Monthly Archives: April 2013

Hot and Cold.

I’m more or less back on track after my hiccup a couple of weeks ago, and typically enough, my body is engaging in its time-honoured tradition of stress reduction = get sick. I’m feeling flu-y and fatigued and my vision, which gets messed around with periodically by my occipital neuralgia, has been dodgy – I’m finding it hard to focus on a white computer screen and the letters are all blurry around the edges. Which is, of course, great for getting a research proposal completed in a timely manner.

Feeling vaguely feverish last night and this morning, I took my temperature and then realised I didn’t know what constituted a fever so took to Googling. Apparently, while 37 C is the average, anything from 36.4 to 37.6 is fine. Above around 39.5 is cause for concern, and 35 and below can indicate hypothermia.

So, maybe everyone else already knew this, but I’ve forgotten everything I ever learned in human biology in high school. And because I’ve been monitoring my body temperature daily for the last couple of months, I now realise – my body temperature is rarely if ever in the ‘normal’ range. It’s only been 36.4 and above for two days out of the last month, and is typically between 35.5 and 36.5. I’ve had a couple of days below 35.5 although never as low as 35.0. My highest body temperature in the two months has been 36.9, last night, and it’s never reached 37.

I already knew my body was weird, but this seems bizarre. I knew I subjectively felt like my body couldn’t regulate temperature well, and my extremities are cold and sweaty for most of the cooler weather. Mostly I don’t handle heat though – I suppose if a hot day in my hometown is often five degrees warmer than my maximum body temperature it could explain why it feels ever-so-slightly like dying.

Does anyone else out there have a lower-than-average body temperature? Do you know why? It seems like it could be a dysautonomia thing – my resting blood pressure is often the low end of normal, maybe they’re tied in? And how the hell do I work out if I have a fever?!

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Update.

I’ve been feeling bad for neglecting this little space lately, so I wanted to drop in and let you know I’m still alive and I’ll hopefully be back on track, if less regularly, soonish. Something happened recently which has been a pretty harsh blow and de-railed a lot of my plans, so for the moment all I can really manage is to keep chipping away at my dissertation and trying to wrap my head around some changes. Fun times ahead! Thanks for your patience in the mean time.

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?

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.

On: My skin, since developing autoimmune issues, has become even more of a Goldilocks than it used to be. That product is too harsh and I am burning and rashy and bits of my skin are falling off! That product is too weak and it doesn’t actually do anything! Occasionally though, I find something just right, and I wanted to share what works for me.

Facial wipes are a necessity for me, because I am lazy, but I am also trying really hard to be a grown up and stop going to bed with makeup on. Also, my skin hates water (yes, tap water gives me a rash, because I am a delicate flower) so by washing with water once and using facial wipes once I get to minimise irritation and still not be filthy. Yay!

Too harsh: I tried Wotnot Facial Wipes, and I wanted to love them. They are marked as suitable for sensitive skin, reasonably priced, 100% certified organic, and “free from sulphates, petrochemicals, parabens, artificial preservatives and fragrances”. I used a packet of 25 wipes and was really happy with them, repurchased, and got about half-way through the second pack when my skin started burning and blotching post-use. I bought a third pack, because I am stupid sometimes, and ended up needing to use the rest as body wet-wipes because they made my face burn so horribly. If your skin is less ridiculous than mine, give them a go though.

Too gentle: After my burning experience, I wanted gentle and soothing (also cheap, in case they were another bust) and grabbed some Dr Organics Aloe Vera Wet Wipes. These were indeed soothing and refreshing, and didn’t irritate my skin even by the second pack. Unfortunately, they also didn’t really do much else; my eye makeup would not budge with these, and it didn’t feel like they completely removed my foundation / tinted moisturiser either. I kept using them anyway, failing something better, but when they were out of stock upon trying to buy my third pack, I ended up with…

Just right: Ecocare Facial Cleansing Wipes in Organic Honey and Apple. To be honest, to me these smell… weird. The honey and apple combines into a boozy, mead-and-cider type thing that I don’t love. But the actual wipes are made with organic cotton, and they are soft and grippy, so they actually feel like they are cleaning effectively, and they get rid of every speck of makeup, so I can deal with the smell. They were about $8 for a pack of 25, so not super-cheap but still pretty reasonable. I’m on my second pack and haven’t broken out in hives yet, so it’s looking good. Praise be to the gods of unjustly sensitive skin!

Do you have any recommendations for sensitive skin cleansers / wipes? I’d love to add to my options 🙂

Note: I bought all of these myself and this is my honest opinion!

In, On, Move: A Wellness Series.

My first post in this In, On, Move fortnightly wellness series got crazy-long, so I’m going to break them up in future. Tuesdays will be In (food), Wednesdays On (beauty & personal care), and Thusdays Move (exercise and activity). As always, take what works for you and leave the rest 🙂

In: So my inner self is a five year old who throws tantrums at the slightest hint of deprivation. What, I can’t have dairy?! ALL I WANT is dairy. I have found the best way to deal with this is to keep experimenting with non-dairy imitations of delicious dairy foods, and then once the five year old is distracted digesting her treats, I sneak in lots of vegetables, fruit, and meat. Hence, the peanut butter chocolate milkshake (that contains no peanuts, chocolate, or milk).

Lots of non-dairy healthy smoothie recipes containing avocado and spinach pretend they taste like a regular milkshake. They are frequently delicious, but they are also dirty liars because they do not taste like milkshakes. To me, at least, this one actually does. It is my adaptation of this recipe from Detoxinista.

Ingredients:

– 7 icecubes

– 2 frozen bananas (peel the bananas before you freeze them, otherwise it is a giant pain in the ass to get the peels off).

– 1 to 1 + 1/2 cups of milk. I use almond, but go with your favourite. I use 1 cup if I’m making just for myself, and it comes out thickshake consistency, or 1 + 1/2 if I’m making a serve for me and one for my partner, and it is more regular milkshake thickness.

– 1 tbsp sweetener. I use maple syrup or agave, you could also use coconut sugar, stevia or honey depending on preferences.

– 2 tbsp of nut butter. I use almond when I want a more peanut buttery taste, while cashew gives a creamy texture without affecting the taste too much. If you can have peanuts, try peanut butter. If you can’t eat nuts, I’d try a tbsp or two of coconut oil for a good fat boost and some creaminess.

– 1 tbsp maca powder (optional) + 1 tbsp of cacao powder. I get this in a blend and use both, but if you’re so inclined just use cacao. Try and get cacao rather than cocoa if you can, as cocoa has had most of the nutrients processed out of it. Maca is good for hormone balance but don’t take it if you’re pregnant.

– 1 tbsp lucuma powder (optional). I love this stuff; it can be a bit hard to find, but it has a nutty caramel flavour that’s great with chocolate.

– Pinch of salt (optional, but it helps complement the chocolate flavour of the cacao).

– 1 tsp to 1 tbsp of vanilla essence. I use a tbsp because I love it.

– 1 serve of protein powder (optional). I just started trying a carob-based vegan protein powder, since most contain dairy products, grains, or legumes.

Instructions:

Crush ice. Slice banana. Blend ingredients. That’s it!

I have had this for breakfast every day for a week and I’m still not sick of it, plus it’s a solid energy and nutrient hit. Let me know if you try it!