Monthly Archives: March 2013

Link Round-Up.

Happy Easter to those celebrating, and happy long weekend to everyone else!

I decided to ignore my normal no dairy, grains, or soy rules for Easter and just eat what I wanted. It was delicious, but I feel pretty disgusting now; fatigued and moody with a pretty distressed digestive system. In a way, I think it’s good for me to fall off the wagon every so often, because it reaffirms how much better I feel normally, and that what I am usually doing is the right thing for my body.

So in case anyone else is in a chocolate-induced cloud of bleurgh, here are some distractions!

A piece from Laurie Edwards on the differences in medication efficacy between genders, the higher incidence of women with chronic pain, and the impact of these issues on equitable treatment. I know I post a lot of links on gender disparity in chronic pain, but it’s an issue that keeps popping up in my dissertation research and one I’m passionately interested in.

If you are one of the lucky ladies (or gents!) on steroids for autoimmune disease, you’re likely dealing with a whole host of sucky side effects. This article has some suggestions for how to combat one of them – dry skin.

Michelle at Living with Bob wrote this wonderful post on dealing with the all-too-frequent criticisms that seem to permeate the lives of individuals living with health issues. How many times have we all heard, “You just need to x, y, and z! You’re not trying hard enough!”? I think the perspective shift she discusses is essential.

Amanda at Celiac and Allergy Adventures has some great ideas for identifying and coping with social situations in which food allergies or intolerances may be an issue. I don’t handle gluten, dairy, or soy well, but tend to feel uncomfortable requesting special accommodations, so I usually just don’t eat or eat it anyway and then leave suddenly when I make myself sick. I know this is ridiculous and I’m working on being assertive!

A chronic pain topic I think is incredibly important and not talked about enough; Tracy from Oh What a Pain in the… discusses some difficulties and potential solutions around having sex when you have chronic pain. A friend who did a multidisciplinary pain treatment had a fellow classmate come up to her and quietly ask her if she had any difficulties in this area. This poor lady was suffering and didn’t feel like she could discuss it with her doctors or bring it up openly in class even though it was severely affecting her marriage and quality of life. This breaks my heart. Sex is important to our health and we should talk about it!

Is there anything you’ve written or come across that you think I should know about? Let me know!

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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?

Silver Linings and Small Victories.

To be honest, I am having a terrible, horrible, no-good day. I’m miserable and in more pain than I have been for a while and panicking and hormonal. And I suspect, on days like this, it is even more important to be grateful. So here we go.

This week:

I am grateful for sunshine on my head and dirt under my feet.

I am grateful for making plans.

I am grateful for good stories to get lost in (I’m currently on a Juliet Mariller rampage; she’s one of my favourite authors, if anyone wants a fantasy rec).

I am grateful for my cat, her cuddles, and her purrs. She really is the cutest. If she wasn’t so hard to photograph (she’s all black except for five hairs on her chest) this blog would be plastered in pictures.

I am grateful for rain, cooling and calming.

I am grateful for seafood and bacon, because yum, and chocolate, always.

I am grateful for my patient man.

I am grateful for freshly made beds.

I am grateful for the exhausted relief that follows tears.

I am grateful for deep breaths.

How about you?

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).

Link Round-Up.

My ginger-and-pasty complexion requires me to wish you a happy St Patrick’s day! Here’s a couple of (non-Irish) things that have caught my eye on the web over the last few weeks.

Mindfulness has been shown to be a helpful technique in relaxation and managing pain. Here are some quick-and-easy ways to give it a go while commuting or in a particularly boring lecture.

xoJane has been running a series on respectful interactions with certain groups of (usually minority) people. It’s been a bit hit-and-miss for me, but this one on interacting with disabled people was interesting. Although it’s visible-mobility-issue specific (the writer uses a wheelchair), both the article and the comments (which are awesome) gave me a lot of “me too!” moments.

Laurie Edwards, who wrote both a blog and a book that I love, published this interview on relationships touched by chronic illness with the author of another interesting new book, In Sickness as In Health.

In scary but unsurprising news, a study has proposed a link between the high levels of refined and processed salt in junk foods and autoimmune disease.

Julie at Managing Fibro wrote a beautiful piece for International Women’s Day about the link between gender and fibromyalgia, and the impact of that link on fighting for research and treatment.

Via Fibro Feist, this article discusses tips for keeping your relationship strong when you are living with chronic illness.

And from Toni Bernhard at Turning Straw into Gold, some common struggles for balance in chronic illness.

I hope you’re having a relaxing weekend.