Becoming Careless with my "New Normal"
I recently wrote about a rude and dangerous awakening during anaphylaxis as a result of one of my fairly typical Systemic Mastocytosis episodes. Awakening to your heart suddenly and almost violently responding to anaphylaxis with palpitations and tachycardia is definitely a rude awakening. Talk about a jump start to your morning!
That post was about awaking to anaphylaxis in the morning. Now, I will introduce you to the helplessness of anaphylaxis at bedtime... and, worse yet, at a time when you are ridiculously careless.
The other night, I laid down in bed for the night, had just started to read a magazine on my Kindle Fire, and suddenly felt the initial telltale signs of anaphylaxis. I was suddenly lightheaded, couldn't breath and felt as though I would lose consciousness instantly. I also had the usual but really weird sensation of falling that I have always had difficulty describing effectively. It feels as though I am in a constant freefall through a long tube that is a vacuum through time and space and if I allowed my body to shut my eyes, that would be it... they would be shut forever. This particular night, this initial and instant stage of anaphylaxis only lasted for a few short seconds before I suddenly felt my heart respond...
I looked to the nightstand next to the bed for my epinephrine injection, epinephrine inhaler and other emergency medications... they weren't there as they should have been.
Sometimes I have fairly stable health for a week or two and, if so, I always tend to get a little careless. This was one of those times. My emergency medications were not within reach as they always need to be. As a matter of fact, the more I tried to think about where my medications were located, the more I realized that this time I was exceptionally careless...
Some of my emergency medications were still in my pants pocket in the closet. Some of my emergency medications were near my desk, I think... "no... damn." I left my vital fanny pack of medications in the living room. "Water... where is my glass of water?" Was there a glass of water next to the bed? "No... damn... Did I leave my glass of water on my desk? No. DAMN." I would need to get up out of bed and go fetch water too. "What if I head to the kitchen and collapse and lose consciousness in a heap on the kitchen floor?"
These questions passed through my head in only a few short seconds. My body was still responding to the anaphylaxia but the tachycardia didn't seem as drastic as most times. My heart rate usually jumps to around 180 beats per minute after anaphylaxia to make up for the life threatening drop in blood pressure. This time, I felt as though my heart rate was only up in the 110-120 bpm range and I was having difficulty "feeling" it.
Yes, I said "feel" my heart rate. This happens so often that I have learned to actually feel my heart rate without counting beats by touching my pulse. I still always check my pulse and count, but my initial guess by just "feeling" my heart rate is always eerily close. Perhaps this is due to the musician in me... I can feel the rhythm of my own body the way I can feel the rhythm of any sound waves. Perhaps it is because I am in tune with my body. This night, I find that my pulse is more rapid than a normal heart rate, but faint, and probably not as high as it needs to be to recover from anaphylaxis.
The good news is that even though my heart has responded in a half-hearted way (ha ha... no pun intended, but I'll leave it here anyway), my heart has indeed responded to help counter the anaphylaxis. The bad news is that when blood pressure drops instantaneously, the muscles don't get the blood they need to work... no blood being pumped to them means no oxygen to fuel my muscles... especially the large muscles in the extremities like my legs.
As I am pondering how I am going to get to all the different areas of the bedroom and house to collect all the medications and water I now desperately need, a few more thoughts pass through my foggy brain... "Should I awake Sheila?" "Is this serious enough to need to interrupt her sleep?" She has to get up to go to work in a few short hours. I look next to me to Sheila... then I look to the closet next to the bed where the first of my emergency medications are located in my pants' pocket... "nope, my legs are not going to get me there." Not only am I weaker than any healthy person can imagine, but my legs simply will not lift off the bed. The closet is only two feet from my side of the bed but my body cannot get me there. I look back to Sheila wondering if I need to wake her or whether my body will continue to recover on its own... Even after all these thoughts and questions, only a mere 30 seconds or so have passed... I can't decide... "Is this more Systemic Mastocytosis brain fog?" "Damn... I think it is... this might be worse than I thought..."
I again look back and forth between Sheila and the closet next to the bed where my epinephrine is located... I actually know that I need to make a decision but my brain will not allow me... This brain fog is like a damp, moist fog enveloping all my brain cells, shorting out synapses causing cognitive reasoning to get lost in the fog. I can feel the familiar frustration and emotions bubbling up from being unable to make such a simple decision... "damn... I used to make life-and-death decisions in my career every day and now I am unable to make a simple decision... I even know the damn answer... make the decision and act!" More frustration and emotion bubble forth as I try to force my brain to do what is right.
I look back and forth between Sheila and the closet... I want to decide what to do and just do it... but it won't happen and the frustration and emotion continue to bubble forth and begins to overwhelm...
I'm suddenly in freefall again...
I awake. The bedroom glows in that early morning light just barely illuminating everything enough to see. The birds are chirping. I feel the damp, cool morning air softly blowing through the open windows and gently rocking the mini blinds. Then I remember last night and realize, "Yes, I should have awoken Sheila last night".
Those of us with this incurable, debilitating illness have health that seems to fluctuate like the ebb and flow of the tide. It changes daily. It can change in an instant. Sometimes we have a few good days in a row. These good times are surprisingly dangerous times because we tend to become complacent in guarding our health. This good period fools us into thinking our "new normal" is better than it is in reality. We become careless. We stray from diets. We push our bodies too far forgetting about effective energy management. We then inevitably get careless with our emergency medications which should be within reach at all times.
My problem the other night was that I based my "new normal" on the past few days. That is stupid, careless and simply dangerous to do. My new normal must be based upon an average of the good days and the bad days. My new normal needs to be based upon a longer period of time, the shortest of which should be a month. Sometimes this new normal needs to be based upon the past three or four months. Sometimes, we (those of us with Systemic Mastocytosis and many other chronic illnesses) should figure out our new normal based upon the past six months or a year.
My main point here is that if I can get this careless, any patient can get this careless. I am considered a seasoned veteran of Systemic Mastocytosis having had this illness for more than ten years now. For the first few years, I participated in a few different national support groups. I researched a lot. I learned a lot through my research as well as from patients in the support groups. I wrote a lot of papers. I passed on all this information I have gleaned to new patients time and time again, over and over.
While participating in these support groups in my first few years with this illness, I have known of far too many support group members dying of this illness so I definitely understand the seriousness and dangers presented by this illness. Yet, even with all this understanding, knowledge and experience, I still make dangerous mistakes because I get caught up in a few days of good health pushing safety and my own medical history out of my thoughts. In some ways, this can be perceived as a bit of denial... the stubborn stage of grieving with no regard to the reality of being a fragile, yet well balanced human. More so, at this stage of the game and having long ago progressed through the stages of grief, I think this is a method of coping... trying to avoid dwelling on all the negative. We need breaks like this to break away from constantly dwelling on all the doom that this illness thrusts into our lives. The problem is that these little breaks from the doom and gloom of Systemic Mastocytosis can cause the pendulum to swing to the opposite end of the spectrum causing us to become careless, negligent and far too shortsighted to our own reality created by this illness.
My advice for today is don't get careless by basing your new normal on just a few days or few weeks of relatively good, stable health. Base your new normal on the average of the good days and bad days over the course of a month or more. Listen to your body. "Feel" your health. Pay attention to what your body is telling you. Find that happy and safe place in between good and bad. And never... never... get careless with your emergency medications and safety. Always keep your true new normal in mind and stay vigilant.
There are many variables that ebb and flow as a result of this debilitating illness but one thing that always holds true with Systemic Mastocytosis is good health will and always does crash. Don't be fooled into complacency. Be prepared and stay vigilant while you enjoy the 'good' days!
Now, if I could just heed my own advice...
That post was about awaking to anaphylaxis in the morning. Now, I will introduce you to the helplessness of anaphylaxis at bedtime... and, worse yet, at a time when you are ridiculously careless.
The other night, I laid down in bed for the night, had just started to read a magazine on my Kindle Fire, and suddenly felt the initial telltale signs of anaphylaxis. I was suddenly lightheaded, couldn't breath and felt as though I would lose consciousness instantly. I also had the usual but really weird sensation of falling that I have always had difficulty describing effectively. It feels as though I am in a constant freefall through a long tube that is a vacuum through time and space and if I allowed my body to shut my eyes, that would be it... they would be shut forever. This particular night, this initial and instant stage of anaphylaxis only lasted for a few short seconds before I suddenly felt my heart respond...
I looked to the nightstand next to the bed for my epinephrine injection, epinephrine inhaler and other emergency medications... they weren't there as they should have been.
Sometimes I have fairly stable health for a week or two and, if so, I always tend to get a little careless. This was one of those times. My emergency medications were not within reach as they always need to be. As a matter of fact, the more I tried to think about where my medications were located, the more I realized that this time I was exceptionally careless...
Some of my emergency medications were still in my pants pocket in the closet. Some of my emergency medications were near my desk, I think... "no... damn." I left my vital fanny pack of medications in the living room. "Water... where is my glass of water?" Was there a glass of water next to the bed? "No... damn... Did I leave my glass of water on my desk? No. DAMN." I would need to get up out of bed and go fetch water too. "What if I head to the kitchen and collapse and lose consciousness in a heap on the kitchen floor?"
These questions passed through my head in only a few short seconds. My body was still responding to the anaphylaxia but the tachycardia didn't seem as drastic as most times. My heart rate usually jumps to around 180 beats per minute after anaphylaxia to make up for the life threatening drop in blood pressure. This time, I felt as though my heart rate was only up in the 110-120 bpm range and I was having difficulty "feeling" it.
Yes, I said "feel" my heart rate. This happens so often that I have learned to actually feel my heart rate without counting beats by touching my pulse. I still always check my pulse and count, but my initial guess by just "feeling" my heart rate is always eerily close. Perhaps this is due to the musician in me... I can feel the rhythm of my own body the way I can feel the rhythm of any sound waves. Perhaps it is because I am in tune with my body. This night, I find that my pulse is more rapid than a normal heart rate, but faint, and probably not as high as it needs to be to recover from anaphylaxis.
The good news is that even though my heart has responded in a half-hearted way (ha ha... no pun intended, but I'll leave it here anyway), my heart has indeed responded to help counter the anaphylaxis. The bad news is that when blood pressure drops instantaneously, the muscles don't get the blood they need to work... no blood being pumped to them means no oxygen to fuel my muscles... especially the large muscles in the extremities like my legs.
As I am pondering how I am going to get to all the different areas of the bedroom and house to collect all the medications and water I now desperately need, a few more thoughts pass through my foggy brain... "Should I awake Sheila?" "Is this serious enough to need to interrupt her sleep?" She has to get up to go to work in a few short hours. I look next to me to Sheila... then I look to the closet next to the bed where the first of my emergency medications are located in my pants' pocket... "nope, my legs are not going to get me there." Not only am I weaker than any healthy person can imagine, but my legs simply will not lift off the bed. The closet is only two feet from my side of the bed but my body cannot get me there. I look back to Sheila wondering if I need to wake her or whether my body will continue to recover on its own... Even after all these thoughts and questions, only a mere 30 seconds or so have passed... I can't decide... "Is this more Systemic Mastocytosis brain fog?" "Damn... I think it is... this might be worse than I thought..."
I again look back and forth between Sheila and the closet next to the bed where my epinephrine is located... I actually know that I need to make a decision but my brain will not allow me... This brain fog is like a damp, moist fog enveloping all my brain cells, shorting out synapses causing cognitive reasoning to get lost in the fog. I can feel the familiar frustration and emotions bubbling up from being unable to make such a simple decision... "damn... I used to make life-and-death decisions in my career every day and now I am unable to make a simple decision... I even know the damn answer... make the decision and act!" More frustration and emotion bubble forth as I try to force my brain to do what is right.
I look back and forth between Sheila and the closet... I want to decide what to do and just do it... but it won't happen and the frustration and emotion continue to bubble forth and begins to overwhelm...
I'm suddenly in freefall again...
I awake. The bedroom glows in that early morning light just barely illuminating everything enough to see. The birds are chirping. I feel the damp, cool morning air softly blowing through the open windows and gently rocking the mini blinds. Then I remember last night and realize, "Yes, I should have awoken Sheila last night".
Those of us with this incurable, debilitating illness have health that seems to fluctuate like the ebb and flow of the tide. It changes daily. It can change in an instant. Sometimes we have a few good days in a row. These good times are surprisingly dangerous times because we tend to become complacent in guarding our health. This good period fools us into thinking our "new normal" is better than it is in reality. We become careless. We stray from diets. We push our bodies too far forgetting about effective energy management. We then inevitably get careless with our emergency medications which should be within reach at all times.
My problem the other night was that I based my "new normal" on the past few days. That is stupid, careless and simply dangerous to do. My new normal must be based upon an average of the good days and the bad days. My new normal needs to be based upon a longer period of time, the shortest of which should be a month. Sometimes this new normal needs to be based upon the past three or four months. Sometimes, we (those of us with Systemic Mastocytosis and many other chronic illnesses) should figure out our new normal based upon the past six months or a year.
My main point here is that if I can get this careless, any patient can get this careless. I am considered a seasoned veteran of Systemic Mastocytosis having had this illness for more than ten years now. For the first few years, I participated in a few different national support groups. I researched a lot. I learned a lot through my research as well as from patients in the support groups. I wrote a lot of papers. I passed on all this information I have gleaned to new patients time and time again, over and over.
While participating in these support groups in my first few years with this illness, I have known of far too many support group members dying of this illness so I definitely understand the seriousness and dangers presented by this illness. Yet, even with all this understanding, knowledge and experience, I still make dangerous mistakes because I get caught up in a few days of good health pushing safety and my own medical history out of my thoughts. In some ways, this can be perceived as a bit of denial... the stubborn stage of grieving with no regard to the reality of being a fragile, yet well balanced human. More so, at this stage of the game and having long ago progressed through the stages of grief, I think this is a method of coping... trying to avoid dwelling on all the negative. We need breaks like this to break away from constantly dwelling on all the doom that this illness thrusts into our lives. The problem is that these little breaks from the doom and gloom of Systemic Mastocytosis can cause the pendulum to swing to the opposite end of the spectrum causing us to become careless, negligent and far too shortsighted to our own reality created by this illness.
My advice for today is don't get careless by basing your new normal on just a few days or few weeks of relatively good, stable health. Base your new normal on the average of the good days and bad days over the course of a month or more. Listen to your body. "Feel" your health. Pay attention to what your body is telling you. Find that happy and safe place in between good and bad. And never... never... get careless with your emergency medications and safety. Always keep your true new normal in mind and stay vigilant.
There are many variables that ebb and flow as a result of this debilitating illness but one thing that always holds true with Systemic Mastocytosis is good health will and always does crash. Don't be fooled into complacency. Be prepared and stay vigilant while you enjoy the 'good' days!
Now, if I could just heed my own advice...
Always, Always Wake Sheila!!! Wow, this was a very strong eye opener (no pun intended) on my own complacency with this illness and how even though I ask daily how you are feeling, I still forget the severity of the illness. I have been reminded of the need for my own attention to every detail of your life and body's reactions to certain stimuli. We have become "careless" over the past week or so....
ReplyDelete