Here is the text of a post I made shortly after I started dialysis. It was written in September, 2008 about a month after I started. It’s a stark reminder of how overwhelming it is to begin dialysis… lest we should forget.
I know you all have dealt with this at some point so I’m looking for some input here…
Yesterday it hit me like a ton of bricks. I am spending three days of week, more time than a hobby, sitting on my ass for 4 hours while a machine does the work of a failed major organ. I’m not feeling “better”. I’m just surviving. It seems so very senseless. If it wasn’t for my kid needing me, I wouldn’t do this and I would gladly accept my fate without the mechanical intervention.
Hell, I can’t even form a good question about this because it’s all so overwhelming. I’m not even sure what the questions are or might be! I feel like I’m swimming upsteam, not making any progress and getting more tired the more I swim!
I keep looking for the “silver lining” in my dark cloud but it seems to elude my best efforts.
So, perhaps y’all have some insight into this that I’m not seeing. What’s the “secret” to your success? How do you deal with this? What’s your silver lining? Where do you go in your thoughts to find the inspiration to keep swimming?
If I could cry I would.
Here are some of the helpful responses I got…
Remember, Devon, you’re still a newbie to dialysis. It takes a little while to adjust. My first month not very pleasant either. Now it’s almost like a social event three times a week. I know everyone and I take plenty of things to keep me busy. I feel good when I go in and just as good when I leave. You have to accept it as a part of your life and make the best of it. We’re all here for you and we will help you tweak the process. It’s really not that hard.
I talk to ALL the patients at my clinic. We are all nice people from very different walks of life but what we have in common is so much more than the differences in skin colour, religion, country of origin and first language. One of my good buddies is from Sri Lanka and does upholstery piece work for a living. What a courageous and lovely man and we have much fun teasing each other. We all greet one another when we come in and when we leave and we worry about each other too.
Everybody that ends up on Dialysis feels this way at one point or another. It comes and goes. I won’t lie, it took me two years to really accept my condition. I kept thinking I was going to get better. Once I realized that this was the life I was destined to live…that these were the parameters I must follow, giving up 3 nights a week until transplant, fluid and food restrictions, etc…Once I finally admitted to myself this is the way things are, and this is the way they are going to stay for the foreseeable future…I actually felt better.
It still comes and goes…but far less often than it used to.
I know this sounds kind of terrible…but all I have to do is look around the room on MWF to gain some perspective. No diabetes, still working full time, no real health problems other than the ESRD. There are people that are at the very end of there lives there, diabetes patients missing toes, feet, entire limbs. People my age (30) too sick to work. Either from the ESRD or other health problems. People so overweight that they can’t get up out of the recliner on their own.
I consider myself relatively lucky.
And, this point about “permission to grieve”…
It’s hard, really emotionally hard, when we get into these very understandable troughs. And if you’re generally an optimistic person, as you say you are and as I am too, I think it’s even harder but the truth is we all struggle ongoingly and some periods are OK, some are good and some just simply suck.
Devon I think that you may need to really give yourself permission to grieve this huge loss in your life, to moan and rant and complain about all the big and tiny things that are now changed. Once you are better dialyzed and your body (and mind) get more used to the whole thing you may start to feel optimistic again, at least some of the time. I found dialysis very tough at the beginning but did adapt once I knew better what to expect and also when it helped me feel better.
Finally as I worked through it, I came to this point about a week later…
I am “better” today. Last night’s session was pretty uneventful and the doc came by so I had a chance to talk to him. The result is that I get to spend an additional fifteen minute in dialysis! I really have to laugh. But, the good news is that my fistula is getting stronger and they can increase the flow rate a bit which, gradually, will increase the effectiveness of the dialysis and, hopefully, I will feel some benefit. That might contribute to a better mood on my part.
Permission to grieve and feel sorry for myself. That is really important. That’s a revelation I came to last night and a comment here from a friend supports that. I’ve not been very good at acceptance. I usually get angry and fight back like a banshee. It embarrasses my son but I usually get results. I don’t accept things as they are if they don’t suit me. In this case, acceptance seems to be the only option available.
But, on the other hand, I don’t want to join the “living dead” that I see in the clinic chairs around me. No offense intended, of course, but if that is acceptance, I don’t like it. There’s no conversation, no animation, no life. It’s like they go into suspended animation, comatose, for hours a day while their life is sucked into a machine, devoured, and the leftovers spit back into their veins. It’s as if their life is being taken away, not given back. I don’t want to spend a large chunk of my life staring blindly at a TV and not acknowledging the people around me. Last night a thin, elderly woman rolled past me to the solitude of her chair and said, “you have a beautiful smile”. I was on the edge of tears as I burbled out, “thanks”. We never spoke another word to each other. That’s unacceptable!
I looked around last night and I felt a bit fortunate. I am able to drive myself there and get around. I am able to work my 40 hours a week. I have no wheelchair, no missing limbs, no thin, gaunt expression. I’m very fortunate. It’s all relative I guess. Sometimes I have to desperately seek out something to grasp onto into hope and optimism because it’s not coming as easily as it has in the past.
One other time in my life, I had to deal with significant tragedy. I suffered for 35 years before I discovered that this event was intended to prepare me for a very blessed event that took all the pain away. Without that tragedy, I would not have been able to deal with the other. I hope there’s a good side to this experience with dialysis, that it will be the basis for another blessing in my life. I sure as heck can’t wait 35 years this time though! So, please, Fates, hurry things along this time.
Thanks again y’all for your patience, compassion, and understanding. I’m sorry for what’s brought us together but pleased we have each other. Yes, I will get through this but I’m sure I can’t do this alone. For the first time in my life, I can’t do it myself. I need others and I need you. That’s hard for me to admit. Very hard. Maybe that’s the lesson I have to learn: I can’t do everything for myself and I need others, that life is not what we live but a network of people helping people, needing other people…. Jeez I sound like Barbara Streisand!
And that point about talking to others really helped. I resolved that I was not going to fall into the “Land of the Living Dead” without a fight. The clinic I was in at the time (see Center From Hell) is not a typical clinic situation. I made it a point to make eye contact and introduce myself. It wasn’t too long before people started coming out of their shells and greeted each other as we should. I called it “the First Name Club” and invited people to join.
But the biggest “take away” from this experience is “Dialysis is what you make it”. You’re there for many hours a week, so make it as good an experience as you can.
© 2012 DevonTexas