A Few Steps Backward Far Too Often
Struggling with Systemic Mastocytosis, in any of its forms, makes the ability to be productive both difficult and frustrating. The desire to be productive is there... The desire to accomplish just one small thing on our continually growing to-do list is there... And, the frustration of how this insidious illness hinders all we try to do is always there.
Those of us with this illness are familiar with the occasional "good" day. We call these occasional days a "good" day but, for us, "good" is a relative term. For us, good simply means this moment is better than the previous. In reality and more accurately speaking, all days with this illness are a struggle, at best. Some moments are just better than others and it is these better moments which we refer to as "good".
Sometimes, however, a week such as this past week just slowly spirals downward. It can start with one noticeable symptom... in my case this week, I noticed a problem with my vision. I could not read anything... everything was fuzzy and blurry... with my reading glasses or without my reading glasses. In the big scheme of things, one symptom doesn't seem like much but it always seems to be the start of a downward spiral for Systemic Mastocytosis patients.
I've been trying to finish building a new half bathroom in our small home. When I was healthy, I could have knocked a job like this out in a week or two. The only thing which would have slowed me down would have been waiting on materials and waiting on coats of finish to dry before tackling the next coat. Now, a small project like this is derailed over and over. Needless to say, I am derailed again and, as a result, my life is at a standstill while I attempt to recover.
Every now and then, I can have a "good" day and accomplish a few things. Then the illness affects my cognitive abilities and I make a few elementary (and alarmingly stupid) mistakes. These mistakes always set me back a few steps. It seems that for every one productive day, I have multiple bad days of mistakes which waste energy, time and money and which require me to re-do many of the things I had previously accomplished but subsequently screwed up.
Compounding this is the fact that just using any energy causes our health to decline. The more energy we use in a day, the more our health declines. Even if we awake feeling "good", we must effectively manage our energy because we know it will deplete quickly and this will cause our health to crash. So, if I must accomplish a few things around the house, I must cut out a few other things that I would normally do. Just walking to the bathroom uses some of my precious energy... showering uses precious energy... hot showers will cause my health to crash... doing the dishes uses precious energy... doing laundry uses precious energy... walking from one room to the next and especially climbing stairs uses precious energy. The more energy I use, the quicker my health crashes into anaphylaxis.
This past week started with noticeable vision issues... I have been doing finish carpentry work at this stage of this bathroom project so I need to be sharp... I couldn't read my measuring tape... I couldn't accurately see the lines I was drawing... I couldn't accurately cut a simple straight line. Not long afterward, I noticed cognitive issues arising...
A door frame I custom built was installed perfectly... hmmm... but then I noticed a few minor issues due to my perfectionist tendencies... I went back to the door frame and I fixed the issues. Even though I was having difficulty with my vision, I attempted to route out recesses for door hinges and a strike plate. This required precise measurements and precise cutting. The cutting went well but I made a mistake on measurements which ruined the door frame.
Now, I either waste half a day ripping out the ruined door frame and rebuilding another one... and waste the money of the first frame... or I figure out a way to repair my mistakes hiding them as best as possible. Either way, I lose half a day or more of progress. This is not a big deal, typically, but my health is far from typical... What is worst about losing half a day or more of progress is the loss of precious energy that no healthy person could possibly understand.
An hour of any light activity for me is like a healthy person running an extreme marathon or more. Sometimes that hour of light activity is like a healthy person working hard for a week or more! Energy comes at a price for us... and that price is at a premium and exceptionally steep.
Anyway... I made a series of mistakes earlier in the week which rendered all my work this week useless. Wasting energy when you have very little to use is frustrating beyond anything I could accurately express here. This was my week this week.
My health continued to decline and I immediately stopped all attempts at accomplishing even the simplest of tasks. It didn't take long before my health declined enough that I was struggling with anaphylaxis and struggling to just stay conscious. Other symptoms appeared which only compounds my... well, it compounds every little struggle, little symptom I have... it adds anxiety... not being able to think clearly adds more anxiety and frustration. It seems like every little thing I attempt to do fails miserably.
As a result, I am left feeling that whatever little bit I did accomplish earlier this week was snatched away from me by subsequent mistakes... I take one step forward... then two steps backward. Then I try to mend my health before I can attempt to take a few steps forward again. Knowing I need to use more precious energy to get back to a place I was already, is defeating and disheartening.
Just getting back to where I was a week ago while using only a minimal amount of energy would be a tremendous relief... This nonsense of a few steps forward and a few steps back, over and over, seems to take a more significant toll on my emotional well being than my physical well being. This emotional hit affects my ability to trust my own body... It affects everything in my life...
Occasionally, I might have little bursts of energy allowing me to be so full of life and animated... but, on days like today, I feel like I am so far from that energy level that even breathing uses more energy than I have to expend...
So, even though I used some energy earlier in the week enabling me to take a couple of steps forward, I ended up wasting all that positive energy and stumbled a few steps backward later in the week...
Is this just what is called "busy work"? Believe me when I tell you it feels more akin to unproductive, pointless, demeaning hard labor...
Those of us with this illness are familiar with the occasional "good" day. We call these occasional days a "good" day but, for us, "good" is a relative term. For us, good simply means this moment is better than the previous. In reality and more accurately speaking, all days with this illness are a struggle, at best. Some moments are just better than others and it is these better moments which we refer to as "good".
Sometimes, however, a week such as this past week just slowly spirals downward. It can start with one noticeable symptom... in my case this week, I noticed a problem with my vision. I could not read anything... everything was fuzzy and blurry... with my reading glasses or without my reading glasses. In the big scheme of things, one symptom doesn't seem like much but it always seems to be the start of a downward spiral for Systemic Mastocytosis patients.
I've been trying to finish building a new half bathroom in our small home. When I was healthy, I could have knocked a job like this out in a week or two. The only thing which would have slowed me down would have been waiting on materials and waiting on coats of finish to dry before tackling the next coat. Now, a small project like this is derailed over and over. Needless to say, I am derailed again and, as a result, my life is at a standstill while I attempt to recover.
Every now and then, I can have a "good" day and accomplish a few things. Then the illness affects my cognitive abilities and I make a few elementary (and alarmingly stupid) mistakes. These mistakes always set me back a few steps. It seems that for every one productive day, I have multiple bad days of mistakes which waste energy, time and money and which require me to re-do many of the things I had previously accomplished but subsequently screwed up.
Compounding this is the fact that just using any energy causes our health to decline. The more energy we use in a day, the more our health declines. Even if we awake feeling "good", we must effectively manage our energy because we know it will deplete quickly and this will cause our health to crash. So, if I must accomplish a few things around the house, I must cut out a few other things that I would normally do. Just walking to the bathroom uses some of my precious energy... showering uses precious energy... hot showers will cause my health to crash... doing the dishes uses precious energy... doing laundry uses precious energy... walking from one room to the next and especially climbing stairs uses precious energy. The more energy I use, the quicker my health crashes into anaphylaxis.
This past week started with noticeable vision issues... I have been doing finish carpentry work at this stage of this bathroom project so I need to be sharp... I couldn't read my measuring tape... I couldn't accurately see the lines I was drawing... I couldn't accurately cut a simple straight line. Not long afterward, I noticed cognitive issues arising...
A door frame I custom built was installed perfectly... hmmm... but then I noticed a few minor issues due to my perfectionist tendencies... I went back to the door frame and I fixed the issues. Even though I was having difficulty with my vision, I attempted to route out recesses for door hinges and a strike plate. This required precise measurements and precise cutting. The cutting went well but I made a mistake on measurements which ruined the door frame.
Now, I either waste half a day ripping out the ruined door frame and rebuilding another one... and waste the money of the first frame... or I figure out a way to repair my mistakes hiding them as best as possible. Either way, I lose half a day or more of progress. This is not a big deal, typically, but my health is far from typical... What is worst about losing half a day or more of progress is the loss of precious energy that no healthy person could possibly understand.
An hour of any light activity for me is like a healthy person running an extreme marathon or more. Sometimes that hour of light activity is like a healthy person working hard for a week or more! Energy comes at a price for us... and that price is at a premium and exceptionally steep.
Anyway... I made a series of mistakes earlier in the week which rendered all my work this week useless. Wasting energy when you have very little to use is frustrating beyond anything I could accurately express here. This was my week this week.
My health continued to decline and I immediately stopped all attempts at accomplishing even the simplest of tasks. It didn't take long before my health declined enough that I was struggling with anaphylaxis and struggling to just stay conscious. Other symptoms appeared which only compounds my... well, it compounds every little struggle, little symptom I have... it adds anxiety... not being able to think clearly adds more anxiety and frustration. It seems like every little thing I attempt to do fails miserably.
As a result, I am left feeling that whatever little bit I did accomplish earlier this week was snatched away from me by subsequent mistakes... I take one step forward... then two steps backward. Then I try to mend my health before I can attempt to take a few steps forward again. Knowing I need to use more precious energy to get back to a place I was already, is defeating and disheartening.
Just getting back to where I was a week ago while using only a minimal amount of energy would be a tremendous relief... This nonsense of a few steps forward and a few steps back, over and over, seems to take a more significant toll on my emotional well being than my physical well being. This emotional hit affects my ability to trust my own body... It affects everything in my life...
Occasionally, I might have little bursts of energy allowing me to be so full of life and animated... but, on days like today, I feel like I am so far from that energy level that even breathing uses more energy than I have to expend...
So, even though I used some energy earlier in the week enabling me to take a couple of steps forward, I ended up wasting all that positive energy and stumbled a few steps backward later in the week...
Is this just what is called "busy work"? Believe me when I tell you it feels more akin to unproductive, pointless, demeaning hard labor...
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