In Recovery Mode
We are back home from the lake house now. Although it was a great week on Lake Groton and I prepared for this week for months by being vigilant with my daily physical therapy (a daily ritual since my second line-of-duty spinal injury in 1998), it has really taken a lot out of me.
My spine is inflamed from dragging around kayaks and the sailboat. Packing bags into the car didn't help either! As bad as the spinal pain is, problems associated with my Systemic Mastocytosis are far worse and much more debilitating.
Wearing myself down is one of the worst things I can do to my health today and has the same effect on all Systemic Mastocytosis patients. The absolute worst thing we can do is to miss a dose of medications. Wearing oneself down takes a close second though and requires the longest amount of time to recover.
It just so happens that I did miss a dose of medications on our first night at the lake. Our daily lifestyle changed so much at the lake that my medications were the furthest from my mind that first night. I missed taking nine medications... yes... NINE medications (and that was just one dose of four I take each day).
Fortunately, I got up very early in the morning the next morning and was able to make up for the missed dose before my health reacted in a negative way. I was out on the lake by 5:30am that morning and getting up this early was something I did throughout the week. Hence, I wore my overall health down.
My mantra to all new patients is the same...
1. Take your medications effectively and without fail.
2. Your daily life must now revolve around "effective Energy Management".
3. Stick to a low histamine diet.
4. Keep your body as cool as possible.
5. Listen to what your body is telling you.
Well, I threw out the first two rules the moment we arrived at the lake! As a result, I am overwhelmingly fatigued and in pain.
The fatigue is brutal. When I get like this, just taking care of my own body requires more energy than I have available. Cognitive reasoning suffers as well.
When the fatigue gets this bad I also have difficulty breathing too. That just compounds the fatigue. Hell, it compounds everything. Gasping for air after just walking 20 feet can compound any problems.
The pain... 'unbearable' would be the best word to describe that. In Systemic Mastocytosis, the long bones in the body can hurt... ie, leg bones, arms, and I even have problems with my ribs. It hurts just sitting still. Pressing a finger into one of these long bones is excruciating!
When I try to ever so lightly walk across a room, the pain is unbearable. If I try to do anything the least bit strenuous, it is excruciating. As the fatigue worsens through the day, the pain also worsens considerably.
I started feeling the fatigue and pain late in the week while at the lake. Today, this combination of fatigue and pain is debilitating, to say the least. Hopefully I will recover quickly... In my experience, 'quickly' can be a week or two. That being said, there have been times when it has taken me up to six months to recover. I suppose it depends upon how much I wore myself down... and how 'strong' I was feeling before I wore myself down. In this case, I was in pretty good shape before we left for the lake so I should recover relatively quickly... hopefully!
In the meantime, I am going to try to work on posting some photos and videos from our time at the lake house. I have some beautiful photos and some great sailing videos! Rather than just posting the whole bunch of videos and photos at once and overwhelming everyone with too much, I plan to post them in smaller groups by topic. If I can stay focused in a particular topic, with only the appropriate photos and/or videos for the topic, my posts should remain fairly interesting.
So, check back often in the coming weeks. I should be posting regularly now on our time at the lake... kayaking, sailing, socializing, some nature photos, some wildlife photos, and the usual landscape photos.
For what it's worth, I'm very happy with the quality of many of the photos from this trip and I am excited about the videos I have too. When I scroll through the photos, I find myself amazed at the quality of many of them!
This blog should be very interesting in the coming days and weeks...
My spine is inflamed from dragging around kayaks and the sailboat. Packing bags into the car didn't help either! As bad as the spinal pain is, problems associated with my Systemic Mastocytosis are far worse and much more debilitating.
Wearing myself down is one of the worst things I can do to my health today and has the same effect on all Systemic Mastocytosis patients. The absolute worst thing we can do is to miss a dose of medications. Wearing oneself down takes a close second though and requires the longest amount of time to recover.
It just so happens that I did miss a dose of medications on our first night at the lake. Our daily lifestyle changed so much at the lake that my medications were the furthest from my mind that first night. I missed taking nine medications... yes... NINE medications (and that was just one dose of four I take each day).
Fortunately, I got up very early in the morning the next morning and was able to make up for the missed dose before my health reacted in a negative way. I was out on the lake by 5:30am that morning and getting up this early was something I did throughout the week. Hence, I wore my overall health down.
My mantra to all new patients is the same...
1. Take your medications effectively and without fail.
2. Your daily life must now revolve around "effective Energy Management".
3. Stick to a low histamine diet.
4. Keep your body as cool as possible.
5. Listen to what your body is telling you.
Well, I threw out the first two rules the moment we arrived at the lake! As a result, I am overwhelmingly fatigued and in pain.
The fatigue is brutal. When I get like this, just taking care of my own body requires more energy than I have available. Cognitive reasoning suffers as well.
When the fatigue gets this bad I also have difficulty breathing too. That just compounds the fatigue. Hell, it compounds everything. Gasping for air after just walking 20 feet can compound any problems.
The pain... 'unbearable' would be the best word to describe that. In Systemic Mastocytosis, the long bones in the body can hurt... ie, leg bones, arms, and I even have problems with my ribs. It hurts just sitting still. Pressing a finger into one of these long bones is excruciating!
When I try to ever so lightly walk across a room, the pain is unbearable. If I try to do anything the least bit strenuous, it is excruciating. As the fatigue worsens through the day, the pain also worsens considerably.
I started feeling the fatigue and pain late in the week while at the lake. Today, this combination of fatigue and pain is debilitating, to say the least. Hopefully I will recover quickly... In my experience, 'quickly' can be a week or two. That being said, there have been times when it has taken me up to six months to recover. I suppose it depends upon how much I wore myself down... and how 'strong' I was feeling before I wore myself down. In this case, I was in pretty good shape before we left for the lake so I should recover relatively quickly... hopefully!
In the meantime, I am going to try to work on posting some photos and videos from our time at the lake house. I have some beautiful photos and some great sailing videos! Rather than just posting the whole bunch of videos and photos at once and overwhelming everyone with too much, I plan to post them in smaller groups by topic. If I can stay focused in a particular topic, with only the appropriate photos and/or videos for the topic, my posts should remain fairly interesting.
So, check back often in the coming weeks. I should be posting regularly now on our time at the lake... kayaking, sailing, socializing, some nature photos, some wildlife photos, and the usual landscape photos.
For what it's worth, I'm very happy with the quality of many of the photos from this trip and I am excited about the videos I have too. When I scroll through the photos, I find myself amazed at the quality of many of them!
This blog should be very interesting in the coming days and weeks...
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