Tag Archives: challenges

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!

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?

Silver Linings and Small Victories.

Another hard week, but heading in a better direction. So this week:

I am grateful for the discovery of new movies and songs that move me (sometimes literally, to dancing in my kitchen).

I am grateful for pain flares, because for all my catastrophising they are not, actually, the end of the world. I am grateful that I can and do manage them, and I am grateful that they pass.

I am grateful for the passing of the storm.

I am grateful for recovery after setbacks.

I am grateful for burgeoning wisdom.

I am grateful for improved coping skills.

I am grateful for chances to see how far I’ve come.

I am grateful for most of my lit review being written (although if I was suddenly gifted with the ability to write more succinctly, I would be grateful for that too!).

I am grateful for first cuddles with my nephew and the fact that he enjoyed them! I’m always terrified babies will bawl as soon as I hold them. I am also grateful for the smell of a baby’s head and teeny fingernails and podgy elbows and hope.

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.

Be Cool.

It’s cooling down! I’m so excited! I got to wear a scarf yesterday, and fall asleep to the sound of rain last night, and I can hear the wind howling around the house this morning. We’re nearly a month into autumn, but for the last couple of years summery weather has stretched well into late April / early May.

I’ve never liked heat. Even before I got sick, I come from a family of sweaty people. I’m pale, pink-toned rather than yellow, and get scarlet-faced very easily, which I’ve always found embarassing, so I blush and get even pinker. I was born in a town on a coast below a desert, so most of the time it was scorching hot and dry as a bone; I don’t enjoy that type of weather but I can cope with it. Here, however, it is humid and sticky, and in summer you feel damp within seconds of getting out of the shower.

Since being sick, I can’t stand the heat, at all. I get nauseated, dizzy and light-headed, and surly. It makes my pain worse, and the things that help my pain (heat pad, exercise, not lying in bed all day, hot baths) horrible and torturous.  It makes my brain fog worse and I get Raynaud’s phenomenon more frequently, which tells me my blood isn’t circulating properly (and also means people keep commenting on my weird zombie feet in shorts-and-thongs [flip-flops] weather).

When winter(y weather) comes, I am invigorated. I feel energised and excited. I don’t have to hide inside in the air con all day. I want to go out for walks in the bushland by my house in the rain. I know others experience worsening of joint pain symptoms or Seasonal Affective Disorder in these conditions, but I thrive – although that may have something to do with our mild winters (I don’t think it usually drops below about -5).

Since my circulation has deteriorated I do find it hard to get my extremities warm, and my hands and feet have started sweating when I’m cold now (I’m attributing that to a confused sympathetic nervous system), but for me those are small prices to pay, I can bundle up in my favourite clothes to keep warm: boots, long coats, scarves, tights and leggings, thigh high socks, leather gloves, cozy jumpers and cardigans. I can snuggle with my partner and my cat under the covers listening to thunderstorms.

It will even be cool enough to wear a corset under my clothes if I’m headed out for the night and need some secret support to eke out a few extra hours of socialising (if you’ve never worn one, corsets are boiling! They’re often three layers of fabric, and my favourites have top layers of leather or brocade, so they’re thick and they don’t breathe).

I can’t wait. My mood is already lifting and I’m looking forward to decreased pain and improved productivity. How does your pain or illness react to the weather or temperature? Do you have good seasons and bad seasons? Do you think I’m crazy for loving the cold?

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.

Stealing Beauty.

This post is going to be vain and self-indulgent, but I’m putting it out there anyway in case any of you can relate.

I hate what my illness has done to my body. Not in the reduced function and pain (although that sucks too), but to my appearance.

So much of our identity and how others perceive and therefore treat us is constructed from the way we physically present ourselves. I’ve been looking at research into healthcare professionals forming judgements based on their beliefs and attitudes about pain and pain patients, and how that reflects their practice (hint: it does, and often not in good ways). It has been said that it is hard work presenting as a credible pain patient, and that this is particularly difficult for women. We are faced with the dilemma of having to appear ‘sick’ enough to warrant treatment, while still not looking like we’ve ‘let ourselves go’ (because that might mean we’re depressed, and that might mean the pain is all in our heads). I’ve actually had a (male) general practitioner tell me I would feel better if I put more effort into my appearance. My mother, while seeing a (male) lawyer regarding a motor vehicle accident (she was in a full leg cast at the time), was told “she was made up so she couldn’t be that bad”. We can’t win.

But truthfully, that isn’t all of it. It’s not even the visible illness markers, like my cane, or a walker, or my surgical scar (which I am oddly proud of and wish I had the chance to show off more often). These things are interpreted by the general public as signifiers of specific problems, which, while still a bit embarrassing at times, are associated with legitimacy and sympathy, and a sense that it’s not your fault.

The things I find humiliating, and that I get furious about, are the little, silent things about my appearance, that others don’t attribute to my illness. My frizzy hair, the result of autoimmune hair loss and my body’s feeble attempt to slowly regrow the lost hairs. The thin patches in my hair from the same. The ironic extra hair on my extremities caused by my body’s lack of capacity to regulate temperature, and the excessive sweating caused by the same. My frequent inability to deal with this hair because sitting at a salon or bending to shave my legs is physically difficult. My red, blotchy, flaky skin, courtesy of the autoimmune rash and dermatitis that has now spread over my face, chest, back, and upper arms, and which does not consistently respond to anything. The numerous unexplained small bruises I’ve been experiencing since I got sick. The white toes and purple feet and legs of Raynaud’s phenomenon. The two or three kilograms of bloating that can follow consumption of any dairy or grains and make my clothes immediately ill-fitting and awkward. My hunched, limping gait on days when I am stiff and sore but not bad enough for a walking aid. My need for appropriate (and usually un-fancy) footwear to negotiate walking and stairs when I can’t feel my leg.

Then there are the physical indicators courtesy of pain and pain medication that I fear get read as ‘junkie’; shaking, sweating, a face full of pimples, scratching at my ever-itchy nose, and dilated pupils, accompanied by rushed speech and trouble concentrating.

Pain and sickness are ugly on me. I hate that people who don’t know I’m sick might interpret these things as laziness, or a lack of awareness. I hate that it takes me twice as long to look half as decent. I hate the expensive and often ineffectual hunt for beauty products I can use without disrupting the ever-so-delicate ecosystem of my body, and that the products I do find often don’t work as well. I hate that this illness is stealing what should be my ‘pretty years’, when I’m at a good weight for me, and I’ve grown out of youthful awkwardness, and society still wants to look at me. I hate that the social phobia I conquered as a teenager is re-emerging, based on all these fears and insecurities. I hate that it’s vain and self-absorbed to talk about these things, even in the midst of a society that teaches women that their value is based on their appearance.

Most days, I can get over these things. I can square my shoulders and head out feeling ugly and self-conscious. But today I can’t, and that’s okay. I’ll try again tomorrow.

Link Round-Up.

http://www.psychologytoday.com/blog/turning-straw-gold/201208/more-what-those-chronic-pain-or-illness-don-t-want-hear-you-say

A crowd-sourced summary of common annoying and ignorant responses to the chronically ill or in pain from others. I’ve had nearly all of these at one time or another and I’m sure a lot of you have too. Print out for insensitive family members and friends!

http://bobisdysautonomia.blogspot.com.au/2013/02/well-at-least-its-not.html

In a similar vein to the previous link, a note on why the response, “At least you don’t have [insert horrible thing]” is not helpful.

http://www.alexandrafranzen.com/2011/03/19/how-to-survive-when-everything-sucks/

Tips for how to get by when life is crappy. This isn’t illness-specific, but most (if not all) of these would be suitable for those times when I’m wallowing in “why me?”, and many could be done from bed if you are having a particularly nasty flare up.

http://fibrofeist.com/2013/02/05/what-i-need-you-to-know-i-do-wonder-why/

I love this series from Fibro Feist, and this piece was really moving for me. I think we all wonder why from time to time, and wonder if there was something we could have done differently to avoid getting sick. For my part, I know my issues had a genetic contribution, but various genes can be activated by environmental factors (the study of which is called epigenetics, if anyone wants to learn more), and I wonder if I could have avoided triggering mine. I’ve been worrying a lot lately about what I can do to prevent activating (if not transmitting) my sub-par genes in my hypothetical future children.

http://sunlightinwinter.wordpress.com/2013/02/05/violins-and-enhanced-sensory-maps-2/

I found this so interesting! I like the idea that all of us individuals with chronic pain are really just very well-practiced and highly skilled at detecting pain – it’s nice to occasionally re-frame what feels like a weakness as a strength. Plus, being hyper-sensitive to stimuli would have an evolutionary advantage; since many of us are too sore/fatigued/immobile/horizontal to run away from or fight off a threat, it helps if we can detect potential threats early!