Jingle Jangle

Whatever you did, it worked. Your thoughts, requests, and prayers lifted the beast a little and on December 27th, I was given just enough space to let in the laughter and joy. Pain eased up and, just like that, I was smiling all day long and excited for what 2014 might bring. It didn’t last much more than a day or two, but that was enough. So, to all of you that commented or liked or sent a bit of changing energy out into the universe, THANK YOU! I was given some relief, some perspective and hope for the future.

AND I managed half an hour outside:

Bowie in the Boneyard in December

Bowie in the Boneyard in December

 

Now. Ready? This is why I am going to get better. If you do nothing else today, watch the first five minutes of this video of Glen Hansard playing in Dublin this past summer. And then, if you only have five minutes more, fast forward to the 15-minute mark. I first saw them (The Frames) play in a pub when I was, I think, 17 and spent the next few years going to every gig I could. 23 years later, his music still fills me with an achy, wistful, electric desire to live this short life to the fullest. I will be back in Dublin one day.

Use good speakers. Turn it up- as much as you can tolerate. Dance with your kid -or your dog. Me? I just lie back, close my eyes and jingle jangle my feet a little. And smile. Happy Sunday. 🙂

Calling All Angels

I’d give anything to have just enough life force to get out of bed and have a slow, quiet Christmas… eat a small, simple meal… listen to soft, festive music… have an easy, happy conversation… share genuine, memorable laughs… and watch my husband and sister open a few presents without my vision disappearing, my head exploding, my muscles collapsing, my speech slurring, my ears ringing, my brain swimming, my balance shifting…

This holiday season, please send some good thoughts out into the universe for those struck down by sickness… some healing vibes… some positive energy… some prayers for better days…

That’s all I want for Christmas. A massive outpouring of intention, electricity, hope, empathy. A showing of human solidarity so strong that the cosmos crackles with shared intensity… the dynamo hum of a hundred whispered desires – a potency so overwhelming that there is a subtle shift in the atmosphere… atoms vibrating and realigning… Until this huge chronic weight lifts ever so slightly and lets in some spaciousness, joy, and fortitude.

When I feel it, I’ll know it was you and I’ll reflect that energy back into the sky and pray that, maybe for a moment, everyone’s burden eased a little.

Happy/ Merry Christmas to you all. I miss you and think about all my friends, family and blog family daily. X

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Calling all angels,
walk me through this one,
don’t leave me alone.

Reblogged from THE-LABYRINTH: Now, Imagine How This Feels…

Now, Imagine How This Feels…

3 DECEMBER, 2013 BY  7 COMMENTS

Imagine that it’s Tuesday, the one day a week where I am lucky enough to attend an Advanced Nonfiction class at Victoria University (VU), and I’m psyched! I don’t have to worry about air-borne fragrances or solvent-based particles from spray deodorants or solvent-fragrance based hairsprays contaminating the classroom air. I don’t have to worry about having to leave the class due to symptoms bought on by breathing in fragrances that other students may have used. I don’t have to worry about the molecules of these toxins sticking to my hair and clothes, making me sicker later on. And I don’t have to worry about sitting in class while wearing my mask and not even knowing if there are solvent or fragrance chemicals emitting from other students into the air of the room (My sense of smell is virtually blindfolded by the 3M mask that I sometimes have to wear to protect my health… If it wasn’t impeding on the ability of my olfactory sense, then sure, I’d be able to breathe it in and smell it, thus warning myself, but not before getting chronically ill. Sometimes for days.).

Me wearing a 3M mask to protect my airways from chemicals

*What a Fashion Accessory*

(Just so we are clear, you know it’s breathing in these chemicals that cause symptoms, not the actual ‘smell’, yes? Of course you do! Silly me for even asking that. Next time, I’ll ask it rhetorically.)

Imagine being chemically sensitive to solvents, fragrance chemicals and the petrochemicals used as ingredients during the manufacture of designer fragrances, the el-cheapo imitations, and in popular deodorants (like Lynx, and Mum), and  getting to go into class each week, safe in the knowledge that (retrospectively) 94% of the time)) people will have made the effort to go free of these products? (Sure the air may smell of scents, due to shampoos, conditioners and roll-on deodorants; and it may even be floating with notes of patchouli and jasmine from products containing essential oils because in our requests to get people to go fragrance free it has been explicitly expressed that it’s preferable for them to use products that contain natural ingredients. I know this is not an ideal situation for some chemically sensitive people but for me, it totally was! An essential oil could never impact on my health in the same way as a spray on fragrance can.)

Fragrance: Designer or Fake; it's still Toxic

Fragrance: Designer or Fake; it’s still Toxic

Imagine that there is a notice in the Student Handbook explaining that some students are sensitive to chemicals and that there are some classes where people will be reminded to be ‘mindful’ of certain chemical-based products.

Imagine the teacher sending out an email the day before to remind the rest of the class to consider my need to breathe air unhindered? Sure, I could wear my mask for the whole class but as many chemically sensitive and immune compromised people know, there are a few problems with this: firstly, the lack of oxygen is not conducive to learning, thinking or contributing to discussion; secondly, there is the limited ability to show facial expressions, therefore, causing a hindrance in communication (not for everyone, a few people, mostly teachers, see past the mask and talk to me as if I am the same as everyone else); thirdly, and most importantly, it can be dangerous in that if there is a lot of fragrance in the room, it then gets on my hair, skin and clothes, and sometimes into the tear ducts of my eyes, but additional to that, if I sit in the room for the whole class, then leave and remove my mask, I become chronically ill due to solvents, petrochemicals and fragrance chemicals being all over me and in my airways. And lastly, what some of you may not know, and I’ve only just recently found this out from the Disability Discrimination Legal Service (DDLS) myself, is that wearing the mask is actually a forced impediment! I have a right to go to class and not wear a mask, just like everyone else. That’s on top of the law that states that it’s Indirect Discrimination to not be able to access the class (or any other area where people have equal access) due to air-borne fragrances.

Imagine the cleaning staff changing to using fragrance free products in the buildings that I use. (Perfume-free Library room and building 10.) And that they are doing this with the intention to change to using fragrance free products in the rest of the university when the other products run out. (Their theory behind this: the chance of fragrance free products impacting on other students health is almost none, the chance of fragrance chemicals impacting on more students health is higher.

Imagine they do the same with the hand soap in the toilets. (You see even if a student comes to school fragrance free, they won’t stay that way if they wash their hands in the bathroom unless the soap they use is fragrance free.)

(Note: Staff at VU have worked every corner of the boxing ring to accommodate and include me in the classes and lectures; and I’ve never had to use the ‘discrimination’ card to force them to fit me in. (I do know that they’ve injected the word ‘discrimination’ right into the main vein of bureaucracy via communications between various departments. All in the name of making shit happen! It’s like they know that I belong there. I really feel like that! Okay, there was this one teacher… but I’m not going to go there, today. This post is about being thankful!)

Imagine how I felt as I went to class, attending to my studies just like everyone else? At times I felt a tad guilty about the trouble people were going too. But do you know what I found? That speaking out about fragrance chemicals and their effects, gives others permission to do the same. No one wants to be a troublemaker. No one wants to complain—or seem to be complaining—about what products people use. No one wants to be seen to be different (for the wrong reasons).

Towards the middle of the last semester, a text went out asking people to be mindful about all staff and students who suffer health problems from these products. And it said that all classes are fragrance free!

I’ve already expressed how much I feel like I belong in this particular learning institution. So much, that I feel as if my experience and my illness have taught others; but more even more so, it’s taught me that that anxiety I feel in the pit of my stomach right before I speak up about the ‘fragrance issue’, that anxiety is a tool. A tool that I can tap into to help facilitate a positive outcome—for me, and/or for others. It could also be a tool that I use to run, hide, squirrel myself into isolation. But no, I use this ‘anxiety’ to spur me on…

Imagine going to class each week and finding that that anxiety has faded into the background. Sometimes mildly humming  back there, ready to remind me to remind people of the boundaries. Imagine it just hangs out on the peripheral of my attention, letting me focus on my studies, 100 percent.

Imagine going to class each week and finding—knowing that there is an air-purifier in the room that a teacher or security staff member has kindly, turned on an hour previously. Imagine that Victoria University Disability Services (VUDS) decide to put the air-purifier onto a timer, just to make sure it goes on at the right time.

Blue Air Purifier Supplied by VUDS

Blue Air Purifier Supplied by VUDS

Now, imagine they put a sign on the classroom door, reminding others that the room is fragrance free and that toxic chemicals contained in personal care products can and do cause and exacerbate symptoms in people who have asthma, chemical sensitivities and those who have immune disorders, and to please refrain from wearing them? Imagine they source that sign themselves, via the Allergy, Environmental Sensitivity and Support Research Association (AESSRA) website, printing and laminating it, placing it up around the building: in the main office and the two low-toxic classrooms.

The Classroom Door with Signs Attached

The Classroom Door with Signs Attached

Imagine that the Professional Writing and Editing Coordinator, along with my help, drafts up a bullet point list of reasons why students could refrain from wearing certain products; what happens to me if I breathe them in (in the short term) and what happens to me if I breathe them in (over the long term); what they could use instead; and of what benefit it would be to them and others if they could do that.

Imagine how validating that would feel…

Imagine VUDs loans out an iPad to me so that I can minimise my exposure to breathing in petrochemicals from the inks in books and on pages. Imagine the possibilities for utilising this as a learning tool? I can take photos of the notes on the board. And I can use it to photograph documents like class room handouts. This way I don’t have to air them later; or curse when the wind blows them away or they get rained on while out airing. OMG, and the books! And the newspapers I can read on it!!!

Imagine one of my amazing teachers goes to the trouble of putting printed material behind plastic for me?

I know, it’s probably a dream, yes?

No, it’s reality.

(And can I just point out that lately my health has been impacted less by printed ink? It’s been a few months since I opened the mail, breathing in ink fumes that are so toxic to my system that just the exposure to the petrochemicals wipes me out for the rest of the day. I still air my mail. Still take precautions. But I’m not suffering such intense symptoms with printed material. (Glossy magazines. Not so lucky. Massive headaches. Small steps, small steps… I’ll get out of here!)

Now, imagine that it’s the end of the last Semester and that I’m two subjects away from owning my Diploma in Professional Writing and Editing. Owning. My. Diploma. Me? Imagine the buzz radiating within. How awesome would that be?

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Now imagine that the weekly email that goes out to the students before classes no longer asks people to remember to accommodate me, Michellina van Loder. No, it asks that students to please refrain from wearing chemicals so VU can accommodate all the students who suffer with this problem…

Imagine that all the anxiety and fear that’s been eating away at me as I collaborate with people to get my needs met, imagine it’s all been worth it. Imagine that it gave others permission to speak up. Others who suffer asthma, headaches, allergies and many conditions that flare when the person is forced to breathe in fragrance chemicals for hours on end.

Imagine this, my reality…

You see for me, this is a really lucky thing, for I don’t have a great support network of friends and family who will go fragrance free for me. Some will go without it for a visit or two. But these people are never really fragrance free because using fragrance is a daily thing for them. It gets into every piece of clothing or furniture they own. It’s in their cars. It’s everywhere, so even when they try, it’s still a problem. (I’m grateful for the few who don’t wear it, won’t wear it.)

So this sense of belonging I feel when it comes to attending classes and being a part of VU, it’s an important and valid part of my identity: a student, a writer, a poet, a professional blogger. It’s all wrapped up, right there!

Fragrance is the opposite of a social lubricant; it’s an emollient that rusts away, seizing up all working parts until things are just fucked. And each time you have a discussion with someone who doesn’t want to go without wearing fragrance, the talking—however gentle the persuasion is—causes friction over time. And that there, the resistance, is the rusty beginning of a solid relationship turning into a wasteland of broken hearts and hurt feelings.

But it’s really great that I have this, and I’m so grateful to the staff and students at VU who are up to speed on this issue. Now, we just need the rest of the Australia to catch up!

My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

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Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

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My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

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This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

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Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

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Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

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Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

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I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

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Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. 😉

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Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

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BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. 🙂

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My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

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What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

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My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

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Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

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Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!

Thanks for taking the tour! And thanks to Patrick at Quixotic for giving me this idea.

Over to you: What has changed in your life since you became sick?

Title Credit

Throwback Thursday: Autoimmune Thyroid Disease

I have had an itch under my jaw, deep in the tissue of my neck for years. In 2009, I decided to mention it to a doctor one day and, although she didn’t feel anything abnormal in the area of the itch, she did casually say, “You do have a lump on your thyroid, though.” I had a thyroid nuclear test done and a radioactive iodine uptake test which showed two toxic multinodular goiters.”Toxic”, meaning thyroid hormone was being produced at an increased rate, which is why my thyroid stimulating hormone (TSH) tested so low. “Multinodular” because it was a late-stage goiter, meaning it had been around for a while and had a chance to grow and become lumpy. In my case, I had been hyperthyroid for at least 7 years ~ my first abnormal TSH result was in 2002, but my doctors never pursued it and I didn’t know enough to insist.

This was my first experience with specialists. I had only ever dealt with general practitioners and emergency room doctors. The research doctors that diagnosed me were bizarre. They came into the room and peered at me like I was a specimen, their faces frozen into pensive seriousness. I started cracking jokes to break the tension, but they didn’t respond in kind. They asked me questions with long quiet pauses in between, during which they would look at each other and mumble and nod: Do you have flushing? Are you intolerant to heat? Do you shake? Stick out your tongue. Hold out your hand. Have you experienced any anxiety symptoms?  I finally stopped them and asked what they had found ~ they had told me nothing! Do I have cancer? No. Do I need surgery? No. Okay, now you can ask me more questions.

I had to do both nuclear medicine tests twice because too much time elapsed from my first round of testing to go forward with treatment ~ radioiodine ablation. After you have radiation treatment, you must stay away from people and animals for a few weeks, use different cutlery, use a different toilet and/or flush twice. It seemed like a big decision, but the doctors told me it was a terminal problem. I’ll never forget that. They said there wasn’t a very long life expectancy for people with untreated hyperthyroidism. Huh? Seriously? I didn’t seem to have a choice. So, I did it. I killed the whole thyroid and started taking hormones every day for the rest of my life. I never missed a day of work through this experience. During the segregation weeks, I holed up in the restaurant office, alone. I remember encountering a pregnant lady on my way to the rarely-used toilet in the basement and leaping back out of her space as if I’d been electrocuted… high-tailing back into the office so she wouldn’t be exposed to radiation. What must she have thought? 😉

Interestingly, I never felt like the symptoms abated. The flushing and hot flashes (my most visible symptoms, which I chalked up to oddly increasing self-consciousness) and the anxiety (which I blamed on my job) ebbed a little, but not much. And, of course, this was undoubtedly part of the priming of my body for ME. Hyperthyroidism and my anaphylactic episodes started about the same time. It was the beginning of the end.

Below are the photos and email that I sent to friends and family back then, hoping that it might open someone’s eyes to thyroid problems or make them listen a little bit more to their bodies. The fact that I thought I was having “devastating” and “debilitating” symptoms then strikes me as funny now… and sad. What was happening to my body because of my thyroid problems was NOTHING compared to what is happening to my body with M.E. They’re not even on the same planet … in the same universe. Can’t I go back to my old serious  health problems?

I have attached 3 pictures that I took before I got radiation treatment (ablation). The first is looking at my neck as I stand relaxed, the next is with my head back and the third was taken as I swallowed. I can’t believe I never noticed the lump on my thyroid. I can’t believe nobody else did. I can’t believe, with 7+ years of abnormal TSH (thyroid stimulating hormone) levels, neither a doctor nor I, myself, looked any closer at my neck or my symptoms.  [The radioiodine must have swelled my thyroid, however there was definitely a visible lump before treatment that I never noticed until it was pointed out -and it is unforgivable that no doctor ever took the time to look further into my bloodwork or palpate my throat.]

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Head straight on.

So, I guess I’m hoping this email influences everyone to pay closer attention to their bodies. Look closer: know every line and lump so you’ll recognise changes. Listen closer: if your body is constantly telling you it’s way too hot or way too cold or way too tired or way too hungry, don’t ignore it. Don’t wait for a doctor to find out what’s wrong with you ~ question everything that feels wrong.

It turns out I wasn’t overheated & flushing because I’d become suddenly self-conscious. It turns out I didn’t just “get lucky” with an amazing metabolism. I wasn’t having floods of anxiety that caused my heart to race & skip beats because my job was stressful. I wasn’t debilitatingly exhausted because I worked too much & didn’t sleep enough. Well, at least not entirely.

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Head tilted back.

It’s still going to be a long road ~ my doctors say we could be tweaking my medication for years. I still vacillate between feeling ok and feeling dizzy and wasted… I eat about half what I used to… I’ll have to take hormones forever…. But, it’s not out of the question to go to a movie after a day’s work and I don’t spend my weekends crumpled in a ball, sobbing, asking what’s wrong with me while my husband wonders what to say….

I’m angry that I spent so long feeling that way and just explaining it away. I hope this inspires everyone to take a minute to think about your body and your quality of life. It’s all too short! Take care of yourselves!

swallow

Swallowing.