I’ve been home for just about four weeks now and I haven’t written anything since my last night in the hospital. I wish I could tell you it’s because I’ve been busy living life and too distracted with all the comforts of home, but that’s not the case.
My first week home was a whirlwind. The day after I came home I developed incredible discomfort and pressure next to my feeding tube site accompanied by a bulge in my abdomen. After two nights of barely sleeping because of the discomfort and pain (and having a doctor tell me ‘worry can do that to us’) the balloon on my tube ended up popping (again…just two months after the last one). This of course meant that I had to go to interventional radiology to get it replaced. Five and a half weeks in the hospital…and three days after I’m home the tube breaks. After explaining all my symptoms to the radiologist, the going theory is that the balloon was causing a partial obstruction (‘worry can do that to us’…pft!). The new balloon is inflated to a smaller volume to hopefully prevent this from happening again.
In addition to the tube change, I also had to get my weekly TPN bloodwork, went to two doctors’ appointments, and had an appointment at the home health nursing clinic to have round one of my sutures removed. And then there was the whole getting used to doing TPN on my own at home thing. Like I said, it was a whirlwind.
And then I crashed. Now, I was expecting to crash when I came home. Pre-hospital I was so sick but trying so hard to avoid the hospital that I was basically just running on adrenaline. I’m not sure things really changed during my time in the hospital. Despite the fact that they are full of sick patients who need rest, hospitals are not super restful places. Between my crazy roommates, and my crazy roommates’ family members, moving locations four times, having doctors change the plan every other day, PICC placements, the tunneled central line placement and all the TPN training, it was busy and I came home exhausted!
So I was expecting a crash. I expected to barely move for a week or two while my body recovered and then I expected to slowly feel myself getting more energy and being able to do a little more, feel a little better. But that hasn’t happened. The opposite has happened. I’ve crashed harder and longer than I was anticipating. And I don’t feel myself getting stronger, I feel myself getting weaker. I’ve developed a whole host of random mystery symptoms that are keeping me down. It’s frustrating because everything that I’ve gone through recently has been for the purpose of improving my quality of life which hasn’t happened yet. And it’s a little scary because I’m supposed to be getting better and I’m not.
Maybe I picked up some sort of virus and that’s why I’ve been feeling so awful. Or maybe my body is just doing major damage control from my days of too few calories and it’s just going to take a while. Or maybe something else is going on. I guess only time will tell.
No matter how awful my day has been or how awful I might be feeling at the end of the day, every night I always say “tomorrow will be better.” On first glance, every day lately I am wrong and my ‘tomorrow’ is not better. On second glance, though, something about the ‘tomorrow’ is always a little bit better than the yesterday. I had a better sleep, I was able to wash my hair, I got a funny email from my Grandma, I got a new scented candle, old neighbours surprised me with flowers. Tomorrow as a whole is not always better, but there are good things happening every day to keep me going.
And then I was thinking about how every day millions of people in the world are having a bad day, and how those millions of people are all wishing for a better tomorrow. Maybe my tomorrow isn’t better, but I bet it is for some of those millions who were also having a bad day, maybe people who need it even more than I do. And the next tomorrow is better for a few other people. And one day it will be my turn.
I am a Lady in Waiting, after all. And good things come to those who wait – I have to believe this is true.
Tomorrow will be better.
One day, I will be right!
8 thoughts on “Tomorrow will be better”
It can be very scary when new symptoms arise or your body doesn’t react in the way you are expecting. It is a bit of a jigsaw puzzle sometimes trying to work out what is going on but that can drain energy too. Sometimes it is better to just go with the flow and see but if worry or symptoms continue to concern you, it pays to contact your healthcare team and have a chat. It keeps them in the loop with what is happening for you, and it can allay your fears – either by being reassured that all is okay or reassured that they will be investigating any unforeseen problems. The relief of having some support like that can save your energy which can then be channelled into healing.
I always remind myself that it often takes the same amount of time to heal as it does to get sick. If you were in hospital for 5 weeks running on adrenaline, maybe you need to allow 5 weeks to see some improvement. Often it feels like nothing is going to change, and just when you feel like you can’t handle it any more, the next day brings improvement.
As you say Tomorrow will be a better day! I feel for you and hope that I can offer some support after being introduced to your blog by Kathryn Vercillo.
Jodie I just want to say thank you so much for reading through some of my posts and for taking the time to share your thoughts and experiences! It’s always nice to connect with another spoonie! Sending you spoons 🙂
Hi Catherine! I have tried several times to click on to read your blog, and computer keeps saying – Internet cannot display the webpage. It is also jumping all over, as u can see. Any other way I can read it (computer is dying) Love\, Val xxoo
I will email you the text!
Thank you for sharing and giving us a reality of your world. Tomorrow is always better as we never know for sure what may happen. That mystery can be exciting!
The ‘ANNIE’ song comes to mind…. “tomorrow, tomorrow, I love you tomorrow, you’re always a day away…..the sun’ll come out tomorrow, come what may….” Both you and Annie are optimists and it is the only way. When you are thinking about the millions of people in the world who are hoping for a better day tomorrow …. I know they are thinking of you!
Sending healing energy your way from my heart:)
Catherine, it has been a very long road for you. Keep up the fight and the hope of a better tomorrow. We are all praying for many better tomorrows for you, and we send you our love.
you are so brave and so open about your vulnerability. You force admiration. I feel very humbled by so much courage… but it hurts me to read about what you are going through. I will keep praying for you and I am sending you all my positive energy and thoughts.