Dying Man’s Daily Journal – my week ups and downs

My week didn’t start off all that well. Spent all day Monday and most of Tuesday in bed not feeling spry. Monday was a first as far as I can remember, Vi took a day off of work to “keep an eye on me”. I kept trying to tell her I was fine but she didn’t like the look of me, hmm that might not be all that complimentary. lol.

Wednesday felt much better and we had neighbor Paul and his son Bob over for supper. Yes this is the same Paul that has been beating me at crib. I thought maybe having home court advantage might give me the boost I needed to finally beat him. What can I say, home court advantage, phooey.

Still poking away at those (&#@*) removations but the end is just around the corner and I will have more energy for the blog which I am looking forward to.

Through out all of this I am still thinking of all the things I have learned from the blog and the many things I already knew but have had so strongly re-enforced in my mind. I have a separate post saved. One in which as I think of something else I just write myself a note, hey I am memory guy.

Every time my thoughts wander in this direction I am over whelmed by a sense of, feelings of gratitude. I am such a lucky man most importantly though is I know it and I appreciate it. Some time back I remember writing thoughts along this line some time ago and was questioned how with my list of ailments I could possibly feel lucky. The answer to that is so very obvious to me. I am still here. Plain and simple I am still here but it goes beyond that. I am still here and I am living life. I do have some physical limitations but then doesn’t everyone to some extent or another. Yes, I do struggle at times when it become apparant those limitations are increasing but with a little internal work I seem to be able to get my head back in order.

Attitude, a positive attitude and the will/desire to keep going are so very important. That kind of attitude is such a blessing, the will, the desire to LIVE LIFE.

I had more to say but just got a phone call. Brother-in-law Henri is in the hospital somehow having amputated his toe.

Also prayers please for our deal blogging friend Mel and her sister. The sister will shortly be under going surgery for cancer. Please

Dying Man’s Daily Journal

Some times I just write about what is going on in my life. Yes, I do have a very good life beyond all of this death and dying stuff. I have in fact written of the world class crib tournaments I play when my dear Aunt Isabel visits. Yeah, yeah, yeah I know I don’t need to be reminded. It must be 5 or 6 times we have played for the “CHAMPIONSHIP OF THE WORLD” and yes each and every time she has beaten me. (I think she must be some sort of card shark that has learned how to stack the deck).

Now Aunt Isabel doesn’t live here in Winnipeg so I don’t get to challenge her as often as I would like. In here absence trying to get as much practise in as I can, I have a couple of times now played with Paul a neighbor across the street. Now I have written about those games and yeah, yeah, yeah I don’t need to be reminded he also laid a sound whopping on me each time.

A couple of days back I decided it is time to bring in the reserves to help me restore the family honor. As Aunt Isabel was not available I called on cousin Marge another avid crib player. Paul’s son Bob is visiting so Marge and I would take them on as partners. A great time was had.

Now for the good news. Marge and I won the first 2 games.  After each game I actually went outside to shout it to the neighbors, huh that didn’t work so well. With the wind the temperature was something like -25. There was no one to be seen any where.

Now this is where I likely could or even should end the story. This was when Marge and I should have stopped playing. But, no we had to carry on playing 3 more games. Now I am not going to actually say who won those 3 games, that I leave up to your imagination. One of the three was even a skunk.

That is it. Paul you are in trouble now. The next time Aunt Isabel is town I am sending her over to take you on.

It was a lot of fun and I thank you Paul, Bob and cousin Marge.

Dying Man’s Daily Journal – You don’t have to be alone

I always encourage all to read all of the comments left by others here on the blog. So often within these comments wisdom far beyond any I could ever hope to provide. Often there we will also read the touching and heart breaking stories of those that so badly need the loving support I know from personal experience we can all provide here. Such in fact is a comment left several days ago by Ellie. At the time I just did physically not have the time to respond in the way I would like to. Yes, even I have busy days some times. First off, here is Ellie’s comment:

“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”

Now back to me.

Hi Ellie. I thank you for sharing your story with us. When you describe your medical condition, I am amazed at all you are going through. We know heart failure is not a condition unto itself, that there is an underlying condition that brings it on. i am certainly not a doctor to be able to explain such things but what you are going through is different and many time worse than am I. If I don’t over do it I go through most days in relative comfort. Yes, I get chest pain but my nitro spray quickly takes care of that. Shortness of breath and constantly feeling tired, worn out are my big issues. When it comes to the fluids I tend to retain fluid and require what I am told are massive doses of medication to pass it. Many times I have said I am a lucky man and when I read your story, that fact is really brought to mind. My heart, what there is of it goes out to you.

Now when it comes to dealing with family and friends that is a hard one. This hits right to the core of why I started this blog way back when I did. To try and create a spot where those with a terminal illness and there families can come and receive loving support and comfort. At the same time possibly providing a venue where a greater understanding for both can be reached. People fear death to the point of being nervous to even think of it or talk about it. When it suddenly jumps up and “hits them in the face” when they are forced to deal with it, they just don’t know how to react. How should they react? I suppose in the best way they can based on their personal thoughts, feelings and fears.It is hard but by even doing their best it well may fall short of what we may hope for or even what they may be hoping for.

I read the comment left for you by our dear blogging friend Mel. I hope you have read her comment but if not, I am reposting it here. Please know you are welcome to return here as often 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 More.

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

Dying Man’s Daily Journal – Rules of this blog

It is my intention that this be a loving, supportive and non-judgedmental space where all are welcome. All are welcome to share their thoughts, feelings or fears, seeking comfort and support in a safe haven. I was upset this morning to read a comment directed not to me but to another commenter. Let’s just say it fell far short of anything I find acceptable. If you disagree with something I say feel free to express your opinions in a respectful way and I will accept it.

What I will not accept are what I feel to be INAPPROPRIATE comments directed specifically to others that have had the courage to share deep and personal thoughts and feelings with us. This type of comment is immediately moved to the trash where it rightfully belongs.

 

Dying Man’s Daily Journal

Taking a break from the renovation, not complete but as far as we can go for now. I realize that at different times I have written about trying to get these different projects finished. I write about how tired I get……. I want to make sure i am giving due credit and recognition to my brother-in-law Henri. He gives a lot of his mornings to come over and help, without which most things just wouldn’t be getting done. Thank you Henri.

I will be back at the computer much more frequently for the next while any way. For my 1,000th post I asked for suggestions on what I could do to make it special. I do thank those that left me a comment. generally, it was suggested I make a list of the things I had learned while doing this blog and there are many. I have been working on that and have quite the list made up. I think I actually have a sort of game plan here, will I follow it, not likely but what can I say. I am going to try to do individual posts about many or these items and then maybe a recap or something. When it comes to this I just sort of wing it so what will come will come.

The biggest thing for me is something I have actually known all along. It is just there is a big difference to knowing it in your head and truly feeling it in your heart. This is something I constantly working on. I am getting much better, but don’t be mistaken though I do have my days but I think that comes from being human. At least that is the excuse I use for myself.

I look back through my life and realize when it came to really living life I was most often my own worst enemy. I am sure this doesn’t apply to everyone but I imagine it does to the vast majority. I wonder how often I have written “Live life, don’t just endure it” Now I know that is easy to say but what does it really mean and how do you do it? Right away I can hear many saying, I could live my life better “if only”. I know been there done that. There are thousands of “if onlys”. Or how many of us are waiting for life to get better “when”. Life will be better when I finish school, or when I get a promotion and more money or when the kids are finished school………. How good have we all become at making excuses or rationalizing why our lives are not as “good” as we would like them to be. It think it is just one of our natural human traits. It is easier to just pass the blame than except where we are in life.

I like to think we journey down the highway of life and that highway ultimately leads us ALL to the same destination Our lives are a day by day process as we make that journey. When we reach the end of that journey the same fate awaits us all. The only difference between any of us is how we make that journey, who we process and get through each day. Our lives are an ongoing sucssesion of these days until we reach the end of the highway. Each individual day is one more step towards the end of the journey. Really we all know this but just don’t want to even think about it in those terms. Think about it any journey only has so many steps in it and we just don’t know how many that may be.

 

Dying Man’s Daily Journal – worn out -Vi will be here

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 Man’s Daily Journal – HAPPY BIRTHDAY VI

Happy birthday Vi. I do hope your day is wonderful, even with  working  for a 12 hour shift. To Nellie, Vi’s mum I say thank you for bringing this young lady into the world those years ago. Vi thank you for being a part of my life. For putting up with me for all these years, you either deserve a medal or should be locked up in an insane asylum, hmm,  I am not sure which.

Some may ask how many candles are on her birthday cake. Well in my attempt at least to remain a gentleman that I can not reveal. Let’s just say she is 39 and holding and holding and holding.

Happy birthday sweetie.

I have been talking to Vi and there is a pretty good chance she may occasionally begin adding some of her own thoughts to some of my posts or who knows maybe even have a few posts of her own.