Tag Archives: spinal injury

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!

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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?

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 🙂

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.

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).

Silver Linings and Small Victories.

Late again! Bad self.

Each week, I try to take a moment to be grateful for the good in my life, despite (and sometimes because of) illness and pain. This week:

I am grateful for outings; absence has made the heart grow fonder and now on a night out I try to treaure every moment.

I am grateful for my body’s capacity to surprise me, occasionally, with ninja cat reflexes that I am not expecting, thus making me laugh.

I am grateful for my body’s healing, and my first time wearing a corset since back surgery (not recommended in the first several months, or for frequent use since they can weaken your core muscles, but they look amazing!).

I am grateful for the incredible talent in my sleepy little town; we saw a cabaret of music, burlesque, acrobatics, contortion, magic, and dance last night and it was enchanting, and I never use that word.

I am grateful for my partner’s patience when I am in meltdown mode, and his reassurance that it will turn out okay, and the fact that it always, eventually, does.

I am grateful for access to a range of healthy, delicious food that doesn’t make me sick and miserable.

I am grateful for novels to allow my brain a sigh of relief in the midst of dense academic writing.

I am grateful for long, hot baths in Epsom salts.

What are you grateful for?