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.

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.

Silver Linings and Small Victories.

Belated to include the long weekend this week. Yesterday was the first day back at uni, and between class, a supervisor meeting, travel, and a music festival, I was out of the house for 16 hours. I feel like lukewarm death today, and probably will be paying for it for a week, but I’m counting it as a victory (a big one!) because I did it and I didn’t die 😀 Also, A PERFECT CIRCLE WERE AWESOME!

In other good things, this week:

I am grateful for good days; although I’ve had fatigue and have been feeling low-grade-ill this week, my pain has been negligible (at least prior to yesterday), and that’s vastly preferable to dealing with everything at once.

I am grateful for my body’s muscle memory; my anxiety-relieving yoga routine is becoming habit and I’m becoming more able to relax my jaw, neck, and shoulders quickly when I get stressed, which seems to head off my more severe occipital neuralgia flares.

I am grateful for fleeting moments of confidence in my capacity to meet the challenges in my life (and would like to foster more).

I am grateful for miracle-find natural beauty products.

I am grateful to be able to move my body in ways that feel good to me.

I am grateful that I am developing the ability to be grateful to my body, and to love it now and then, instead of constantly berating it for not meeting a social ideal in appearance or function.

I am grateful for the (technical) end of summer (even though I know it will be another month or two until it actually cools down).

I am grateful for a winter holiday booked, and something delightful to look forward to.

I am grateful that my state is stunningly beautiful and affords so many and varied destinations that it doesn’t matter too much if getting on a plane is currently out of my reach.

I am grateful for hidden reserves.

I am grateful for positive feedback when I need reinforcement.

Silver Linings and Small Victories.

A little late, but this week:

I am grateful for my body periodically deciding to be a team player, despite me berating it a lot of the time (I can hold a 30-second shoulder stand now! And I just reached my goal weight for the first time since puberty! I went on a horse trail ride!)

I am grateful for a partner with a sense of humour; I spent hours cooking on Valentine’s Day and developed serious gastrointestinal dramas shortly after he arrived home, so spent most of the evening in the bathroom, which was not what we had envisioned!

I am grateful for my capacity to be a good friend.

I am grateful for improved sleep and new prescriptions to try.

I am grateful for the discovery of a dairy-free and grain-free chocolate sponge cake that tastes just like regular cake (read: delicious).

I am grateful for stomach-cramp-causing hysterical laughter.

I am grateful for smart people writing research and blog posts that are insightful, informative, and a pleasure to read, and that restore my faith in humanity after I’ve read bad ones.

I am grateful for funny cat pictures.

I am grateful that every day is a chance to become better in my habits.

Silver Linings and Small Victories.

This week:

I am grateful for my body’s ability to surprise me, by being able and willing to jog on the spot for a couple of minutes one day and (very briefly) hold a shoulder stand the next – both firsts in a very long time.

I am grateful for the body next to me when I’m lying awake in the darkness, which (to paraphrase Tool) reminds me that I am not alone.

I am grateful for the sound of my partner’s heartbeat, my cat’s purring, and the white noise of the pedestal fan, which form a relaxing symphony to keep me company when insomnia is making me feel lonely.

I am grateful for yoga which decreases my anxiety, and my body’s effort to engage in it.

I am grateful for moderate productivity and higher energy this week.

I am grateful to people on the internet, sharing recipes and helping me to nourish my body and build my confidence in the kitchen.

I am grateful for delicious Paleo espresso brownies.

I am grateful to academics who share wisdom and guide the way for the rest of us.

I am grateful again for moments of connection, where someone else on the other side of the world reaches out a hand, and says,“You too? I thought I was the only one”.

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!

Link Round-Up.

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

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

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

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

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

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

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

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

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

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

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

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

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

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