What can I do when the pain is unbearable?
It starts in the morning in my hips and legs and wakes me up from peaceful sleep. Limping out to the living room, I grab a BC powder and pour it into my mouth looking for some relief. Lately, I’ve also added a shot of vodka, not because I want to get drunk at 7:00 a.m., but because it sometimes lessens the pain. Other times it doesn’t.
This is no way to live.
My pain spends the day traveling to different parts of my body. It’s not picky about where it lands, choosing to ache and squeeze and stab wherever it wants. There are days when it doesn’t hang around long and other days when it spends the whole day with me, literally even being a pain in the neck sometimes.
Fibromyalgia’s evil cousin, depression, hits me on days like that. I can’t clean my house or write an article or even play with my 12-year-old daughter while she still wants to play with me. Exhaustion takes over and covers me like a heavy blanket, and I wonder if I’m any good to anybody like this.
I read books and articles on my condition. The one I’m reading now says I should start a gluten-free diet immediately and avoid toxins. Apparently, toxins can be everything from smoking (which I’m guilty of) and the beauty products I use and just going outside into the polluted air. I imagine life in a protective bubble which some days sounds good and other days makes me cry.
Also, there’s the brain fog that goes along with the fibromyalgia. If you send me to the store, you can be sure I’ll forget half the stuff you sent me for. Of course, I can make a list, but in order for that to work I have to remember it exists and actually look at it.
I found a stick of butter in my silverware drawer a while back that I must have put there when my brain was spazzing out. This kind of thing happens all the time. It’s hard to focus sometimes and concentrate on my day job of transcribing doctor’s reports, which have to be accurate as medical records. I failed an audit last month and got put on the equivalent of work probation for too many errors. I can’t be confident it won’t happen again.
Working With The Tools I Have
I’ve tried everything over the counter I can think of for the pain. I’ve even gone out of my way to find CBD oil (works about half the time) and kratom (works a little better, but not enough is known about long-term health risks). I know my doctor could prescribe something stronger, but I’ve held off because of my past history of opiate addiction. I try magnesium and turmeric, but they are little more than placebos for my symptoms.
There are also drugs like methotrexate and prednisone, but they come with a billion side effects. However, I’m not sure how much longer I can hold out. I don’t want to become a walking pharmacy, but the fibromyalgia is unrelenting and getting worse with every passing month.
There’s also the issue of insurance, which I don’t have at the moment. It stops me from seeing a specialist who will only let me through the front door for a first visit for a grand total of $400. I worry about something horrible happening with my health and dying indirectly from lack of insurance. I’ve seen it happen to others, and it’s heartbreaking every single time.
I’m acutely aware of how much my family needs me, and it’s devastating to let them down again and again because I don’t feel well. My daughter’s outings are limited because it’s hard on me to take her to the park or riding bikes together. Sometimes it feels like our whole family has this disease.
My mother and grandmother both suffered from fibromyalgia, and I worry about the future for my daughter. I pray they have better treatment when she gets older so she won’t have to go through the same thing.
If it sounds like I’m whining, I am. I’m tired of scheduling my day around my pain level, tired of the occasional skipped shower because I can’t lift my arms over my head and tired of being led around by an illness I can’t control.
My love of writing has even had to take a backseat, not just because of the pain in my arms and hands. There has always been a connection for me between being sick and being clinically depressed, and it’s hard to think of ideas when you’re feeling that way. The desire to write is still there, maybe more than ever, but it’s harder to accomplish anything when I’m in a flare and feeling bad about myself.
I refuse to give up though. If I have to eat a gluten-free diet and stop smoking and change my whole lifestyle, then so be it. I can’t let fibromyalgia kick my ass day after day after day. I know this particular flare will go away, but another one could be right around the corner, so it’s best to start fighting before it gets here. Because this is no way to go through life, and I’ll be damned if I let the disease win.
Living With An Invisible Illness
For those who suffer along with me, you are braver than you’ll ever know. Getting through life bearing such a heavy weight can only make you stronger, even if you don’t feel it right now. Celebrate the little victories and don’t beat yourself up if you fail. You’ve gotten through every flare until now, and you’ll get through this one, too. So will I.
Surround yourself with people who love you. There are Facebook groups for people who suffer from fibromyalgia and understand what you’re dealing with. Not only will they give you strength, but you can help somebody else going through a hard time, and that will make you feel even better.
Those of us who live with chronic pain are tough cookies, and we should be proud of ourselves every day, even when the house is a mess with dishes in the sink and laundry piled up to the ceiling. There will be time for all that. Right now, get the rest you need and know that you are loved and you are wonderful.
I need to remember that, too.
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