Mixed Feelings At Three Year Anniversary

Well, today is the three year anniversary of my aortic valve replacement surgery. My how time flies. It has been a roller coaster ride of ups and downs, highs and lows. I guess that could probably describe life for many of us regardless of health.

I am so grateful to still be here three years later, pretty awesome what the health profession can do for us and what our bodies can carry on through. Even though I often feel fragile I know we heart patients are a tough breed. :)

The mixed emotions come from a sense of loss I feel when I dwell on the things I CAN"T do. I need to try and stay focused on the things I CAN do........but thats tough. Sometimes it feels like life is passing me by while I merely observe it's passing. I am currently searching for activities I can participate in that will make me feel like a contributing member of society, give me some meaning or purpose.......doesn't have to be earth shattering - just keep me in the game.

I spend much of my day sleeping. Then there are periods of rest, some occasional TV watching - oh who am I kidding - way too much TV watching. Other than my trip to the store when I absolutely have to get groceries and an occasional family get together, I do nothing. Hours and hours, days and days of nothing.

I am not allowed to vacuum, rake, or mow. I get exhausted in attempts to keep up with housework and simply dread the grocery store because I know I will be wiped out for the remainder of the day. I know staying active is the key, but it is so darn hard to do activities knowing how awful I will feel during and afterward. I have even dropped out of cardiac rehab phase III.

I used to be quite active, I walked 2 and 1/2 miles/day six days/week, worked 60 hours/week, went camping, attended concerts, went to the movies weekly and frequently went out with friends socially. Over time, with me often having to decline the invitation, my friends have pretty much stopped inviting me.

It has been so hot out and we have had 26 air quality alert days (I'm not supposed to venture outside on those days) so I feel like I have missed out a lil bit on summer. On a positive note though I have managed (with my boyfriend's help) to keep my garden going this year. He did all the rototilling, weeding and most of the harvesting while I planted it and contributed to some of the watering. It didn't rain here much at all so there was alot of watering. LOL

Recently a young marine from our town passed away in Iraq. A "church" planned to protest at his funeral and the citetzens here organized a group to be a human wall to shield the family. I was invited to participate and REALLY wanted to but I didn't dare. I knew I couldn't stand that long and worried I would need to make frequent bathroom visits. Thousands of people also showed up to show support along the funeral route from the church to the cemetery and I thought well surely I could at least do that - bring a chair etc......didn't dare. Many streets were blocked and I was concerned I wouldn't be able to walk that far and then there was that pesky bathroom situation again. I literally cried over it. Then I felt guilty for feeling sorry for myself and making this poor young man's death all about me. Good grief.

I have adopted my aunt 's motto: I wake up and have nothing to do........and by the end of the day I only have half of it done! (she had CABG, diabetes etc....was not expected to live to 40 but made it to 52)

Anyway, I am wondering what you wonderful ladies do. I know many of you are still working and some of you have small children. How do you manage? What do you do to stay "connected" to life?

Best wishes to all,

Jeanne

By yarnkitty
Reply 3335842
August 31, 2012 at 8:02 am
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Jeanne, I fear making much commitment at all to people about my time because I just can't depend on my energy level. I even talked with a friend recently about making a few pairs of simple pants for someone and when she started getting down to specifics I started feeling panicked, like I was over committing myself.

I spend a lot of time watching tv too. If I didn't have tv it would probably be the radio. I talk to people here and talk to one friend on the phone regularly. I talk to my sister most days and we get together once or twice a week. I read. My biggest occupation is making things. I sew, knit, and crochet so I usually have at least a couple projects going. There are some days I just feel too tired to get to them, but a lot of days I spend time doing that. It's good because I can put things down when I get tired and go back to it after a rest.

I used to walk a lot too and it frustrates me when I think about how I'd like to walk somewhere with my dog but then I worry about getting too tired or having chest pain and how would I get back, etc. We mostly just take little walks in the park next door.

One thing I bet you could do is send that family a nice card telling them they have been in your thoughts even though you were physically unable to participate in supporting them at the funeral. They would appreciate that I'm sure. That "church" has been here to do that too. They are led by a crazy old man and it is amazing how many hateful people he finds to do his bidding. Fortunately there are a lot more kind and compassionate people than people of his ilk.

By Threesacharm
Reply 3336472
August 31, 2012 at 11:57 am
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I read.....a lot. I don't watch a lot of tv. I also try to keep my languages up, it is good for our brain. So I do a Spanish lesson every day and if I can force myself, a French lesson. I have zero craft ability, I have been known to staple a hem:). I usually have more than one book on the go, I have a kindle and an iPad and those are my two biggest time wasters. I am a news junkie, I generally read five or six news sites a day. I do walk every, well almost, well occasionally, when I can, I am not able to every day. I cook things I actually cannot have. Time flies. I nap every afternoon. I talk to my kids every day and my sister every evening. I know what "church" you are talking about. Those people should be ashamed. How dare they use the name church.

By purple66
Reply 3337003 · In reply to 3335842 by yarnkitty
August 31, 2012 at 3:39 pm
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yarnkitty,

I knew you ladies here would understand and know what I was going through.......you described it well - a fear of committing to anything out of fear. I didn't go camping a few weeks ago with friends because I was worried about being too far away from home (2 and 1/2 hours) and having some kind of medical emergency ruining everyone's good time. I was only gonna go for one day because I can't sleep flat and there was no electricity there so I wouldn't want to skip more than one day of my C-Pap.

Thats a great idea to send a card to the family of the fallen soldier. I still think of him often as he was nearly the same age as my nephew who is currently home from Iraq, but going back.

I think maybe I am developing depression (this would be a first for me) I have very little interest in things - even my crafty stuff.

Thanks and best wishes,

Jeanne

By purple66
Reply 3337013 · In reply to 3336472 by Threesacharm
August 31, 2012 at 3:44 pm
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Threesacharm,

I used to read alot too.......now that I have all kinds of time on my hands - I have no interest in reading. Go figure. I have tons of books just waiting for me to read them (I was in a book club). Maybe I will give it another go. I do play some online games I think may keep my mind sharp LOL but have always wanted to learn a new language - have considered Rosetta Stone. Great idea.

Thanks and best wishes,

Jeanne

By Threesacharm
Reply 3337094
August 31, 2012 at 4:20 pm
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I went through a period of having a pile of books but not the desire to read them, so I just kind of did a little here and there. Wasn't long until I got caught up in a story and there I was, gone. I prefer pimsleur to Rosetta stone, but there is also a podcast you can get free from radio lingua. It is kind of cool, they have a bunch of languages and they are centered in Edinborough Scotland. The podcasts are about thirty minutes long. I also download free apps with vocabulary etc. The thing yarnkitty said about not getting involved in stuff, that is me too, but I am looking on it as "retirement" not deprivation. I had a very busy community volunteer/involvement type life and really it is kind of a relief to not have those commitments any more. I did my fair share and more, now I am taking care of me. I am just more selective about my circle, but that is okay.

By doctorphobe
Reply 3338098
September 1, 2012 at 12:17 am
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seems to me that if youguys dint have this forum you would really b isolated. again
it's so gratifying to see the communication and understanding brought about by this site.

By Threesacharm
Reply 3338332
September 1, 2012 at 6:17 am
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You'd be wrong there doctor phobe, the site for me is a community of heart sisters who understand my journey. I wouldn't be isolated without it. I choose to spend time here because it allows me to talk aout my heart journey and it means I don't expect my family to provide the ears there. I gain a lot of valuable information and it gives me lots of perspective. I have lots of friends and family around, this other life that exists outside of here. I don't get involved in the community I live in, I am new here and i made that choice because of my new heart thing, it is coincidental that I just happened to move at the wrong time. Sorry, your comment just sounded a little bit like a judgement that we have nothing other than this, not the case.

By yarnkitty
Reply 3338559
September 1, 2012 at 8:41 am
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It has been a real life saver for me finding this community of people who understand what I am going through. I can get support from my sisters here that no one else is able to give.

By frykwoman
Reply 3338833
September 1, 2012 at 10:25 am
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Dear Jeanne,

Your letter reminds me of how I feel much of the time, and challenges me to look at my own life and how I manage my relative isolation.

I have two chronic illnesses, heart disease (chronic microvascular angina) and severe back pain. When I'm doing a bit better in one realm, the other kicks up. Sometimes they're both active at once. Those are the times when I'm least able to get out, be social, etc. That's when my depression kicks in, and my PTSD activates. (Oh, yeah-- I have three chronic illnesses- PTSD, too...)

In doing my inventory of coping skills and mechanisms, here's what I came up with: I talk with a very close friend nearly every day, for long conversations about everything you could imagine. My relationship with her has really saved my life. Though we don't live in the same state, I feel like we're closer than I am with my own sister, whom I talk with on the phone fairly often as well.
I've also made friends with a local HeartWoman from here on Inspire. She's come to the hospital to visit and bring real food, and we've met up at my house. We'll be getting together again, once we're both OK at the same time.
I quilt, and I volunteer for a thrift shop right next door to my house. I do all the quilting fabric-- we get lots of donations of fabric scraps, and I trim them, fold them, and make pretty packages to sell. I also measure, price and pack all the donated trim and lace, as well as all the pens. Funny combo, huh? I LOVE doing this job. When I'm not too mobile, I can send my husband over to pick up the stuff and do it all on my bed. When I'm doing well, I spend a couple of hours over at the shop sorting and visiting.

My life has changed SO much since the arrival of my heart disease. Like many here, my old friendships seem to have dried up, although there are still a couple of hardy souls who look me up occasionally. Because I'm not as mobile or independent, I spend a lot of time alone. Rather than feeling tragically "removed" from society, I am enjoying my time with me. There is a lot to simply think about. I also meditate. I write both prose and poetry. I am a beader too. Lots of little things keep me entertained and active in the creative realm.

When I watch movies and TV, I like to watch comedy, preferably really quirky dark humor stuff. I really value my sense of humor.

I could go on.

Each night as I go to bed, my husband and I list the good stuff that happened each day. That helps me tremendously. It gets me away from the chronic illness habit of voicing my litany of woes.

Thank you so much, Jeanne. You have enriched my life and the lives of so many others. Your compassion is huge and wonderful. Just thinking about helping to support the grieving family and community of the fallen soldier is a wonderful thing.
Just think of a world where more people are compassionate and willing to send out their best wishes to one another. You are already a part of that world. You are making it happen.

LOVE,
Melissa

By purple66
Reply 3342419 · In reply to 3338098 by doctorphobe
September 2, 2012 at 7:54 pm
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doctorphobe,

I have found this community SO helpful......... as a sounding board as well as educational. The ladies (and a few men) have been very helpful to me and I appreciate it very much. I try not to talk too much about all my medical woes with the people in my life. I fear they get sick of it AND I feel they don't truly get it seeing as they have no direct experience with it (thank heavens for them)

Best Wishes,

Jeanne

By purple66
Reply 3342704 · In reply to 3338833 by frykwoman
September 2, 2012 at 10:16 pm
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Melissa,

You actually made me tear up.......with your kind words - it meant alot to me, thank you. I especially love what you and your husband do - sharing the good stuff that happened during the day. That is so neat.

I used to be quite crafty, I did cross stitch, hand sewing baby quilts etc......loved to read, volunteered at a battered women's shelter - felt like I contributed.......now I just have no desires to do anything. I feel like an empty shell........but I am gonna try to work on this.

Whenever I got "artsy" and wrote poetry it was when drama was occuring in my life. I have an entire notebook full of my poems/rantings. They are either VERY dark when I was apparently at a low point or extremely pollyanna when I must have been flying high emotionally. Fortunately my life leveled out limiting the drama but unfortunately my creativity only seemed to be sparked by the drama.

Funny enough, I love dark comedy movies as well.......LOL I always wondered what that seaid about me. I have always been a positive upbeat type person and do still value my sense of humor as well. Luckily for me I am easily amused. :)

Thank you so much for your response - it touched me.

Jeanne

By Murrk
Reply 3374380
September 14, 2012 at 9:12 am
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I hope you all don't mind me joining in. Although I have nowhere the heart issues...yet...that you all have, I find your conversations to be so upbeat and encouraging.

The only thing I can add is my father's outlook on life. He died at age 94 of just about everything, but ultimately it was congestive heart failure. He had many bad days, I am sure, but he got that old walker out and headed out of the house for a "walk" which was always very slow and labored - often just a handful of steps-, but he had such a zest for life in general that nothing could keep him from living. He worked at his CPA practice until the very end, although it wasn't for many hours a day. And he rarely ever complained and kept his sense of humor. I remind myself of him and many more of you all on this site when I feel the frustration of feeling chronically "lousy" and wanting to feel sorry for myself and mourning for my "old" life. Thank you all for your inspiration and support, even if you didn't know you were giving it.

Karen

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