I feel just plain worn out. That worn out feeling that seems to just go right to the center of your being. I have been working on the final room in the renovation master plan I have had all along for the house. Now working at “Bill” speed (Bill speed is working for 2-3 minutes and then sitting down to huff and puff for about 5 minutes) and only being able to do that for a couple of hours each day does extend the length of time it takes. . It seems I can only put in 2-3 of my “work” days and I have to take a couple of days off to regenerate tha batteries.But, hey step by step I am getting there. My mood, my thoughts about this whole thing vary by the day, or maybe it is by how worn out I am.
There are times when I feel very frustrated over my lack of stamina and how slow things are going. I think back to how there was a time when I could have worked all day and then come home and put in a real 4-5 hours of work on it. Then I have to give my head a shake and rethink it. This really has turned into a much bigger project than I first thought but the fact of the matter is I am getting it done. Life may be slowing me down but it is not stopping me. I have to keep reminding myself life is not a race to get things done. It is making the most of our time while we are getting those things done.
For both Vi and myself I thank all those that left Vi the birthday wishes. I know she will be coming on-line to thank each individually. At her work place they are so short of staff she has been putting in 12 hour shifts and is just too tired when she gets home to do much of anything. She is being shy but she will get here.
Dying mans daily journal 
Hi Bill .. good for you for continuing on, even in short short bursts – and Vi had a birthday .. I’m looking back to see ..
Look after yourselves – 12 hours shifts are draining to put it mildly .. cheers Hilary
Well, for Pete’s sake, Bill. I rank your stamina right up there with ant stamina. You know how those tiny little critters haul things around twice the size of their own bodies? And they’re always workin’ at something. Just like you. Now, it may take an ant 4 days to move a crickett 5″, but the ant will get the job done. It isn’t the speed that matters. It’s the dedication, the will, the in-your-face-confidence to just keep coming back to the task. I admire you.
Ohhhhhhh! Well said!
LOVE THIS WAY OF THINKING!
Well then–after rangewriters’ response, what more is there to say.
I know the rewards of perseverance. They’re GREAT. Never under-estimate the power in that little principle and keep doing whatcher doing…ants get that cricket moved, by golly! 😉
And the care-taking bit of me says….LOL…..12 hours is a heck of a long time. The both of you need time to just BE!
Now, granted, I’ve always struggled with ‘balance’ and ‘moderation’. Neither are really my strong point–I tend to let the Big Guy make those arrangements for me. Which is WHY He puts people in my path to tell me ENOUGH!!!!
JUST sayin’……
A bit of a break, a bit of a detour from the routine, a bit of an unplanned adventure–good things! 🙂
I’m with Linda (Rangewriter) and Mel…every inch a victory. I’ll add: and God given!
Well done. We all need purpose and what a legacy you are developing!
Oh Bil,
Every moment breathing in and out is a blessing. One of those lessons some of us have the opportunity the learn.
(That’s me on a good day with something profound to say…other days, I just get ticked off and scream until I go hoarse (takes about 30 seconds now).
Love ya Bill . . . hang in, keep those breaths going. give yourself a break and strong pat on your own back – you deserve it. My theory: make peace with what you can and then just throw a tantrum about the rest.
Thanks for your wonderful corner on the web.
Vi Belated happy birthday, Henri
Hi, Bill. Thank you, thank you for this wonderful website. You are a hero to me; I needed to find this page today.
We are almost in an identical situation.
My name is Ellie and a gal your age (small world). I have had a rare type of autonomic nervous system failure. I, like you, am dying of congestive heart failure, weekly hypertensive urgency events, inability to retain water (I have a central port where I get saline bi-weekly), continuous heart attacks from variant angina, etc.
May I ask you for some sage advice?
First off, I am blessed with a loving husband who is supportive.
After my parents (great caregivers) both died, many remaining family (in-laws and my relatives) and close friends pulled away as soon as my pcp told me to inform them I’m a goner. (Stupid me.)
My sister has a denial problem and tells people I’m not even sick (how weird is that?). My in-laws are medical professionals and tell me “I don’t know what to say to you.” Wow.
Response are: “I don’t know how to talk to you” “you lied: you said you were dying and 18 mos later you are still alive” “I’ll drop off some food (so I don’t have to talk)” “I’m spontaneous so if you aren’t up to the visit, then too bad” “can I help? – you tell them how they can help and then they DON’T do it!”
Every day I have many things I must do correctly or I will die. It is that simple. But I can’t explain this as they WILL NOT LISTEN if I discuss my illness.
So I try to make visits and calls about them. But these grown adults act embarrassed and anxious to get away from me.
What to do?
I’m a good listener, witty in conversation, well read, volunteer online, and do medical research for friends/family. I am friends with the 10 or so people in my state with my illness, thank God. But my friends since childhood are running away.
If I cannot add to others’ lives, what is the point of all this suffering?
Any brief thoughts on this, Bill?
It is an honor to have read your story. I’ve found additional strength in your tale of bravery. I hope today was a good one.
Thank you very much.
Warmest regard and respect,
Ellie More
Hi Ellie and welcome to the blog. I can relate to much of what you are saying through out your comment and my heart goes out to you. I just checked the blog on the way out the door to a dr. appointment. I just want you to know for now that I have indeed read your so touching comment and will be replying in much more detail this afternoon or tomorrow. Until then be well my friend.
Bill
Oh Ellie–such a candid and honest, albeit difficult thing you shared here, with us. I’m honoured that you felt you could. And I hope you remain and find some support through the folks that grace this little haven that Bill’s dedicated to. It’s a lonely thing, being diagnosed and being handed the raw truth about our mortality.
I know how difficult it was for me and how difficult it’s been for my sister who’s recently been diagnosed with oral cancer. People had some very normal reactions–because they don’t know what to say, what to do and how to face the pending loss, they offer lip service….and some who really want to be present, just can’t seem to make themselves deliver. It’s their way of dealing. It’s not fun for them and it’s not fun for us. We can tell them what we need or would like and they can yes yes us, but sometimes it’s just overpowering, I guess. Fear does stupid things. Denial is a weird system of coping–but it works for some. And mortality is everyone’s companion, even though some want to pretend that doesn’t apply to them.
I try to accept that it’s just where people ARE in their own process and keep moving, embracing those who aren’t there–and I just keep moving. That’s the same thing I share with my sister. It’s just where they are. I don’t get to ‘move’ them any faster than they’re ready to BE moved. And I pray for them and bless them….cuz really, I get the privilege of not being in their shoes. I was there once. Circumstances moved me from that place. What I get from where I am today is an enriched piece that I can some day hope they’re able to find. But I can’t make them be where they’re not.
I know it’s lonely and difficult and a hard place to be. I’m so glad you’ve been able to continue to connect with people, no matter the medium. And I’ll hope for you to stay connected with us, here.
I say it loudly because I mean it…..NO ONE needs to do this alone. You shouldn’t have to–and gosh……look at where you landed. Here! A place that invites you NOT to.
*huge hugs*
I hope you’ll remain and be a part of this family–we’re kinda cool. And Bill is ‘okay’. LOL (okay…..I said that tongue in cheek…..Bill ROCKS and we love him dearly!) 😉
[…] as you like and know you will receive loving support. Here is Mel’s comment. Submitted on 2012/02/11 at 4:43 am | In reply to Elegia […]