Almost a year ago I came to grips with a difficult decision. I needed to take a couple of months away from my blog. The difficulty arose from the realization I was giving in to my pain and resulting depression. Giving in is not in my nature.
Two months grew into six. Then into ten, and here we are today, a bit over a year later. Without saying anything more, I let the months slip by. Finally, my courage and determination have gotten the better of me. I’m stepping out from behind those excuses. Continue reading →
Watching for signs of spring can reveal miracles happening around us. The helleborus shown above is a miracle. The plant lives through the coldest and darkest nights of winter. Survives the winter rains and often hail and freezing rain. And still near Christmas you’ll find buds forming. Now, as we are in the middle of February, they are blooming. Our plants are full of blossoms! These plants and their blooms represent a miracle in my mind.
They could have succumbed to the harsh winter weather. The cold east wind bringing a tinge of iciness with it. At some elevations, these plants might have received a covering of snow. Yet, they bloom away. Miraculous in their survival.
On December 31st, I met with my pain management physician. He advised I had reached the end of free hemp and would need to buy it on my own. My first order of three 30 mL bottles (a mere 30-day supply) cost me approximately $200.
My husband pointed out the hemp didn’t appear to diminish my pain level. A grocery shopping trip would find me lasting between 15 and 20 minutes on my feet. Then I had to give up and sit it out until Bob finished on his own. I couldn’t stand long enough to make a meal. I’d pull up my mother-in-law’s kitchen stool to the counter after 15 minutes or so. So many things I haven’t been able to do, and most of it because of pain from a bone harvest in 2001 during my first fusion.
After some discussion and prayer, Bob and I decided I should stop taking the hemp. After all, at that price, why should we buy it if it wasn’t working? So I did. Early in February, I took my last dose of hemp. It was an emotional decision because the hemp seemed to help at first. But, increasing doses didn’t seem to increase the hemp’s effectiveness against pain.
I confess if I leave home I do take a small dose of a prescription pain reliever as a precaution. After spending a couple of hours visiting friends in their home last week, we stopped at the grocery. I actually made it through the store without stopping to sit at all!!!
Yes, I can say I am pain-free now. Since the late 1990s, I have struggled with some kind of back pain. Most have increased in intensity over time. Between spinal fusions, I would have relief and often for long periods of time. Yet, the pain was never totally gone.
Please don’t ask me what caused this tremendous turnaround. Neither Bob nor I can answer that question. We accept it as a miracle. The Bible tells us that miracles are born of prayer and faith:
Jesus said to her, “Daughter, you took a risk of faith, and now you’re healed and whole. Live well, live blessed! Be healed of your plague.”
(Mark 5:34, The Message)
Your comments and thoughts are welcome. If you have stories of miracles, I would love to hear them. If you have stories of those who haven’t received a miracle and you wonder why, feel free to share those as well. Sharing stories is important in building community as well as spreading God’s love.
Hope is being able to see that there is light despite all of the darkness. ~~ Desmond Tutu
Hope is a rather small word. Only four letters and one syllable. Yet people have survived unimaginable accidents, imprisonments, and illnesses. When asked how they held on, most answered continuous hope. That symbolizes a good deal of power in a four-letter word, only one syllable.
How is it such a small word can do so much?
From a base of hope, we see courage, confidence, and happiness arise. These qualities become a coping strategy at a time of difficulty or grief or illness. I’ve had many surgeries over the years, several on my spine. But I had never felt as confused and disheartened as I did right after my surgery this past March. Entering the hospital, I hoped for relief from constant pain.
Since my last posts (here and here), approximately nine weeks have passed. Recovery began the instant the surgeon saw fit to call it complete. Yet, minor complications and some unknowns created a recovery more difficult than expected.
Despite the complications and unknowns, my hope is a reality. The constant pain I suffered since January 24, 2016, until March 6, 2019, is gone!
During these nine weeks, hope has been my mainstay. Of course, there are days when I am discouraged. Or there is a minor setback. But when hope kicks in other feelings surface. The courage to push on through those exercises even though it hurts comes to the fore. The confidence to overcome this stumbling block arises. And a sense of happiness envelops all I must do.
But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. 1 Corinthians 13:13 MSG (emphasis mine)
Today’s post brings to a close this series. The first and second posts on chronic illness and the writer can be found here and here. The five remaining tips for coping with chronic illness and/or pain are shared below. As stated before, I’m not qualified to say these will work for everyone. I share them because, on occasion, they have worked for me. You know your body better than anyone and your illness as well. Let no one tell you what will work best for you. Decide for yourself.
Tips for the not so good days.
If you need a refresher of the first five tips, take a moment to go back and review those in this post.
6. Practice Acceptance.
We all have dreams. Some come true. Some don’t. The part of my dream that came true is the publishing of several essays for inclusion in anthologies. So far my bestseller hasn’t seen publication.
Nothing would be more fulfilling than to have my memoir published alongside others in my online writing family. But it hasn’t happened for me. Soon after retirement, I began planning to my memoir, and I have a completed draft which I’ve revised again and again. What I didn’t plan for were the health issues that came galloping into my life. Continuing spine degeneration and chronic pain more or less control many of my days now. I find myself forced to accept the things I likely won’t do as a writer.
I have learned and also accepted that it takes me longer than others to complete tasks and projects. Patience isn’t one of my best traits, and learning acceptance of what isn’t going to happen is hard for me. There are days when my mental processes won’t wrap around my writing goals and projects. Some days I’m too fatigued to write. Or the pain is too much and the medications make me sleepy.
Acceptance is all I can do on those days. If you have to work through this process, please learn to practice acceptance with grace.
7. Put your health first.
This topic probably should have come earlier in the list of tips, but I think anyone with a chronic illness knows that putting your health first is important. If you have a day when nothing works to keep you comfortable other than taking a nap, take that nap. With a chronic illness or pain, your body and its systems are already compromised. Doing what your body requires will keep you feeling better in the long run.
On the “not so good” days it may be that all you feel like writing is one sentence. If that’s all you can get out, congratulate yourself. Perhaps using these days to brainstorm a new project is the best purpose you’ll find. Envision your characters and begin to structure their personalities. Another good use of down days is to read books by other authors. Learning from other writers is one of the best ways to learn how to write.
8. Seek out a support network either online or in your community.
As writers, we are encouraged to build a community of support and encouragement. As a chronically ill writer, this is even more important to your well-being and writing life.
The worst thing about a chronic illness or condition is being alone. Writers tend to work alone for the most part so it isn’t something new to those of us limited by our health issues. Yet, as you look around, you see everyone else looking healthy and energetic, having fun and being happy. And there you sit all alone taking medications and feeling sorry for yourself. Wouldn’t it be better if you had a place to go where others understand what you’re going through? After all, if they’re going through the same situation, there’ll be understanding and compassion.
One of the best ways to find such a network or supportive community is the internet. Take a look at Facebook or websites focused on your illness for recommendations. I’ve joined a couple of Facebook groups and have gotten answers to questions and found support on bad days. On good days, I can then encourage others. It’s a great way to find common ground with others in your situation.
9. Use a to-do list to reward yourself.
Rewarding yourself from time to time for even the smallest accomplishments is a great motivator. Using a to-do list not only gives you a way to track the things you want to accomplish but also a way to assign a reward of some kind when you check off an item. For example, if you write 500 words, allow yourself a certain amount of time on social media. Or let’s say I finish my book. I can buy myself that piece of exquisite pottery I’ve been wanting. This is a way to work your way through smaller amounts of the work effort and at the same time give yourself a reason to feel good about what you’re accomplishing on your good days. And sometimes even on the not so good days.
If you are looking for an app to help with tracking your tasks, look at one or more of the following: (1) Todoist (free/premium options) lets you keep track of everything in one place; (2) Wunderlist (free/premium options) tracks your tasks for home, office, school and more; (3) Microsoft To-Do (free) keeps your day in focus; (4) Ike (free) is a playful to-do list created in the spirit of President Dwight D. (Ike) Eisenhower; and (5) Habitica – Gamify Your Tasks (free) helps motivate you to get things done using a video game to improve your life habits. I’m not a user of any of these apps. I use Google Calendar to track things I need to accomplish–simply and easily. And free!
10. Don’t forget to celebrate your successes.
Whether it’s meeting writing goals, progress made in physical therapy or nutritional therapy, or completing an online course, celebrate your successes! Remember as you struggle with a chronic illness each day you’re up against obstacles not everyone else has to battle.
Did you get out of bed this morning despite the depression you’ve been fighting? Maybe you finished that short story and submitted it to a contest despite the fact that your fingers and hands were enveloped in pain. Or is that book on its way to the publisher? If any of these or some other accomplishment found its way into your life, celebrate the victory over your situation.
Don’t let the impossibility you feel about big goals get you down. Look at the small accomplishments you’ve already made. See how far you’ve come. Look at the number of bad days you’ve already survived. Set your modesty aside and be proud of yourself!
Last week I posted the first post in this series on chronic illness and the writer. Today I want to share with you some tips I’ve found to be helpful. I’m not qualified to say these will work for everyone. I just know they have, on occasion, worked for me. You know your body better than anyone and your illness as well. Let no one tell you what will work best for you. Decide for yourself.
Tips for the not so good days.
Before I get started with the tips, I want you to know I am the worst at following my own advice. However, I am still learning at 72 what I need in my life to function and be happy. Yes, I have my low moments, maybe even days, but you have to pick up and keep on moving, so to speak.
Today I’m sharing the first five of ten tips for those not so great days. Next week we’ll look at the remaining five.
1. Establish a routine.
A routine for your days gives you something solid to return to after one or more not so good days. I once had a rheumatologist give me the following instructions to cope with fibromyalgia:
You need to establish a set time to wake up each morning, same time every day. The same should be done in the evening, a set time to go to sleep. The bedroom needs to be dark, no light at all. Also no TV or music in the background. Clear your mind. If you can visualize, think of a way to clear the things from your to do list that perhaps didn’t get finished today. Eat a healthy diet, get exercise no matter how bad you hurt, drink lots of water, and get plenty of rest.
I worked hard at his instructions after several days of pure anger at his thinking he could tell me what to do.At the end of several weeks, I began to feel better. And thanks to him, fibromyalgia isn’t a part of my chronic issues today. The only element in this advice I’m unable to commit to currently is getting the exercise.
If need be, write little and often. Don’t set yourself up for writing five or six hours straight and ending up fatigued. Because there are other tasks throughout the day which call us at the ready, we need able to withstand the energy they require too. Our illnesses and pain drain our energy level and we need to protect ourselves from draining our energy source.
One method of protecting against excessive loss of energy and the end result of fatigue is The Spoon Theory. The brainchild of Christine Miserandino, The Spoon Theory exists to provide a simple method of gauging your energy usage task by task. Read Christine’s post here and her explanation will be much better than any I could write for you. I understand and appreciate this theory but have not personally tried it.
2. Be flexible with your goals.
It’s easy to get caught up in the list mode when looking at your goals for the year, a month, a day, a week. It’s also easy to beat yourself up if you miss a goal. That only adds to your discomfort.
Sometimes it’s what we read or hear that pushes to meet our goals on a regular basis. As a writer, I’m sure you’ve heard that “to be a writer, you must write every day.” My thinking here is the author of those words never suffered from a chronic illness and/or pain. Trust me–if he/she had, they wouldn’t have written those words. So, what are you to do?
Let’s say you set a goal to write 1,000 words each day. Some days you may meet that goal. But others you may only write 500. Then on a really good day you write 3,000 words. And on your worst days you write nothing. Do you see how this all may balance out in the end? This is where my next tip comes into play.
3. Be honest with those who need to know.
When I was still a working girl in the private sector of the Portland legal community, I pushed every day to get to work no matter how bad I felt or hurt. I continued to work long, overtime hours in spite of my physical condition. Honesty with others about my chronic conditions left me vulnerable and fearful they might judge me as lazy or goofing off. An incident a few weeks later taught me differently.
The memory of this particular day is still fresh in my mind. It was during my years of coping with fibromyalgia. I knew I really wasn’t able to cope with a full much less an overtime day and three attorneys. Each one of the attorneys expected me at his/her beck and call. The work was flowing across my counter in front of my desk like Niagara Falls.
One of my three attorneys had left me gifts of several tapes to transcribe and I had done a couple of them. I picked up another just as I was interrupted by a ringing phone. I put the tape in my transcription machine and voila, I hit the ERASE button. Didn’t even phase me. It hit the end and I rewound it and didn’t think about it at all until he asked about the finished product. That’s when I realized I had been walking a tightrope with no security net that day. I burst into tears and explained to my senior attorney what was going on. He called my husband to meet us at our home, and he drove me there and told me to take off the rest of the week. Understanding? Oh, yes. Fears warranted? Never. It was all in my head and my upbringing.
Be honest and upfront with those who need to know.
4. Find ways to adapt your workspace to your needs.
Most importantly, make certain your desk, computer, and chair are ergonomic to fit your physical needs. Search online for charts showing the distances necessary to make these three things just right. During the last two-plus years, I’ve spent many hours using my laptop while sitting in my recliner because it was the most comfortable place for my back and other injured areas.
I keep a pain-killing cream nearby (Aspercreme with lidocaine 4%). It really works quickly to erase the low-grade pain. Also, the freezer is stocked with ice packs for deeper and more intense pain. On the days, the pain is at its worst, I simply call it a day and do other things, like pick up a good book and read it all the way through. I listen to music and knit, or I succumb to adult coloring books. With my mother-in-law’s kitchen stool from the farm where my husband grew up, I can pretty well prep and cook meals. Little things are all it takes to make it easy to do what I need to do, or not.
5. Don’t compare yourself to healthy folks.
This is an area where I lose ground easily. Especially during the seasons I love, spring and summer. Right now, I’m envious of those out planting gardens and having the ability to be outside actively working in their yards. What I should be doing is thinking about all the things I can do that they can’t. Comparisons never work in your favor in the instance of healthy vs. unhealthy.
When you’re a writer, it’s doubly easy to succumb to the successes of your fellow authors. For example, when you’re on Twitter or Facebook, someone always has a cover reveal to share, or announces they’re signing with a new agent, or sharing they got a gargantuan publishing deal from one of the big houses! And you’re sitting there wishing you could just write 1,000 words a day. Remember this, if nothing else, we can’t all be Stephen King, J.K. Rowling, or Alice Hoffman. So just be the best you can be.
Depending on what resource you use, you may find a variety of answers to this question. However, in my research as a writer and a patient, it appears the duration of an illness usually labels it as “chronic.” The length required in the health insurance industry is a duration of at least three months or longer. Overall, the medical profession usually considers one year as defining chronic illness.
‘a physical or mental health condition that lasts more than one year and
causes functional restrictions or requires ongoing monitoring or treatment’
Three months doesn’t seem all that long, and yet a year seems like a long time to be under the veil of illness. But suppose the illness or condition lasts longer. Let’s say the rest of your life. Based on your age, that could be several decades or a few years. Take into account the illness or condition and it could be a stressful situation for you and perhaps those you love.
How many people suffer from chronic illnesses?
The Raghupathi findings state that almost half of all Americans (45% or 133 million) suffer from one or more chronic conditions or illnesses. The persistence of such illnesses drive up hospitalizations, insurance costs, long-term disability payments, and death. The only factor showing a downward movement is the quality of life.
A quick look at some common chronic illnesses.
The following listing was compiled with the assistance of the Internet and should not be considered all-inclusive:
As noted, this is not a complete listing of chronic illnesses or conditions that fall under the description used by insurance companies or healthcare facilities as “chronic.” For example, there are numerous conditions which create chronic pain in some individuals. Likewise, respiratory conditions are diagnosed which over the long-term will cause a patient to struggle with chronic breathing issues.
Before moving on, I want to clarify that this post is written with writers in mind. However, it is not intended to imply that other individuals, no matter their profession or career, don’t fall victim to chronic illnesses and the struggles mentioned here. My personal experience is my lens into the subject matter and, therefore, writers and writing are my focus here.
Also, I am not a medical professional. Any tips and/or advice shared are my personal tools for coping. Before using them, you should consult your personal physician.
Coping with a chronic illness.
Coping with chronic illness is not easy for anyone. Chronic illness disrupts not only the victim’s life but also the lives of family, friends, co-workers, and on and on. A chronic illness often begins a cycle of many other changes in the victim’s life, including the onset of depression, lack of society, changing eating habits, level of physical activity, often outward appearance, and more.
The side effects of the chronic illness or pain are sometimes more destructive than the primary illness itself. For example, depression is a component of my chronic pain. Days become long and sad when all your energy is focused on controlling the pain. Certain prescription medications, such as opioids, make bad matters worse in some instances.
Depression can lead to anger and frustration with never-ending illness or pain. When there are no new answers or treatments, it is easy to fall into a pattern of anger and often your anger is taken out on someone rather than the thing creating your emotional upset.
Sometimes you feel like burying your head under the covers and hibernating as a bear does in winter. But this isn’t a solution either. Withdrawing from the society of family and community leaves you feeling lonely, adding to the cycle of depression and anger.
Needless to say, none of these cyclical add-on symptoms help the main cause of the chronic illness knocking on the door of your life.
How does a writer function under these circumstances?
As writers, we’re encouraged to write every day. What do you do when every day isn’t always a good day? How do you move on with your writing when medications leave you in a mental fog? If your pain level is so intense nothing brings relief, how do you manage to put words on the page?
I can tell you firsthand it isn’t easy. You want to write, but somehow you can’t. You search for something that will trigger the flow of words, but nothing happens. Your head seems to be swirling out of control, and then…
Your mind becomes filled with a massive list of questions:
How will I meet my deadline?
How will I ever get through the edits on my manuscript?
I need to get out and get some research done. How can I manage that?
Getting out of bed to get my family out the door in the mornings is a challenge. What can I do to make it any easier for me, them?
Some days the depression envelops me. How can I break that cycle?
I’m angry and frustrated that my life is controlled by a chronic illness/pain. Is there some way to resolve this emotional state I’m in?
And likely this list could grow ad infinitum.
Conclusion.
Here is a good place to end Part 1. In Part 2, I share answers to some of the above questions and tips for coping with the chronic nature of some illnesses and pain.
Please feel free to share your thoughts and/or stories about someone you know who has a chronic illness or your own story if you’re comfortable doing so.
