The Good Side of Chronic Illness 1.0

You know what? Having chronic illness sucks. Having two or more chronic illnesses sucks even more. But, as cliché as it is to say this, there is always a silver lining—no matter how small—to something that changes your life so drastically. In fact, there’s often several.

I’ve written, and will probably continue to write, the odd post bemoaning my lot in life when it comes to health. It gets me down and frustrates me, so sometimes I vent. Tonight though, I thought I’d talk about a few of the good things that have come of these wretched health dramas. So, here’s a few of the things that aren’t so bad about being chronically ill.

Sometimes I Sound Really Smart
Without studying medicine, I’ve become a veritable expert in the field of specific prescription medications. I can tell you what hormones affect which areas of the body, and how the body responds to specific increases/decreases in insulin, thyroid function, and immune system function. If you ask, I can also rattle off a list of substitutes (and recipes) for special diets like wheat/gluten free, Lactose free, sugar free, and super-food-rich. I’m a one-stop shop for information on both traditional and natural medicine…within limits of course—I’m not going to be lecturing on brain surgery any time soon.

I Have an Genuine Excuse for Being a Picky Eater…but I Don’t Dramatise

Briiliance by Rachael Smith.

Brilliance by Rachael Smith.


I’ve worked in the hospitality industry for many years. I’ve made coffees, waited on tables, and catered for events, and there’s always that one customer that drives you crazy with their order. There’s the half-strength-caramel-shot-soy-mocha-latte-no-foam who also orders cake with a side of ice cream, but icing sugar, because “I’m watching my dairy and calorie intake”. Or the white-bread-crusts-off-no-butter-mayo-chicken-sandwich dude who’ll complain if he finds a crumb of crust left on it. Oh, and the bride who wants four mains options because she doesn’t know if she’s going to feel like fish, chicken, beef, or lamb at her wedding…but she only wants to pay for three. Seriously, these are real customers.
Because I’ve dealt with picky eaters, and because I love food (a little too much), I try not to mess with stuff too much when I go out to eat. I pick something that looks appetising, order it, and eat it. If I don’t like it, it was my bad choice. Now, though, there’s some things my body just won’t accept, and others that it only likes in certain amounts, or on certain days. I have a diva digestive system. So, if I go out for breakfast I’ll ask for gluten free bread, if I’m feeling over-dairied, I’ll have soy milk, or I’ll order the salad without red-onion, to avoid the inevitable headache. I won’t, however, make a big deal of it, or recreate a whole dish just to get what I want. And I certainly won’t complain about the extra cost. As much as it sucks, food speciality items are more expensive, you just have to suck it up.

I Appreciate Little Wins
We humans like to complain. We like to assume the world is against us, that others are inherently bad, and that life is out to get us. We don’t do this all the time, but it seems to be our more common way of thinking. We very easily look at the negative instead of the positive, especially when it comes to our bodies. How many times have you looked in the mirror and thought “Ugh! My arse looks huge” or “why did I have to have a pimple today“, as if tomorrow would have been any better a day to have Mt Vesuvius on your nose.
I’m just as bad as everyone else. I hate that I now have adult acne and struggle even more with my weight thanks to the PCOS. I get frustrated when silly things don’t work out as expected. But one of the things you learn very quickly when your whole body aches to some extent every day, is that those molehills are just that—molehills, not mountains. The negatives still bother me, but I try to focus so much more on the positives. I get excited over having enough energy to spend a whole day out and still being able to cook dinner, or being able to get to sleep within three hours of going to bed, or simply not waking up with a headache. These things are so much more important to my day than whether or not my cheek is covered in pimples, or my arms are looking especially flabby, because they make my day easier and happierSometimes this even means I can brighten someone else’s day in return, which I’d say is a pretty big win.

There you have it: three pretty great things that come from chronic illness. It’s hardly an exhaustive list, but maybe I’ll keep the rest up my sleeve and make this a regular feature.

Anyone else out there with chronic illness want to help with my list?

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NIIA Week: I Choose to Honour Small Moments

This week, for the most part, has been full of posts that are somewhat depressing. From me whining about my less-than-perfect days, to providing a realistic look into my mind, as a sufferer of chronic illness. So, I wanted to make sure today’s post was a little bit more uplifting. Not just because I’ve been such a Debbie Downer all week, but also because having an invisible illness doesn’t mean life sucks. In fact, I actually have my ME/CFS and PCOS to thank for a lot of the good things that have come my way over the last little while.

Had I not been in the throes of ME/CFS, and feeling completely miserable at the beginning of last year, I would probably have taken a dodgy job in fashion sales just to get some cash. Then I would have got lazy, and put my dreams to the side because it’s easier to work in a job you hate for lots of money, than to do something you love for no money at all. Instead, I tried my hand at my own business, and started waking up my creative muscles which, in turn, woke up my passion and heart.

Had I been well I would have stayed in Brisbane, even though I was sick of living in the city, and was missing the company of friends who had moved home again. I would be bugging Kaos, my one friend left in Brisbane, and spending most of my weekends driving back and forward to Toowoomba to visit family, friends, and my dog. Instead, I moved back home where I feel safe and loved, I reconnected with Wabi, Helva, and Miss Vodka, and I get sweet doggy kisses from Bonnie every single day.

Yes, many days the bad outweighs the good, the pain drowns out the joy, and the endless bills and stress make it hard to find the positives in this situation. But then a coffee outing with mum, or a lively “good morning” from Bonnie, or simply the look on a harried sales-assistant’s face, will remind me it’s not all so bad. So that’s what I’m going to focus on.

I could choose to focus on the nasty negatives, and all the hours I spend being sore or tired. But why would I want to channel my remaining energy into making myself feel worse. That’s what I’m going to choose to channel my energy towards the good. The small moments that bring a leap of joy. The ones that leave me with a wistful smile or a giggle of mirth. I’m going to relish the dinner parties with friends, the chance to bake the most delicious chocolate cake, and the time to perfect my double-crochets.

To hell with mulling over the morose, and wishing I’ d been dealt a better hand. I choose to honour small moments of joy, and push myself towards my amazing, re-imagined future.

NIAA Week - I choose to honour

What do you choose?

NIIA Week: Chronic Illness Cat

I was going to go to bed early tonight, then I couldn’t sleep. Luckily, I decided to waste some hours online, and came across Chronic Illness Cat:

 

If you know anyone with a chronic illness, share this with them. I guarantee you’ll see them crack a few smiles, both of joy and of chagrin.

NIIA Week: The Spoon Theory

I came across Christine Miserandino’s Spoon Theory about five years ago, right around the time my friend, Wabi, was diagnosed with Crohn’s Disease and Ankylosing Spondylitis. I stumbled across it late one night while trying to better understand what these strange diseases meant for my friend. I cried. I cried for Christine, for my friend, and for everyone else I’ve known who has ever suffered from an illness—invisible all otherwise.

When I was diagnosed with ME/CFS late last year, I immediately went back to the Spoon Theory as a way to explain to my parents how I felt. Christine originally concocted the Spoon Theory as a way to explain her daily life to her best friend, as a sufferer of Lupus. The great thing is though, the Spoon Theory perfectly explains how most people with chronic illnesses have to look at their day. It’s about limitations, planning, and trade-offs. It’s about all the things that healthy, young, busy people don’t have to think about.

If you’ve got friends, family, or colleagues with a chronic illness. If you yourself have one—invisible or otherwise—read the Spoon Theory, check out But You Don’t Look Sick, share Christine’s story with your friends and family. I’m not promising it will work for everyone, but I know it will hit home with a lot of people, and maybe help them get where you’re coming from a bit more.

NIIA Week: CFS Acid-Wall

Suitably, today was a perfect example of a typical ME/CFS overdoing-it day. I spent the morning and most of the afternoon running around doing errands, and cleaning the house I’ve been house-sitting. After a week of very little sleep, I was exhausted and knew I shouldn’t go to work, bit I’ve missed so many shifts the last few weeks, I pushed myself to go anyway.

I was there all of ten minutes when the acid-wall hit. Nope, I’m not taking acid, but I think I have the feeling down pat. See, when I get really tired I got through three stages. The first is delirium, where everything is funny and nothing I say makes sense. Then I start to feel like every bone and muscle in my body is made of cement, and everything becomes a series of counting-and-breathing to get anywhere. This is the stage I usually give in at because it starts to take longer and longer to get things. If I make it past this point the acid wall sets it. My skin starts to crawl and itch, my blood starts to race, and my mind begins to move both way too fast and way too slow at the same time. Suddenly I start sweating, the room starts to rock like a boat, and I can’t focus my eyes so everything becomes blurred and spinning. I can’t function for long at this stage, and eventually have to at least sit down before I fall over or pass out.

When I reached the acid-wall today I tried to push through it, and succeeded for about twenty minutes before giving up and going home. I walked in the door, went straight to bed, and slept the sleep of ages for five hours. Now the acid-wall hangover has set in and I feel spacey and achy and frustrated with myself, because it’s my own fault. Sometimes I forget to slow down, and then I pay the price. A great CFS lesson I still haven’t learnt from…

 

NIIA Week: 30 Things

So, generally I hate memes. They’re tacky, time-consuming, and usually pretty superficial. But what I love about the 30 Things meme is that it genuinely gives an insight to what’s going on in the head of someone with an illness. It allows me to sum up my average day succinctly without coming across as whiny, or over-dramatic. I’ve printed a copy of this out to give to my parents and brother, in the hopes it will help them understand a bit better how I feel from day to day.

If you’ve got a chronic illness—invisible or otherwise—go get the 30 Things meme here, and give it to your friends as well. Who know, it might be the lightbulb moment for someone you know.

1. The illness I live with is: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Polycistic Ovary Syndrome (PCOS)
2. I was diagnosed with it in the year: 2012 and 2013 respectively
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: Slowing down. I’m so used to being able to fit twenty-five hours into a day. And having to plan my day around rest periods so I don’t end up spending the next three days in bed.
5. Most people assume: That I’m just fat and lazy. This used to really bother me, because I had no reason to deny it. I’ve had five different doctors and two specialist tell me that everything will get better if I just lose weight, never mind the fact that at the time I was swimming 2km almost daily and eating a vegen diet of veges and lentils. The laziness bothers me mostly at work. I regularly end up ringing in sick because of an hormone-induced migraine or just severe pain, and can tell by the tone and the looks I get the following day that it’s getting old very quickly.
6. The hardest part about mornings are: Waking up, and then getting up. keeping my eyes open is like holding back a tidal wave some mornings, and if I get past the initial waking I then have to wake my body. I spend a good half-hour of a morning lying in bed stretching and begging my muscles to loosen and allow me to stand. Oh and the morning sensitivity—light, sound, and smells are magnified beyond painful.
7. My favorite medical TV show is: I don’t watch any really. Unless we’re counting House.
8. A gadget I couldn’t live without is: My Laptop and phone. They keep me company at 3am when I can’t sleep…I know, super bad habit.
9. The hardest part about nights are: Getting to sleep. I no longer have that hazy period between awake and asleep where you can slowly feel yourself drifting into unconsciousness. I’m also incredibly sensitive to noise and light, and have constant itches and muscle twitches at night, which make it really hard to relax enough to sleep.
10. Each day I take 9 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: love the idea of them but really struggle to be able to afford them. I try to go to the chiropractor once a month, and have had some really great success with Kinesiology. I attempt yoga at home when I’m feeling adventurous and would love to try acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: Visible for sure. While I definitely have a number of visible symptoms, they present as basic human traits (weight, acne, dry skin), so nobody really pays them much attention. The rest…well, it’s really hard to explain just how much someone tapping you gently on the should hurts without coming across as a sook.
13. Regarding working and career: My initial though was “what career?” But, in truth, the one thing I can be thankful for is that not being able to do the regular work I used to do has made me focus more on more creative endeavours, which has inspired more passion in me than anything I’d dreamed of doing five years ago.
14. People would be surprised to know: I still doubt my diagnosis sometimes. On days when I get sceptical looks, or my brother makes a comment about me not doing anything, I wonder if maybe I am just being lazy and pathetic. I have to remind myself weekly that this is not my fault, and that some days I do have the right to have three power naps before lunch.
15. The hardest thing to accept about my new reality has been: Two-fold. Accepting that I can’t do things at the pace I used to do them is still hard. Because I move slower I underestimate how long it takes to complete something and always end up late. I’m also stuck with knowing that I’m on a fast road to diabetes and, on a purely egotistical level, I’ll probably never get below 70kg.
16. Something I never thought I could do with my illness that I did was: Get my dad to understand. I know he’s not completely there, but he has days where I see genuine concern and caring. That means so much to me.
17. The commercials about my illness: What commercials? If we’re talking public service announcements, there’s pretty much none in Australia, save a really pathetic brochure I found at a counsellor’s office.
18. Something I really miss doing since I was diagnosed is: really pushing myself in exercise. I’ve gone from swimming 2km without a break to barely being getting through 200m without wheezing. Oh! And going to live gigs. The spaces that I love is so cramped and airless I start to sweat and get really dizzy.
19. It was really hard to have to give up: Dairy, wheat, and sugar. I can’t process dairy properly anymore, and my symptoms flare up if I eat gluten or sugar. I haven’t given anything up completely, but pasta, bread, and milk are now treats rather than daily diet staples.
20. A new hobby I have taken up since my diagnosis is: Sewing and crocheting. Well, not so much taken up, as found a renewed love for.
21. If I could have one day of feeling normal again I would: Go bush-walking, have a milkshake, and see a live gig at a dingy back-alley club! I’d spend the day at the beach with friends, or go out dancing without worrying about being breathless five minutes in.
22. My illness has taught me: to listen to my body more, and say no when things become too much.
23. Want to know a secret? One thing people say that gets under my skin is: it’s a toss-up between “I’m so tired! I only had six hours sleep last night”, and “Ugh! I know how you feel, I went to the gym last night and now my legs are killing me”. I’ve had six hours sleep in the past three days, and I’d give anything to feel the satisfying post-exercise muscle-stiffness rather than the bone-aching tenderness I have right now.
24. But I love it when people: Bend down to pick things up for me. My hips and lower back scream when I bend down, and my head starts to spin, so any time I can avoid it I do.
25. My favorite motto, scripture, quote that gets me through tough times is: 

26. When someone is diagnosed I’d like to tell them: That this is a good thing. You have a reason, now you can find a solution. And that there are people who understand.
27. Something that has surprised me about living with an illness is: How positive I can be. And how wonderful my friends are.
28. The nicest thing someone did for me when I wasn’t feeling well was: I had my gall bladder out last year, and my friends each bought me a gift because, as one friend put it, I was “having an operation, and might die”. And simply just being there, and listening to me when I need to vent.
29. I’m involved with Invisible Illness Week because: I think all illnesses, especially the lesser illnesses, deserve more of a spotlight. The only way to help those dealing with them is to bring them more into the public eye so everyone around us can understand better.
30. The fact that you read this list makes me feel: Heard. Understood. Hopeful.

NIIA Week: Michael’s Back!

This week in America it’s National Invisible Illness Awareness Week, which I’m shortening to NIAA Week, because I really don’t want to type that a thousand times. I did some research and it turns out that not only is NIAA Week reasonably new (starting in 2002), there is no Australian, or international equivalent—the Aussie sites simply link to the American one…so, I guess that kinda makes it international.

Anywho, as someone with two invisible illnesses (ME/CFS and PCOS), and a collection of friends who also have invisible illnesses, awareness is a pretty big deal for me. So this week is going to be dedicated to just that.

Tomorrow I’ll share more, but for tonight, the most exciting thing I’ve discovered today: Michael J Fox is coming back to TV Land! His new show, The Michael J Fox Show, which airs on NBC this fall in the US, is all about a guy with Parkinson’s Disease—the same chronic illness Fox suffers from. Now, technically Parkinson’s isn’t completely invisible, but it can certainly start that way. Either way, I’m just excited to see Fox back on TV! He’s always been one of my favourite actors, and has remained on my Top Three Celebs to Invite to Dinner list since I fell in love with Alex P Keaton as a kid.

If you’re as much as a fan as I am, check out the official trailer:

And check back during the week for more on Invisible (and generally lesser recognised) illnesses.