What a Miserable Night
The past few days, my level of overwhelming fatigue was so... well, overwhelming... that I couldn't help but wonder if I had enough energy left to recover. How low does one's energy level need to get that I actually wonder whether you can find the energy to recover? I don't know the precise answer to this question but I do know that it is exceptionally, frighteningly low.
I sometimes forget that this overwhelming fatigue is also an active symptom of my illness and not simply a result of wearing myself down.
This time, I did also wear myself down. Between the long rail trip and then some activity around the house, I definitely wore myself out. I definitely over-did it. History has proven that when I get worn out from this crazy amount of activity, it can take months to recover.
This fatigue, however, can also be a symptom and a clue to impending poor health... a clue to a cascading mast cell degranulation event leading to anaphylaxis... this is what happened last night but was masked by the overwhelming fatigue I had been struggling with since our long rail journey.
We had been to the grocery store earlier in the evening and I was clearly more fatigued than usual. I couldn't carry anything and needed help. I "looked" well... but I was hurting and struggling to be as self-sufficient as possible.
By bedtime, I was having difficulty getting up out of my seat, walking across a room, and I was gasping for air. Breathing was becoming alarmingly difficult.
When we moved to the bedroom, it hit me... I knew that I should have been paying closer attention to all these little signs. Suddenly I felt as though someone punched me in the chest and knocked the wind out of me. I needed to find my emergency medications... epinephrine and more potent medications... I didn't have them and couldn't find them. I had put them on the nightstand the night before and forgot to put them back where they belong (in my pockets) when I got up in the morning. Perhaps I wasn't thinking clearly?
As the pain similar to getting the wind knocked out of me intensified, I made my way across the room to the epinephrine. I couldn't breath... air was just moving in and out of my mouth without any oxygen making it to my lungs... the air moved quickly and far too easily... I was lightheaded and dizzy... my vision was narrowing...
After some epinephrine, I added some potent emergency medications. (Which promise to keep me extremely drowsy for the next few days.) Then the nausea and stomach pain started...
I was in and out of the bathroom three times last night with some rather lousy gastro-intestinal issues. After the second trip, I added an anti-nausea medication to my growing list of medications for the night. Even after my third, extended visit to the bathroom, sick, I still didn't feel my health was ready for bed but I couldn't keep my eyes open any longer.
My body hurts... my whole body.... down to my bones and deep into my joints... all my muscles ache... I have pain in the area of my kidneys so I suspect my mast cells decided to go nuts and attack something in the area of my kidneys... degranulate... dumping all of the different mediators into my body causing all the cascading symptoms... this pain will linger for days because this mast cell degranulation causes nerve irritation and, right now, I'm feeling it in the area of my kidneys... and my bones... and my joints...
Breathing is still difficult today but better than it was last night. I'm exhausted, feeling as though I ran a marathon, then was hit by a fast-moving truck... this, on top of the overwhelming fatigue.
My body just wants to sleep but my head is saying, "Let's do a photography project...", "Let's work out in the yard...", "Let's start on our outdoor kitchen project...", "Let's work on a model railroading project...", "Let's get the sailboat ready for the lake...", "Let's draw up plans for the next home renovations..."... my head clearly is not communicating with my body.
I need rest... I need more extra medications... and I need to recover... which, in the end, means a tremendous amount of nothingness and wasted time...
I sometimes forget that this overwhelming fatigue is also an active symptom of my illness and not simply a result of wearing myself down.
This time, I did also wear myself down. Between the long rail trip and then some activity around the house, I definitely wore myself out. I definitely over-did it. History has proven that when I get worn out from this crazy amount of activity, it can take months to recover.
This fatigue, however, can also be a symptom and a clue to impending poor health... a clue to a cascading mast cell degranulation event leading to anaphylaxis... this is what happened last night but was masked by the overwhelming fatigue I had been struggling with since our long rail journey.
We had been to the grocery store earlier in the evening and I was clearly more fatigued than usual. I couldn't carry anything and needed help. I "looked" well... but I was hurting and struggling to be as self-sufficient as possible.
By bedtime, I was having difficulty getting up out of my seat, walking across a room, and I was gasping for air. Breathing was becoming alarmingly difficult.
When we moved to the bedroom, it hit me... I knew that I should have been paying closer attention to all these little signs. Suddenly I felt as though someone punched me in the chest and knocked the wind out of me. I needed to find my emergency medications... epinephrine and more potent medications... I didn't have them and couldn't find them. I had put them on the nightstand the night before and forgot to put them back where they belong (in my pockets) when I got up in the morning. Perhaps I wasn't thinking clearly?
As the pain similar to getting the wind knocked out of me intensified, I made my way across the room to the epinephrine. I couldn't breath... air was just moving in and out of my mouth without any oxygen making it to my lungs... the air moved quickly and far too easily... I was lightheaded and dizzy... my vision was narrowing...
After some epinephrine, I added some potent emergency medications. (Which promise to keep me extremely drowsy for the next few days.) Then the nausea and stomach pain started...
I was in and out of the bathroom three times last night with some rather lousy gastro-intestinal issues. After the second trip, I added an anti-nausea medication to my growing list of medications for the night. Even after my third, extended visit to the bathroom, sick, I still didn't feel my health was ready for bed but I couldn't keep my eyes open any longer.
My body hurts... my whole body.... down to my bones and deep into my joints... all my muscles ache... I have pain in the area of my kidneys so I suspect my mast cells decided to go nuts and attack something in the area of my kidneys... degranulate... dumping all of the different mediators into my body causing all the cascading symptoms... this pain will linger for days because this mast cell degranulation causes nerve irritation and, right now, I'm feeling it in the area of my kidneys... and my bones... and my joints...
Breathing is still difficult today but better than it was last night. I'm exhausted, feeling as though I ran a marathon, then was hit by a fast-moving truck... this, on top of the overwhelming fatigue.
My body just wants to sleep but my head is saying, "Let's do a photography project...", "Let's work out in the yard...", "Let's start on our outdoor kitchen project...", "Let's work on a model railroading project...", "Let's get the sailboat ready for the lake...", "Let's draw up plans for the next home renovations..."... my head clearly is not communicating with my body.
I need rest... I need more extra medications... and I need to recover... which, in the end, means a tremendous amount of nothingness and wasted time...
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