spells. Might be time to find another strategy? I’m curious to see what further research will tell us in terms of dysautonomia and salt though; it seems like the benefits outweigh the costs in the short term at least.

An article discussing a study on the experiences of individuals with chronic pain engaging in online support groups and forums. I thought this highlighted nicely what one can gain from online support, and interestingly, a lot of what patients appreciated from online comrades echoes what is felt to be important (and often lacking) in chronic pain patients’ interactions with their health care providers.

It can be hard to ask for help when we’re incapacitated after surgery or during a particularly bad flare. Even once I’ve articulated that I need help, sometimes I can’t work out what specifically would be helpful, so nothing gets done even where people are willing to assist me. This article on how to help someone who is recovering from medical trauma has some good concrete strategies, and I think would be good to send or summarise to family members or friends asking, “What can I do?”

On the topic of helping, this article gives some advice on how to stop feeling guilty about taking time and energy to look after ourselves. A learned a long time ago, in the midst of some pre-chronic pain depression, how important self-care is for me, and it’s been a valuable lesson since becoming ill. Sometimes I do feel guilty and selfish for taking so much time and energy to make sure I’m healthy and supported. However, when I let these things slip, not only do I suffer, but I am miserable to be around, and have no resources to support anyone else. Affix your own oxygen mask before assisting others!

I’ve followed a range of blogs discussing body love and acceptance and concepts of Health at Every Size. I whole-heartedly endorse them and their exhortations to love your body for what it can do, not what it looks like. At least, I thought that worked for other people. I always struggled, though, with a chronic illness perspective; “How can I love my body for what it does when it doesn’t work properly or do the things I want it to?” I’m getting better and less harsh on myself in this regard, but sometimes it is still a struggle, so I loved this great perspective on loving your body despite malfunctions and betrayals in the form of pain an illness.

I hope you’re having a relaxing weekend 🙂

10 Signs You Might Be a Damn Hippy.

1. You can name 10 uses for coconut oil without Googling or checking Pinterest.
2. Your idea of ‘just like a chocolate milkshake only crunchy’ involved almond milk, bananas, nut butter, and cacao nibs.
3. You spend an inordinate amount of time picking chia seeds out of your teeth.
4. You couldn’t clean your house without baking soda and vinegar.
5. You’ve traded in Chanel for home-crafted scents from Etsy. You persist, despite sometimes smelling suspiciously like an antique store run by an over-enthusiastic herbalist.
6. You put a lot of food on your face. And underarms (coconut oil, baking powder and arrowroot starch only… so far).
7. You spend as much time reading cosmetic labels as food labels, and in both cases, that is a lot of time.
8. You’ve had an angry outburst in the aisles of a supermarket upon discovering the questionable ingredients that are in processed foods you’ve always eaten.
9. You have the Environmental Working Group’s Skin Deep database in your favourites.
10. You have not only changed your own diet to one considered unconventional by most of your peers, you’ve converted your family … and your pets.

I’m moving toward crunchy and proud these days.

And my ten uses for coconut oil, besides the aforementioned deodorant: cooking oil, home-made chocolate base, smoothie thickener, hair mask, skin moisturiser, shaving cream, eczema treatment, make-up remover, oil-pulling, and a spoonful with my multivitamin to encourage absorption of fat-soluble vitamins (A, D, E, & K).

Any others? I need MOAR COCONUT OIL (clearly) 😀

A Chronic Pain Primer – Part Two.

So you’ve got chronic pain. Now what? How do you go about getting your life back?

Treatment is possible. Its quality varies widely, unfortunately, but there are a lot of things that have been shown to be helpful, and a lot of other things which generally aren’t. Systematic reviews and meta-analyses of randomised controlled trials are generally the best place to start looking for evidence-based treatment, and there are a few available now that give us an idea of what will be helpful for most people.

Keep in mind though that, as always, research identifies what is helpful for the majority of people or the average person. There are outliers (people who don’t respond to treatments in the typical way) and you might be one of them. Individual differences are important. Use research recommendations regarding effectiveness as your starting point, to help you identify what will likely be the best investment of your resources. But, if you’ve exhausted all the best options and want to try second-best, or if you’re already doing something that doesn’t have great research support but is helpful for you, and is not causing you harm, which includes undue financial burden, stick with it. Do what works for you – but always check with your treating physician/s to make sure a specific treatment option is appropriate for you.

The best recommended course for pain management once it becomes chronic is multidisciplinary, intensive treatment involving a biopsychosocial approach and functional restoration. What does that all mean? A biopsychosocial approach to pain management essentially just requires that any treatment addresses physical, psychological, and social aspects of pain, because these are involved in every pain experience. All chronic pain management should incorporate this perspective (it’s been supported for forty years now), but not all of it does.

Physical aspects may be issues with tissue damage, or central sensitisation (your body’s alarm system continues going off in the absence of or disproportionately to damage).

Psychological aspects do not mean you are crazy if you have chronic pain. Some medical professionals take this stance, and they are ill-informed (and not doing their job properly). Everything we experience through any of our senses is interpreted by our brain, and thus influenced by our beliefs, thoughts, expectations, and previous experiences. Chronic pain is no different.

Social aspects can exacerbate or maintain pain. Things like loss of employment lead to financial difficulties, which limit treatment options and tend to be associated with less healthy lifestyle and dietary choices, and stress, which increases your body’s pain response. Social support and relationships are hugely important, as supportive relationships can protect against and reduce pain and distress. Interactions with health professionals also count as social aspects of pain, and I’m sure a lot of my fellow pain patients can agree that the health system can be a pain in itself!

Just as you need a doctor (and maybe a physiotherapist or exercise physiologist) to address physiological issues, you need someone in your team to help with the psychological and social side of pain to effectively manage it. Coping with chronic pain is hard! Help navigating it can make your life easier, even when the pain can’t be cured. Your GP (and maybe your pain specialist) won’t necessarily have the time, expertise, or inclination to help you with psychological or social issues. This is why multidisciplinary care is important – it’s recommended that individuals with chronic pain see at least a GP, psychologist, and physiotherapist, and if you have access to them, social workers and occupational therapists can be hugely helpful too.

Multidisciplinary pain clinics or centres tend to be the best way to get integrated care from several practitioners, but they vary in geographic and financial availability, and they often have long waiting lists. If you are seeing individual practitioners, it will likely be up to you to make sure they’re talking to each other. Keeping notes at appointments and asking that follow-up letters be given to you or sent to the other people managing your care can help keep everyone on the same page.

Intensive treatment means what you would expect – this is not an overnight fix. A lot of programs range from 6 – 10 weeks or so, so expect to invest a couple of months. As a caveat, not all health professionals are created equal, and just because you have a pain management team doesn’t mean they will be perfect for you. Health professionals are flawed human beings! Advocate for yourself if something goes wrong and find a new professional if necessary and possible.

Functional restoration means that your chronic pain management program should be aiming to help you get back function even where pain is still present. Bed rest and eternal avoidance of painful activities are not a treatment for chronic pain. They will lead to deterioration and further loss of function over time. If you have identified physical damage or abnormalities and your doctor has recommended avoiding a specific activity then listen, obviously. Since my back surgery, I am forbidden from skydiving, bungee jumping, contact sports, and the elliptical machine at the gym – all things I can live with 🙂 But around those restrictions, I am as active as possible, and have ridden horses, gone caving, and at least attempted everything else I used to or need to do. I take more frequent breaks while sitting, but I still sit down.

A physiotherapist is usually in charge of functional restoration. As a side note, I found the physio who worked with my surgeon’s patients post-surgery was far, far more knowledgeable than the other two I had seen previously. She was the first one to come out and say, “You will not re-injure yourself doing normal daily activities. You can’t stay in bed forever waiting for this to go away. You need to get strong and get on with your life.” Her approach was different and frankly kind of shocking to me at that point, but having reviewed so much research literature since seeing her, I now realise she was completely on the ball with the best-supported approach.

I’ll be compiling a Part Three, which will go over the evidence for some specific (conventional and alternative) treatments, beyond psychological and physiotherapy-with-functional-restoration. If there’s anything specific you’d like me to address, let me know! Let me use my university journal access for good 🙂 Do you have any questions about what I’ve covered? Do you disagree with this conceptualisation of and approach to chronic pain management?

Hot and Cold.

I’m more or less back on track after my hiccup a couple of weeks ago, and typically enough, my body is engaging in its time-honoured tradition of stress reduction = get sick. I’m feeling flu-y and fatigued and my vision, which gets messed around with periodically by my occipital neuralgia, has been dodgy – I’m finding it hard to focus on a white computer screen and the letters are all blurry around the edges. Which is, of course, great for getting a research proposal completed in a timely manner.

Feeling vaguely feverish last night and this morning, I took my temperature and then realised I didn’t know what constituted a fever so took to Googling. Apparently, while 37 C is the average, anything from 36.4 to 37.6 is fine. Above around 39.5 is cause for concern, and 35 and below can indicate hypothermia.

So, maybe everyone else already knew this, but I’ve forgotten everything I ever learned in human biology in high school. And because I’ve been monitoring my body temperature daily for the last couple of months, I now realise – my body temperature is rarely if ever in the ‘normal’ range. It’s only been 36.4 and above for two days out of the last month, and is typically between 35.5 and 36.5. I’ve had a couple of days below 35.5 although never as low as 35.0. My highest body temperature in the two months has been 36.9, last night, and it’s never reached 37.

I already knew my body was weird, but this seems bizarre. I knew I subjectively felt like my body couldn’t regulate temperature well, and my extremities are cold and sweaty for most of the cooler weather. Mostly I don’t handle heat though – I suppose if a hot day in my hometown is often five degrees warmer than my maximum body temperature it could explain why it feels ever-so-slightly like dying.

Does anyone else out there have a lower-than-average body temperature? Do you know why? It seems like it could be a dysautonomia thing – my resting blood pressure is often the low end of normal, maybe they’re tied in? And how the hell do I work out if I have a fever?!

Update.

I’ve been feeling bad for neglecting this little space lately, so I wanted to drop in and let you know I’m still alive and I’ll hopefully be back on track, if less regularly, soonish. Something happened recently which has been a pretty harsh blow and de-railed a lot of my plans, so for the moment all I can really manage is to keep chipping away at my dissertation and trying to wrap my head around some changes. Fun times ahead! Thanks for your patience in the mean time.

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 🙂

Silver Linings and Small Victories.

This week:

I am grateful to be feeling better mentally. Less brain fog, and less down in the dumps.

I am grateful for plentiful and freely given cuddles and kisses and love and affection.

I am grateful for choice.

I am grateful for advocacy.

I an grateful for passion to right wrongs and the potential for change.

I am grateful for knowledge and insight and lived experience and expertise.

I am grateful for ease and grace.

I am grateful for radiant, glorious sunsets and the beautiful, healing, natural surrounds in which I find myself.

I am grateful for treats and spoiling myself; it happens rarely so I appreciate it all the more when it does!

I am grateful for progress. I have a couple of jobs I want to apply for, and have been stressing out massively over a lack of references (given my illness-related employment gap and that most of my study has been external) as well as anxiety over explaining my health issues in terms of my employment history and physical limitations. Then it hit me; I’m feeling well and able-bodied enough to be seriously considering working a couple of days a week. That’s huge, and a cause for celebration, not stress. Likely nothing will come of the applications, but I feel like submitting them will be a milestone nonetheless.

What are you feeling grateful for this week?

In, On, Move: A Wellness Series.

Move: I’ve been having motivation issues lately. I know yoga makes me feel better when I do it, but I still have trouble talking myself into doing it every day. I’m a big fan of joyful movement, and the idea that, regardless of health, ability, size, or shape, pretty much everyone can find a way of moving their body that feels joyful to them. I made a decision to give myself a break from yoga and go with what feels good for a little while.

For me, what feels good is dancing. I love nothing more than getting dressed up to go bump and grind with friends in a dim goth or alternative club. Mostly, my fatigue and pain get in the way of such a massive undertaking these days. Since I like making things easy for myself, I figured incorporating dance into my day was a good way to get myself moving without it feeling boring and difficult.

I’ve noticed that there are a few songs on my Spotify list which make me inevitably start moving when I hear them. Whether I’m dancing as I do the dishes or make dinner in the kitchen, doing an improvised bellydancing routine in the bathroom, or just stretching and wiggling to the music in bed on a terrible pain day, I have to move to them.

I’ve started setting a mobile alarm with Rakim by Dead Can Dance on it once or twice a day. That way, I hear it and start dancing. I often replay it a few times because I start enjoying myself. And because it’s in the privacy of my own home, I can let loose and be my uncoordinated and ridiculous self and it doesn’t matter. I’m also a big fan of the album Beats of Ice and Fire by The Boomjacks.

Music on its own can be therapeutic anyway, and singing along helps encourage deep breathing and thus relaxation. So, in the spirit of sharing and increasing my repertoire, give me one song that makes you just have to move. I’d love a complete playlist to work through over the week.