I was so tired last night after dialysis I just sat and watched TV. After an hour after the Tylenol kicked in and i had eaten something, my brain kicked in again. I had a bad case of after dialysis fatigue.
What is dialysis fatigue? It is the headache and overly tired feeling that comes upon a dialysis patient during the last part of or immediately after dialysis. It is almost impossible to describe the way it feels, so I will use last night as an example.
I felt a headache and tiredness creep into my body the last half hour or so while I was on dialysis.. I asked for Tylenol to help prevent some of the pain I knew was coming. I was pretty quiet while I was taken off dialysis. I just wanted to go home. In the car I played on my cell phone or sat quietly. I was so happy to see our house, I almost cried walking up to the door. Usually I am hungry enough to eat a bear after a treatment of six hours., not last night. I did not really fell like eating. I was tired from my head to my feet. I was so tired I just wanted to sit and cry. It would have only made things worse, so I stopped that negative thought. I sat in my office at my desk, turned the TV on and stared blankly at it. I tried to write something, but my brain kept saying; “NO, too tired to do this now.” I played a few Facebook games, because that usually relax me. Even that did not work.. I finally had a little food to eat. I started feeling a little better and could write a little bit again. I crawled into bed to read for a little bit with the heating pad on my sore spots. I felt every aching spot in my body telling me all about its pain after I turned out the light to try to sleep. I just had to lie there and let the body find its favorite spot and position that will allow me to sleep.
This is how dialysis fatigue affected me on one night. Not every single night is this way after dialysis, this is a description of a particularity bad night.
This is one article about dialysis fatigue so it is not just an “in my own mind” effect. It gives pointers on how to recover quicker. It also says to recognize and validate the fatigue.
A research study done on dialysis fatigue. It gives extra information on the effects of dialysis on the body related to fatigue symptoms.
What can be done to prevent or help dialysis fatigue symptoms? Common sense things.
Recognize when you have fatigue. Rest is recommended.
Review your medications with your doctor. Ask which ones can go into a nighttime routine.
Eat a well balanced diet. Pay attention to protein intake at each meal.
Exercise when you can.
Do things you enjoy. Have some fun.
Remember: Dialyze to Live, do not live to dialyze!
An article on cancer patients vs dialysis patients treatment by clinics.
I have been busy writing my fiction story. I have written 49,000 words so far into my first draft. I realize I am going to have to edit the entire thing slowly and grow a good story out of it. It is going to take time and effort to do it all. I am also working on another story, but it has taken a back seat to the one I am actively involved in every day. I have written a few poems recently. I want to send those into a contest or two.
Dialysis continues three days a week. I am doing all right for six hours. I am managing my dry weight and fluid intake pretty well now. It is probably the hardest part of dialysis, being thirsty and having to limit those fluids all the time. When I was in Las Vegas with friends, I was amazed at the amount of fluids they consumed over the day. They always had something to drink on them or in their hands. You who can drink fluids, please enjoy one on me. I have worked on not complaining to my husband when we arrive at the center. Makes for a better change of venue in my brain, to come in with a good attitude instead of being negative towards it. It is a large part of my days MWF. I won a hat from Kidney Beans a Facebook group I belong to. Amy does a raffle each month. For National Kidney Month she has done a raffle a week.
So between household chores, writing and dialysis, this is a snapshot of my life lately.
Today is World Kidney Day. Yes, a day to recognize all your kidney do for you.
Did you know that your kidneys work hard in your body. They help regulate phosphorous, potassium, calcium and sodium, as well as other nutrients your body uses. As a kidney patient on dialysis I can attest to the power of the kidney in the human body. I have to follow a rigid diet to regulate these things now that my kidneys are not working. The kidneys also push toxins, waste, and fluid out of your body. Without the kidneys functioning, dialysis becomes the only choice. Say thanks to your two working kidneys sometime today.
Here is a link to the National Kidney Foundation for news on kidney related issues: https://www.kidney.org
I know the pressures that Kidney Disease can bring you,
I also know the costs.
Many outside of our community can’t understand,
Not because they don’t want to,
But maybe it’s a price they don’t have the currency to pay.
What I mean to say is that it’s one thing, financially;
And that is a HUGE cost alone.
But, it’s another cost when you talk about Relationships.
All of the strained relationships from friends and family.
They may not understand the time, energy and finance.
It’s a whole different currency, because we are now SICK.
I don’t like that word, but is there another, better word.
Whatever relationship you can build on, that’s important.
I hope you cherish every relationship,
They are each important,
But nothing is more important than your spiritual life,
Whatever that looks like for you.
Do you feel like you’ve lost a piece of yourself,
I think on this journey it’s so long and difficult,
That it would be easy and natural to lose a part of yourself.
But hang in there, in time, we will bring ourselves back.
It’s hard enough on our bodies, doing dialysis and than Transplant.
Than you have the restrictive diets and times and means and abilities.
Even though I’m going on 13 years post kidney transplant,
Dialysis and Transplant took so much out of me.
I had No money, No Energy, No Time and now No Friends.
I think that’s why these boards are so important,
It can’t replace many friendships, but it can Foster them.
We get our strength from each other,
I know if I’m having a bad day, others will encourage me,
And when you have a bad day, I try to encourage you.
This is a process and I believe in it.
I know that we will monster on and get stronger,
Nothing in life is easy, and this burden is ours to carry on together.
So, even as we cover the Costs of this disease,
I want you to hang in there,
And if you feel like giving up, DON’T.
Hang in there a while longer,
Together, we will pull through, the hard times and the good times alike.
Know that we are Stronger Together.
And We are Not Alone.
I am trying to work on reading, writing, and community in my writing career from 9 am to 4 pm Tuesday and Thursdays. Dialysis is still MWF 1:15 to 7:15, 6 hours. We leave at 11:15 to get lunch at Carl’s Jr.
See my new author’s page at katherineesoto-author.com to see an update about my writing;
My Art Journal this week was on Freedom in my Life.
I was messing around last night with paper and pencil and had an idea for a map. So I looked up the inside of a kidney, pulled the basic forms and turned it into an RPG map. The first map is my colored map. The second map is a freebie. A black and white map you can color for yourself! The maps are my own creation, whether correct or not I had fun doing it. I call it Kidney Island.
I am going to bring a copy of both maps to my nephrologist appointment and give them to my doctor. They will be a gift for National Kidney Month.
This is a picture of a Very Bad Kidney. I probably have two guys of these lurking in my own body. My friend’s daughter drew this picture. Her name is Jenna. She was on dialysis for much of her teen age and early adult years. She has had two kidney transplants. She a hero in my books. Her mother Karol is a hero, too, She searched the internet for a kidney for Jenna for years. She even advertised on the back of her car. Due to her mom’s efforts, this last year Jenna was in a paired transplant program with a living donor. Life has slowly gotten back to normal for her this year. You can go to ihatedialysis.com into the forums to find their story. Thanks Jenna for letting me share your pic during National Kidney Month.