Now, don’t get me wrong. I want to say first of all, that I am very aware that people have it MUCH worse than me. And I do recognise that my symptoms of fibromyalgia are mild compared to many others. But that doesn’t mean that I don’t have my own battles. I’m lucky, my pains never gone above a 6.5/7 And most days it’s at a 2/3.
But that being said, November is always my worst month. Although the pain has been at around a 5 (Again, not awful but it has gone up to a 7). It’s been constant. Pain I can push through, pain is something I’ve handled in some form most of my life. What I can’t push through is the fatigue. Today, wasn’t a good day. Its the 26th of November and it is safe to say that I have had some form of pain since the 15th. Today, the pain was less and manageable, that I was grateful for.
However, yesterday my mental health took a plummet and I didn’t know why. It’s potentially that I did my last shift at the care home for quite some time and I start this new job on Monday (which I am both excited and terrified of). I woke up in a fairly alright mood and then I ended up in an argument with my fiancé, which sucked (we’re fine and it wasn’t a real argument it’s just not something we do often so has upset both of us).
I also realised that it was my support group session which I had forgotten about until they sent the email the other day! I decided to go as I needed to get out the house. I managed to go, and was excited as we were doing meditation, which is something I swear by! I don’t do multiple sessions a day but I found when I was really ill (pre-diagnosis) and had bad anxiety both Headspace end of the day combined with the Sleepy Podcast (available of Spotify and Patreon) really helped both calm me and get me to sleep. On my better days I just listen to the end of the day session. I didn’t realise how exhausted I was (despite spending my last £5 on a taxi there) until we started doing the second lot of meditation towards the end and kept almost falling asleep! Thankfully I was lucky to keep myself conscious but was a little grateful that I wasn’t the only one who struggled to keep awake at the end. However I knew I didn’t have enough money to get a taxi home so I walked the 10 minute walk to the bus stop. That was enough to kill me off. By the time I got to the bus stop I could feel the fatigue all over and despite being on the phone to my fiancé (we had smoothed things out by this point) I was struggling to both keep up with the conversation and keep the conversation as a whole.
I got home, rang my new manager to talk about my first day and had lunch. Only to fall asleep on the sofa. I tried watching cat TikTok videos on my phone and failed so I knew TV and reading was out of the question. I knew I didn’t have the concentration for knitting or Animal Crossing (Slow Nintendo Switch Game) and I knew I wasn’t going to make it up the stairs to make it to a paint brush let alone paint.
I don’t know if you’ve ever been so tired that you’ve had to fight for consciousness. But that’s what I had for the next 2.5 hours. I stared at my front door curled up under my blanket on the sofa because I knew I couldn’t make it up the stairs. I wanted to sleep so badly, I wanted to give in. But I knew I couldn’t, I knew it would start a vicious cycle. Because I would sleep, but then I would stay up until 2/3am. But doing that would then trigger my anxiety, my depression and insomnia and only slept in the day time. Only to then eventually trigger another and far worse flare up in the long run.
So I think I dozed off for 10 minutes a couple of times. But for the most part, I stared at my front door, being reminded how exhausted I actually got. It’s very rare I get flares like this (like I said though, November is my worst month and I would have put money on having a bad one at some point). I think as lucky as I am to be mild, I also see both ends. So I can have almost-normal days. But I can also have really bad days and I was grateful at around 16:30 when I could at least sit on my phone for abit and eventually watch the TV.
It is so hard to explain to a non-spoonie/Chronically Ill person that some days, chewing takes energy, breathing takes energy. Standing up, is not always an option because you feel like your legs might collapse at any moment. Sometimes just staying awake is a battle. Sometimes remaining conscious is a battle that you can’t always win. I did today, but there’s plenty of times I haven’t. Tomorrow is going to be a bed day. I just hope it’s a good one.
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