Open the box of medical supplies. Start to unpack it. First the saline flushes. Then the alcohol swabs. Then the big Ziploc bag full of all the odds and ends. Batteries, positive pressure caps, needles, syringes, dressings, iodine swab sticks, skin prep, gauze, gloves. Quickly glance at the expiration dates and all is good. One by one, everything to its respective spot in its respective drawer.
Finally, the box of IV tubing sets. Open the box and open their drawer. Ready to put them away. Wait, check the expiration date. 2022. Oh right, compared to all of the other supplies these are always good for the longest. 2022, no problem.
2022.
2022…oh man. That’s five years away. Five years!
Five years…five whole years…
That’s twice as long as I’ve been on home TPN so far. Where is my calculator? Don’t do it. Don’t get out the calculator. Too late.
Five whole years. That’s about 1800 nights of setting up my TPN. I hate setting up my TPN. I dread it every day. I can’t believe I have to do it 1800 times in the next 5 years. And then all the years after that. But you’re lucky to have your TPN. I know, but I still hate it.
1800 nights of TPN means 1800 TPN bags. That’s 4500 litres. That’s almost 10 000 pounds. 10 000 pounds of TPN. 10 000 pounds of smelly chemicals being pumped into my body. Ew. But isn’t it awesome that medicine has found a way to keep you alive? Yeah. I guess. Still. Ew.
I wonder if I’ll still have this central line five years from now. It’s my seventh in less than three years. So probably not. But maybe. I hope so. It’s already lasted longer than most of my previous ones. That’s good. I can’t go through lines as quickly as I did for the first few years because if I do then in five years I will be running out of places to put them. Remember what the radiologist told you. They can get creative. This one will last. It has to.
In five years I will use 5400 saline flushes and 25 000 alcohol swabs. I will use 3750 needles and syringes to add 9000 vials of vitamins and medication to my TPN. These are just numbers. Don’t give them power. In five years I will change my dressing over 250 times. I hate changing my dressing. It’s not that bad. I still hate it.
In five years I will have my blood drawn a minimum of 60 times. But it will probably end up being at least 100 times. Why does this even matter? Since when do you care about needles? Drawing blood is getting trickier. Old Faithful hasn’t let you down yet. That’s not true. He’s not as faithful a vein as he used to be.
Oh gosh, I don’t even want to think about how many thousands of dollars of medication five years is. It’s about 30 000 dollars for just one of them. That one is covered. For now. Until they decide to cut off my special authority again. Then you’ll get it renewed again. Unless they decide to stop covering it altogether.
Five years. 1800 nights of TPN. 1800 nights in general. I wonder how many hundreds of those nights I’ll be up until the wee hours of the morning because I’m too nauseated to sleep. Then 1800 mornings of waking up already tired whether I slept well or not. And 1800 nights and 1800 mornings means 1800 days. That’s a lot of days. So many of them will be too long. And for so many of them I will feel sick or exhausted or useless or frustrated or lonely. Or all of the above.
No more numbers. Put the calculator down. Okay. Fine. But I don’t need a calculator to tell me how old I’ll be in 2022.
In five years I’ll be 30. Each year I feel myself falling further and further behind my friends, behind others my age. Will I even have anything in common with them still? Even more of them will have careers and live in places of their own. Even more of them will be traveling to awesome places. Even more of them will be getting married and having kids. Some of them will have all of these things. I want all of these things, too. I’ve always wanted these things. I will probably have none of them.
In five years will things be worse than they are now? How much worse? When will they get worse? How quickly? Maybe things will be the same. I don’t want that. I don’t want 1800 days of the same. I want things to be better. Maybe they will be. They probably won’t be. No, probably not. Maybe the same, though. Maybe. But they’ll probably be worse. I don’t know what you want me to say. I don’t know know either.
Just stop. Don’t go there. I can’t help but go there sometimes.
Do not let this swallow you. I’m already swallowed.
Everybody has something. This is your something. My something is too much sometimes.
I know. But you are bigger than your something. I feel small.
I know. It’s okay. Okay.
You’re going to be okay. Everything is going to be okay. Because I will make it okay, even when it’s not okay. Exactly. Things will work out however they work out. And however they work out will be okay.
You are bigger than your something. I am bigger than my something.
You are bolder and braver and brighter than your something. You have more joy than your something does sorrow. You laugh more than your something makes you cry. You have found a way to live with your something. You keep living in spite of it.
I am bigger than my something.
You will be okay.
I am okay.
Finding my Miracle 
Wow, this one really hit me! Like I said, I am JUST about to start my journey into feeding tubes. When the Dr told me ( and I went in with the intent of bringing it up!) I was.fine until he said ” this could be permanent”……..my mind shut off. I heard nothing else after those words. Permanent. I’m 53 now. 25-35 years of feeding tube…. luckily my amazing husband u derstood and listened and asked questions!!! But like you with the calculator, that’s where my mind went too. As always, thank you for writing such a wonderfully we’ll put post that helps!!! Brightest Blessings!
Hi, have posted this link on PainPals regular feature “Monday Magic – Inspiring Blogs for You” Claire x
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Whenever I’m climbing a big hill I have to drop my eyes down to see just the next step instead of the endless hill ahead. I guess that’s what you’re doing on your journey. You do sometimes need to glance at the road ahead but it can get so discouraging. Please know that I pray for you every day that there will be bright moments to give you hope, and that doctors will find better treatments, and that your body will heal itself, and that you will be ok.
Suzanne
Do not let that light go out. ❤️ (I wrote a post about that.) I know how hard it is to keep going when your sorrow tries to swallow you whole. But there will always be a little spark of hope. Listen to that, and help it shine brighter.
Beautifully articulated piece. I feel your pain, at least emotionally. I too hope for a brighter future for you and I! x
Numbers are scary. It is also scary to think how vulnerable we are to the whims of governments and decision makers who have no idea about the reality of chronically ill people. When the voice in this post guided, “Don’t go there,” I was saying it too, loudly in unison.
I have the same arguments with myself – “everybody has something”, “you’re lucky to have access to medical technology etc. – and then it sounds ungrateful to be complaining and then guilt starts knocking on the door wanting to come in and scold me for being ungrateful BUT I am grateful for so many things and while I am lucky to have treatments available etc., it doesn’t mean I have to be ‘happy with my lot’ even though pain and happiness can live in the same house.
I love your writing style and the short, blunt reiteration of “I hate it,” gets the point across. This post of yours today reminds me of one of my own about “getting my head around it” (‘it’ being the autoimmune illness beast) and not to confuse ‘acceptance’ of illness with ‘being happy’. Just because we accept it doesn’t mean we have to like it!
Some compassion from others from time to time, (as opposed to ‘pity’ which is a destructive force) is welcome to acknowledge that life with incessant ill health is hard work, not pleasant and to get this far means we are doing a good job.
Catherine, you are doing a really good job in remaining steadfast (as if there were any other choice!) and you have shone an important light for others on what it really means to struggle with a debilitating medical condition both physically and emotionally.
While it may feel like friendships and opportunities afforded to your peers might be slipping away from you, please remain hopeful. You never know who or what opportunities may enter your life any day now that might lead to something wonderful. You ARE bigger than your illness. If your loved ones and your readers can see that, then there will be other people who can see that too.
Compassionate hugs x
I did not realize we have to use facebook or such. So, I will just say to you here it’s Colleen Shaw
I know how you feel…I am praying God gives you all you need, we all need Him to fill us up with love, comfort and joy…just remember that some of your friends are going on but many of us that you do not even know are here. Sitting with you, laughing with you, crying with you and going on slowly the best we can. Call on us when you need. Draw on our strength, the same as we draw on yours. I am praying for your miracle. Hugs and when you get ready to travel I am here in Paris. Hahahaha I will show you all at slow speed, it is the only speed I have left ;p
Your light shines brighter than any sun. 🙂
aww, why you have to make me cry, #sadface #mycomputerdontdoemojis ❤
This is one of the best. With the one on the trees. I can relate. And I wish I could give you a big hug even though I don’t know you.
💜
❤
>
*hugs*
Half Cheryl,
This may be the best one yet. You are so honest.
Thank you.
Yes, you are bigger than your something. For this I am so glad.
Double Catherine.
Yes, you will be ok.