Category Archives: Links & Resources

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 🙂

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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!

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.

Link Round-Up.

Here’s what I’ve been reading this week:

Toni Bernhard, who blogs for my favourite magazine Psychology Today (yes, I am a nerd) has written a lovely piece on how to cope with bad days. I like that this is realistic; those sunshine-y ‘Think about bunny rabbits and cheer up!’ type strategies tend to leave me grumpier than when I started.

I realise my link round-ups seem like they are entirely composed of xoJane Healthy and It Happened to Me stories, but what can I say? I love xoJane and I find the stories individuals construct of their illness experiences fascinating. This one is by a young woman who rapidly developed Multiple Sclerosis.

Sarah Wilson, of I Quit Sugar fame, has Hashimoto’s disease (underactive thyroid) and wrote this interesting post on common exercise mistakes. It is largely geared towards weight loss, but I was particularly interested by the idea that excessive exercise (potentially in response to the ‘obesity’ and dieting epidemics) could be contributing to the rise of autoimmune disease. I think her exercise recommendations are well suited to people with chronic illness regardless.

Britt at the Hurt Blogger brought to my attention that ePatients (essentially anyone who uses the internet to navigate chronic illness) have the opportunity to apply for a scholarship to attend the Stanford Medicine X conference. Applications close March 15, so have a look if you’re interested (and able to travel to Stanford – I would love to but it’s a little far for me!).

And via the lovely Sarah of Fibro Feist, a link to a list of 20 things sick people never take for granted. I had to laugh at soap; my quest for (preferably nice smelling) things I can slather on my skin without breaking out into a rash is never-ending and expensive!

Link Round-Up.

Also a little late this week, but a few things that have caught my eye recently in between journal articles:

http://www.alexandrafranzen.com/2013/02/03/how-to-say-no-to-everything-ever/

Sometimes saying ‘no’ is vital to our health – most chronically ill people I know have had to scale back significantly on commitments – but it can be really hard! This is a great formula for doing so kindly.

http://www.sarahwilson.com.au/2013/02/things-feeling-shit-full-its-ok/

An important reminder to keep digging when things are less-than-awesome.

http://www.aaup.org/article/chronic-illness-and-academic-career#.UR

Notes on being chronically ill in the academic sphere. While focused on academic staff, many of these issues also apply to students, and I’ve encountered difficulty with some of them, such as brain fog or fatigue being perceived as a lack of intelligence or motivation. My tertiary education has been a continuous struggle between being accorded accommodations I require for success without destroying my health, and the fear of being perceived as stupid and/or lazy.

http://www.xojane.com/it-happened-to-me/cluster-headaches

A personal account of living with chronic pain in the form of cluster headaches; a lot of the points in this resonated with me. Cluster headaches were one of my initial diagnoses when I started getting occipital neuralgia; I was glad it turned out to be wrong!

http://www.xojane.com/beauty/beauty-as-medication-its-an-effort-but-i-put-on-make-up-today

I liked this piece from a young woman with Crohn’s disease on getting dressed and made up to make yourself feel better when you’re sick. Putting on makeup (or even brushing my hair or showering) can be so hard when you’re fighting massive fatigue and pain, but if I can muster the effort to put myself together it usually does help, even if I’m the only one that sees it. Then again, I get anxious when my regrowth and eyebrows look bad (and it always happens at the same time!), so maybe that’s just me.

http://www.slate.com/blogs/quora/2013/01/14/medicine_and_hospitals_a_doctor_s_advice_for_being_admitted_to_a_hospital.html

Some aspects of taking care of yourself in hospital that wouldn’t have occurred to me as a patient, but certainly could be valuable, particularly for hospital ‘frequent fliers’.

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!