Help Fi Be Chem-Free
In 2012 I was pursuing careers in the arts and education. I had recorded and released several albums of my own songs, sold my first novella to a pro-level publisher, and was preparing to start an MFA program that would enable me to take my writing and teaching career to the next level.
Then a chemical exposure at my day job left me with Chronic Fatigue Syndrome (CFS) and Multiple Chemical Sensitivities (MCS). I became unable to work and have lost my home and savings while fighting for compensation and learning to manage these chronic and incurable conditions. The legal fees for the compensation battle have totalled over $35,000 so far and continue to add up. In addition to that expense, I now need special transportation and housing to accommodate my health conditions. I’ve had to buy a car and a walker to get to medical appointments and take care of necessities. CFS keeps me housebound much of the time, but new materials, carpets, paint, particleboard, melamine, and other substances found in most living environments worsen my MCS symptoms; consequently, I’ve had to move 9 times in the past 4 years. I now rent a basement apartment and must keep my windows closed to avoid cleaning chemicals, perfumes, cigarette smoke, exhaust, and paint, laundry and other fumes from neighbours. Living this way is stressful, harmful, and ultimately, unsustainable.
MCS and CFS are severely debilitating and wreak havoc on people’s lives, but I am determined to rebuild mine. Those who know me know that I’m up for a challenge. I’ve always prided myself on being independent, but since all this began I’ve learned that I can’t do this alone. I need your help. In order to continue pursuing compensation and acquire appropriate housing, I need to raise at least $50,000. That’s a big ask, I know. But if everyone donates something—anything—and passes this information on to others, I believe it can happen.
We all need a safe place where we can breathe. Because of a workplace incident, I have lost that. Your donation will help provide me with resources to continue pursuing compensation, a secure and healthy haven in a chemically-saturated world, and a foundation upon which I can rebuild and live the best life possible with CFS and MCS, and eventually help others with these conditions.
Although I think of myself as a writer, I find it near impossible to express how much your support means to me. I give you whole bunches of thanks, a standing (chem-free! :-) invitation to visit my future home, and my deepest gratitude, Fiona
Thanks to everyone who has donated and shared info about this fundraiser so far. You’ve helped raise $1,480 to date! Your donations and your wonderful messages mean more to me than I can say.
What if you only had a total of 3 hours each day to get done what you needed to do?
What if running for two minutes to catch the bus caused your body to shut down for two weeks?
What if watching tv for two hours on Sunday night made your brain so foggy you couldn’t carry on a conversation with a co-worker on Monday morning?
Welcome to life with Chronic Fatigue Syndrome (CFS)!
CFS is a chronic illness that impairs both mind and body. Basically, the body loses its ability to generate and regenerate energy properly, which means that if you do too much, too fast, for too long, your body kind of shuts down and makes it impossible for you to do anything. This is called “crashing”, and it looks something like this: your limbs may feel too heavy to lift, like they are made of concrete, you may feel feverish and/or have chills, you may ache all over, your muscles and joints may feel inflamed, you may feel severe pain, your skin may even hurt, and you may experience cognitive impairments like brain fog, inability to concentrate, hindered word retrieval, short-term memory loss, problems with reading comprehension, problems keeping up with conversations, remembering what you are doing or saying, etc. There are more symptoms, but those are the biggees, for me, anyway. A crash can last for weeks or months. For single folks like me, it can be especially difficult to get out of a crash, because we have to manage our lives somehow, feed ourselves, pay bills, etc. It’s not uncommon for folks with CFS to get trapped in a crash cycle, in which you start to feel a bit better so you get out of bed to do your dishes or pay some bills, and you may inadvertently do a little too much, and then your body shuts down all over again.
After a crash, it usually takes weeks to months to build your energy back up again to whatever your CFS-caused limit is. My limit is about 3 hours. Yep, so instead of waking up after 8 hours of sleep and then being active for 16 hours, I can be active for a total of about 3 hours per day. And I have to break that time up, with rests in between. THREE hours per day.
Imagine what you would do with only 3 hours a day!
And imagine what you couldn’t do if you only had 3 hours a day!
(Now you know why I so rarely get on Facebook, eh?)
And “active” is a relative term. I can’t run long-distance anymore, much less around the block, I can’t hike or do any of the other athletic activities I used to do before CFS, or else I crash. I can only walk for a few minutes at a time, and I have to keep my heart rate fairly low, or else—you guessed it—I crash.
So, as you can imagine, living with CFS requires a lot of prioritizing and planning, and a lot of humility, for sure enough, you may plan to do something one day, but despite your plan, and despite your strength of will to make it happen, CFS may have other plans for you.
I hope these updates give you a glimpse of what my life and these conditions are like, so when you donate or tell friends about this fundraiser, you know what it’s all about.
Thanks, as always, to everyone who has been helping me put together updates, run this campaign, and learn Facebook. None of this would be happening without you! And thanks again to everyone for donating and for continuing to share info about this fundraiser. I appreciate your love and support. Best, Fiona
Thanks to everyone who has donated and shared info about this fundraiser so far. You’ve helped raise $1220 to date! I’m very grateful for that support and for your wonderful messages.
Some have said that I look awesome in my gofundme page photo, so awesome that I seem too healthy, too capable, and/or too well-to-do to be in dire financial straits. Well, you’re right.
And you’re wrong.
I chose that photo with Chloe the dog particularly because I’m vertical and my eyes are open, (and Chloe looks great, and hey, while I’m at it, so does my thrift store Sunday best!) Sure, I could’ve picked a photo showing such large bags under my eyes that I look 40 years older, or a photo of me lying corpse-like in bed, the pain I endure on a daily basis clearly evident, but when it comes right down to it, a babe wants to look good for her own fundraiser, right?
There’s an issue here regarding appearances. They can be mighty misleading. My illness is invisible. You can’t see cognitive impairment or chronic pain; you can’t see brain fog, migraine, tachycardia, or nausea (unless I lose my lunch at the doctor’s office). There is no scar from surgery, no wheelchair to lend authenticity. I can’t tell you how many times someone has said to me, “Well, you don’t look sick,” while everything seems upside-down, my limbs feel like concrete blocks, and I’m in so much pain I can barely manage a smile.
Most people with CFS, MCS, or Fibromyalgia will tell you the same thing: our conditions are invisible and relatively unknown, and people generally don’t see or understand them. And the longer we are sick, the less people tend to see because—let’s face it—ongoing, incurable illness isn’t a wild joyride. Most people want to live their lives, not be burdened by folks who can’t go lots of places or do lots of stuff. Losing friends, your social life, your job, your lifestyle and activities—these are realities for many people with these illnesses. Enduring all that loss, plus having to isolate myself from MCS triggers so much of the time means I wind up spending a lot of time alone. (At one point, I began to feel invisible too. And there be monsters!)
I’m not telling you this for a pity party—no one wants that—just to help give you a glimpse of what my life and these conditions are like, so when you donate or tell friends about this fundraiser, you know what it’s all about.
Next update: Demystifying Chronic Fatigue Syndrome!
Thanks to everyone who has been helping me put together updates, run this campaign, and learn Facebook. None of this would be happening without you! And thanks again to everyone for donating and for continuing to share info about this fundraiser. I appreciate your love and support. Best, Fiona
Thanks to everyone who has donated and shared info about this fundraiser so far. You’ve helped raise $675 in the first week -- we’re on our way! I’m grateful for your support, both emotional and financial.
There have been lots of questions about my relatively unknown conditions (and the dog in the photo) so I thought I’d give you some info in each weekly update.
First of all, that’s not my dog. (But isn’t she lovely? And if you guessed Bernese mountain dog, you are right!) When I first got sick, Chloe (the dog) lived nearby and often kept me company, but I had to move to escape MCS-triggers in my home and she couldn't visit anymore. (Now I have a feline companion of my own.)
Some of you have asked how I can be so close to a big hairy dog like Chloe when I have MCS. I’m glad you asked! MCS can be fairly misunderstood. And while MCS can sometimes manifest in ways that look like allergies (you know – stuff like hay fever, runny nose, burning eyes, scratchy throat), MCS isn’t an allergy. So, even though many people may have an allergic reaction to dog dander, it’s not considered a trigger of MCS symptoms. Instead, dog dander is just a common allergen.
So then, what triggers MCS? I’m glad you asked! Common MCS triggers tend to be stuff like perfumes/colognes, clothing laundered in scented detergent or fabric softeners, brand new plastic products, melamine or particle board, laminate flooring or carpets, smoke, exhaust, chemical fumes, and more. As you can imagine, these triggers are everywhere, which can make day-to-day life mighty challenging.
MCS symptoms can look and feel different from allergic reactions too, and can be very strong—including severe migraines and nausea, dizziness, eczema, and coughing fits. MCS can lay you flat for days, and you have to seek a chemical-free zone to recover. Also, it’s important to note that MCS triggers and symptoms can vary from person to person.
Next week, I’ll talk about invisible illnesses and how they can make you feel invisible! Thanks again to everyone for donating and for continuing to share info about this fundraiser. I appreciate your love and support.