Tag Archives: dysautonomia

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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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?!

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?

Blog Award.

The very kind Mommabel from True Life is Stranger than Fiction nominated me for a Versatile Blogger Award! I only found her blog on living with autoimmune disease recently, but am already enjoying another perspective on many of the same challenges I face. You can find her writing here.

The award involves picking 15 other bloggers to award, and listing seven interesting facts about yourself. I follow approximately a million blogs, but I thought I would stick to my favourite chronic illness/health bloggers, since that’s more likely to be relevant to my own readers, so I have a few less.

I would like to nominate:

http://livingsick.com/

http://sunlightinwinter.wordpress.com/

http://mlindh359.wordpress.com/

http://dysautonomiac.com/

http://mecfsdreamland.wordpress.com/

http://fibrofeist.com/

http://bobisdysautonomia.blogspot.com.au/

http://25pillsaday.wordpress.com/

I’ve been following some of these for longer than others, but all of them have a writing style I love (is it just me, or do people with chronic illness have an awesome sense of humour?) and a lot of useful information.

And I’m not sure how interesting these are, but some random facts about me:

1. I am ambidextrous. I could write with both hands until I was six, when my teachers told me to focus on one (I went with left). My writing has deteriorated through lack of practice, but I still use both for painting, sport, using scissors, makeup application, and pretty much anything else. I like that I defy generalisations regarding brain lateralisation!

2. In addition to a 2.5 year old black cat named Bella, I share my house with a 4 year old, 2.5 metre, 5 kg carpet python named Tannis. I was terrified of snakes when she moved in, but have grown much fonder of her since, although I’m still not brave enough for cuddles.

3. I am a word nerd. I studied linguistics briefly, and have English teacher as my back-up career. I am constantly mentally correcting typos and mistakes in other people’s writing (although I’m sure my own has plenty!), and correct my partner’s word usage a lot, which needless to say he does not particularly enjoy. It’s a compulsion.

4. I am wildly unathletic but have always enjoyed ballroom dancing (particularly Latin styles). I did lessons from the age of 10 to 16 and got to competition level. I’m still hopeful my back will allow me to restart lessons soon, although my spinal implants have forever ruined my fluid hip-swivel.

5. I am pretty awesome at baking, but can’t cook to save my life. If it does not have a high sugar content, I will ruin it. I recently started eating Paleo and am discovering that baking with grain, dairy, and sugar free ingredients is a lot more challenging.

6. I also have a black thumb. I kill plants at an alarming rate, even when I try really hard to keep them happy. I am still mourning the loss of a beautiful purple orchid, although I think this one survived for record time (about two months). Unfortunately, I live in the house my grandmother (an avid and talented gardener) used to live in, and I have killed at least half of the plants here.

7. My mother is Scottish, and I did some family history investigating for her recently. It turns out that her father’s family motto some several hundred years ago was Latin for ‘Swift and Strong’. Considering my family is more ‘Slow and Crippy’, I find this intensely amusing.

That’s it! Thanks again to Mommabel for the nomination.