Funny How Things Change

[peleroja]

Many moons ago, back before time, age, ESRD and multiple surgeries wreaked havoc on my body, I used to watch TV from 8 to 11, then the news and Leno's opening monologue.  Nowadays, if I get through the 8 pm program I'm doing good.  If I make it through a 9 pm program it's pretty much a miracle.  I don't even contemplate a 10 pm program!  As a result of going to bed now at 9, and the fact that my body is usually only good for 5 hours of sleep, I've developed a habit of waking up at 2 am.  At that time all the local dogs have finally quieted down, people have shut down their parties, and it's just me, the purring cycler, and my tinnitus (more noticeable when it's quiet).  I then go as far as my tether will allow and do things, like washing dishes, tidying the kitchen, tidying my room, etc.  Around 4 I go back to bed or lie down on one of my couches and go back to sleep until the light wakes me.

It reminds me of the two years I worked graveyard shift, 10:30 at night until 7 am.  I went home and directly to bed, slept until 12 or so, got up and did "normal" things, but I had to go back to bed at 6 pm in order to give my body the illusion of "real" sleeping and waking, i.e., shower, grab a bite to eat, and then off to work.

Here's something else that changed.  Forty years ago I had absolutely no trouble walking the 4 blocks to work at 10 pm!!!!!  Then again, I did work for the police department and there were cops all around the place.  Needless to say, now I don't even open my door to anyone after dark.

What about you?  How have things changed in your life?

[Jean]

Before CKD, I was known as a "little ball of fire" . Now I have found that I dont much care about the things going on in my community. Going to our events was a major thing, now I dont care if I go or not, unless the food is going to be really good. I used to sleep maybe 6 hours and away we went, now I sleep for no less than 9 and am still tired. Used to belong to Jazzercise, and Curves, only a few years ago. Used to walk one mile every day, sometimes 2, now I walk inside my house. Wow, it is amazing what fatigue can do to you. Hope I get a shot in Nov. Used to be I only used my computer to do income taxes with and to write letters, etc. Now, I cant go a day without going to IHD!!!!

[looneytunes]

Before hubby was diagnosed with ESRD in 2007 and the ride started, my life revolved around around fishing bass tournaments.  Traveling around the Midwest, hubby often driving in the wee hours (while I slept) to get to the next tournament lake for a day or two of practice.  He would often go out with me on practice trips and fish with me.  On tournament days, he would get up at 4am, hook up the boat for me, help me load my gear.  Sometimes he would launch me and he was always there for the weigh-in.  He was my biggest supporter. 

Since ESRD, I have had the boat in the water twice, once this year and once last year.   I miss it but his health and the quality of his life mean more to me than fishing.   

It is funny how things have changed.  Something I thought I would do more of later in life, I am actually doing a lot less of.  And things I never thought I would have to do (because he handled it), I am now doing most or all of. 

Great thread...reflection is a good thing! 

[Mimi]

Life before ESRD was good and interesting.  I drove and went where I wanted to, be it shopping, taking Yoga lessons, playing the piano,
cooking all the time for my family, visiting friends and having them over for week-ends just to talk, eat, and go to a movie.  Retirement
was wonderful.  Then ESRD hit and my whole life fell apart.  My eyes
got bad and my hearing followed it, I didn't feel like cooking any more but that was Ok I didn't feel like eating anyway.  Doing yoga and playing the piano made my back hurt.  I couldn't sleep at night so I started sleeping in the daylight.  Then the sleepiness set in and everytime I sat down I went to sleep.  I had no more energy, when I took a shower I had to lay down and rest I was so weak.  Now they say it is time for D.  Get a graft put in and get prepared.  I don't know if it is worth it or not.  All that is left is golden memories.

 

[billybags]

Mimi, I have just read your post and yes things do change as we get older, yes we do get more tired and life changes in many ways. So you are saying "should I do dialysis or not"  That is a question a lot of people ask as they get on in life. Could your quality of life be inproved if you did this. Are you getting tired because of the build up of toxins? I think you really have to talk to your neph about this and think about the pro's and con's. One thing Mimi you are wonderful being able to use a computer at your age, you should be dead proud of your self. They are not that easy to conquere.

[petey]

The time before Marvin's ESRD and dialysis was so long ago that I barely remember what our life was like back then.  It has been almost 15 years.

Back then, I was only 32, and Marvin was 39.  Before it happened (and it was a total surprise!), I guess I thought we'd live forever.  Once it all came crashing down and changed our lives, my first thought was that I'd end up being a young widow -- because, surely, no one could live through this for very long.  I was wrong!  Now, I think Marvin will live to be an old (though well-preserved) widower!  I just hope his second wife appreciates how well I've taken care of him! 

Those first few days of dialysis in 1995, I would never have imagined that Marvin and I could have done the things we've done.  It still amazes me how you can really do those things which you never thought you could do --when you have to.

I do remember that our lives were very spontaneous -- just pick up and go here or go there when the mood struck.  Go off for the week-end?  Sure!  Just set the air conditioner on 72, grab a couple of changes of clothes, lock the door, and we were off for three days!  Now, a couple of days away from home takes planning, and packing galore (home hemo machine and all those supplies), and days of preparing.  We don't "pick up and go" like we used to because it's so much easier just to stay at home.  I miss that.

I remember that we knew nothing about dialysis, transplantation, phosphorus levels, etc.  Now, we know more than we ever wanted to know.  I'm glad we're more "educated" now, but I wish we didn't HAVE to know so much about all this stuff.

I remember that life seemed simplier and easier.  I remember that this is NOT how we thought our lives would pan out.  I remember that our days seemed long (and now, they pass in the blink of an eye... "...time is fleeting," as one poet said).  I remember that we worried about things like how good we could make the yard look, how many "gadgets" we could own, how we could keep up with the neighbors.  Those things just don't seem so important any more.

Though we would both gladly "give" ESRD back to whoever decided that Marvin needed it or could handle it, the whole thing has also changed us for the better.  We don't take many things for granted anymore, and we enjoy the simple things in our everyday lives.  We are stronger.  We are braver.  We are more compassionate to others who are struggling with sickness and diseases.  We have come a long way.  But, still , every now and again, I yearn for our life before ESRD -- or at least a life without it now.

[YLGuy]

It is 4:30 AM.  4 years ago I would just be getting to the gym for my half hour workout and then 6 mile run.  I am not awake right now because I am going to the gym.  I am awake due to insomnia.  I live in a second floor condo and there are days I have to pull myself up the stairs. 

[willowtreewren]

When I FIL was diagnosed with PKD (what, maybe 20 years ago?) and my husband discovered that he, too had it, I know that I continued to live in denial that it would ever really affect us.

But my husband, in his wisdom,  started lobbying for working less and spending more time together. While I, in my denial, continued my workaholic ways, wearying of his "harping" about slowing down and having fun together while we could.

And now that we are living with ESRD, I am the one who "suddenly" realizes that it would be good to slow down. Only now we can't because we HAVE to work in order to maintain our insurance. The gold in these golden years turned out to be a thin veneer that has mostly rubbed off. Not all the way, though.

We still have each other, but like Petey says, there is no just getting up and taking off for someplace. The logistics are complicated (not impossible). The planning has to be exacting so no crucial supplies are forgotten.

And the travel that one of my jobs requires is now a major issue of scheduling instead of simply marking it on the calendar. Life is no longer easy, but it is life.

[paris]

I use to clean our two story home in a few hours.  Now it takes a few hours to clean one room.  Sweep, rest. Dust, rest  and then when I take a shower, I have to sit and rest before I dry off!   I know age contributes some, but this is ridiculous.  And standards of "clean" have had to change.  Dust is a protective surface for the furniture, right?   

[dwcrawford]

I am so sorry that such nice and helpful people are having all these issues.   I wish there were something I could do to help.  If only I lived close to you guys I could at least come mow your lawns (lol).  You wouldn't want me cleaning house or anything like that.  Oh wait!  (maybe i wouldn't even be able to mow several lawns these days.  It is Kidneys I promise.  It isn't age as Paris suggested.   I hope.

[willowtreewren]

How sweet, Dan.

You know. It isn't that it is bad. Just different. A new path...

[looneytunes]

I agree Aleta.  Dan, that is sweet of you to offer (I mow about 2 acres so come right on).  It isn't that bad a life, just different than I thought it would be.  Still wouldn't give up a minute of it!  (ok, maybe a few minutes here and there I could do without  )

[Stoday]

Up to the age of 64 I thought that life just got better & better. I had my own international business, stayed in the best hotels in capital cities, smoked Cuban cigars, ate caviar, drank top Burgundies. Then in 2005 K—POW!!! I had a heart attack.

Transition to decline. No more flying, I now work only 1 or 2 days a week, all in the UK.

Next transition will be along shortly when my fistula will start to be used...

Like others on this thread, all I have left is memories.

[lizabee]

I too go to bed at 9.  I use to go out with my friends on the weekend, dancing or whatever, but now I don't even want to.  I use to do so much...now I make plans and then when the time comes I am looking for any reason to stay home.  I was working full time, now I am only working part time.  I have always been independent, but now I have no choice but to depend on my husband.  The one positive thing that has changed is that I have a husband!  I was a single Mom for 10 years, and now I couldn't (and wouldn't) have it any other way!

[zona]

Before I got sick, I was the V.P.of the cleaning company my husband and I built from the ground up.We worked side by side long hours while raising our 2 children.It was the best time of our lives.I miss working so much. Ironacaly one of our biggest contracts was to clean for Fresnious Dialysis Clinics. I trained and taught many employees the proper way to disinfect and sanatize and I took great pride in my work.I never really thought there would come a day that I would be on the other side.Now my 16 year old son is being trained to someday take over the business.

[RichardMEL]

I used to do several round the world trips a year - saved up for with some difficulty but enjoyed very much.. meeting friends, seeing concerts, living a decent life and enjoying as much as I could(because I knew dialysis was coming). Then 2006 I started dialysis and strangely enough.. well due to unfortunate circumstances - I got a bit of an inheritence and could actually afford MORE travel and stuff like that.. but not with dialysis in the way!!!

Still, just biding my time till I can be back out there......

[peleroja]

I'm so glad this thread picked up again.  I was afraid maybe people didn't want to be reminded of how things had changed.  I think it's the fact that we all have such a positive attitude about our changes that keeps us going.  After all, we are all still basically us.  As Nathan Lane says in The Birdcage, "It's still me, just with one tiny change (the fact that he's not a woman).  Well, not tiny!"  Keep 'em coming.

[tyefly]

 I think the most thing I feared about starting dialysis was that I would not be able to travel.....  Travel to me is the most important thing in life..... Now  I like to go trucking with my hubby and visit places all over the US but I really miss not going camping and back packing.... Just getting lost in the woods for a few days or a week and sometimes several weeks.....  I am not a home body and dont like to stay home.... This will be a hard challenge for me....  Something that I will have to deal with as time goes on....Since I just start D  and its now becoming winter I will not feel the hardship of staying home....I can still go to the rivers and steelhead fish for the day.....  but come this spring...and then summer....well....  I hope I do become depressed....    Now I am thinking that my only hope to be free  is to get a kidney from one of my living donors......and that is still in the works.....  This is a trying time for me   as I am sure it is for everyone else who needs to try to  ajust to all of this.... New Chapters  in LIfe.......

[kitkatz]

I will have been on dialysis 11 years November 2 this year.  My new chapter involves getting out and traveling more.  I want to see the sights in the United States. We are going to Rancho Vistoso, near Tuscon in Arizona in November.   Then I am making plans to go to Washington DC next November if the school calendar does not change.  THen saving money and looking into that trip to Australia for a few weeks in a few years.  Little trips until then.

[Mimi]

Thanks Billybags.  Ain't it funny how time slips away.

[Sunny]

I used to mow my own 1 acre lawn, clean my own two story house, take care of my own garden, and cook for our family of four. I was very high energy. Now I clean one room a week, my son mows the lawn, I gave the garden to the deer, and I barely manage to cook two or three times per week. I no longer work, don't have the energy. I rarely hang out with friends or family because I can't keep up with them. People have no idea what it's like for me and I am too embarrassed to fess up. For example, my 18 year old daughter walked in on me while I was showering and I was sitting on the floor of the shower which surprised her. I had to tell her I've been doing my showers this way for 8 years now. She had no idea. I turn my family down when they go on special day trips to gardens, malls, fairs,etc, not because I wouldn't love to go, but because I know I could never manage the long hours on my feet. I feel like I'm 49 going on 80.
It's hard to imagine living like this for the rest of my life. I still remember what it was like to be healthy, and those memories are slowly fading. Sometimes, in my sleep I will still have dreams in which I am physically fit and not sick with kidney failure.