General
Do you remember fun?
What do you do for fun?
My idea of fun was different before my transplant. I don't know if that's because it was 16 years ago (and I was 20), or if I didn't have as much responsibility.
In the day to day minutia of learning to take meds, check blood pressure, temperature, blood sugar, walk again, and eat, I lost my fun for a while. It wasn't intentional, but it makes complete sense. I sacrificed my fun for a while so I could learn a new normal, a baseline, and could build from there.
My fun has changed in the past 16 years. Single fun was different than married fun. I've found out what it's like to have a partner in sickness and health, and that sickness word in marriage vows gets overlooked unless you live it every day.
Fun looked different with one child, and then two children. They remind me constantly of life through the eyes of a child, and give me hope for the future.
Fun looks different now than before COVID-19. In my isolation, I've found an online community, rekindled my love for writing, and have a new love in podcasting. I would never have discovered these things when I was working full time, because I barely had the energy to get through a workday.
So tell me about fun for you? How has it changed? How is it the same?
- Do you remember fun?6 votes
- yes, i remember, and still have fun!83.33%
- no, i've forgotten0.00%
- yes, i remember, but i'm out of practice16.67%
1 - 12 of 12 Replies
Hi, yes I remember fun and you’re right, it does change with time and life stages. It is easy to get depressed at any stage though and it is great that we have more online communities and support groups to help us on down days. My fun has changed now to a senior citizen stage, which I never believed I would see but am very thankful to experience!
I haven’t had my transplant yet, I just finished my testing last week. I’m 60 and have had polycystic kidneys my whole life.A lot of my fun included drinking.I use to fish,camping,surfing and other activities that my disease has put a stop to. I found out January 2020 that I had ckd.I knew something was wrong, I worked 60 hours a week for years and all of a sudden I was exhausted all the.I had alrighty quit drinking and saw my kidney doctor for the first time.He wasn’t helpful at all.My gfr was 18 and he told me to stop eating bananas and drinking OJ and my kidneys would last 1 to 3 year’s.I switched doctors and with the help from google found out what I can and can’t eat.I got my gfr up to24 at one point but didn’t last.I was going through some stressful problems with my 38 year old daughter and next blood test I was back to 18 again. When I did my testing last week my gfr was16.9.They did a lot of blood work and wanted to inject iodine in me for a brain scan,they put in the IV and luckily the nurse with the iodine noticed how low my gfr was and refused to administer the iodine.She said the iodine would shut down my kidneys completely.So now my test are lost somewhere between largo transplant center and the blue cross office.I talked to my insurance and they never the test but promised they would approve it and call me right away.So for fun now I’m on my phone all day trying to get help.I have 2 donors,one is my son.Largo won’t start testing their kidneys until the insurance gets approved.Each day gets a little worse.I have mornings sickness every morning and every joint in my body hurts.My kidney doctor just says,yep that’s all part of the disease but goes prescribe anything to make it tolerable.I like to walk my dogs and play ball with them but even that wears me out in no time at all.Hopefully next time I write my donors will have been tested and something good happens.I do go to church 4 to 5 days a week and if it wasn’t for my children and grandchildren I’d ask the good Lord to take me home.
Transplant Patient
I was having this exact discussion with my therapist this morning. Because I was sick my entire life, I don't really have memories of fun that aren't also about being sick. Post transplant is the healthiest I've been, and I'm introducing myself to the idea of actually having fun. It's so strange to be in my twenties and exploring the world the same way a toddler would.
I'm really excited to explore the idea of fun as the pandemic continues to move on (hopefully) and I'm able to begin doing things like travel again. The idea of rollercoasters, white water rafting, sky diving, ziplining... sound like so much fun to me. I feel like I might be an adrenaline junkie and just never realized it since I never had enough energy to even think about those things.
Currently fun for me looks like walking around a store with Starbucks, or taking my dog for a long walk and listening to my favourite podcast. Planning events, decorating, styling, curating aesthetics, all of those are so much fun for me. My therapist also suggested doing more childlike activities to connect with the child I never got to be, so I recently started customizing dolls, and I really enjoy that as well. My husband laughs because he'll come home and his wife will just be laying on the floor playing with dolls.
Transplant Patient
@hazzler what's fun look like in the senior citizen stage?
@brookegurrad fun at my “senior” stage includes dinner with friends, short walks at nature preserves, “early movies”, etc. I don’t have any grandkids yet but am looking forward to enjoying them if we are so blessed. I don’t go backpacking, or ride my motorcycle, or cut firewood anymore. But I never believed that I would live this long so just being retired is a joy. One of my favorite senior activities is watching the sunset with my wife. 🙂
@Kidneyhelp I understand your struggle as I am 60 and have lived with kidney problems since birth as well. I am sorry you’re putting up with the red tape as well, that is so frustrating on top of everything else. Please keep us posted on your progress, this community has your back!
@AliEm14 Keep living your life to the fullest and exploring! I have lived every day since my transplant by the same philosophy, even when I was working. Even though I have slowed down now, I still consider every day to be another day of vacation from dialysis. 🙂
Transplant Patient
Oh @Kidneyhelp, what a challenge this is!
What no one told me about as a transplant patient is what a toll it would take on my mental health. The waiting, the getting sicker, the pain. Sometimes we feel like we run out of fight.
I'm so glad you shared this today, so we can encourage and support you through this.
Please reach out as you need. You aren't a burden. You still have life in you! You are loved and we are holding space for you. ❤️
Transplant Patient
Ok @hazzler, these are the same fun activities I do 😂. My husband and I have date night on Friday and we go eat at about 5pm, so we are always dining with some wise people.
Transplant Patient
@AliEm14 I hadn't thought about the fact that you are now at your healthiest. That was not the case for me. So yeah, girl, go and do all the things! As soon as borders open up, come see me. We'll go find some ways to use that adrenaline. ❤️
Covid definitely hindered my idea of fun for a while because much of what I did involved being outside or with others. I slowly began to realize how little fun I had by myself, but in that realization I found a love of reading for fun again, for playing story driven video games, for watching tv and movies and actually dissecting them as I went. As things have opened up again I am able to have the fun that I used to like playing sports and going to the gym but they have now been intermingled with my new ideas of fun.
Transplant Patient
I love that reading came back into your life. Same for me!