Tag Archives: autoimmune disease

Brain Fog & the Blahs.

So the post title might sound like an unappealing band, but that’s the state of things at the moment, I’m afraid. Nothing big and horrible, just a whole bunch of small irritations and disappointments compounding to make me feel generally – ugh.

I applied for a job, which was huge for me; I’ve been talking myself out of it for so long that summoning the courage to actually apply took a lot. I sorted referees (terrifying! I hate asking people to vouch for me), bought interview-appropriate clothes (I’ve lost 16kg and all my tailored stuff now looks ridiculous) and updated my resume (a.k.a. engaged in a brief exercise of ‘let’s look at all the ways in which I have failed’). I didn’t hear back, so I’ve been doom-and-glooming about that, even though I rationally know that at least now I’m prepared for the next thing that comes along. I also was recommended for a position a friend is vacating, and was assured that I wouldn’t need to interview or anything, I’d just get it, and haven’t heard back about that either. I feel like, hey, you don’t even know how crap I am yet! Och well.

I’ve just switched to the slow-release of oxycodone, after being on fast-release for a couple of years. The latter worked well, but makes me hyperactive, so at night-time I’d have to choose between sleeping in the next three hours or pain relief. It also wore off too quickly to get by with one dose during uni days when out for several hours at a time, and the facial-but-especially-my-nose itching which has been a constant side-effect for me had worsened to the point of being unbearable lately.

So, I asked for slow-release, and on all those counts it is better – but the pain relief is less effective. And pain relief is kind of the most important thing when it comes to pain medication, right? I’ve been waking through the night feeling like the muscles in my back around my facet joint are burning (new and exciting pain symptoms, yay!), and my gait is worse because I can’t force my leg through the swing as I take a step in the way I need to. And because I am eternally terrified of seeming like a junkie, I will have to put up with it for a month until this script runs out.

Worse, I’m going on a date with my partner tonight, and have been looking forward to it, and now sitting through dinner and a movie is looming, horrible and insurmountable. I am determined not to (for the umpteenth time) get halfway through dinner and have to go home because my back hurts, but I also get really surly and curt when I have to work through pain. Not the best setting for an enjoyable romantic evening.

And last but most importantly for me, oh god the brain fog. It’s been particularly malicious for the past week or so. I’m trying to finalise a research proposal and rewrite then incorporate some theoretical content into a literature review, both of which are fairly highly demanding cognitive tasks (at least for me). My usual coping method during particularly bad bouts is to put the hard stuff on hold and do mindless busywork tasks, but my deadlines are looming and it needs to get done. It’s like mentally walking through very deep mud trying to have ordinary conversations (I felt like the world’s biggest moron in my last supervisor meeting), let alone produce fluent academic writing. It’s massively frustrating to be sitting there, knowing I know the perfect word to describe a complex concept and yet not for the life of me being able to retrieve it.

So, after all that whining, in an attempt to be constructive; help! How do you manage brain fog when you have to work through it? Any strategies that might help? I’m open to anything!

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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 🙂

10 Signs You Might Be a Damn Hippy.

  1. You can name 10 uses for coconut oil without Googling or checking Pinterest.
  2. Your idea of ‘just like a chocolate milkshake only crunchy’ involved almond milk, bananas, nut butter, and cacao nibs.
  3. You spend an inordinate amount of time picking chia seeds out of your teeth.
  4. You couldn’t clean your house without baking soda and vinegar.
  5. You’ve traded in Chanel for home-crafted scents from Etsy. You persist, despite sometimes smelling suspiciously like an antique store run by an over-enthusiastic herbalist.
  6. You put a lot of food on your face. And underarms (coconut oil, baking powder and arrowroot starch only… so far).
  7. You spend as much time reading cosmetic labels as food labels, and in both cases, that is a lot of time.
  8. You’ve had an angry outburst in the aisles of a supermarket upon discovering the questionable ingredients that are in processed foods you’ve always eaten.
  9. You have the Environmental Working Group’s Skin Deep database in your favourites.
  10. You have not only changed your own diet to one considered unconventional by most of your peers, you’ve converted your family … and your pets.

I’m moving toward crunchy and proud these days.

And my ten uses for coconut oil, besides the aforementioned deodorant: cooking oil, home-made chocolate base, smoothie thickener, hair mask, skin moisturiser, shaving cream, eczema treatment, make-up remover, oil-pulling, and a spoonful with my multivitamin to encourage absorption of fat-soluble vitamins (A, D, E, & K).

Any others? I need MOAR COCONUT OIL (clearly) 😀

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?!

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!