A Systemic Mastocytosis Kind of Day
My Systemic Mastocytosis is rearing its ugly head again this week. I could be feeling worse... but, I wish I was feeling better. I feel as though I am in a constant battle which frustratingly involves two steps back and only one step forward, over and over and over...
I'm very nauseated this morning... weak... overwhelmingly fatigued... mild tachycardia since awaking this morning (now down to 100 bpm... but was up around 120 bpm when I awoke). This is usually a sign that I had an anaphylaxic episode in my sleep before awaking.
During an anaphylaxic episode, if I am awake, I notice a marked weakness and heaviness in my legs, vision becomes narrow, and breathing difficulties start. These are my usual signs of impending anaphylaxia and I must jump on emergency medications immediately... if I am awake, that is. If this happens in my sleep, as it sometimes does, I must hope that my body responds naturally and effectively to this sudden drop in blood pressure.
On the positive side, I am not having any difficulty breathing this morning. Breathing difficulties always accompany the more severe reactions/episodes though. That being said, it is possible that I did have some breathing difficulties while sleeping leading up to anaphylaxis.
A wave of nausea hits me and I begin to feel as though I am going to pass out. My vision gets narrower and narrower until I begin to see little sparkles in my vision. I can't catch my breath and I experience a sensation of falling... sort of like free-falling through an airless, frictionless vacuum. For me, these are the telltale signs of a dangerous drop in blood pressure. By the time the sparkles in my vision appear, it is usually too late to function on my own.
If all goes well, my body does what it is supposed to do by responding to the sudden drop in blood pressure with its own countermeasures. I will feel my heart seemingly jump up into my throat with palpitations pounding in my chest. My heart-rate will instantly jump into the 150-180 bpm range.
When I was in better shape (back when this illness first manifested in my body, I was just coming off a career in the military and was in excellent physical condition) this sudden response by my body felt almost "violent". Now, as my overall health declines, what was once a forceful, almost violent response is now considerably tamer and requires the help of epiniphrine and many other mast cell stabilizers, H1 blockers, H2 blockers, leukotriene blockers, etc.
Sometimes, the miserable nausea I get is accompanied by stomach pain and cramping... leading to explosive, slimy diarrhea which is completely uncontrollable. The nausea sometimes gets so intense that I find myself holding back vomit too. It is bad enough trying to deal with these types of disgusting symptoms but the primary concern must be getting my heart to respond to the anaphylaxia.
Although I am feeling quite a bit of nausea this morning (that reminds me, I need to call my doctor to get a refill of my anti-nausea medication as well as one of my emergency medications), I would say it is only about half as bad as it can get. I haven't needed to run to the bathroom just yet so that is good!
Since taking my morning medications after arising this morning, my body slowly seems to be stabilizing. That is a good sign.... heart-rate now, as I write this, is down around 64 bpm which is also good news. The nausea seems to be subsiding as well, however, I feel like I could sleep for a month!
The overwhelming fatigue (think mononucleosis x 100) will linger for days, at a minimum. This fatigue is so debilitating that just holding my hands up to read a book or magazine is exhausting within seconds. Just showering can use up too much energy during these periods of overwhelming fatigue. The energy to focus my eyes seems to be impossible to find. This little anaphylaxic/cellular reaction will also cause inflammation and nerve irritation in different areas of my body so these days of rest always promise to be enveloped in pain like snuggling into a blanket of steel wool and spikes. Oh, fun days.
At this point of my morning, it is obvious to me that the rest of this week will consist of rest, recovery, bone and joint pain, and overwhelming fatigue assuming I have no worsening health again. These days consist of struggling with my vision so I can read or watch movies. I never feel comfortable wandering more than a matter of feet from the bathroom. I struggle with finding food to eat because I know any leftovers will make my health worse and even some fresh foods are bad for me also. I need to be religious about my diet and medications. Oh... and my emergency medications not only affect my vision but they make me drowsy which does help me rest but makes for days of nothing but sleep.
Me thinks this will be a wasted week of nothingness...
I'm very nauseated this morning... weak... overwhelmingly fatigued... mild tachycardia since awaking this morning (now down to 100 bpm... but was up around 120 bpm when I awoke). This is usually a sign that I had an anaphylaxic episode in my sleep before awaking.
During an anaphylaxic episode, if I am awake, I notice a marked weakness and heaviness in my legs, vision becomes narrow, and breathing difficulties start. These are my usual signs of impending anaphylaxia and I must jump on emergency medications immediately... if I am awake, that is. If this happens in my sleep, as it sometimes does, I must hope that my body responds naturally and effectively to this sudden drop in blood pressure.
On the positive side, I am not having any difficulty breathing this morning. Breathing difficulties always accompany the more severe reactions/episodes though. That being said, it is possible that I did have some breathing difficulties while sleeping leading up to anaphylaxis.
A wave of nausea hits me and I begin to feel as though I am going to pass out. My vision gets narrower and narrower until I begin to see little sparkles in my vision. I can't catch my breath and I experience a sensation of falling... sort of like free-falling through an airless, frictionless vacuum. For me, these are the telltale signs of a dangerous drop in blood pressure. By the time the sparkles in my vision appear, it is usually too late to function on my own.
If all goes well, my body does what it is supposed to do by responding to the sudden drop in blood pressure with its own countermeasures. I will feel my heart seemingly jump up into my throat with palpitations pounding in my chest. My heart-rate will instantly jump into the 150-180 bpm range.
When I was in better shape (back when this illness first manifested in my body, I was just coming off a career in the military and was in excellent physical condition) this sudden response by my body felt almost "violent". Now, as my overall health declines, what was once a forceful, almost violent response is now considerably tamer and requires the help of epiniphrine and many other mast cell stabilizers, H1 blockers, H2 blockers, leukotriene blockers, etc.
Sometimes, the miserable nausea I get is accompanied by stomach pain and cramping... leading to explosive, slimy diarrhea which is completely uncontrollable. The nausea sometimes gets so intense that I find myself holding back vomit too. It is bad enough trying to deal with these types of disgusting symptoms but the primary concern must be getting my heart to respond to the anaphylaxia.
Although I am feeling quite a bit of nausea this morning (that reminds me, I need to call my doctor to get a refill of my anti-nausea medication as well as one of my emergency medications), I would say it is only about half as bad as it can get. I haven't needed to run to the bathroom just yet so that is good!
Since taking my morning medications after arising this morning, my body slowly seems to be stabilizing. That is a good sign.... heart-rate now, as I write this, is down around 64 bpm which is also good news. The nausea seems to be subsiding as well, however, I feel like I could sleep for a month!
The overwhelming fatigue (think mononucleosis x 100) will linger for days, at a minimum. This fatigue is so debilitating that just holding my hands up to read a book or magazine is exhausting within seconds. Just showering can use up too much energy during these periods of overwhelming fatigue. The energy to focus my eyes seems to be impossible to find. This little anaphylaxic/cellular reaction will also cause inflammation and nerve irritation in different areas of my body so these days of rest always promise to be enveloped in pain like snuggling into a blanket of steel wool and spikes. Oh, fun days.
At this point of my morning, it is obvious to me that the rest of this week will consist of rest, recovery, bone and joint pain, and overwhelming fatigue assuming I have no worsening health again. These days consist of struggling with my vision so I can read or watch movies. I never feel comfortable wandering more than a matter of feet from the bathroom. I struggle with finding food to eat because I know any leftovers will make my health worse and even some fresh foods are bad for me also. I need to be religious about my diet and medications. Oh... and my emergency medications not only affect my vision but they make me drowsy which does help me rest but makes for days of nothing but sleep.
Me thinks this will be a wasted week of nothingness...
I wish I could be home with you to take care of some of the daily tasks of survival like making meals and to rub your arms, legs, and back to help alleviate some of the pain. I love you!!!
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