So here I am, it’s another one of those days I’m struggling with my health. See this last couple weeks I really went for it. I did ALL THE THINGS. I didn’t want to slow down and admit that I’m not actually that person that can do what everyone else does. I wanted to pretend for a week that I didn’t have a chronic illness. I wanted to never say “I can’t, I’m sick”. So today I’ve been paying for it. But for me it’s worth it. One of the things about living with Fibromyalgia is that it’s mostly about choices. Especially since I’ve become a mother.
When I got pregnant, I went off my prescription medications. I’ve written about that before, in part one of this story. How it was to get so used to being on meds for my entire adult life and many of my teenage years and then go off of them because suddenly there was something way more important, my baby.
One of the things about living with Fibromyalgia is that it’s mostly about choices. Especially since I’ve become a mother.
I wrote about how hard the process was but now I want to write about what it’s like now. Since having my daughter my fibromyalgia has not gone away. Though for a while the hormones of being pregnant and breastfeeding definitely impacted my health in a positive way. But what I did learn was in order to live the life I want I had to make choices. Hard difficult choices. When my daughter was a newborn it meant not really going anywhere. I needed to reserve all my energy just for taking care of her.
Staying home was the safest choice.
That was incredibly difficult and lonely. But it was the only way for me to function as a parent without being too exhausted to drive us home from wherever we were. I made doctors appointments, but that was largely it. Nothing outside my 5 mile radius. People with fibromyalgia need more rest than others. Average adults need 6-8 hours. I need about 10, I’ve heard of others needing close to 14. So with the lack of sleep that comes with a newborn I was operating on a very split up 6 hours. Like maybe 1.5 hours at a time. If I got more than 3 at a stretch I was lucky. Staying home was the safest choice, for everyone.
As she got older and I became more confident of how much energy things would take, I got more able to leave my home. But it was still hard to choose what to do. Should I make a play date and know that I’ll be so exhausted, I’ll have to go to bed basically when she does? Then not have time with my husband or time to myself? Should I book a babysitter, and try to go spend some time with my husband? Knowing that when I come back it’ll be just snuggling and movie times. That’s a tough call.
I had to decide to let go of parenting at the level I saw others trying to attain. Now for me that’s been a blessing. I don’t stress over how much tv my daughter watches. I know it’s how we have to do it so that I can maintain some sort of work/health/life balance during parenthood. I learned to say no to things that I would have pushed myself to do before. “Oh the baby naps at that time” is not only 100% true, but also gives me time to rest. I don’t do a ton of events that are aimed at families, it’s too exhausting for me and honestly I’ve learned that we don’t really enjoy them.
The other part of self-care that I learned during pregnancy and that has continued is putting my health on my to do list. At first when I had my daughter it was simply about survival. I stayed home, low key, low energy activities. But then I became depressed and lonely. So I had to find a therapist, see my doctor and make sure I went. I started working towards building strength. I didn’t want to be “in shape” as much as I wanted to be able to keep up. Keep up with my child that is. As she grew she became more high energy and demanding though I was lucky it coincided with her sleeping better.
I didn’t want to be “in shape” as much as I wanted to be able to keep up.
I started going to the YMCA regularly (it has free childcare!) and taking CBD for pain relief. As the hormones in my body regulated because I wasn’t nursing my Fibromyalgia pain came back full force. Sometimes people ask me what it feels like. I’ve had it so long it’s hard to describe but it’s something like a body full of bruises, endless exhaustion, nerve pain that shoots through your joints and muscle twitching plus a weak immune system. Sometimes all at once and sometimes just a few places. However I REALLY didn’t want to become dependent on prescription medication again. For the first time in my adult life I was functioning without opiates.
I’ve had it so long it’s hard to describe but it’s something like a body full of bruises, endless exhaustion, nerve pain that shoots through your joints and muscle twitching plus a weak immune system.
Once she hit around a year and a half I learned about S Factor from a friend. She knew that I was still angry and disappointed in my body. That I blamed my body for not having a natural birth. That I blamed my body for not being an active play parent. But I needed to let all that hate go. I had to figure out how to love myself. S Factor is erotic dance/pole dancing classes and its a magical place for many who attend.
For the first time since before I was diagnosed I was FEELIN MYSELF. Yes just like Niki Minaj. I grew stronger, and more flexible (still the least flexible in the class but it doesn’t matter). I started to believe I was beautiful and worthy and strong. Feeling more confident about my being a lead singer in a band with my husband. We grew closer as a result. This enables me to be a better parent. After classes I have to massage with CBD lotion and hot shower and then ice. These are the things that I know work.
I’ve learned my limits, sometimes I still stretch them. Like I said this last few weeks I did ALL THE THINGS. I drove my friends child to school, I volunteered to write about a fancy Gala Fundraiser for that school which meant I interviewed the director. I helped plan a birthday party and a baby shower and threw them within a week. I did boudoir photos in my skivvies. Then I played a concert. And the next day after it was done I did nothing. I parented from the couch. Every night after those activities I iced and then the next morning used a heating pad. I took all the vitamins and natural supplements. And then I started again. Because my Fibromyalgia doesn’t define my life, it’s only one part of it.
It’s now three weeks since I did most of that but in that time I attended a Gala, went out to support a friends band and did a shit ton of driving plus obviously parented. My mom came to visit which was a life saver. I’m still in a flare up. I am using a TENS machine which uses electrical pulses to interrupt the pain signals. That keeps my pain localized to what actually hurts instead of pin balling around my body. I cannot let it stop me. I can’t let it define me. I’m currently in Big Bear, a trip planned when I wasn’t in a flare. Cold hurts me so I packed 3 heating pads of various sizes and I resorted to some meds after my flare caused me to not be able to move my neck for three days. But Fibromyalgia has many faces. sometimes I look like above. Sometimes I look like this glamorous being below. By the way, I’m still in pain in this photo. That’s the crazy part about invisible illnesses. You get really good at making yourself look fine.
Life goes on. I know who I am and who I want to be and that includes but isn’t only Fibromyalgia. I’m not sure what will happen in life but I do know that though this may slow me down it won’t stop me. I hope that anyone reading this takes away that you CAN have the life you want. I didn’t imagine growing up that I’d have this illness but I did imagine a family, living in California and being an artist. I’m accomplishing more than that even after diagnosis. At 16 I thought my life was over but it wasn’t. If you are struggling with your health and think you can’t live a “normal life” because of it, remember that no one is normal. Just find out what YOUR normal is. You’ll get through. Now I’m going to watch my kid frolic in the snow while I sip hot tea and feel damned lucky.