Health Update

Plain and simple, this past week has been brutal.

Whenever we have a busy weekend of activities, it affects my health for the next week... or month. Last weekend was exceptionally busy from Friday through Sunday. We had squeezed in about three activities and three different places each day... I skipped my daily two hour naps... I was on my feet throughout most of the weekend... and we were on the go all the time. This is a recipe for a long bout of miserable health in my foreseeable future.

In preparation of the long, busy weekend, I rested up in the days leading up to the weekend (longer naps each day and did virtually nothing each day in an effort to preserve energy). I also squeezed in more medications in the days leading up to the weekend as well as all through the three day weekend. I can get away with this particular plan of attack if I don't do it too often. It allows for fairly decent health for a few days but there is a price to pay... the price is exceptionally poor, miserable, brutal health and no energy for a long period of time afterward.

My week started with typical Systemic Mastocytosis problems... borderline anaphylaxis with dizziness, lightheadedness, weakness, vision issues, breathing difficulties, palpitations, tachycardia... epinephrine is my friend during these periods (as well as a few other emergency medications) to avoid crashing into full anaphylaxis.

I was also feeling the start of neurological issues early in the week. I experienced a lot of neurological symptoms before my diagnosis which means this was during a period before my relatively effective cocktail of medications. I had so many neurological symptoms, in fact, that many doctors felt I was developing Multiple Sclerosis. Eventually (years later), we realized that my mast cells were attacking areas of my central nervous system during that initial period. Anyway, this happened again early this past week and it reminded me of all these neurological symptoms I had struggled with in the beginning of this insidious illness.

By Wednesday, the inflammation worsened in my spine... and it seems that my mast cells then became overactive in that area of my body... which, I must add, isn't all that much fun! Overactive mast cells responding to inflammation only makes things worse... much worse.

This week, I'm walking around like an elderly man... hunched over... very slowly (sort of like Tim Conway's old man routine... shuffling along, tiny steps, bent over)... with moans and groans involuntarily emanating from my mouth as I attempt to stand... or sit... or roll over... or walk... or bend... and forget about twisting! You don't realize how often you twist in a day until it hurts like hell and buckles you at the knees every time you even slightly twist in one direction or another.

When I experience periods of brutal health such as this... and it happens far too often... I want to point out that I still try to accomplish something each day regardless. I've written about this many times in this blog but it is worth saying again... everyone needs to feel productive no matter how lousy their health is at the time. At the very least, you must feel as though you accomplished something no matter how small.

In my case, this week I worked on a model train locomotive... It required some tinkering and fine adjustments but now it is running beautifully.

I slowly shuffled out to the backyard three times this week with a camera in hand to find things to photograph... this produced a few decent photographs (a couple are included in this blog entry).

Regardless of how I feel on any particular day, I still attempt to run through my daily physical therapy everyday. Of course, with worsened spinal pain I must adapt the physical therapy to focus on the problem areas but I still accomplish some physical therapy each day... even during periods of extremely lousy health. I've been doing this since my first line-of-duty spinal injury in 1997... almost 20 years now! Regardless of what many people may believe, when you injure your spine, it will require care throughout the rest of your life.

This morning, Friday, I finally showered and shaved (first time this week... to be honest, I really stunk and needed it). If I had showered any other day this week, I would not have had the energy to accomplish anything else. So I changed my priorities to fit my needs. Plus, I knew I would not come in contact with any other humans this week during recovery so a shower was not high on my list of priorities because it would waste too much energy.

Now, do not confuse “accomplishing something” and a “feeling of accomplishment” with “enjoyment”. This week was anything but enjoyable. Even the smallest of laughs or chuckles was excruciatingly painful. Trying to watch “Rules of Engagement” the other night was terribly painful whenever I laughed. At least, however, I can honestly say I accomplished a few things this week... but, it was not fun... it was not enjoyable. I just continued to push forward.

So... what is it like to experience this? I'd compare it to having a bad case of the flu for two weeks... headaches, sore throat, in and out of the bathroom, nose running like a waterfall, aches and pains... but, to be honest, the flu is not painful enough to be an accurate comparison even though I do also get histamine headaches, I'm in and out of the bathroom sick as a dog, I have aches and pains, and my nose actually does run like a waterfall whenever I'm in the bathroom sick as a dog. These flu-like symptoms pale in comparison to the symptoms I regularly mention so I don't even mention them most times (unfortunately, these are symptoms I often forget to tell my doctors as well). I'd say we might be getting close to what I'm talking about if we say it is [(Flu x 10) + 26] squared... or like having mononucleosis bad enough to be hospitalized... it is brutal. (And, I've had mononucleosis three times, once putting me in the hospital for two weeks... so, this, I know all too well.)

Anyway... this is how my week has been this past week. Unfortunately, this is so common that it is expected whenever I squeeze in and enjoy an extended weekend.

UPDATE:  It is now Saturday morning and I am finally feeling "mediocre"...  not "brutal", not "fair".  I wrote this blog entry yesterday but I didn't get to post it until today because my desktop computer was tied up with a major software package update which required two full days (I'll probably write about that another time).