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Showing posts with the label energy management

Balance

Systemic Mastocytosis requires a delicate balance of rest, diet and medications in order to keep my body as stable as possible. In addition to managing my medications closely, I need to effectively monitor and manage my use of energy.  If my energy gets too low, my health crashes into anaphylaxis, neurological issues and/or miserable intestinal issues. If I cut back on rest, I struggle with the same problems. If I stray from my diet... same thing. If I forget a dose of medications... same thing. After well over a decade of managing my own health, I'm pretty good at listening to what my body is telling me about my health because, if I don't, my health often will cascade out of control before I even get a chance to throw specific extra medications at the problem. Sometimes, however, things can get out of control for no known reason... today was one of those times. I had a fairly productive morning doing a few little things that are all hobby-related. This kind of stuff isn&

Health is in that Danger Zone

I've been too busy and not resting enough lately. Just as significant is the fact that I'm eating things which are known to add to my Systemic Mastocytosis problems. Avoiding these "bad" foods can be tough sometimes. There is little choice when we eat out... there is little choice when we have dinner at someone else's home... and leftovers are always bad for me.  Cooking fresh food for every single meal is difficult... and extremely expensive for those of us living in this neck of the woods. Needless to say, we always resort to eating leftovers because of financial concerns. Another problem I routinely struggle with is staying well rested and avoiding overdoing it! This time of year is tough for this one. Not taxing my body at all is tough to do through the holidays. Finding time for my everyday naps is difficult... even when I do lay down to try to nap. Something always keeps me up or awakens me far too early. This may be my biggest struggle through the hol

Timing of Poor Health Sometimes Falls Between Events

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A nice night out with friends for Christmas... Even when my health is relatively well, I am always a bit concerned about the timing of my poor health. I don't actually worry about it because, after all, I can't control my health, but it does concern me enough to wonder about rescheduling and contingency plans. Realistically speaking, just because my health is relatively well at any given moment does not mean my health will continue to be relatively well. If anything, Mastocytosis has taught me to accept and expect unpredictability. Although, to be honest, long before Mastocytosis reared its ugly head, I had already come to terms with unpredictability due to my spinal injuries. "Unpredictability... accept it, expect it, embrace it!" From November until the end of January, we have been quite busy physically and our schedules quite hectic. There were a number of events we were looking forward to and we, as always, were hoping my health would cooperate with this he

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.

Consequences of Missing Naps

Ever since this systemic mastocytosis illness has taken ahold of my body (read death grip), I have struggled with overwhelming fatigue. Overwhelming fatigue... First, I think I need to explain what qualifies as overwhelming fatigue.  This is fatigue which is so severe that it affects my ability to think clearly and make simple decisions...  It is a fatigue so severe that it is difficult to mindlessly hold something lightweight such as a book or magazine or my Kindle Fire tablet long enough to even begin the task of reading...  It is a fatigue which makes reading comprehension frustratingly impossible...  It is a fatigue so severe that my legs feel like mushy goo making walking short distances difficult to impossible...  It is fatigue so severe that I could fall asleep within mere seconds at any moment, even while standing, and then sleep for a solid 4-12 hours...  It is a fatigue which is so severe that it makes my normal triggers (for systemic mastocytosis episodes) beco

Health Lousy and Mood Foul

This past week or so has been incredibly difficult, quite lousy and, at times, downright miserable. Difficulty breathing causing huffing and puffing after simply walking from one room to the next... dizziness... cutaneous mastocytosis rash on my thighs and torso which is itchy, irritated and inflamed and clothes only irritate the problems more... overwhelming fatigue... I cannot possibly accurately express just how debilitating and overwhelming the fatigue actually has been the past few days. This morning, I was sitting in the bathroom thinking about what I could possibly accomplish today. Just the thought of standing up and walking back to my bedroom was overwhelming and seemed like 'mission impossible'. I had to wash my face... I felt all greasy and grimy... however, I knew that if I used any energy to wash my face, I probably would just need to lay down on the bathroom floor rather than my comfortable bed in the bedroom.  I knew I just would not find the energy to walk b

Post Christmas Poor Health... As Expected

I have been very fortunate this Christmas season!  We have had an exceptionally busy, hectic and exhausting December and, for the most part, my health held up surprisingly well. Now, however, we are a few days past Christmas and my health has crashed... and it has crashed spectacularly. I had a few bouts with anaphylaxis causing dizziness, palpitations, tachycardia, and breathing difficulties which all leads to exhaustion.  Whenever my heart responds to anaphylaxis, my heart-rate jumps to the 120-180 beats per minute range and it can stay there for an hour or two. Having your heart-rate at this chest pounding level is similar to running for a couple of hours... or playing a basketball game for a couple of hours... or any other strenuous activity for hours.  I am left feeling exhausted and my entire body aches for days. The degranulation of mast cells which caused this anaphylaxia also causes nerve irritation and inflammation.  Needless to say, in addition to the overwhelming fatigu

Health Delays

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The last real progress made on the fireplace... concrete backer-board for the tile... Well, just about everything is on hold now.  My health has hit its limit with this living room/fireplace project and Christmas preparations. Compounding my problems is the fact that we are expected to have icy road conditions for the next few days which means there is little chance I will get up to Williston and South Burlington for more building supplies, presents, etc.  Of course, if I lack the energy for this it doesn't matter much. My health has crashed quickly this time.  I managed to have a fairly productive morning but then I seemed to hit a wall.  I didn't even have the energy to clean up anything at all.  I just laid down for a few hours and then figured I needed to jump back into working on cutting tile for the fireplace...  no luck. I couldn't even think straight. I needed to measure things multiple times... over and over again... I couldn't draw a straight line no

Tile Work Today?

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Taking shape... notice the new custom paneling in the background where this fireplace will reside... (don't mind the dirty floors... I have really been beating on them this week!) I had an exceptionally productive day yesterday as you can see from these photos.  Not only is the maple and aspen paneling stained and finished looking warm, inviting and beautiful, but I have a good chunk of the fireplace and shelving unit cut and assembled. The mantle will also be aspen to match the walls.  The plywood sides of the fireplace and shelving unit is cut from birch. Much of the rest of the fireplace will be douglas fir and pine. I hand selected all the wood but did have to make some substitutions from my original plans because I could not find what I desired. The finished product should still look beautiful albeit a bit more expensive. Between the price of my substitutions and the time wasted trying to find what I needed, collecting materials was a long, tedious and frustrating proces

Productive Day

Today was a relatively productive day for a nice change!  I'm a little more optimistic that I can finish this fireplace project before the end of the weekend.  That will leave us a day or two to decorate for Christmas and wrap presents...  hmmm...  presents...  I might need to buy some of those soon... The new aspen and maple paneling in the living room is now stained and I have applied three coats of a satin polyurethane.  Ideally, it could really use another two or three coats of poly but the wood grain is filled in enough and sealed enough to make it through the next month or so. Besides, I just might add a coat or two while I am applying poly to the fireplace and shelving unit. That would finish the walls completely. In the meantime, it is looking great tonight! The house is a mess with construction materials all over the place but those new walls look nice! Tomorrow I plan to start cutting the latest batch of finish lumber for the fireplace, mantle and shelving unit.  In b

Using Valuable, Precious Energy

Anything wears my health down...  perhaps I should rephrase that...   Everything wears my health down, even if it is not a physical activity. It is common sense that physical activity can wear us down.  All physical activities easily wear down my health requiring days of rest to recover.  What most people do not understand, however, is that even rather sedentary interests wear my health down just as effectively.   For instance, last week I finished up producing my sailing video.  That entailed sitting at my computer editing video...   taking notes for more edits...  calculating synch times...  applying those edits...   repeating over and over, as necessary...  until the video was finished.  No physical activity nor strenuous exertion was necessary yet this rather simple, sedentary activity wore me down as though I had been at hard labor and sleep deprived for months.  A week later and I am still worn out and exhausted.   This is something that healthy people simply do not unders