Tag Archives: Raynaud’s phenomenon

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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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?

Stealing Beauty.

This post is going to be vain and self-indulgent, but I’m putting it out there anyway in case any of you can relate.

I hate what my illness has done to my body. Not in the reduced function and pain (although that sucks too), but to my appearance.

So much of our identity and how others perceive and therefore treat us is constructed from the way we physically present ourselves. I’ve been looking at research into healthcare professionals forming judgements based on their beliefs and attitudes about pain and pain patients, and how that reflects their practice (hint: it does, and often not in good ways). It has been said that it is hard work presenting as a credible pain patient, and that this is particularly difficult for women. We are faced with the dilemma of having to appear ‘sick’ enough to warrant treatment, while still not looking like we’ve ‘let ourselves go’ (because that might mean we’re depressed, and that might mean the pain is all in our heads). I’ve actually had a (male) general practitioner tell me I would feel better if I put more effort into my appearance. My mother, while seeing a (male) lawyer regarding a motor vehicle accident (she was in a full leg cast at the time), was told “she was made up so she couldn’t be that bad”. We can’t win.

But truthfully, that isn’t all of it. It’s not even the visible illness markers, like my cane, or a walker, or my surgical scar (which I am oddly proud of and wish I had the chance to show off more often). These things are interpreted by the general public as signifiers of specific problems, which, while still a bit embarrassing at times, are associated with legitimacy and sympathy, and a sense that it’s not your fault.

The things I find humiliating, and that I get furious about, are the little, silent things about my appearance, that others don’t attribute to my illness. My frizzy hair, the result of autoimmune hair loss and my body’s feeble attempt to slowly regrow the lost hairs. The thin patches in my hair from the same. The ironic extra hair on my extremities caused by my body’s lack of capacity to regulate temperature, and the excessive sweating caused by the same. My frequent inability to deal with this hair because sitting at a salon or bending to shave my legs is physically difficult. My red, blotchy, flaky skin, courtesy of the autoimmune rash and dermatitis that has now spread over my face, chest, back, and upper arms, and which does not consistently respond to anything. The numerous unexplained small bruises I’ve been experiencing since I got sick. The white toes and purple feet and legs of Raynaud’s phenomenon. The two or three kilograms of bloating that can follow consumption of any dairy or grains and make my clothes immediately ill-fitting and awkward. My hunched, limping gait on days when I am stiff and sore but not bad enough for a walking aid. My need for appropriate (and usually un-fancy) footwear to negotiate walking and stairs when I can’t feel my leg.

Then there are the physical indicators courtesy of pain and pain medication that I fear get read as ‘junkie’; shaking, sweating, a face full of pimples, scratching at my ever-itchy nose, and dilated pupils, accompanied by rushed speech and trouble concentrating.

Pain and sickness are ugly on me. I hate that people who don’t know I’m sick might interpret these things as laziness, or a lack of awareness. I hate that it takes me twice as long to look half as decent. I hate the expensive and often ineffectual hunt for beauty products I can use without disrupting the ever-so-delicate ecosystem of my body, and that the products I do find often don’t work as well. I hate that this illness is stealing what should be my ‘pretty years’, when I’m at a good weight for me, and I’ve grown out of youthful awkwardness, and society still wants to look at me. I hate that the social phobia I conquered as a teenager is re-emerging, based on all these fears and insecurities. I hate that it’s vain and self-absorbed to talk about these things, even in the midst of a society that teaches women that their value is based on their appearance.

Most days, I can get over these things. I can square my shoulders and head out feeling ugly and self-conscious. But today I can’t, and that’s okay. I’ll try again tomorrow.

Sick Day.

Weary, weary.

I am having one of those bone-crushing, limbs-made-of-concrete, too-tired-to-walk-across-the-bedroom-for-my-meds days. Which is made even more frustrating by the fact that I’m not even in much pain today. This should be a good day, where I catch up on chores and walk to the shops, and instead, it’s 3:50pm and I’m still too tired to shower. Washing my hair seems about as achievable as climbing a mountain right now. I am hungry and home alone and too tired to prepare food.

I realise sharply, on days like this, that although I tend to think of myself as having ‘a stuffed back’, or sometimes as having chronic pain, what I actually have is an illness, of which my back problems are only one symptom. The largest, most inconvenient, and most life-altering symptom, definitely, but taken together my health issues are more complicated than that.

Most of the time my other problems are minor: skin rashes and eczema, hair loss, poor temperature regulation, low blood pressure, dizziness, nausea, vomiting, reflux, diarrhea, constipation, profuse sweating, shortness of breath, heart palpitations, tremors, Reynaud’s phenomenon (purple feet with white toes), occipital neuralgia (migraine-like symptoms from a neck issue), other joint pain. Each of those things in isolation, although irritating and occasionally debilitating, is largely manageable, so I often focus on the minor problem occurring at the given moment and lose sight of the fact that each piece is part of a bigger picture.

For the last week or so, my brain fog has been particularly bad. I’ve kept losing words on the tip of my tongue, forgetting why I entered a room or opened a browser window or the fridge or picked up my phone, started a sentence only to leave it hanging mid-air while I panic, eyes darting, trying to retrieve my thought. Sometimes I can piece it together, sometimes it comes back the next day, sometimes it is gone for good and I worry it was important.

When my lovely, articulate, intelligent brain – the brain I count on to get me through my course and into my profession, to keep me who I am, to make me who my partner and family and friends love – is failing me;

When my body, despite having nothing obviously wrong with it, is overwhelmed by the simplest tasks;

When this happens, on days like today – more than in hospital, hooked up to IVs, with fresh surgical scars and scans and doctor’s appointments – I feel sick.