Missing All The Signs
Far too often, I completely miss the signs preceding Systemic Mastocytosis episodes. Today was another one of these times of missed clues.
I had a few dizzy spells late in the afternoon... This should have been a huge indicator of failing health.
I strayed from my strict diet today by eating leftovers for lunch followed by processed food and condiments which are highly restricted for dinner... I know better and after straying from my strict diet for two consecutive meals I should have preempted any decline in health with extra medications.
I awoke from my three hour afternoon nap in a very warm bedroom... the temperature in the bedroom was in the upper 70s which alone is more than enough to cause anaphylaxia and a violent reaction. I should have known this would lead to crashing health.
Any one of these things should have caused me to immediately jump on taking extra medications... powerful medications... and to collect my emergency medications. I think I have fallen into the dangers of getting too used to a 'new normal'.
I have been so ill for so long that this has become my normal, everyday life. Difficulty breathing? Ummmph.... this happens a few times each week.
Abdominal cramping and disorienting nausea with uncontrollable, slimy, explosive diarrhea while trying to hold back vomit? Ummmph... this happens at least once a week.
Neurological symptoms like tremors, numbness, tingling, vision problems, weakness in one limb or another or all, and cognitive difficulties? Ummmph... this is almost a daily occurrence.
Dizziness, lightheadedness and fainting due to anaphylaxia causing my blood pressure to drop to dangerous levels? Ummmph... this happens a few times each month and even happens in my sleep!
I have been through all of this so often, for many years, that this has become routine. This is my everyday life. This is my 'new normal'. Because this type of health is now 'normal' for me, I tend to have a very lackadaisical and casual attitude toward the seriousness and urgency of these dangerous health conditions. This is especially true after a few consecutive 'good' days like I have just experienced.
Then, after the episode passes, I am left feeling as though I ran a full 100 mile Ironman course, unprepared, and then was run over by a truck just before crossing the finish line. I am left in pain... my bones hurt to the touch... my muscles ache beyond any type of description I could put together with mere words... my joints hurt so bad that just the simple act of walking across a room is excruciatingly painful.
Even after I finally recover from the physical symptoms which last days or weeks, the emotional symptoms continue. I lose faith in my own body. I don't trust my body enough to wander from the house. What if the nausea, cramping, abdominal pain and diarrhea hit me while I am away from the house? Unfortunately, I know the answer. I simply don't trust my body enough to wander out of sight of an available bathroom.
Anyway, once again, my health has failed tonight... I'm left in pain, weak, exhausted, nauseated, and with absolutely no faith in my body. Even after describing this as I have here, I still feel as though I have not accurately described how violent, wretching and demoralizing this illness is on a far too regular basis.
This illness has become so normal that I often miss the clear signs of impending doom... the signs and symptoms have become normalcy...
Additional Reading:
Since I feel I am having difficulty accurately describing this illness, here is a blog written by another patient. Unfortunately, he has not written in a couple of years but the last few posts do give one an idea of what it is like to be hammered by this illness...
http://livingwithmastocytosis.blogspot.com/
Also, here is some very basic info about Mastocytosis... I have both Diffuse Cutaneous Mastocytosis and Diffuse Systemic Mastocytosis (experiencing one apparently wasn't enough for me)...
http://www.knowcancer.com/oncology/mastocytosis/
I had a few dizzy spells late in the afternoon... This should have been a huge indicator of failing health.
I strayed from my strict diet today by eating leftovers for lunch followed by processed food and condiments which are highly restricted for dinner... I know better and after straying from my strict diet for two consecutive meals I should have preempted any decline in health with extra medications.
I awoke from my three hour afternoon nap in a very warm bedroom... the temperature in the bedroom was in the upper 70s which alone is more than enough to cause anaphylaxia and a violent reaction. I should have known this would lead to crashing health.
Any one of these things should have caused me to immediately jump on taking extra medications... powerful medications... and to collect my emergency medications. I think I have fallen into the dangers of getting too used to a 'new normal'.
I have been so ill for so long that this has become my normal, everyday life. Difficulty breathing? Ummmph.... this happens a few times each week.
Abdominal cramping and disorienting nausea with uncontrollable, slimy, explosive diarrhea while trying to hold back vomit? Ummmph... this happens at least once a week.
Neurological symptoms like tremors, numbness, tingling, vision problems, weakness in one limb or another or all, and cognitive difficulties? Ummmph... this is almost a daily occurrence.
Dizziness, lightheadedness and fainting due to anaphylaxia causing my blood pressure to drop to dangerous levels? Ummmph... this happens a few times each month and even happens in my sleep!
I have been through all of this so often, for many years, that this has become routine. This is my everyday life. This is my 'new normal'. Because this type of health is now 'normal' for me, I tend to have a very lackadaisical and casual attitude toward the seriousness and urgency of these dangerous health conditions. This is especially true after a few consecutive 'good' days like I have just experienced.
Then, after the episode passes, I am left feeling as though I ran a full 100 mile Ironman course, unprepared, and then was run over by a truck just before crossing the finish line. I am left in pain... my bones hurt to the touch... my muscles ache beyond any type of description I could put together with mere words... my joints hurt so bad that just the simple act of walking across a room is excruciatingly painful.
Even after I finally recover from the physical symptoms which last days or weeks, the emotional symptoms continue. I lose faith in my own body. I don't trust my body enough to wander from the house. What if the nausea, cramping, abdominal pain and diarrhea hit me while I am away from the house? Unfortunately, I know the answer. I simply don't trust my body enough to wander out of sight of an available bathroom.
Anyway, once again, my health has failed tonight... I'm left in pain, weak, exhausted, nauseated, and with absolutely no faith in my body. Even after describing this as I have here, I still feel as though I have not accurately described how violent, wretching and demoralizing this illness is on a far too regular basis.
This illness has become so normal that I often miss the clear signs of impending doom... the signs and symptoms have become normalcy...
Additional Reading:
Since I feel I am having difficulty accurately describing this illness, here is a blog written by another patient. Unfortunately, he has not written in a couple of years but the last few posts do give one an idea of what it is like to be hammered by this illness...
http://livingwithmastocytosis.blogspot.com/
Also, here is some very basic info about Mastocytosis... I have both Diffuse Cutaneous Mastocytosis and Diffuse Systemic Mastocytosis (experiencing one apparently wasn't enough for me)...
http://www.knowcancer.com/oncology/mastocytosis/
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