A Day in My Life With Fibromyalgia

It’s 6:30 a.m. and my partner is leaving for work. I wake up after what should be a full eight hours of sleep, but as usual, I woke up a few times during the night. I don’t feel ready to get out of bed as the tiredness from the night before still hasn’t left me. My head hurts, and my body aches all over. I lay in bed scrolling on Facebook to stimulate my mind enough to wake up.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

After some funny animal videos or getting sucked into the many rabbit holes of the internet, I realize I need to get up to take my medication otherwise it’s going to be a tough day. I take my morning dose of PEA (palmitoylethanolamide). It is known to help many people with fibromyalgia, and my life was much harder before I started taking it. If I forget to take it I will pay the price. I take my dose in the morning, then head downstairs to make breakfast. I get so hungry in the mornings, I couldn’t possibly stay in bed. If I don’t eat I start to get the shakes and sweats, and that never goes well for me.

I eat the same thing for breakfast every day. It has to be high enough in fiber to keep my bowel movements going, but low enough on carbs and gluten so that I don’t react badly. There is a careful balance I have to achieve otherwise my IBS (irritable bowel syndrome) will flare up and I could have a rough time. I regretted eating two slices of toast one morning, that’s for sure. Sometimes I look up to 3 months pregnant because of how bloated I am.

It’s 7:30 a.m. and I eat my breakfast on the couch, where I can put my feet up and watch TV. I have to have my feet up when I sit down, or my legs will become very stiff and sore. Luckily I’ve got a very comfy recliner seat, topped with a cushion and a massager.

After relaxing with breakfast and TV, I will go back upstairs for my morning shower. I feel like I need to shower every morning just to wake up properly, but also because I get overly sweaty during the night as my body’s thermostat is broken. Every time I shower I will sit on my shower stool, otherwise my legs will become swollen and sore from standing up. I sit down on my stool and rest my feet on the wall, scrubbing my legs upwards to improve my circulation. I do everything in the shower, from washing my face to brushing my teeth, just so I don’t have to stand up to do those things.

After my shower, I wrap myself in a towel and head straight for bed. I lay on my bed with my feet resting up on the wall and I watch all the blood flow from my feet back into my body. “That’s better,” I think to myself. “Maybe I should just stay upside down forever.” By this point it’s easy for me to get stuck laying on my bed, wrapped in a towel… but then I get up and get dressed because I want to achieve something for myself.

I fill my day with random activities, whether that’s editing videos, playing games, gardening, cleaning or looking for jobs. I’m unemployed right now, which means I have to be actively looking for work to receive any support payments. Unfortunately, fibromyalgia is not recognized as a disability in my country, so I would not be eligible for disability support payments. That means I have to look for work, which also means that eventually, I will have to work.

My last job was a contract job that ended in December. That job was good because I could work from home, but I realized sitting at my desk all day made my pain so much worse. I’m not good at sitting down for too long, just like standing up for too long — or really, just doing anything for too long.

It’s hard to find work at the moment given the current state of the world, but now it seems like everybody else is also looking for work. There is a bit of an emotional toll for being unemployed, too. I have two degrees and enough experience to land a very good job, but I can’t find one. I feel like I have so much to give and my skills are wasting away. There is also the added concern of working in general with fibromyalgia. I try to refrain from disclosing my condition unless I believe it’s absolutely necessary. I’ve realized that any work I do will have an impact on me. Whether it’s a desk job or a more physical job, I’m going to struggle no matter what I do. Everything I do takes a toll on my body in some way; that’s the reality of living with fibromyalgia.

I’ve become so accustomed to my pain that it is now normal for me. What is normal for me often sounds like an absolute nightmare to a healthy person. When someone finds out that every single muscle in my body is aching like I’ve got a really bad flu, they might assume I can’t do anything. This is why I’m afraid of disclosing my condition. I recently applied for a physical job that almost forced me to disclose my condition as part of the safety induction, otherwise, I’d be lying. I don’t feel comfortable lying, so I had to tell the truth. Now I’m anxious to hear if I’ve got the job or not, thinking they might not want me now that they know.

The truth is though, I am never 100%. I will never be 100%. I never feel completely great, to the point that feeling great for me would feel terrible for someone else. I’m going to struggle with any work I do, but I have to work because I can’t qualify for disability.

I do little things during my day to make me happy. That could be feeding the wild birds that visit me, using essential oils in my diffuser to make the house smell nice, or trying something new such as wood burning art. Those little things help to distract me from the constant aches and pains I feel all over my body. It helps to keep busy, and it also helps to maintain a level of variety throughout my day.

One thing that is recognized where I live, is that people with fibromyalgia cannot thermoregulate the way healthy people can. It’s great that there is some recognition there, because that has allowed me to get a concession for my electricity bill to cover air conditioning… but there is a catch. I have to be receiving support payments to be eligible for the concession, but I have to be looking for work for that. In fact, my life is just the ultimate catch 22.

My partner gets home from work by 4 p.m. and we relax with a pot of tea watching TV. She looks after me and makes me dinner every night, because she knows I struggle to stand for too long to manage cooking. Without her, I think I’d be eating a lot of pre-made meals, to be honest. She watches over me with concern as I wince with pain, which is usually worse at the end of the day. I feel like there are sharp stabbing pains migrating throughout my body. Before bed, I’ll take another dose of PEA along with some magnesium, and then do my best to fall asleep.

Sometimes it doesn’t matter how tired I am, I still struggle to fall asleep. My body can’t relax. My mind can’t unwind. My legs hurt, or I have to pee constantly. It’s too hot, I’m too sweaty. My partner can feel the heat radiating off me and says, “You’re my little furnace,” and I chuckle. Eventually, I pass out and hope that my headache will go away with some sleep, only to wake up with a headache again the next morning… and the cycle continues. The never-ending cycle.

I could be angry about it, but I’m not. I live my life in the present moment. All I can do is the best I can. There is no looking back at the life I had, or the things I used to be able to do. I exist and I am happy about it, so that’s all that really matters.