Brutal Health
I was going to write that my health has been quite lousy the past week but, upon thinking about it more clearly in somewhat more stable and better health, my health really has been quite lousy for the past three or four months and quite brutal the past week.
A good portion of the past week has been spent being nauseated and ill in the bathroom. I've had the usual breathing difficulties, vision problems, tremors, twitching and some relatively minor signs of impending anaphylaxis but mostly have been struggling with lower gastrointestinal issues this past week. I never even wandered farther than about 30 feet of the bathroom for a few days!
Now that my health seems a bit more stable, I am dealing with the usual post-episode bone and joint pain. My long bones... mostly my leg bones... and my spine are inflamed. My joints scream whenever I put any weight on my feet. To say I am "uncomfortable" is a bit of an understatement. That being said, I think my mood only soured enough to thoughtlessly snap at Sheila twice during this pain this past week. Considering how brutal this past week has been, I don't think that is too bad but... perhaps we should ask Sheila for a more accurate accounting...
My vision was so poor earlier in the week that I couldn't even read... couldn't watch television or movies... I couldn't work on any art nor photography projects... I couldn't really do much of anything except listen to music and movies. So, I would load up Netflix on our GoogleTV (while needing to stand within a foot or two from the big screen so I could see what I was doing), select a funny movie I've already seen a million times, and then lie on the couch and listen to the movie until I would fall asleep.
I slept a lot this past week! These Systemic Mastocytosis episodes really wear me out which is only compounded by my emergency medications which make me groggy. The lingering fatigue as a result of the brutal episode always proves to be overwhelming like I had run a marathon, been physically beaten, run over, and had the life sucked out of me. Overwhelming fatigue is a major part of my everyday life but actually worsens after any type of episode. Even though I live with this overwhelming fatigue everyday, it is mind-boggling to believe it can worsen at all, but it does.
The pain though... wow... I always forget how unusual this pain is and how debilitating it can be, physically, mentally and emotionally. The pain just bubbles under the surface... I can't get comfortable at all in any position... and my bones ache and are painful when touched. I fall asleep in pain, I awake in pain. Oddly enough, even though my bones are painful to the touch, light massage, although painful, feels freakishly good. It is a very odd sensation of pain and pleasure which almost brings tears to my eyes. It is like my brain is getting mixed, confused messages which then bubbles over into my emotions. It is a very odd sensation indeed.
My joints hurt badly enough to buckle my knees when trying to walk across a room. This, too, is standard recovery mode after a Systemic Mastocytosis "episode". I expect this pain, both bone and joint pain, to wane over the next week or so.
As the weather warms up a bit and our frozen, snow-buried ground becomes as muddy as quicksand, I'm hoping my health is again on the mend if only for a few solid months. It would be nice to accomplish a few things again and enjoy some decent weather...
And, it would be really nice to feel productive again in some way...
Oh... and it would be exceptionally nice to have a few extra spoons to use everyday...
I don't think that is asking for too much.
A good portion of the past week has been spent being nauseated and ill in the bathroom. I've had the usual breathing difficulties, vision problems, tremors, twitching and some relatively minor signs of impending anaphylaxis but mostly have been struggling with lower gastrointestinal issues this past week. I never even wandered farther than about 30 feet of the bathroom for a few days!
Now that my health seems a bit more stable, I am dealing with the usual post-episode bone and joint pain. My long bones... mostly my leg bones... and my spine are inflamed. My joints scream whenever I put any weight on my feet. To say I am "uncomfortable" is a bit of an understatement. That being said, I think my mood only soured enough to thoughtlessly snap at Sheila twice during this pain this past week. Considering how brutal this past week has been, I don't think that is too bad but... perhaps we should ask Sheila for a more accurate accounting...
My vision was so poor earlier in the week that I couldn't even read... couldn't watch television or movies... I couldn't work on any art nor photography projects... I couldn't really do much of anything except listen to music and movies. So, I would load up Netflix on our GoogleTV (while needing to stand within a foot or two from the big screen so I could see what I was doing), select a funny movie I've already seen a million times, and then lie on the couch and listen to the movie until I would fall asleep.
I slept a lot this past week! These Systemic Mastocytosis episodes really wear me out which is only compounded by my emergency medications which make me groggy. The lingering fatigue as a result of the brutal episode always proves to be overwhelming like I had run a marathon, been physically beaten, run over, and had the life sucked out of me. Overwhelming fatigue is a major part of my everyday life but actually worsens after any type of episode. Even though I live with this overwhelming fatigue everyday, it is mind-boggling to believe it can worsen at all, but it does.
The pain though... wow... I always forget how unusual this pain is and how debilitating it can be, physically, mentally and emotionally. The pain just bubbles under the surface... I can't get comfortable at all in any position... and my bones ache and are painful when touched. I fall asleep in pain, I awake in pain. Oddly enough, even though my bones are painful to the touch, light massage, although painful, feels freakishly good. It is a very odd sensation of pain and pleasure which almost brings tears to my eyes. It is like my brain is getting mixed, confused messages which then bubbles over into my emotions. It is a very odd sensation indeed.
My joints hurt badly enough to buckle my knees when trying to walk across a room. This, too, is standard recovery mode after a Systemic Mastocytosis "episode". I expect this pain, both bone and joint pain, to wane over the next week or so.
As the weather warms up a bit and our frozen, snow-buried ground becomes as muddy as quicksand, I'm hoping my health is again on the mend if only for a few solid months. It would be nice to accomplish a few things again and enjoy some decent weather...
And, it would be really nice to feel productive again in some way...
Oh... and it would be exceptionally nice to have a few extra spoons to use everyday...
I don't think that is asking for too much.
I have nothing to complain about! Considering how you were feeling, your mood was not bad at all. I do not recall you snapping at me this week. I am always amazed at how well you do at handling this illness and spinal injuries. I get cranky when I have a hangnail! I love you!!!
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