i thought i was ready…
July 27, 2013 at 8:03 pm (Uncategorized) (end stage congestive heart failure, heart failure and exhaustion, living with dying, the dr. says, waiting for the end)
now i think maybe not.
last week i thought of writing a post to reveal and to contemplate the very real possibility that i am ready to go. the low energy coupled with the excessive hours of sleep had me pondering if this was the time to get off the train. i wasn’t sad or depressed. i simply thought if i am not able to find joy along with the feeling i had been abandoning my love of late. so many times we are invited to be with friends only to find that i can not participate. if only he could go on without me. he won’t though. will he when i am not here? i hope so. i worry about him and know that he can become depressed and that sometimes leaves him unprepared to be social. this is why i think it might be good for me to find the next woman for him. some one he could be friends with and hopefully find love again.
today i found myself thinking i may go back to the senior pool. they have a lot of classes and a couple of underwater machines. i could not do the whole class but that would be fine. everyone sort of does at their own ability. i have lost a lot of physical strength. to even raise a glass at times is challenging. i am not ready to be that incapacitated. no i am not ready. i am ready to see if i can make a difference for myself. there is the possibility that i will fail but i don’t care. to not try would be the real fail.
monday i commit to renewing my membership and attending at least 2 classes per week, or to work out on my own. either way i am going to give it my all. that is the way i want to live. giving it my all and holding nothing back.
the one?
July 22, 2013 at 8:49 am (Uncategorized) (living with dying, making memories, the dr. says)
friday and our trip to one of our favorite places. we love the atlanta bread company. they serve soup, salad and sandwiches. not fancy but good. our trips are not every friday as in the past. it is more difficult to find the energy to go out at all. not that i am ready to give them up yet.
we are coming off several days of little waking time. for example, i layed down for a nap at 3 in the afternoon. i woke once to use the bathroom, sleeping until 1:30 a.m. up until around 4 a.m. and then going back to sleep. my expectation was with all that sleep i would be up and perhaps feeling restored. that was not to be this time. i did not wake again until 6 or so that evening. going back to bed a few hours later and not up and functioning again until 2 in the afternoon. on friday when i woke at 2 in the afternoon i forced myself to get up, shower, and venture out. last friday i had been able to go out with a friend for dinner so i was very optimistic.
we are sitting at the table having just finished our soup. our conversation is about finding “the one” and whether or not we believe it happens. he tells me it happened to him when he met me, he reaches across the table to hold my hand. he glances down and i know this to mean he wants to say or ask something more. he looks up at me and says “i am afraid to ask if you felt the same way.” i can’t help but laugh a bit, we are getting ready to celebrate our 18th anniversary. we have been together 21 years. my hand reaches for his and i want him to know that i felt he was the one from the beginning and he will be the one until i am gone.
we know how lucky we are and have been in finding each other. as i recently told a friend, we enjoy hanging out together, we are best friends. i can imagine going through this without him and it is not a happy thought. this is the best time of my life. from the day i met him til the die i am gone i will be grateful to have found “my one.”
i just want to breath
July 16, 2013 at 6:03 pm (Uncategorized) (congestive heart failure, heart failure and exhaustion, how does it feel to die, the dr. says)
he asks if i want to go to a hotel for the night. he will do what ever he can to make me comfortable.
it is about 90 degrees and our air-conditioner has failed. the heat makes it almost impossible for me to breathe. the heat is not my enemy. it makes it so difficult to breathe.
the saving grace for me is the single unit in our bedroom is keeping the bedroom nice and cool. i do not need or want to go to a hotel. it is uplifting to know how much he cares and that he goes into action for my comfort.
what a guy, what an amazing husband he is. gonna lay here in the cool room and doze if i can.
quick question
July 16, 2013 at 4:57 am (Uncategorized) (congestive heart failure, cremation, sisters, the conversation project, the dr. says)
so here it is and then i am off to sleep. when my sister was here we started talking about cremation. of course she is the only person in my family that i would have this discussion with. may i add we laughed although not all would find this humorous.
when cremated how do they separate the human remains from the ashes of the container used? if no container is used why do they charge for it? i have looked online for the answer and didn’t find it.
if anyone knows and is not upset by the question would you share the information me? i would really like to know.
ok going to bed now, good night.
what is this?
July 11, 2013 at 2:55 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)
i am wondering just what is happening to me. it has been some time since i sat here at the keyboard for more than a few minutes. my priorities have been to answer emails, fb messages and to read my favorite blogs. trying to make the occasional comment. sounds easy but lately not so much for me. my dyslexia seems to be worse than it has been for years. actually i thought it was something i had overcome. it is not such a big thing now.
today i slept until almost 9 p.m. and it was a struggle to get up then. i am ready now to give in to my body and return to bed. it has been a lost day. yesterday i asked for help to get up by noon, he came to our room and gently woke me. he layed on the bed beside me talking, helping my mind to jump-start. we went out for a short time and came home. took a 2 hr. nap and then on to the movie. by the time we came home i was so tired. a minor issue with family was discussed and we (sister angie) decided to pretend we are the only family left. reality is we have been the ones who we could turn to in good times or bad. my relationship with angie is one of the most important i have had in this life of mine.
so i am wondering what all this sleeping means for me. i am so exhausted all the time now. i wonder how he is coping, he says not to worry, says he is fine. with each new change i worry what it means to him. of course he is not the only one who is affected but he is the one i worry about most.
on our last trip to charleston we stayed in a hotel. nice hotel and i missed the sounds of the house but i slept so much it would have been difficult for the kids to understand. chris did wonderful. he managed to spend time with the family and be back at the hotel with me. we ordered room service whenever we were not with our family.
for weeks going on months i have been waiting to go back to my normal. well folks i think this is my new normal. whether or not this is “a good quality of life” is something i will watch and adjust of needed.
i have searched for a way to explain what happens with my brain during these times. if you have had surgery then you may be able to relate to this. there are times when i try to make myself get up but there is this haze and it drives me back to bed and sleep. it is that feeling similar to when the anesthetic starts and there is a sort of ringing in your head or a buzzing then your out. this is exactly how it feels to me. i want to get up and be productive. my body just doesn’t agree. right now i am so tired my lips are going numb. breathing is difficult. i need to conserve what energy i have. none of this is meant to be complaining. this is just the way it is for now. i am blessed with a husband who loves me and doesn’t resent me or my illness. he just makes the best of the situation. the rest of my family just works around these changes.
i have the choice of seeing this as a bad thing or a good thing. not like being ill is good, just that i choose to see it as an adventure. over the years i have made the decision to accept life as one big adventure. they are not always pleasant adventures but on the other side i hope to become a better person. to have the courage to face whatever life asks of me.
well my mind is just about gone and i am struggling to find the words for what i want to say. seems like a good point to stop and just say how much i love you all and appreciate you.
Hugs
July 9, 2013 at 12:07 pm (Uncategorized)
i could use a hug today. so grateful that he is a big hugger. odd that i never was big on hugging (except for children) but now i find them to be so comforting. even the hugs from my friends here are heart warming and i am grateful for each one.
A hug a day keeps the negatives away!
Which one is your favourite hug?
I love the tight hug, and you receive it back even tighter….
the road to rome
July 3, 2013 at 1:46 am (Uncategorized) (congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)
the road to rome georgia is beautiful and easy. rolling hills and the occasional horse or cow. 2 lanes in each direction and not too much traffic. i drove this road each morning and night while working at the state hospital. you can imagine on the forensic units we had some interesting patients. every evening i would get in my car, turn on the music and leave the day behind. the drive was just long enough for me to become my home person. work person was a supervisor, a person who dealt with crisis situations multiple times each day. the transition is important for a good relationship at home. the last thing i wanted was to come home and not be his soft spot to land.
today we drove this road to go to the social security office. on the way we talked about our trip. this is a good time to just speak your mind and the forward motion of the car is now a reminder of the way we want to move. we agreed on the changes that are taking place. it is important that we are on the same page here. for me each step along this path needs to be taken together.. if not i am not sure i would be able to help him make the leap. i continue to be amazed and am so grateful for his support and love.
even as i write this i am aware of how i am struggling to find the words to say what i want. this is the best i can do for now and as long as i am doing all i can do then i have to let the rest of it go.
we came home and laid down for a nap. i slept until nearly 7 p.m. and it was with great effort i managed to get up. we had dinner together and watched on of our favorite shows. making the most of the time i am awake and able to just be with him is a gift. life is good isn’t it? each moment is treasure and we are not going to waste any of them. my dying is not a tragedy, the tragedy is all the people who are not living each moment and making the most of this great gift.
over coming frustration
July 2, 2013 at 12:48 am (Uncategorized) (congestive heart failure, frustration and illness, heart failure and exhaustion, living with dying)
frustration is a natural part of life. it hasn’t been a big part of my life but to deny its existance would be a lie. my frustration comes from the change in my activity level. for some time now we have noticed this difference and yet we have both sort of closed our eyes and just kept pushing.
since before the party i have noticed my energy level has become significantly lower. initially i thought it was just one of those times when i needed a little extra rest. weeks later and i am still struggling do even the smallest task.
last wednesday we headed to charleston to spend time with our family and to see our family who lives in the bahamas. we knew that this has become a challenge for me. usually we take 2 days to make this 6 hour trip but this time we drove straight through. it was expected that thursday i would need to rest. the hotel was very nice, the problem is i feel we don’t spend enough time with the kids. friday was a bit better and i was able to go and spend some time with the family. saturday we wanted to take the kids to the movie and just spend time with them. unfortunately i was unable to attend the movie. i was sleeping. around 5 chris came to pick me up and we had dinner with the whole family. again i was tired so we called it a night and invited everyone to breakfast at the hotel the next morning. during breakfast i was so tired i could hardly think. this is one of the most frustrating things about being tired, i can’t seem to think well. it is like a fog has rolled in and my thoughts are a haze.
all the way home i slept, it can’t be easy for chris and i wish there were another way to do this. last night i feel asleep in the recliner and finally went to bed around 2 a.m. it was disturbing to wake up at 6 p.m. and realize i had slept so long. getting up was not easy, it took some self talk. tomorrow we need to go take care of some business and i don’t know how i am going to do it. this isn’t just tired the way it was years ago. most of us know how it is to be tired and still need to get things done. this is knowing that and just not being able to do it.
when asked what time do i want to get up i feel like laughing. this is how i handle the frustration. what else can i do? i know i need to get up and take care of things. i also know that i may not be able to. this is life’s little joke on us all, we think we are in control and make our decisions based on some knowledge. the truth is life is random and sometimes things go the way we would like and other times we are reminded just how quickly things can go in the opposite direction.
no matter how intelligent, rich or beautiful you are there are frustrations enough for us all. of course the real challenge is what you do with these frustrations. we just laugh when we can and talk about how we can accommodate these new changes. this one is not so easy but i am sure we will learn to work with it. i still enjoy life when my eyes are open (LOL) so frustration will have to get over it. i am over frustration:)
the dr. says 