Frustration with my physical state that is. Honestly being back in hospital is not that bad, obviously I’d rather be elsewhere but my room is nice as are the Nurses and I know this is where I should be so I am content with that. My gut tells me that the reason I had the rygers is because I was and still am extremely tired, both physically and mentally, and there is good reason for that. As you all know the past week has been up and down, left and right, full of opposites and coincidences, and many of them are attributable to the drugs I am taking.
The Catch 22 that I find myself in is that my Prednisone dose, while significantly decreased, is the cause of most if not all my frustration. As mentioned I feel I was readmitted due to my energy level, I am tired as I don’t sleep very much, thus I rygered. Side effect of Prednisone = trouble sleeping. The times I do feel tired enough to sleep my brain and thoughts are quite often running at an all time high, as I have also mentioned I have had some great thoughts over the past week. Side effect of Prednisone = increased mental activity. Of course I am on Prednisone for a reason, which is to fight the GVHD, thus these side effects will remain a fact of life for a while. But they do make it a challenge to remain rested, and ultimately heal when I am not rested. The biggest problem I am having lately is that my co-ordination is gone, you should see my attempt to dial a phone number, or for that matter type a message to 174 people. It is quite something. I am quite calm right now as I just woke up, thus I’m relatively rested, but last night as I got tired my phone almost took a trip out the window to the rose garden that lies below my room.
Really it isn’t so much a catch 22 as much as it is a reality of my situation it just seems that I am running in a circle that has the same view and at present that view is from a hospital room, which is, shall I say… less than ideal.
And just for good measure my Hickman Catheter, which you have heard me talk about many times, you know the Hickman that I speak of so highly and plan to marry when this is all over, yes that Hickman has stopped working. It is quite common and happens without warning and for no apparent reason, I can still receive medications but withdrawing blood has been a challenge. To give you a 2 second explanation, there are two ports that float in my vein and flowing liquid into the vein is no problem but the sucking motion of a withdrawal often causes the ports to become lodged against the vein wall, thus no blood return. Throughout the withdrawal attempts I do a variety of motions and stretches, deep breathing and coughing in an attempt to free the port from my vein wall, but mostly to no avail. That said one Nurse, the IV Nurse and I did manage to get one tube of blood from it this morning so there is still hope, as there is always hope. But of course Mr. Hickman wasn’t up for the challenge yesterday and the day before throughout my initial wave of blood work and my favourite “Cultures”. Just another little frustration to add to the pot. Ordinarily these things would not bother me as much as they are but I think my low energy has weakened my mental strength, don’t get me wrong I still consider myself to have the strength of 10 men, it’s just that about half of them are whacked out on Prednisone.
There’s a shot inside my head for today, I haven’t gotten around to the “22 month picture” yet, but it will be along sometime soon.
Have a good one,
Geoff
#4
