Category Archives: Living With Autoimmune Conditions
Today I find myself exactly where I was two years ago. I’m in a different house, in a different village, so it’s not that ‘exact place’; it’s a mental state. I’m blogging and excited with my preparations to go to Problogger, otherwise known as ‘Willy Wonka’s Chocolate Factory for Bloggers’ because it’s so damn exciting to get together with other people who live out their lives online as they’re working at home, alone. It’s also possibly because we tend to like chocolate too!
But…. 2 years ago I wrote this post, and then I went to Problogger and had a great time, and got inspired, and fired up, and then…. I stopped blogging. So this is my return to my blog after a 2 year absence. Yep, starting over again.
What happened? I got busy, I got tired, I was too busy working on other people’s blogs and websites to work on mine, I was forgetful, but more than that I was overwhelmed. I found myself writing more about how sorry I was for not writing, than anything else. And why? I mean, you don’t care! There’s not even that many of you to care! But I felt guilty and stressed, over something that was supposed to be a fun hobby, and that wasn’t a good place to find myself. I was too busy living my life to record it, and I felt guilt about that. Read the rest of this entry
This week has been absolute joyous madness. And the next month is going to get even crazier! It’s creative chaos time! My husband is The Scrappy Sculptor. He makes sculptures using old, rusted scrap metal and turning it into beautiful creatures and characters, full of life and personality. His work is amazing. Yes I’m biased, but check this out:
I’m also trying to engage with my own visual art to a level where I can hope to make at least a little food money from it. This month is Escape Artfest, our region’s annual festival of all things arty and creative. Jodhi is exhibiting in two exhibitions, I’m exhibiting in one. I’m also teaching a two day master class in clowning, and writing for three writing prizes. So there is a lot of making, writing and searching for inspiration going on in our house at the moment. To top it all off, Jodhi will also be exhibiting in two other exhibitions next month, and these are in western NSW, an 8 hr drive from home (each way). Oh yeah, and I’m on a plane heading to QLD for a week to attend the Problogger event (so very, very excited!). Jodhi’s then going to QLD for a different week, so we’ve got a few long return trips to Sydney ahead for airport drop offs and collections.
So where’s the relaxing and slowing down you may well ask? Well, I’m being very careful and conscious to make sure it’s all managed well. Lots of rest times, energy scheduling, and being kind to myself. Letting go off perfection and embracing imperfection as part of the creative process. That’s always been one of the toughest things for me as an artist and it’s meant I haven’t put as much of my work on public display as I could have in the past, because of a constant feeling of not being good enough. My own standards are impossible to meet, and the public perception of my work could never be as harsh or critical as my own has been. But not anymore. I’m smiling at mistakes. I’m following the paths they open up to see where they take me. And it’s so much more fun this way! It feels more ‘creative’, more inviting of a creative energy, a muse to lead me to my finished work. Creativity has often been a chore in the past because I made it that way with my self-criticism, judgement and perfectionism. So yeah, that’s a 20 year career as an artist that I’ve often made far more difficult and less enjoyable for myself with my own inner “poo-poo”-er. Well, I’m shutting that little demon in a box and throwing away the key. It serves no purpose anymore, and once I caught a glimpse of life without it, I was hooked!
Do you make aspects of your life more difficult than they need to be?
Do you have your own demon or inner poo-poo-er?
Running away seems to be a survival instinct for me. I’m feisty, but when it comes down to the choice of fight or flight, I’m cashing in my frequent flyer points and getting the hell out of wherever. So I’ve been away for a while because I’ve been on the run again. Not literally; I didn’t actually go anywhere, but a section of my brain (officially named The Blog Cortex), packed its bags and hoofed it. I’ve attempted to come back a few times, but discovered The Blog Cortex was only interested in phoning it in from an area with dodgy reception. But today, its back, the bags are unpacked, and the shiny distractions have all been put away.
I think the initial trigger for my vacay from blog land was politics. Australia is in an election year, and quite honestly it’s depressing. That I do mean literally. It’s actually made it hard for me to get up sometimes (hello black dog, my old friend). I’m a deeply political person. I believe in human rights, caring for the environment, compassion, equal access to services etc. You might rightly get the sense I’m a bit left-wing. So political causes, I’m on board with. But I hate politics. Perhaps that’s not strong enough. I detest politics. In Australia at least, our current political landscape consists of posers and bullies, often within the same person. It’s a whole lot of arguing about nothing, calling each other names, clichés, and meaningless diatribe, no policies, and punishing our most vulnerable people in the name of political point scoring. Oh, and senseless bribery. Let’s not forget buying people’s votes with nonsensical incentives. Our politics is sexist, racist, ageist, homophobic, xenophobic and every other form of prejudice you can think of. And at times, downright idiotic. So I hate election years, witnessing billions of dollars are spent achieving nothing but some ego stroking and catchphrase generating.
At the time The Blog Cortex ran for the hills, our then Prime Minister Julia Gillard, was copping a battering from the opposition and her own party for, well, being female. She was then ousted by our Former Prime Minister (who she had ousted earlier), the election was recalled, and the idiocy continued. It was too much. I’m a political person, but I have always wanted this blog to be apolitical. I am known to have the odd rant about politics, but this blog is intended as a sacred, idiot-politician-free zone. But I became so surrounded by idiocy, and so completely and utterly pissed off and depressed by it all, that I couldn’t continue to write about other things when all I wanted to do was scream at these dickheads ruining my country. So The Blog Cortex ran. And kept running.
Then being away from here became a kind of blessing. I decided to take the time out to refocus on why I was here in the first place. What did I want? Why was I blogging? And why, as a self-confessed recovering perfectionist, did I still find fronting up to the page and spewing out my imperfections so scary? I had started to feel inadequate, comparing myself to people who have been blogging for years, and becoming terrified I was just copying every other blogger out there. What was the point of blogging if I wasn’t being original? Except I was. I’ve always written authentically. My blogging voice is still finding and defining itself, but it has been my voice on the page every time. I care about health, the environment, living simply, and ‘finding myself’. So do many other bloggers, so it’s inevitable I’ll write about the same topics as them now and then. But getting it into my head that this was ok was a bit tricky. That it’s ok to be imperfect. That it’s ok to be a beginner. I’ve always felt this need to be the best at everything I do, and being a beginner at things has always been more challenging for me because of it. So I took a bit of time to get the hell over myself, and just be me. The real me, not the perfect me. Read the rest of this entry
So, today was a new day. I imposed an end to my day of sloth and self-pity, although it’s possible that wine and chocolate are still featuring in my evening. I feel the need to apologise to you for yesterday’s post. For my expression of my weakness, exhaustion, my admission that sometimes it’s just all too much. But I’m not going to.
You see, I’ve spent most of my life sick and in pain. I’ve also spent most of my life pretending I’m not. Hiding the pain. Performing on stage and running off after the bow to throw up and collapse. Both in my work on the stage, and in my real life: my acting career didn’t pause when I left work. When people have caught me out, when I’ve been upfront about my illnesses, when someone’s suspected something, I’ve laughed. I’ve assured them it sounds, or looks, worse than it is. I’ve let them believe my illness was more a formality than anything else, I wore it like a badge of honour, but quickly assured I was still completely capable of anything, everything, life throws at me. And for the most part I have been. I made myself be. I’m stubborn. I’ve excelled and succeeded in areas that ‘healthy’ people would struggle to. Even if that meant making my husband carry me into my office and place me upright behind my desk and hover close by for when I needed him to do something physical for me, like answer the phone, or pick me up off the floor.
And in those rare moments when I’ve been completely caught out, when I couldn’t hide it, when the cane came out, when I had to take time off, when someone saw my crying, or wobbling, or collapsing, I apologised. I was so sorry for making a big deal of it. I was sorry for causing anyone inconvenience. I was so sorry for people seeing me like that. I was sorry for my weakness, my exhaustion, causing a scene, disturbing the peace, upsetting routine, being ‘abnormal’. Being less than. Being imperfect. Oh how I apologised! Did I need to? Probably not. My perception was always tainted by my own standards of perfection for myself. But then again….
I am Sloth.
I am walking with three legs, though one barely moves, and one is metallic.
I dress in grey clothes unsuitable for public eyes.I soak in their warmth and lack of expectations.
I am lupie, as only other Lupies would understand.
I do not welcome Lupus, yet it insists on staying like the smelly squatter on the couch who just.will.NOT.go. No matter how many hints I leave.
I am sad, depressed, but not in the darkness of the past. Just dealing with a day that is best forgotten.
I am hormonal. This was not a good time for a monthly visitor to join the frequent flyer on the couch!
I am not myself. I am no one today. I am just… in limbo, waiting for less pain. Less, just less.
I have a high pain threshold after so many years, but today I am crying. It is too much. I am battle-weary.
I am dark chocolate with sea salt and red wine. It makes things more… bearable.
I have a long To-Do list, but my brain and body yell, “no!”
I am full of self-pity. I do not like to be. I think sometimes it is necessary.
I feel I am achieving nil. I feel disheartened. I write to remind myself of the year to date. The effort exhausts me.
I am reminiscing of a life before lupus. But do I remember? Did I have one at all?
I ask myself permission to stop. To do nothing, to rest. I readily agree. Today my brain offers no arguments.
I am not brave. I am a coward today. I fear. I cry. I question.
I dream of travelling again to faraway lands. I wonder if I ever will.
I lay. I do not sleep. I toss, I turn, I hug my iPad and its connection to The World.
I speak on the phone to a friend, but his words confuse me. My brain has no reception. Too much interference.
I am not writing the post I thought I would. Instead I am massaging my body with key strokes, quick, but gentle. Always gently.
I wait for my love to come home. To fill the house with light for I have none. But he is also tired.
I close today with hope that tomorrow brings more light. More, just more.
Dear Readers, I disappeared (again!). I know it wasn’t that long ago I wrote a post just like this one, but I’ve been in the same guilt zone lately. I had some really shitty days with my illness where my brain had enough trouble remembering my name, let alone writing blog posts. I also had a few things to get sorted out in my head before I returned to the keyboard. So (once again) I’m back. I can now happily guarantee that these disappearances will happen from time to time. Between lupus, ME etc, depression and anxiety, the rest of my life, and those moments where I just need to shut out the world, I’m gonna have to take time out now and then. I’m sure none of you could care less, but as a recovering perfectionist, I’ve had some struggles with not facing up to the screen every day. But, I can finally say I’m now ok with it (I think!).
I have also been touched by some gestures made by a couple of lovely bloggers and readers.
I’ve written before about being an insomniac. Insomni-maniac is probably closer to the truth. If there’s anyone out there not sleeping like crazy, it’s usually me.
There’s a number of reasons:
- My autoimmune conditions can have insomnia as a bonus
- Most of my medications for aforementioned conditions come with built-in insomnia
- I’ve had depression on and off for a lot of my life, but have had a very bad episode for the last fifteen months: depression causes insomnia
- I keep replaying events and conversations in my head at bed time which one day I’m just going to have to finally deal with
- And finally, that Type A, achievement-driven, million ideas per second, perfectionist personality of mine that I’m trying to control. It likes to spend bedtime planning, evaluating, regrouping, debriefing.
So all in all, sleep is like an exotic destination I dream of visiting one day, and no matter how much work I do to try to get there, I just don’t seem to mange it. Except at about 7 am. I can sleep through the days like a champion, but unfortunately society at large doesn’t really cater for people who function that way. And what makes it more frustrating is that Mr Raw could win gold in the Sleep Olympics – he’s asleep as soon as his head hits the pillow. Or even beforehand.
As I found myself getting up to my usual crazy insomniac antics at 4am I decided to keep a list of them: Read the rest of this entry
It’s Mothers’ Day in Australia today, so I hope all the mums out there are getting some relaxation and being shown just how much they’re appreciated. If not, go kick some offspring butt and make them give you the respect you deserve!
Mothers’ Day is a bit of a tricky one for me. It carries a lot of emotion. I guess the primary reason is that despite wanting to, Mr Raw and I are unable to have children because of my autoimmune conditions. It’s something we’ve mostly come to terms with, and we’ve celebrated other joys in our life that may not have been possible if we had become parents. But seeing friends my age and younger, enjoying parenthood so much, can still sometimes cause some sadness and longing for ‘what could have been’. Mind you, we’re not alone. I have a few friends who have also been unable to have children. Some are still struggling through IVF, and others have accepted that it won’t happen but are yet to come to terms with the emotions and finality involved. There are many reasons among us, but Mothers’ Day is somewhat of a torment for us all. However, that being said, I love watching my friends who are parents, especially the mums. Seeing these women I’ve known from school, or who I’ve employed, or who have employed me, watching them grow and become strong, nurturing goddesses, giving more love than they ever thought possible to their beautiful children.
My own mother and I have had a strained relationship at times, so it hasn’t always been happy in that sense either. Actually, strained is an understatement. I have issues, she has issues, and together we have more issues. We spent several years estranged. But we have a good relationship again now, and I see her regularly. In fact, I lived with her last year, for the first time since I was 16. So today’s not negative in that sense this year, but it definitely has been in the past.
We also had a family tragedy last year when Mr Raw’s young cousin died from suicide. She chose to take her life on Mothers’ Day. To dramatically understate (because words just aren’t enough), her mother is devastated. Her life now revolves around grief and trying to raise awareness for suicide, depression, and post traumatic stress disorder, in her daughter’s name. This year’s Mothers’ Day is one of grieving for our family, and of course, it will always be so.
I’ve decided to also write about something else for Mothers’ Day, the effect a mother’s influence and bond has on her daughter’s health. Read the rest of this entry
Whoooooo likes yoghurt*? (This is your cue: Weeeee love yoghurt!) Who consumes so much yoghurt that if they poured their weekly yoghurt consumption on the floor instead of down their throats, they’d end up with enough white goodness to build yoghurt-people and walk in a yoghurt wonderland? Just me? Didn’t think so (I hear ya!) *For the purpose of correct spelling according to my country, and the country my country’s language originated in, I will be using the word ‘yoghurt’ in this post. For the purposes of being an attention seeker and making it easy for everyone on the www to find me, I’ll use the word ‘yogurt’ in the title 😉
Why Eat Yoghurt?
I am addicted to yoghurt, and this is a good thing. Yoghurt is a super food and extremely beneficial to those of us who have digestive issues. The Weston A. Price Foundation states:
Yogurt and kefir are lacto-fermented products that can aid digestion. They may be the only dairy products that some people will be able to tolerate well.
This is definitely true for me. I love cheese but it does not love me. Milk is a liquid laxative to me, and I may as well scoop ice cream straight into the toilet bowl (TMI? You’re reading the wrong blog!). However I can eat yoghurt endlessly. Kefir we’ll come back to another day.
A review by the Jean Mayer U.S. Department of Agriculture Human Nutrition Research Center on Aging at Tufts University found that pro-biotic yoghurt can provide assistance to a number of gastrointestinal disorders including: lactose intolerance, constipation, diarrhoea, colon cancer, inflammatory bowel disease, and H. pylori infection. However, please note that these beneficial effects don’t necessarily apply to the sugary dairy confections which a lot of big companies plug in the supermarkets. Real yoghurt is pro-biotic – it contains live cultures – and is made through lacto-fermentation. It does not contain sugar, and has no need for gelatin or gluten. Yep, that’s right, wondering why you’re avoiding gluten but still feeling bloated after breakfast? Read the label the next time you buy a big name sweetened supermarket yoghurt.
Real yogurt can also help stabalise vaginal flora (ie prevent yeasty infections ladies), and as it contains all of the nutrients of milk, it has all of the health benefits of milk, including helping to prevent osteoporosis. For someone like me who has to take calcium-depleting steroidal immune suppressants, high levels of calcium in the diet are absolutely vital.
Let’s make it! Read the rest of this entry
So, after making a commitment to write every day, I didn’t post yesterday. I was hoping it wouldn’t be quite so soon before I broke my promise to myself, but I’m proud that I did. It wasn’t due to lack of motivation, procrastination, or even because I was off having a fantastic time somewhere. No. Unfortunately, it was because of my old nemesis; an enemy that likes to regularly interfere with my plans. You see, I am chronically ill. My body wages war on itself. I have several autoimmune conditions, like a warped lottery list of free gifts you hope never to win: SLE (lupus), sjogrens, fibromyalgia, ME/CFS, vasculitis. There’s more, but that’s enough of a list for one post!
I try to live as normal a life as possible. Sometimes I manage, sometimes I don’t. In the past I’ve fought it. I’ve refused to give into my illness and rampaged through life, in denial and determined to show my body who’s boss. Touring the world for a year, working up to 16 hours a day, seven days a week, comes to mind as a clear example (and a VERY dumb thing to do!! OK doctors, you were right!). The problem with trying to outrun autoimmune conditions (or any chronic illness) and refusing to adjust your lifestyle, is that these behaviours can only have a limited time frame. And, if you’re as bloody stubborn as I have been, so can your life. A positive attitude is one thing, but denial is another. The media is always throwing stories at us about ‘real life heroes’ who battle their illness and refuse to give up, but there’s a big difference between refusing to give up, and refusing to help yourself. I’ve never denied being ill, just that it effected me.