Writing is all I've ever wanted to do.....
What do you want to be when you grow up? How many times were we asked that as kids? Most children usually give a different answer each time as their interests change and evolve with age, but not me. All I've ever wanted to be was a writer. Ever since my grandmother first told me it was possible, all those years ago, as she handed me a worn copy of Little Women, and I read all about Jo March and her resolve to be a writer herself.
I've spent the last decade pursuing a career as a writer. I covered music, books, conducted interviews, wrote for faith magazines and blogs, anything to get my foot in the door and better myself as a writer. I worked to hone my craft throughout these last ten years. I learned from authors that I admired, many of whom I call friends today. There are several people who have been so incredibly encouraging and helpful to me almost from the start. The ones I would often bounce ideas off of and send them my work to critique. The ones whom I've had the privilege of working with on their own books, watching the process from a front row seat. I'm immeasurably grateful for those authors.
I was finally catching my stride. I felt as though I had a good deal of experience under my belt and was ready to finally attempt what I've always wanted to do... I started writing my first book in late 2018. I was chugging along, chapter after chapter...... You see, I had a passion for this project, yes, but it also meant so much more than making a dream come true. It meant being able to hold an accomplishment in my hands and to show everyone who has ever had doubts about me and my future that I really knew what I was doing.
I know so many people close to me have had major doubts about the decisions I've made for my life so far. They've humored me to my face, but I've heard the whispers and I've seen the doubt in their faces. They watch my siblings lead more practical lives, working more practical jobs, and then they turn to me and I know they see me as a failure they have to explain to other people. "Oh her?.. Yeah well.. she's just... well I guess she's...." I know.
I've always swallowed those doubts and just kept plugging away. I'd tell myself that they'll see one of these days. I'll prove myself and show them that I know what I'm doing, I know what I want in this life, and I'll get it, just you wait and see. One of these days, I'm going to have something tangible that will show them that all the work and time I've put into the last 10 years hasn't been wasted. I would admit, life has dealt me a few hard blows, mainly health-wise, over the last decade, but I wasn't going to let that stop me.... Little did I know the biggest blow had yet to come.
2019 was the year that changed everything for me. I found myself more and more sensitive to light and sound. At first, this symptom was blamed on the Lyme disease that I had for most of the year..... but it wasn't the Lyme. Hypersensitivity/Sensory overload is a symptom of Fibromyalgia. It means that my brain overload easily. I found myself becoming more and more sensitive to lights and sounds as the months went on, to the point where I couldn't bear to look at a screen. My brain has all it can do to get through the basics of everyday life without overloading these days.
I also noticed difficulty with memory and general cognitive function. I was having increasing difficulty with words and particularly taking what was in my mind and getting it down on paper/typed up on the screen. Obviously this is a rather large part of writing. I found myself growing more frustrated with my deteriorating abilities. I'd read pieces I had written prior to 2018 and I could see a stark contrast to the quality of the writing. It just wasn't there anymore, no matter how hard I tried.
There's nothing scarier for a writer than realizing that your brain is no longer functioning up to par, except realizing that maybe everyone was right after all. Did I just waste the last ten years of my life on something I can longer do? I'm a decade older and what do I have to show for it now? A brain deteriorating? It seems so incredibly cruel of life to give someone a passion and to allow them to pursue that passion for a decade, only to just take it away. I've always said throughout these last seven years that I can deal with the pain, the illnesses, and the fatigue. I can deal with all of it, as long as I have a functioning mind. It's my only strength. But now....
What do you do when the only thing you were ever good at is taken away? What happens when you suddenly find yourself standing on the smoldering ashes of a dream you'd been working towards for the last decade of your life? What do you do when you're staring failure in the face? Will I ever be able to write well again? I have no answers to any of those questions...
They tell me life will get better...... but I'm not sure of that either anymore.
What I am sure of is that I can't continue on this course. I'm taking this year to pursue health, first and foremost. I need to find a way to heal some of the bigger symptoms. I've achieved remission in the past, I hope to do so again. Maybe, just maybe, I'll write again, but I believe at that at this time, I also need to start exploring other options...... You'll have to forgive me, it seems I'm still finding my wings.
Seven years ago my life changed forever. I was seemingly sailing along smoothly, when all of a sudden my ship hit an iceberg, and while I'm still afloat, the sailing isn't near as smooth as it was before. I've had to learn to adapt to a whole different way of living, and believe me, it hasn't been easy. For seven years I suffered an unknown chronic illness, one that doctors didn't seem to be in any hurry to diagnose.
They're not sure how it all came about, there are theories, but I don't think we'll ever know for sure what caused it. Seven years ago, in the month of September, I was working in a barn when one fine day I started feeling lousy. It came on as a general malaise then quickly got worse. That first day, my boss came in, took one look at me, and told me that I "didn't look so good" and to feel free to take the next day off. I nodded as I left, fully intending to be back at work the next day. Surely it would pass...
I ended up bedridden for the better part of three months. I never did go back to that job. I spent those three months in and out of doctors offices and Emergency Rooms. They ran every test imaginable, several times. Bloods tests, scans, numerous doctors..... and it all added up to a big fat, "we have no idea what's wrong with you." Most doctors just sent me on my way, acting like it was all in my head, some more patronizing than the rest. Others admitted that they simply couldn't figure out what was wrong, their tests all came back "normal", so they sent me on my way for lack of answers.
One doctor explained it to me this way: They knew that my organs were in crisis, the problem was that they couldn't figure out why. The muscles in my neck were also severely tight. They had no answers for that either. Eventually, an ER doctor, as a last ditch effort, gave me a cocktail of pills hoping to combat most of the symptoms or at least knock them back. With prescriptions in hand, I went home. I took the pills and rested some more....
Right around the turn of the new year, I started to regain some strength and stamina. I was able to get up and move around, slowly. It took another 6 months to get to a fully functional, semi normal state... but there was nothing normal about what my body had gone through. I soon realized that "getting back to normal" wasn't an option anymore. Life had handed me a "new normal" and I had to learn how to stay afloat in uncharted water.
Ultimately, I had to reassess every aspect of my life and make a lot of changes, from what I put into my body and what I did physically with my body, to my sleep patterns and how I dealt with my emotions. Everything needed to be adjusted. I now had to contend with a load of symptoms that included chronic pain, chronic fatigue, IBS, and migraines. I admit, a beautiful positive that came from this big negative was the fact that I did get healthier, ironically enough. I started treating my body a lot better than I had, I ate better, and I also addressed emotions that had been buried deep within me. This unknown chronic illness forced me to address other issues that I had, like my anxiety, and to learn to listen to my body better.
Fast-forward to about three years into the journey. I still had no answers as to what this illness might be, except that it was chronic. Doctors gave me vague diagnosis's and answers. The word Autoimmune disease was floated around a few times, along with "chronic fatigue syndrome" and "chronic pain syndrome", but nothing solid. While I didn't have the answers I was looking for, I did manage to achieve a "remission" of sorts by following a healthy, strict regiment. I was healthy, active, and felt great for the first time in years. My first remission lasted a glorious five months. The next remission, which came the following year, lasted for seven months.
I had a few setbacks in 2018, probably due to stress, among other things. Then 2019 came. In February of 2019, I started going to a chiropractor at the suggestion of friends. It was there that I learned that I have osteoarthritis in my neck and spine, which can account for some of the pain. In March, I decided that I wanted to start hiking again, something I enjoyed prior to the illness, but stopped in recent years due to mobility issues. I picked an even grade on the mountain in back of my house, hoping to slowly work my way up to harder grades. By April, I was experiencing symptoms that I first attributed to a flare up of the illness...... until they worsened to the point where I was having passing out spells, could barely walk, and felt as though my heart couldn't keep up with the rest of me.
In May of 2019, I tested positive for Lyme Disease. I had Lyme for the majority of 2019, finally being "cleared" in September. I went through four or five rounds of high-powered antibiotics in the process. It took me a lot longer to recover from the Lyme than I had thought it would. On top of causing more damage to my body, it also caused a few setbacks in regards to the chronic illness. I also developed a severe sensitivity to light and sound. It is now very easy for my brain to experience a sensory overload. I'm still learning to deal with this new issue and work around it.*
In the Autumn of 2019, I finally received a breakthrough diagnosis. I have Fibromyalgia. That is the chronic illness that I have been dealing with for the last seven years (on top of arthritis). I now know what I'm up against and can now hone in on it with more specific treatments. Because Western Medicine can't do much for me, except prescribe pills with side-effects, I've turned to a more holistic approach. I'm still early in that journey, but will document it more as I go. This post is to give a fairly full account of the first seven years of the chronic illness journey, one in which I can now build off of with future posts. If by chronicling my chronic illness/Fibro journey, I can help even just one person, I'm glad to do it.
*For more details about my health issues in 2019 with the Lyme and such, you can read my catch-up post, and my "You Look Fine" post. Also, a future post will address the brain issues more fully for anyone interested.
“Well you look fine.” This is a statement I hear all too often, mainly from doctors, but also from people in general. When I tell them what I’m suffering from, what my symptoms are, this is their usual response, “well you look fine.” That may be so, but it doesn’t mean everything is fine. A house can be on fire inside, but look “fine” on the outside.
I went to a doctor recently after suffering for 2 months with a flare up of what I thought was my chronic illness. His first response was a snotty, “Well you look fine.” He was just going to send me on my way, but I insisted, so he begrudgingly ran an EKG and ordered blood tests. The EKG showed that my heart was running slower than it should be. The blood tests came back: Lyme Positive. Evidently I tested very high showing a severe case of it. But I “looked fine”.
I’ve been to countless doctors over the last 6 years. Scans, X-Rays, tests, etc... Complaining of chronic pain in my neck and shoulders, digestive issues, memory issues, joint pain, etc, and then the migraines started. All to no avail. They throw medicine at you to mask the symptoms but ultimately the word was “it’s all in your head” and “I don’t understand it, you look fine to me.”
As a last resort before the suggestion of injecting poison into my neck to kill the nerves to stop the pain, I went to a chiropractor. He had an X-Ray done before adjusting me as I have 2/3 bones fused together in my neck (since birth). That’s when he found it. Arthritis. I have Osteoarthritis in my neck. He was also the one to push me to get tested for Lyme.
I finally got a positive this time around.
For the last 6 years I have suffered from Chronic pain and illness. 24/7. To the point where someone recently asked me if I can remember a time I didn’t feel pain. I can tell you the year I didn’t feel pain, but I can’t remember what it actually feels like not to. The only thing all these doctors agree on is the fact that the pain will only get worse as I age. On a scale of 1-10, my pain level on a GOOD day is always a 5/6..... on a good day.
Today I found out that I have the beginnings of rheumatoid arthritis in my hands (and possibly other joints). On top of all this, I’ve had issues with my brain lately. It’s just not working at 100%. I’ve noticed more memory issues, functioning issues, etc. I’ve developed a severe sensitivity to light and sounds. I’ve become super sensitive to flashing/moving lights, fans movement, and sounds, to the point where my brain feels weird. My doctor said I’m in danger of seizures, but alas, he can’t do anything about it until I actually have one. His advice: Try not to have one.
My chiropractor is the only doctor who I feel has actually helped me. He helps me with pain management, always willing to try new techniques, see me more often if needed, and he has also been super helpful with information on battling my symptoms naturally, with supplements and such.
My greatest concern and fear at this point is, what will my quality of life be going forward? I never thought I’d be worrying about this at 27.... Maybe down the line as old age started moving in, but not at 27. There are days now that I can barely walk, function, etc. I can’t imagine what my quality of life will be in 20, 30, 40, 50 years, and that scares me.
The moral of the story I guess is this: Don’t judge a book by its cover, and don’t discredit someone by how they look or act, you have no idea what’s going on inside.
Pic on the left is one I snapped (I have no idea why) several weeks ago in the middle of the Lyme battle. It was late at night, I was very ill, in a great deal of pain, tired, frustrated, and discouraged. I look awful (I toyed with even sharing this photo as it is indeed me at my worst, but I think it may need to be seen)........ but the picture on the right is me, natural hair (not straightened, but wet), no makeup, BUT smiling and trying to look like everything is perfectly normal.
The right is how I usually look to people, it’s how I present myself (plus no harsh bathroom lighting).... “I’m fine.”
Maybe that's part of the problem too.
Is this how life will be?
Pain and illness with an end I can not see?
How can I live like this?
When life seems like a dark abys,
one I can not escape,
its strong clenches constantly at my nape.
Pain and illness now old companions,
as the frustration of fatigue seems like endless canyons
ones that I find hard to drag myself out of.
Would it be better to just let go and fall?
Would it matter at all?
One can not live by will alone,
and even if I could, I find even that is waning,
with every ounce of energy that continues draining.
Is all this due to a sin for which I have yet to atone?
Lord I don't understand,
why don't you reach out a hand?
I feel as though I am falling with nothing to grab hold of,
while you watch it all with disinterest from above.
Is this how my life will be?
Or will there be an end to the misery?
~ Liz Austin 2019
So many questions and no answers to be found,
I ask and listen but hear not a sound.
Worries and troubles, they eat away at me like a cancer,
but I'm talking to a God who does not answer.
I don't know where to go or what to do,
I need to know what is true,
I read through the Psalms, prophets, and the gospels,
I search the words and wisdom of the apostles,
but still, I hear nothing...
I am tired and weak,
I'm beaten and battered.
If it's one answer that I seek,
it's "Have I ever mattered?"
I send my prayers up with the skill of a lancer,
but I'm talking to a God who does not answer.
~ Liz Austin 2019
You stripped away the armor, took down the wall,
you broke, cracked, shattered it all.
You put me in the wilderness, but still under your domain,
and I’m left with nothing but the pain.
I am tired, I am weak,
I cannot walk, I cannot speak,
I’m left wondering how it all went so wrong,
I find no comfort in pithy answers or pious songs.
I feel my last bit of strength wane,
and I’m left with nothing but the pain.
My throat feels constricted, my voice gives out,
the pain in my muscles and joints continues to mount,
your silence, you seem to maintain,
and I’m left with nothing but the pain.
Where are you? Where did you go?
Do you hear me? That’s what I’d like to know.
Are you there? Are you really kind?
These are the questions to which the answers I need to find.
To let someone suffer seems so inhumane,
but here I am, left with nothing but the pain.
Is this how life will be?
Is this your plan for me?
Constant pain and illness.
I cannot find you in the stillness.
Your love and grace are supposed to sustain,
but all I’m left with is the pain.
~ By Liz Austin 2018
Born and raised in Upstate NY, Liz is a freelance writer. She has written for websites, blogs, and magazines for the last 10 years. She also acts as a proofreader and beta reader for several authors, all the while working on her first book.