Infusion day. Laptop on my lap. Designing anyway.
When I was 16, I couldn’t stay awake… the doctors thought it was mono – the kissing disease. But after weeks of testing and me progressively getting worse, they discovered that I had Hashimoto’s Thyroiditis. It is a common autoimmune condition, especially for women. That was my first.
Autoimmune conditions are when your immune responses get a little or a lot messed up. Instead of attacking invaders, they attack you. It is kind of like playing capture the flag, but no one is wearing jerseys. So you start capturing your own guys by accident.
At 21, I started breaking out in hives – all over, daily. I felt like a giant, itchy raspberry. I went through years of elimination diets for food allergies and tests for all sorts of things. Now, we know it was an extreme consequence of Hashimoto’s.
When I was in my 30’s, my hands looked like I had frostbite anytime they got remotely cold. And it was so painful. When I talk remotely cold… anything under 70. That was Raynaud’s Syndrome and my second autoimmune. What I was about to find out is that when you have one you are much more likely to have more.
At 37, I started losing weight fast… too fast and lost all my energy. That was the worst – my autoimmune system started to attack my stomach lining – atrophic gastritis. It is a fancy word for my stomach doesn’t work well at all, which means I am chronically malnourished. I need to be careful about what I eat, get shots, take lots of pills, and periodically have infusions to keep me going.
Throughout all of this, I could have given up or given in. I did not, I endeavored to persevere, to find out why this was happening and what I could do to feel better even if I could not reverse the damage. I kept searching for information and pushing the doctors.
That same drive to not only stay alive but thrive also fuels my creativity. I take all that frustration, anger, hopelessness, and disappointment into something positive.
If any of this sounds familiar — the fatigue, the frustration, the days when getting off the couch feels like a victory — this is for you.
I want you to know that I understand when you have a down day, week, month or year. Let’s face it – most of us do. It doesn’t matter if you are 25 or 85. We are all dealing with our own issues – physical health, mental health, family needs, work stress…. The list goes on and on.
That is why self-care is so important. Every day, I take a handful of pills to supplement my diet or mitigate a side effect. No matter how much I try to eat well, my body does not absorb it. So, my bloodwork is checked routinely to determine when I will need an infusion to make up the difference. I try to stay active by walking daily, working in my garden, or even trying to exercise a little. I try to get 8 hours of sleep, but that rarely happens. But I can’t do what I used to. I have to make more frequent stops, plan for a little less, and ask for help.
Asking for help is the hardest. It feels like I am giving in, letting the disease win. But now I let someone else mow the lawn. I settle for the floors having a little more dog hair on them. Or I let a neighbor’s daughter help me clean. And I accept the help when my neighbors shovel for me.
Through all of this, there is good news. No matter how blah I feel, I can always find the energy to design a new quilt. If anything, it energizes me. And I truly value the time I have to quilt. It is my zen moment when the world and my troubles can fade into the background for a while.
I admit that I mostly quilt for me. Yes – I give away quilts and make them as part of my teaching… But designing and quilting give me time away from my troubles. So the last thing I want to do is make that stressful. I find what brings me joy. I give myself grace for my mistakes, and space to explore and learn. I am not perfect (as my autoimmune journey shows), so my quilting won’t be either. It is my time to feel productive and make something. To pour my joys and fears into. To channel my excitement and my frustration into something that I have control over, because my body refuses to.
If this resonates with you, I invite you to give yourself grace and space to not only heal, but thrive. We may not always like the hand we are dealt, but we can make the most of them by finding joy.
May is autoimmune awareness month. If you or someone you love is managing through an autoimmune disease, encourage them to find a hobby or craft to help them cope. There has been a lot of press about quilting and other crafts and their positive effects on mental health. Autoimmune diseases have their own effect on our mental health, so take your medicine and quilt on.
