I thought perhaps I wouldn’t be writing a blog post this week because I’ve been feeling pretty horrible lately. We’re currently doing medical testing to figure out what’s going on. Then I realized this morning that maybe that’s the exact fuel I need in order to write this particular blog post.
As many of you know, I have chronic Lyme disease, a couple co-infections (also likely from a tick), hashimoto’s thyroiditis, malfunctioning adrenal glands, etc. I went 6.5 years without a diagnosis and during that time I was mostly bedridden. Two years in, I began to draw as a therapy, because there was nothing else I was physically able to do.
If you haven’t read the story about how I became an artist through and despite of my illness, check out this blog post here that tells that story.
Below isn’t that same story about how I became an artist, it’s about what it’s like trying to keep my business going and growing despite my chronic illness and constant setbacks. It’s how I keep myself happy and moving forward despite being in constant pain. It’s how frustrating, depressing, and emotional it can be at times, but also how inspired, changed (for the better), and hopeful I am.
Please take a moment to read along, and share it with someone whom you think would benefit from it.
Always Needing A Backup Plan
My life is unpredictable. Some days I can function, at least for a while, like a normal human being. I have energy to go out and socialize, I have a fairly clear head and can hold an intelligent conversation, and I can look and act perfectly healthy. Other days, I’m in bed.
Fatigue, nausea, and migraines can overwhelm me at any moment, and they’re a constant threat. It’s like walking around with a cloud over your head that could pour down on you at any moment.
Because of this, I have to make back-up plans for everything. I land an interview with the local media? Great, but I make sure I don’t do anything the day before to help save my energy and then I prepare someone else to be able to be there and answer questions about me and my artwork in case I get taken over with a migraine and can’t do it. Opening reception? Awesome, but I make sure someone else drives me because I probably won’t be able to drive back at the end and I also make sure the venue knows there’s a chance I might have to send a proxy if my illness flares up.
I’ve learned over the last 8.5 years of being sick that I need to have a back-up plan ready for any situation I get into. This includes sitting at the back of an event if I suddenly have to leave, or having someone on speed dial in case I can’t drive myself back home.
I never know when I will feel well and when I will feel horribly sick.
Learning To Work Around My Illness
I used to really enjoy having a schedule. At school you have 1st period and then 2nd period, and everything in your day is planned out. You work on math, then science, then English, etc. Then I would have basketball practice, eat a snack, shower, and do homework. Every day had a specific schedule and you knew exactly what you were going to be doing.
After I became ill, I tried to do that same thing. I thought the only way I could be productive (especially after I started treatment and had a little more energy), was to schedule my day and week out and follow it.
Trouble is, my brain and my body don’t work like that anymore. Not even close.
I was getting so frustrated trying to stick to the schedule and failing on the first day. What was wrong with me? How could I be productive if I couldn’t even stick to a schedule for one day?
I was so frustrated and bogged down by that failure because it just didn’t make sense to me. Common sense says that the more you plan things out, the more efficient and productive you’ll be.
Common sense like that doesn’t work when you’re chronically ill.
It took me a long time to realize that I would be most productive if I just had a list of things I needed to do and worked on whatever struck me that day. Some days my brain, due to headache or brain fog or lack of sleep, just couldn’t focus on writing, or planning a reception, or marketing, so instead I would draw or do something else. Some days, drawing is like pulling teeth, so instead I move on to researching or working on the computer. And so on, and so on for all of my tasks.
I learned to adapt and tackle the tasks that my brain and body could handle, specific to each day.
Sometimes I Just Can’t
When I was healthy I had a “Type A” personality. I was efficient and I like to do things and do them well. I played 3 sports, I had a 4.0 GPA, and I was healthy and fit.
That’s why it was especially hard for me to accept not being able to do things after I became sick. At first I thought if I just pushed myself harder, I could get through it and get stuff done, which obviously made my health much worse instead.
It’s very common for people in the beginning stages of chronic illnesses to not understand their limitations and overdo, making themselves feel much worse.
This can also make you feel like you’re just not worthy of anything. You can’t do much, you keep messing up, you’re not productive or social or really adding to society in many ways. Those voices in your head keep putting you down, making you feel horribly guilty and worthless. It’s very common for people who are chronically ill to feel this way, and despite your best efforts to stay positive, some days it just overtakes you. It’s fine to let myself fall into this once in a while, but then I have to get up and move on and focus on the positive.
Now I’ve learned that there’s things I just can’t do. I can’t go hike a mountain or run 5 miles like I used to. I can’t guarantee that I’ll be somewhere or be able to go out and socialize. I can’t work on a deadline, and I’m very upfront about that with my clients because sometimes it’ll take me a week to complete a commission, and sometimes it will take over 2 months depending on how I’m feeling.
Learning to accept these limitations (and many more) has been one of the hardest parts about being sick.
Emotional Roller Coaster
I’ve been on treatment for the last 3 years and I’ve seen huge improvement overall in my health. I can drive some now, I don’t have a chronic debilitating migraine anymore, just a headache usually, my anxiety is somewhat better, I can go for walks and grocery shopping sometimes, etc.
So progress with my treatment has been positive and I’m able to do much more than I could a few years ago. However, there’s constant setbacks.
It seems if it’s not one thing, it’s another with me, and I know it can be like that for many people.
If I’m feeling better for a while, some other stress will occur, like financial stress, or family members in the hospital, and other life stresses. That’s life. But I also keep having health setbacks. For example, I was feeling really good (for me) a year ago and then moved into a new apartment. Gradually, I started feeling worse and worse, and we realized in the winter that there was mold on the windows and it was making us sick and causing all sorts of problems.
There are many examples of this. Another one is that as my energy returned when I started treatment, I started walking more and more. It was amazing being able to get out in the fresh air and move around, because I could barely do that for the 6.5 years before treatment. Then every time I went for a walk I would have excruciating pain in my lower abdomen. It was so bad I buckled over in the road and could barely get back home. Turns out I had cysts on my ovaries that were causing problems and I had to wait for them to resolve themselves, which took a year and a half. So much for my daily walk.
Being chronically ill is a huge roller coaster for your emotions, and the emotions of those closest to you. One day you’ll feel good and go for a walk or be productive and you’re like YES! things are happening and I’m getting better! Then the next day you have the worst migraine or fatigue you’ve had in months and you’re right back to feeling miserable.
Building A Business That Fits My Life
You might be reading this and think, how the hell could someone in this type of situation start to build a business? It just doesn’t sound possible!
Building any business, even if you’re 100% healthy, is a crazy amount of hard work, stress, and frustration. Ask any artist you know and they’ll tell you that building a business based around their artwork is likely even harder. Now add the chronic illness and constant up and down and not knowing how much you can accomplish or being able to work on a deadline or necessarily show up for events, and the path to success gets especially tricky.
Like I said above, learning to work according to how I feel each day has been key. Sometimes a great opportunity will come along, and unfortunately I have to say no because I know it’s too much for me right now. But I’ve learned to accept some of my limitations and I constantly strive to find ways to build my business that accommodate my illness.
For example, passive income. If I can make a product, like a drawing, and then sell prints of that drawing, that’s fairly passive income because it doesn’t require a ton of energy from me, although it does require some. True passive income is more like creating a pdf tutorial, like this one for my African Elephant drawing, and selling it as a digital file. Once I’m done making the pdf, I upload it to my website and people can buy and download it on their own, with no more effort from me other than reaching out to see how they liked it.
If I can build products that don’t require ongoing energy from me, that’s the best way for me to grow my business.
Another way to create passive income is to write an e-book, which is something I’m in the process of doing right now. I know there are a lot of artists out there with either limited energy due to something like what I have, or just limited time because they have another full-time job, or kids, etc.
The e-book I’m writing is: How To Create An Art Business With Limited Time Or Energy.
This book will be available via Amazon and will go into detail about productivity, learning your work-type, adapting your business to your own personal situation, growing at a pace that makes sense for you, creating a community, enhancing your marketing, creating goals that are easier to achieve, and more.
If you think this book is something that will interest you, or someone you know, contact me and I can add you to my email list to let you know when it is released and exactly how to get it.
It’s Not All Bad
There’s been some surprisingly good things that have come out of my illness. One is my ability to adapt and take things as they come, one day at a time. Sometimes everything will still weight on me and I’ll have a day or two where I’m lost in desperation, worrying and feeling frustrated with my situation. But most days I know what’s in my control and what’s not, and I only focus on what is. If my body needs rest, I rest. If I can be productive, I’m thankful and do what I can.
Since I became sick in 2008, I’ve also become more empathetic. I’d say I’m a lot less self-centered than I was before and much more open to the people around me. I want to help people and make a difference as opposed to just thinking about my own success.
I’m also happier, which sounds crazy, right? How could I be happier when I can’t do half the things I used to love doing? Well, that part sucks no matter how you spin it, but I’m still really grateful for what I CAN do. I’m thankful for my supportive family and friends who have stuck by me, and it’s easier now to notice the little things in life. Right now I have my cat curled up next me and out the window I can see buds forming on the bushes and both of those things make me happy.
And last but not least, I discovered my interest in drawing. If I hadn’t gotten sick, I may never have started drawing. I may never have been an artist, or an inspirational speaker, or connect with any of the amazing creative people I’ve connected with. I never would have met my boyfriend, I probably wouldn’t have been an entrepreneur, and it’s possible I would have been doing a job that I didn’t love.
Not everything about this illness has been horrible. There’s certainly been a number of silver linings, and it’s focusing on those things that keeps me going and keeps me focused.