Being in the worst flare I've had in years!
Hi there!
Starting at the end of January I spent 3 weeks in a flare. A flare (in the chronic illness world) is when my normal day-to-day symptoms get worse, and some new ones come along to play. This was the worst flare I've had in years, and I have some thoughts about it I want to share. But so you can understand it better I first have to quickly explain my "normal". I was thinking about writing a separate blogpost talking about my health as it currently stands, so I could refer back to that to show my baseline. But I don't have the energy to do that currently, so I'll give you the quick version.
I have fibromyalgia, chronic fatigue (possible ME) and IBS. Those together mean my daily pain hovers between a 3 and a 5, and I call that manageable. If I push myself it goes higher into the non manageable number (anything over a 5), and I have to stop what I'm doing because of pain. Along with pain, my worst symptom is fatigue. Fatigue to me means I only have between 2 and 4 hours a day where I'm not lying horizontal. And everything involving moving any part of my body, even just my hands when writing, takes energy. At an average day my fatigue means I have to rest and take breaks every hour, and I can't rush tasks. Things like getting ready in the morning takes 45 minutes, and making food can easily take close to an hour. If I push myself my fatigue makes it so I can't think properly, I slur my speech and mix up my words, moving my body feels like wading through water and sometimes honey, and sending messages from one part of my body to another (like if I'm walking the messages include lift up foot, move forward, put foot down) sometimes skips, so I end up only getting half the message across. (And if it includes walking I end up dragging my feet not lifting them, because if I lift them up with every step I fall). IBS (Irritable Bowl Syndrome) is just a quick way of saying I have diarrhoea, nausea, stomach pain and unexplained food sensitivities. But no allergies or intolerances have been found. In short, on a good day I feel like a semi functioning zombie, and I'm lucky if I can get half my to-do list done. On a bad day I can barely get out of bed.
This flare had me so exhausted I had to rest after eating. Most days I was so fatigued I could barely stay awake, but because of the pain I also wasn't able to sleep. That meant I spent pretty much everyday for 3 weeks lying in bed, watching YouTube, and wishing I could take a nap. But I couldn't. My pain was so bad I had to actively work to move my body as little as possible. I couldn't even sit up in bed! Every time I stood up to go to the bathroom, I got super dizzy and almost passed out. I had to use my rollator every time I moved from one room to another just to keep myself upright and to avoid falling with every step. I couldn't make any meals, and had barely enough energy to eat the food prepared for me. Most of the food I ate in these 3 weeks were food I didn't have to use cutlery to eat, as I couldn't hold on to a fork or spoon properly. I also had to cancel physical therapy 3 weeks in a row, because I couldn't get down the stairs. One of the weeks I made it down into the car, and we were half way there when all my energy left me, and we had to go back home. I almost didn't make it up the stairs.
These 3 weeks also brought my anxiety forward a bit. I've struggled with anxiety and panic attacks in the past, but consider them now under control. But one of the things that brings my anxiety back every time is whenever my health takes a dip, and I end up almost as sick as I was when I first got sick, back in 2011. Ever since my health got a bit better back in 2014-2015 compared to how bad it was, I've always been afraid of having a set back and be back to when I slept up to 20 hours a day, and barely ate anything. This flare was the closest I've been to that in many years, and it terrified me.
I do know why I ended up in a flare. I got sick after Christmas, and after all my symptoms disappeared in January I started to go back to my normal level of activity. I should've realised at the time that me feeling good so soon after being so sick was too good to be true. Not even 2 weeks after I started feeling well again, my flare sent me back to bed, more sick now than when I was actually sick. It took 3 weeks for me to be able to get out of bed, and a further 4 weeks to feel somewhat back to normal.
I'm now mostly back to my normal, but because of the pandemic I've had to stop going to therapy and my quality of life is suffering as a consequence. It does seem that my daily level of pain has increased since I was in this flare, so that's not fun. But it is what it is.
-Anja
Starting at the end of January I spent 3 weeks in a flare. A flare (in the chronic illness world) is when my normal day-to-day symptoms get worse, and some new ones come along to play. This was the worst flare I've had in years, and I have some thoughts about it I want to share. But so you can understand it better I first have to quickly explain my "normal". I was thinking about writing a separate blogpost talking about my health as it currently stands, so I could refer back to that to show my baseline. But I don't have the energy to do that currently, so I'll give you the quick version.
I have fibromyalgia, chronic fatigue (possible ME) and IBS. Those together mean my daily pain hovers between a 3 and a 5, and I call that manageable. If I push myself it goes higher into the non manageable number (anything over a 5), and I have to stop what I'm doing because of pain. Along with pain, my worst symptom is fatigue. Fatigue to me means I only have between 2 and 4 hours a day where I'm not lying horizontal. And everything involving moving any part of my body, even just my hands when writing, takes energy. At an average day my fatigue means I have to rest and take breaks every hour, and I can't rush tasks. Things like getting ready in the morning takes 45 minutes, and making food can easily take close to an hour. If I push myself my fatigue makes it so I can't think properly, I slur my speech and mix up my words, moving my body feels like wading through water and sometimes honey, and sending messages from one part of my body to another (like if I'm walking the messages include lift up foot, move forward, put foot down) sometimes skips, so I end up only getting half the message across. (And if it includes walking I end up dragging my feet not lifting them, because if I lift them up with every step I fall). IBS (Irritable Bowl Syndrome) is just a quick way of saying I have diarrhoea, nausea, stomach pain and unexplained food sensitivities. But no allergies or intolerances have been found. In short, on a good day I feel like a semi functioning zombie, and I'm lucky if I can get half my to-do list done. On a bad day I can barely get out of bed.
This flare had me so exhausted I had to rest after eating. Most days I was so fatigued I could barely stay awake, but because of the pain I also wasn't able to sleep. That meant I spent pretty much everyday for 3 weeks lying in bed, watching YouTube, and wishing I could take a nap. But I couldn't. My pain was so bad I had to actively work to move my body as little as possible. I couldn't even sit up in bed! Every time I stood up to go to the bathroom, I got super dizzy and almost passed out. I had to use my rollator every time I moved from one room to another just to keep myself upright and to avoid falling with every step. I couldn't make any meals, and had barely enough energy to eat the food prepared for me. Most of the food I ate in these 3 weeks were food I didn't have to use cutlery to eat, as I couldn't hold on to a fork or spoon properly. I also had to cancel physical therapy 3 weeks in a row, because I couldn't get down the stairs. One of the weeks I made it down into the car, and we were half way there when all my energy left me, and we had to go back home. I almost didn't make it up the stairs.
These 3 weeks also brought my anxiety forward a bit. I've struggled with anxiety and panic attacks in the past, but consider them now under control. But one of the things that brings my anxiety back every time is whenever my health takes a dip, and I end up almost as sick as I was when I first got sick, back in 2011. Ever since my health got a bit better back in 2014-2015 compared to how bad it was, I've always been afraid of having a set back and be back to when I slept up to 20 hours a day, and barely ate anything. This flare was the closest I've been to that in many years, and it terrified me.
I do know why I ended up in a flare. I got sick after Christmas, and after all my symptoms disappeared in January I started to go back to my normal level of activity. I should've realised at the time that me feeling good so soon after being so sick was too good to be true. Not even 2 weeks after I started feeling well again, my flare sent me back to bed, more sick now than when I was actually sick. It took 3 weeks for me to be able to get out of bed, and a further 4 weeks to feel somewhat back to normal.
I'm now mostly back to my normal, but because of the pandemic I've had to stop going to therapy and my quality of life is suffering as a consequence. It does seem that my daily level of pain has increased since I was in this flare, so that's not fun. But it is what it is.
-Anja
Comments
Post a Comment