Scattered Thoughts . . .

It was a rough, uneventful and rather boring morning with my health problems (see my previous blog posts). Times like this always feel like periods of 'nothingness'.  I took some extra medications around lunchtime and then I ended up sleeping through the afternoon. When Sheila arrived home at 5pm, she noticed our resident cat sitting on our deck outside our front 15-lite glass door...  sitting in the rain...   watching through the glass at me lying on the couch...keeping a close eye on me through the glass. Whenever I get this type of attention from any cat, particularly this cat, it is a sign of exceptionally poor health... dangerously low levels of health.  Fortunately, I had medicated myself as best as I could...  well, I suppose I could have added a bit more medications... but, I'm awake now and feeling 'okay'. I'm not feeling 'good', but well enough to find something to eat for dinner.   I guess we had better do something about dinner befo...

It is only 9:30 in the morning yet I am already ready for bed. I'm exhausted... fatigued... feel like I have been awake for weeks... I'm weak... I'm having difficulty breathing... I simply don't have the energy for anything. There are a million things I actually want to do... work on the house... work on a dollhouse I designed and have started building... work on some model railroading projects... do some landscaping... get some more work accomplished on the bbq grill kitchen area outside in the backyard... do some biking... get out to do some landscape photography... take a short hike to a nearby mountain summit... lately, I've even been thinking of sitting down at the piano again after a very long break from music in general.  (A side note here:  I did, however, have an unusually good day yesterday... I ran some electrical through some existing renovations... I did a little painting... I did a little bit of spackling... I even did a load of laundry which is ...

I honestly don't know how often I write about it, but it is time to write about it again even if I have written about it often.  Fatigue is something I struggle with every day, all day. The past week or so has been pretty lousy when it comes to the energy vs fatigue struggle so I thought it would be a good time to write about it. "Overwhelming fatigue" is a much more accurate term than simply saying "fatigue". Telling my doctors that I am "fatigued" doesn't even come close to describing this debilitating symptom. Just saying "fatigue" sounds silly... childish... minuscule... not worth mentioning... it seems like something a nap will cure. Even calling it "overwhelming fatigue" doesn't seem to cut it either but it is the best term I know. I've had mononucleosis three times in my life (thus far) and I have always said I would never wish that fatigue on anyone... not even on my worst enemy. This overwhelming fatigue th...

As expected, I am still struggling with my health after our long journey to and from San Antonio. What we didn't expect is for Sheila to be joining me this week! Sheila is home sick with a lousy cold... mostly sore throat, runny nose, stuffy head... and, some fatigue as well.  I'm still struggling with overwhelming fatigue, debilitating deep bone pain, and bouts with instantaneous dizziness so bad it knocks me over even when I am seated! This dizziness is actually a bit violent... Even when this dizziness hits me while seated, in an instant, I am trying to catch myself from hitting the floor. When I am standing, I stumble like my world has been instantly tilted to a 45 degree angle trying to grab ahold of something to keep me from losing to gravity.... gravity applying force in a very different direction from which my brain thinks.  What is really odd is that I am constantly falling to my right. In the past, I always fell to the left when these bouts would hit me. This...

After a very rough week of lousy health and a lot of pain, I started feeling a bit better last night and this morning. As a result, I managed to get a little bit of work done on the house.  In the big scheme of things, what I accomplished was very little, actually...  just a tiny little bit of staining outdoors... but it was more than I had accomplished in at least a week. I stained a new landscaping step I installed a couple of weeks ago along our short stone pathway to the back door. While I had the stain out, mixed, and ready-to-go, I decided to stain the two steps leading up to our front deck as well as a small landing at our back door.  The positive thing is I managed to get a small task accomplished this morning. The negative thing is I feel as though my health has now taken a couple of steps backward again. I slept all afternoon which was necessary and really nice especially since I slept in a nice, cool, air-conditioned room. Unfortunately, I am still comple...

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 systemi...

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...

Like most days, I had a plan for this morning.  It was an extremely simple plan, but I had a plan...  1.  Get up out of bed as soon as possible... 2.  Take my cocktail of morning medications... 3.  Start a load of laundry... 4.  Shower and shave... 5.  Get dressed... 6.  Eat something small so I don't stress my body unnecessarily and run out of energy any sooner than my health dictates... 7. Start the car and clean off the snow (Sheila cleaned off the snow this morning before heading to work so my car was good to go)... 8.  Drive to town to pick up a refill prescription (took the last pill last night)... 9.  If I still have more energy, then try to tackle a small project in the house (I still need to finish that fireplace project)... Well...  I only managed to get to number five, "Get Dressed", before running completely out of energy.  So, here I sit, completely spent for the day simply by getting out of bed...

In a previous blog post, I briefly mentioned "The Spoon Theory" which accurately, and yet in an almost heartbreaking manner, describes how I must manage my energy each moment of every day. This spoon theory was written by Christine Miserandino who struggles with Lupus.  In this case, the illness is irrelevant. What is relevant is the fact that most chronic illnesses sap all of our energy and we must figure out the best way to manage and minimize this problem in order to "live", not just "survive".  Although I have always struggled in finding the best way to describe this ongoing problem to family and friends so they can accurately understand my now often flaky behavior, Christine has concisely and eloquently found the words to graphically describe this struggle in energy management in her "Spoon Theory".   Before you continue with what I have written here, I urge you to read Christine's "Spoon Theory" so you will understand...

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 ...