DeanCarl Posted May 15, 2004 Share Posted May 15, 2004 As some have already commented on I haven't posted much in the last couple of weeks. The main reason for this my condition had deteriorated quite a bit in the last three weeks or so. Although this downward trend started just before my MIL got here I do not attribute much of it to her visit. We survived that visit quite well and are enjoying the peace of her non-presence. My energy level has dropped significantly. Instead of a 6 to 8 hours of an energy "window" each day I now have only 4 or 5 hours where I can get out and do things. Because of that I try to make sure I get out and about during those hours. Other times, especially the first thing in the morning and then again in the evenings I experience a LOT of fatigue and pain. I've upped my intake of pain meds (vicoden) quite a bit and that helps. I will probably be going on morphine in the near future (I've been holding off on that due to the addictive nature of the drug, but when I need to I will take it). I describe my fatigue this way. Think of the aboslute WORSE case of the flu you ever had. I mean that time when you were so weak you could barely lift your arms and didn't want to anyway 'cause it hurt so bad. Take away any fever or nausia you may have had and you get an idea of what it feels like for me. Again, this hapens mostly in the early evening hours (which is why I haven't been on the chat room lately). My shortness of breath has gotten worse also. Even minor exertion (like making my bed) brings on a lot of gasping for air and the need to just sit for a half hour or so, even though I'm using my oxygen almost all the time now. Emotionally and attitudinally (is that a word!? ) I'm still in pretty good shape. My goal is still the same, to live my life as well as I can for as long as I can. Little things mean so much more now than they did before. For instance, we have 3 rose bushes that are kinda growing wild in our back yard. A red one, a pink one, and a dark almost purple one. Well this year they outdid themselves. A ton of blooms and they were HUGE! Since our living room window faces the back yard it was a joy each morning to open up the blinds and see how many new blooms we had. They seem to be done for this year, but there's a big old poppy plant that put out some incredable bright red blooms last year and it looks like it's ready to get going. I'm looking forward to see what it comes up with this year. Don't ya'll get too worried if you don't see a post from me for a couple of days or so. I log on at least twice each day and am with all of you as we travel this road. I'm in pretty close contact with two other members plus Gay will let you know if anything happens and I'm not able to let you know myself. Not much else to say other than I'm praying for all of us. Dean Quote Link to comment Share on other sites More sharing options...
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