Scattered Thoughts . . .

Whenever I go through periods of poor health, I struggle with finding ways to feel productive, useful and even nonburdensome to those around me. As any chronically ill patient will attest, far too often I'm feeling too lousy to accomplish enough to stave off feelings of inadequacy during these periods and it is incredibly difficult to find ways to feel productive. Physically, during these periods, you are fighting off pain and a complex and constantly changing myriad of debilitating symptoms. Mentally, you are fighting off being bored to the point of tears because whenever you are feeling lousy, you are sort of in a vacuum getting nothing accomplished. Emotionally, you are fighting feelings of inadequacy, being a burden and being unproductive... you struggle with not having a purpose... you even struggle with the grief of losing the healthy, strong and pain-free body you once had, the active life you once had, the career you once had... let's just say that struggling with gri

I had a fairly good day yesterday... my health was relatively stable... I did some annual staining around the outside of the house... I assembled a hand pump station and stained it... I assembled the galvanized plumbing fittings... it was a productive day! This doesn't mean I didn't have moments of borderline lousy health yesterday... I did. A few times during the day, I needed to cool down... cold showers... cold water over my head until I cooled down... cold water on the insides of my wrists to cool down my blood... It was around 90 degrees all day so I had to work hard at keeping my body cool so my health would not fail. Around lunchtime yesterday, I wheeled our air conditioner to a window... set up the vent in the window... plugged it in... and we had air conditioning in our living room, kitchen and bedroom. I might need to resort to turning on the air conditioning today just to cut the edge on the humidity which is causing serious breathing issues for me today. Today

Whenever friends and family see me, they invariably ask the standard question, "How are you?" More often than not, I respond with an "Okay..." and a bob of the head.  The real answer, however, is that I am never okay by a healthy person's standards. The truth is, "okay" to me simply means that I am well enough to be out and about with only a moderate amount of pain. It means I am well enough to be standing upright and talking. It means my health is currently stable enough that I am not needing to stay within ten feet of an available bathroom because I'm going to be sick at any moment. It means I prepared to be out and about by taking extra medications and foregoing all other activities so I would have the energy to be out and about at this moment in time. This is "okay" to me. "Okay" for me means I can attempt to accomplish some household chores which will always result in me being "less than okay".  "Okay&q

I've had Systemic Mastocytosis episodes ranging in severity from 1 to 10 over the past decade and a half. Some episodes are worse than others but they are all quite debilitating.  Some episodes last for weeks, some for days, and, on the rare occasion, only hours. The symptoms of these episodes are varied but always include physically, mentally and emotionally debilitating symptoms, a lot of pain, and even life threatening symptoms. Last night, however, I experienced a type of episode which was new for me. Many other patients experience this type of episode often but it was a first for me. I don't think this means much since each patient presents this illness differently. Last night, my breathing became difficult rather suddenly and then I quickly noticed that swallowing was difficult. I definitely knew this was not a good thing! Within about a minute, I realized that my throat was swelling and closing.  I quickly grabbed my bag of medications as well as my emergency medic

For days, we had planned to head to Lowes and Home Depot on Thursday night. We need some building supplies so I can begin renovating another bedroom. This particular renovation project was down fairly low on my "to-do" list but was recently moved to the top. I bumped five or six other projects so I could start renovating this bedroom. Heading up toward Burlington on Thursday night fit into our schedules without having to change anything and the weather was forecast to be beautiful. The building supplies would be on the roof of the car, exposed to the weather, so we need good weather for this particular purpose. Actually, for an activity such as this one, we need good weather to coincide with good health. Last night, some miserable health changed everything. My health had been teetering on that fine line between "okay" and "poor" all week. In hindsight, I should have been more aggressive at adding extra medications to my daily medications. I did add som

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

My health is finally feeling as though I am over the hump with this nasty, lingering cold. Today is the first day where I feel as though I am "recovering" from the cold symptoms. Although, my overall health is still quite miserable and I'm still struggling with typical Systemic Mastocytosis symptoms which are probably as a result of the lingering cold. The cold itself, however, seems to be waning... finally. Since I was feeling a bit better this morning, I quickly decided to pull out a camera, a lens, a tripod, a light, and a remote shutter release to see if I could get a photo of myself. I think I had to shoot about two dozen photos just to get two decent shots. Absolutely accurate focus is impossible to do with a remote shutter release. Ohhh... I just remembered something I could have done... I could have used my Kindle Fire tablet to choose a focus point... uggg... I should have thought of that this morning. I have an app on my tablet which allows me to control my

I often write about and harp upon the need for understanding when it comes to people struggling with chronic illness and/or life threatening illnesses. Tonight it is time for me to harp on this yet again because Sheila is hurt and I am subsequently angry and rapidly losing my patience with far too many people who don't seem to "understand". As a result of this lack of understanding, I am truly at my wits' end and we are exceptionally close to again shrinking our circle of family and friends if this very tiring behavior does not change. I, myself, have a long list of health issues and struggle with significant disabilities every day. The major difference today, however, is that I am referring to and coming to the defense of Sheila since she is very upset right now and has been very upset at the last two family events because of this rather callous behavior. It has gotten to the point where Sheila actually dreads attending any family events because so many people na

When it comes to art and creativity, I've been in a deep rut lately. I just can't seem to produce anything which pleases me. I'm one of those people who must be feeling fairly well and be in the right frame of mind to create or even attempt anything artistic, including creating music. As you can tell from some of my latest blog entries, my health has been rather lousy lately and this has spilled over into everything I attempt to accomplish. My health was no different this morning than it has been lately... I awoke feeling worn out, exhausted, my ability to think clearly was a muddled mess. I know I'm in pain (I think my bones are hurting deep inside) so that doesn't help matters any. My mood has been quite poor lately as well (car problems I don't want to deal with, prescription medication problems which are frustrating and causing me to run out of a few important medications compounding my health problems, not having the energy to do the things I want to d

I've been fighting a cold for months. With my health as poor as it is, a cold can be a major health risk and problem. In January, I developed a typical winter cold. It lingered through to mid-April before abruptly worsening significantly. When this cold worsened, my nose was running like a waterfall... constantly. My eyes were irritated to the point of mildly burning. After a few days and a lot of cold medications, this runny nose turned into a constant post-nasal drip... or flow. This caused me to lose my voice and I started a bit of coughing. I was having great difficulty breathing and was wondering if maybe I was developing pneumonia. Subsequently, my energy level plummeted to the lowest of lows.  After two weeks of these significantly worsened cold symptoms and months of lingering cold symptoms, I think I am just about back to "normal"... as "normal" as I could be with Systemic Mastocytosis and extensive spinal injuries anyway. Funny thing is that the

My health has been rather lousy for the past week with the last few days being the worst.  This happens fairly often.  Well actually, it happens far too often!  Anyway, whenever this occurs, I find myself sitting around thinking about all the things I wish I could be doing instead.  I'd rather be building things for the house...  I'd rather be active with some hobbies...  I'd rather have energy for socializing with family and friends...  and I truly do wish I had the energy and health to workout like I used to do every day and not just the basic daily physical therapy I struggle with daily! And, I can't begin to explain how much I miss having a job that I absolutely love. I find myself sitting around trying to remember what it was like to have no pain...  to be able to breath easily...  to be able to do anything at all without pangs of shooting pain...  to have the energy like I did before this illness changed my life completely.  At this point, it is incredibly dif