I have recently waxed ecstatic about my apparent – actually obvious – muscular and appetite improvements. This lit a fire under me and I began this project of rehab description as well as finishing a 15 page treatment to send to an interested publisher about my book.. But, like everything else in this world, it just takes a few small, diabolic events to cause a lethargy stemming from a sense of hopelessness and, as always, pain and discomfort. The road is so long.
So I now undertake the effort to depress as many people as possible by describing one day of a rehabbing man which went South and where he finds zero solace in much of anything, outside of my fingers on a keyboard. I owe my readers this, however, for the pure sake of honesty because there were numerous and dreadful days leading up to my latest improvements.
Last night I probably overworked. I finished an asked-for 15 page “treatment” of my up-coming book on Jack Hicks, to please a publisher who asked me for it. I am delighted I finished it because I can now submit to others if this one gets weird. It also allowed me to seriously edit the work.
So I was done around 1:30. I had taken pharmaceutical help for sleep about a half hour from finishing and my eyes did indeed begin drooping. So, reasonably satisfied at my work product and then beginning a plan to write about the nurses I have encountered – a revelation – I hit the bed. The nightly routine is to change a wound dressing to contain my constant leaking for the night, if possible. I often wake up drenched at the waist when I sleep for longer than 4 hours.
Well, this was a rough one. At 3 AM, I woke up to the smell of poo. My ostomy bag had sprung a leak. Inasmuch as the wound dressing was affected, it meant changing everything, which is doable. One of my current problems has been the ‘continental drift’ of each orifice – the wound and my “stoma” – closer to each other as I healed. It now results in a new problem of moisture preventing the adhering of any tape or adhesion for either element. I try and remedy it by doing the same thing over and over. The frustration level of my constantly-dripping open wound got under my skin and I nearly cried. All I do now is add towels to my waist to sop up as it becomes necessary. It is sloppy but effective. I even walk around the house with this protrusion at the waist band and tummy consisting of whatever I am using to protect my pants and clothes from getting uncomfortably wet and cold. I lose this battle now frequently.
I woke again at 6:30 to a fairly dry scenario, but I was not sleepy. That’s cool – I often relish the wee hours for th solitude and quiet it offers for doing tasks online. But when I sat in this here cockpit, I found myself wracked with such stomach pain that I nearly passed out. Every position I tried kept or increased the sharp pain. Finally, I went back to bed and found a position, thank God, which lessened the pain. I immediately fell asleep and woke up at 8:30. The pain had gone but it all left me exhausted already for the day.
Which was a problem because today was the day to get a CT Scan…..scheduled arrival at 8:30. Oops.
Fortunately, I called and pleaded to be seen, especially important since I see my Doctor in charge of all this on Monday. All was forgiven and my appointment was rescheduled to 11. It also meant I had to wait and hour and a half once I got there so that I could drink 30 oz. of this lemonade “contrast” and etc. The waiting room was interesting with 3 cancer survivors talking and – frankly – crying together.
Anyway, that all got done and Tom drove back down to get me. Such a sunny day inspired me a little. But when I got home, I still had 2 nurses to visit – one just to discharge me and the other my delightful “Wound Specialist” to assess my stomach in general. Her name is Tisha and she has been a major emotional boon as well as great good company. Plus, she knows her business – no small thing. She is the person who can remove my bandages to look at the wound and often take pictures, but who also has been known to raise her voice in excitement, saying, “Oh wow, look at that beautiful wound!!” Needless to say, she likes its progress and, if she does, then me too.
After she left at about 4 I considered my condition. I felt extremely weak, for some reason or other, plus I was experiencing thoughts of failure. I went and lay in my bed for just a few moments – I thought – and woke up 3 hours later – a new one.
I felt slightly refreshed and a bit more able to get up and around. I promptly went in and lay on Mom’s bed – my usual position – and we talked for a while. Feeling weak again, I traipsed back into here and positioned myself in the cockpit, It hurt, lol. I have found it near impossible to get physically comfortable tonight. Nothing works and I am set to wonder if it is not largely attitudinal.
I felt so miserable all day, but able to walk and talk, still. I functioned but at 30% well. I had to take a wheelchair in the CT Scan joint because of my weakness. Nor was that “attitudinal: – we misplaced registration at the hospital and I had to walk a real distance to find it. I arrived at the desk, breathless. I scored.
This is “one of those days”. There have been a few and I add this because people going through anything similar can relate. The question is will it last, these feelings of crap, or will I wake up fresher tomorrow and back on schedule. This is “the way”.
It’s a rollercoaster for sure Steve…thinking of you and praying that Saturday is a very good day!😊
You body needs rest, Steve. Lots and lots of rest! Is there anyway you could get a tablet so that your impatient mind/soul could work, while you are physically in bed?
Take my advice with several heapings of salt, as I have never walked the long road you are walking.
Sending you positive thoughts, prayers & hugs! Wish I could do more for you.