Balance
Systemic Mastocytosis requires a delicate balance of rest, diet and medications in order to keep my body as stable as possible. In addition to managing my medications closely, I need to effectively monitor and manage my use of energy.
If my energy gets too low, my health crashes into anaphylaxis, neurological issues and/or miserable intestinal issues. If I cut back on rest, I struggle with the same problems. If I stray from my diet... same thing. If I forget a dose of medications... same thing.
After well over a decade of managing my own health, I'm pretty good at listening to what my body is telling me about my health because, if I don't, my health often will cascade out of control before I even get a chance to throw specific extra medications at the problem. Sometimes, however, things can get out of control for no known reason... today was one of those times.
I had a fairly productive morning doing a few little things that are all hobby-related. This kind of stuff isn't taxing nor all that tiring so it is a good thing to keep me busy when I am feeling halfway decent. Today, I had a fairly productive morning with a few hobbies.
I heated up some lunch, ate lunch and cleaned up lunch. I still noticed no big problems with my health. Actually, I was feeling so well that I was contemplating heading outdoors to see if I could accomplish something with our home renovations! I knew we'd be back at the hospital for Sheila's cancer treatment in a few days so I didn't want to take a chance in overdoing it for fear of needing to recover when Sheila needed to be back at the hospital. I decided to just lay low... watch some news about the hurricane down in the southeast... and do some reading until I fell asleep for a nap.
After hitting the couch I slept for almost four hours. That was the first surprise and clue that perhaps something wasn't exactly right with my health. On a good day, I usually only require about a two hour nap. My naps doubling unexpectedly is never a good sign.
When I awoke from this four hour nap, I was a bit groggy... sort of 'out-of-it'... I felt drained and spent... I felt "weird" but I couldn't put my finger on a specific problem but, at this point, I was thinking that it was good that I didn't push myself earlier after lunch.
The next thing I knew it was almost 6:30pm. Sheila was home from work and we hadn't even discussed what to do about dinner. I was still feeling weird and out-of-it but didn't pay much attention to it but I guess I still felt it would be best to lay low so we stayed in and ordered some dinner for delivery.
Before long, my health was crashing.
My whole body was hurting... my bones were aching, my muscles were aching... and I still just "wasn't feeling right". Whenever I feel like this I should just jump into some emergency medications but I am never thinking clearly enough during these periods to have this sort of insight. Instead, I continue to notice a deterioration of my health until it is too late.
"Too late" means I have more than two symptoms. The rule to stay safe with Systemic Mastocytosis is to jump into emergency medications whenever I experience two symptoms simultaneously. I waited too long tonight.
In addition to the above mentioned symptoms, I started experiencing itching... terrible itching on my tongue! I was so itchy on my tongue that I was biting my tongue to try to relieve the itching! The aches and pains were getting worse. My "not-feeling-right" feeling was noticeably worse too. I was experiencing intestinal issues. Now my health was beginning that spiraling cascade out of control.
It was around this point that I realized that I should have taken some emergency medications quite a while ago. Then I was quickly distracted again by something silly... within a few moments, my body reminded me again that I needed to jump extra medications. This time I grabbed my medications and pulled out a few emergency options.
I wasn't thinking clearly and this too is a common symptom.
After two doses of emergency medications the itchy tongue began to calm down. That was a relief.
An hour or so later, when it was time to sort out my bedtime medications, I also added a bunch of extra stuff. I'll need to lay low for the rest of the week if the past is any indicator of things.
Sometimes this delicate balance of rest, diet and medications gets thrown out of whack. Sometimes I can tell what went wrong and why... sometimes there seems to be no reason whatsoever.
In the end, though, it really doesn't take much to throw things out of balance.
If my energy gets too low, my health crashes into anaphylaxis, neurological issues and/or miserable intestinal issues. If I cut back on rest, I struggle with the same problems. If I stray from my diet... same thing. If I forget a dose of medications... same thing.
After well over a decade of managing my own health, I'm pretty good at listening to what my body is telling me about my health because, if I don't, my health often will cascade out of control before I even get a chance to throw specific extra medications at the problem. Sometimes, however, things can get out of control for no known reason... today was one of those times.
I had a fairly productive morning doing a few little things that are all hobby-related. This kind of stuff isn't taxing nor all that tiring so it is a good thing to keep me busy when I am feeling halfway decent. Today, I had a fairly productive morning with a few hobbies.
I heated up some lunch, ate lunch and cleaned up lunch. I still noticed no big problems with my health. Actually, I was feeling so well that I was contemplating heading outdoors to see if I could accomplish something with our home renovations! I knew we'd be back at the hospital for Sheila's cancer treatment in a few days so I didn't want to take a chance in overdoing it for fear of needing to recover when Sheila needed to be back at the hospital. I decided to just lay low... watch some news about the hurricane down in the southeast... and do some reading until I fell asleep for a nap.
After hitting the couch I slept for almost four hours. That was the first surprise and clue that perhaps something wasn't exactly right with my health. On a good day, I usually only require about a two hour nap. My naps doubling unexpectedly is never a good sign.
When I awoke from this four hour nap, I was a bit groggy... sort of 'out-of-it'... I felt drained and spent... I felt "weird" but I couldn't put my finger on a specific problem but, at this point, I was thinking that it was good that I didn't push myself earlier after lunch.
The next thing I knew it was almost 6:30pm. Sheila was home from work and we hadn't even discussed what to do about dinner. I was still feeling weird and out-of-it but didn't pay much attention to it but I guess I still felt it would be best to lay low so we stayed in and ordered some dinner for delivery.
Before long, my health was crashing.
My whole body was hurting... my bones were aching, my muscles were aching... and I still just "wasn't feeling right". Whenever I feel like this I should just jump into some emergency medications but I am never thinking clearly enough during these periods to have this sort of insight. Instead, I continue to notice a deterioration of my health until it is too late.
"Too late" means I have more than two symptoms. The rule to stay safe with Systemic Mastocytosis is to jump into emergency medications whenever I experience two symptoms simultaneously. I waited too long tonight.
In addition to the above mentioned symptoms, I started experiencing itching... terrible itching on my tongue! I was so itchy on my tongue that I was biting my tongue to try to relieve the itching! The aches and pains were getting worse. My "not-feeling-right" feeling was noticeably worse too. I was experiencing intestinal issues. Now my health was beginning that spiraling cascade out of control.
It was around this point that I realized that I should have taken some emergency medications quite a while ago. Then I was quickly distracted again by something silly... within a few moments, my body reminded me again that I needed to jump extra medications. This time I grabbed my medications and pulled out a few emergency options.
I wasn't thinking clearly and this too is a common symptom.
After two doses of emergency medications the itchy tongue began to calm down. That was a relief.
An hour or so later, when it was time to sort out my bedtime medications, I also added a bunch of extra stuff. I'll need to lay low for the rest of the week if the past is any indicator of things.
Sometimes this delicate balance of rest, diet and medications gets thrown out of whack. Sometimes I can tell what went wrong and why... sometimes there seems to be no reason whatsoever.
In the end, though, it really doesn't take much to throw things out of balance.
Comments
Post a Comment