If you’ve seen my Twitter (@Knotmagick) in the last week, you’ve probably seen how fantastically bad our recent move went. It’s become a running joke at this point that when we move, the hired help doesn’t showed up (this is the 3rd move in a row). I don’t want to get into all the ways it went horribly wrong, but suffice to say it involved a lot of stairs, way too much money, and a bench we’ve been using for 2 years collapsing under me while I was taking down our valances in the dinning room (I’m fine. Thankfully I was kneeling on it instead of standing, so I landed on my feet. Scared the shit out of me, though).
I was diagnosed with my chronic illness in 2018, but didn’t start getting the proper treatment until June of this year, when I got a more specific diagnosis.
I’ve had to adapt my life to accommodate this. Even though I’m fully vaccinated, I still try to wear my mask whenever I am in a public place because I know that my immune system is not fully functional. One of the theories floating around the scientific community at the moment is that the Delta and other variants came about when Covid crossed with an immunocompromised person, who may or may not have been fully vaccinated.
Unfortunately, I can’t always do this. Here are just a few symptoms I have to deal with on a daily basis:
- intolerance of heat and cold
- intolerance of physical activity
- joint and muscle pain (inflammation)
- digestive problems
- chronic fatigue
- heart palpitations
- brain fog
- short term memory loss
So let’s break that list down. The best way I can describe it is that my body over reacts to stimulation because my immune system is always in overdrive. So if you are warm, I’m probably uncomfortably hot. If you’re cool, I’m probably shivering. What feels like a gentle stroll down the block to you feels like a 5K to me.
This means that masking up can be impossible for me in some situations, like moving. When we had help, I tried to social distance as much as I could, because my choice was between breathing and masking. Mask on was too hot. I would overheat and tire out faster, so I had to leave it off even though I didn’t want to. Thankfully, most of our help was both vaccinated and able to wear masks while working.
The hardest part of all of this has been the loss of independence. I’m lucky; I’m still able to do most things on my own. But due to my fatigue, the pain, I can’t be as physically active as I used to be. For someone who would bike for 6-8 hours a day, or jog for miles, this has been so hard. I have to ask for help. Something as simple as vacuuming can sap my energy and require a nap, so you can imagine what moving has been like.
On Sunday, we were supposed to have movers helping us load the truck. When they didn’t show or call, we cancelled the appointment and booked a different company, who also didn’t show. We continued to work on our own, calling around to anyone we could think of. Finally, at 9pm, we were able to get help from Craigslist and a few friends. But by then, Ash and I were both exhausted. Ash had an allergic reaction to our dinner, so she was completely out of commission. I was running on adrenaline and chocolate. I’d hit exhaustion hours before, but knew I had to keep going.
And that was when I found out just how bad it is when I ignore my body. I’ve had to listen to it closely over the past few weeks, learning what triggers a flare, and what might help calm it down. But that night, I had no choice. We were supposed to be out of the apartment that night. We were out of time, out of money, and we couldn’t ask our friends for more than they’d already given. So I kept going.
In between staging and sorting, I’d sit down in front of the fan. Then I would lay down. Until finally, I couldn’t get up. My nausea was so bad, I thought I would be sick if I moved even a little.
Then, I started shaking. I don’t know why, but ever since I was a kid, if I’m tired and stressed, I will start to shake. Normally, it’s not so bad. It’s like a shiver, even if I’m not cold. It usually lasts about 10 minutes and then goes away.
But this time, it didn’t. I lay on the floor shaking for over an hour, unable to move. Our helpers knew I was exhausted, so they left me be, checking on me every once in a while.
At one point, I remembered my weighted blanket was in a box nearby. I crawled over to it, pulled out the blanket, and curled up on the floor convinced I was going to puke. That was when they called Ash to come get me. My speech was slurred as I apologized for not doing more. I shuffled out on unsteady legs, wrapped in my blanket. Ash had to carry my water and my keys because I couldn’t even hold them. I went back to our new apartment, where my bed had already been set up, and Ash gave me pain killers and water. Once I was in a quiet place and could rehydrate, I started to feel better. My stomach started to settle. I slept a solid eight hours, and the next morning felt human, if sore.
So this is why I have to ask for help; because my body has told me–loudly–that I can’t do it any more. I am physically not the person I was ten years ago. It hurts. I’ve had to grieve that loss as I adjust to what normal means for me now, which is on a continual sliding scale. If you’ve ever dealt with chronic pain or fatigue, then you know that not every day is equal. You can do everything right and still go into a major flare. You can be fine one day, and the next have trouble getting out of bed. You can have a great morning, then have to crawl back into bed by lunch and stay there for three hours.
It is a hard road. It changes every day, it’s rough and difficult to walk, and it’s different for every person with this diagnosis. Some people go back to “normal.” Some don’t. Time will tell if I get more of my energy back. In the mean time, I have to take care of myself, listen to my symptoms, do what I can, and ask for help when I can’t.