Scattered Thoughts . . .

After our followup appointment with the surgeon on Friday, suddenly, we found ourselves with a three day holiday weekend, no plans, and a cleared schedule for a week or two as we wait on further test results.  After a few weeks of hospital visits, surgery, and bad news and even worse news it was nice to have a little breather. As you could probably imagine, under these circumstances, we both wanted to get away for a bit.  Sheila wasn't in much of a mood for socializing so a weekend for us alone was what she really wanted and needed. I think there has been too much focus on conversations of cancer and treatment over the past three weeks and Sheila needed a break... and some rest... and some sleep...  generally speaking, she needed some quiet time and a change of scenery. Friday afternoon, we searched online for a hotel room for the long holiday weekend... as we expected, we had waited too long to book a hotel room on a holiday weekend. We even talked about the option...

I've been feeling a bit better the past few days as related to the lingering cold that Sheila and I have been struggling with since January. Now I am struggling with lingering fatigue... an oppressingly overwhelming fatigue which defies any accurate description. I slept for 11 hours last night... 10 hours a night has been the norm since this cold started in January. I've also been sleeping for 3-4 hours every afternoon... and, sometimes, I've been napping for upwards of 5 hours. That doesn't leave much time awake each day! I manage to get beyond breakfast each day... make my lunch... but then have no energy for cooking dinner. I rarely even have the energy to shower although I do shower on some days but must skip breakfast in order to save some energy so I can shower.   Energy management... everything is a trade-off. My body is rundown and I can't seem to accomplish much. Needless to say, I am quite bored and feel the need to accomplish something.  A fe...

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...

Today is a perfect example of how just one small errand can put a quick end to my day. I awoke feeling halfway decent... I decided to tackle some small tasks around the house this morning since I was feeling well but first I needed to run a quick errand. I needed to run to the local grocery store this morning to pick up something for lunch and a few other odds and ends. On the short drive down to the store, I actually felt much better than I have in recent memory. As a result, my thoughts were filled with all the wonderful things I could accomplish today... even thoughts of activities I used to be able to do when I was healthy.  I knew this errand wouldn't take long and I was looking forward to having a very productive day for a change.  I had so few things to purchase that I was in and out of the store within a few minutes but, unfortunately, this simple errand required more energy than I had in me to expend today despite how great I felt only a few short minutes earlie...

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...