Yesterday afternoon I had my tunneled CVC (central venous catheter…same thing as a central line…but the cool kids call it a CVC…or the lazy ones) put in. In my last post I said that I wasn’t really sure what it would be like in terms of sedation and pain, so let me fill you in now that I know. Sedation was mild. Very mild. I was completely awake and aware the entire time with no memory lapses or anything. I was quite calm throughout the whole thing, and perhaps whatever they gave me helped with that, but I’ve also gotten really good at just lying still and remaining calm while doctors and nurses perform uncomfortable procedures…tube changes, PICC line placements…it’s all just part of the chronic illness territory. As for the pain, they numb you up really well so the procedure isn’t painful but it is incredibly uncomfortable. Once the numbing wore off it was a different story. I could barely move last night. Besides just the ongoing sharp ache all through my shoulder and neck, every time I moved I would get these sharp twinges. And it all felt so tight and stiff that I couldn’t even hold my head up straight. Ouch.
Thankfully today the pain is so much better! I’m still sore and I’m not moving around as smoothly or as quickly as usual, but it’s all very tolerable. I was determined to just suck it up and do all my own TPN stuff today so as not to delay my discharge. I am happy to report that I have passed what I like to call ‘TPN school’ and will be going home tomorrow!
I passed TPN school. I’m going home tomorrow. I should be satisfied, right?
Wrong. My hair was really greasy and it was really bothering me. Because I can’t get my CVC dressing wet, showering is actually quite a production. And since my feeding tube was all dressed and taped up it would have been an even bigger production. No big deal, I told myself, it can wait until I’m home tomorrow. Except that I couldn’t stop thinking about my hair. To make things worse I kept touching my hair to try and convince myself that it didn’t feel too gross, which then only reinforced for me that it needed to be washed.
I was lying in bed frustrated about the fact that my hair needed to be washed but that there was nothing I could do about it, and then I realized that if I really wanted to I could do something about it. Or I could at least try. So I decided, with my sore and stiff shoulder and neck, that I was going to wash my hair. I am now going to proceed to share too many details about the process so you can picture just how much effort was involved.
Ease myself up and out of bed. Disconnect my feeding tube. Pick up the TPN backpack. Grab a towel from the hallway and walk back to the bathroom. Put the towel on the floor of the bathroom and kneel down. Lean forward over the edge of the tub to see if I’ll even be able to move my arm enough and without too much pain. Stand back up and go back to the hallway to stock up on towels. Maneuver my way to the cupboard and awkwardly reach down to grab my shampoo. Reach down again to grab the Press and Seal saran wrap. Cover my dressing with press and seal. Take braid out of hair and brush it. Bring supplies to the bathroom. Reach up to grab the movable shower head extension thingamajig (no red underline under the word thingamajig!? Apparently it’s a real word!). Cover my backpack with a towel. Wrap towel around my neck and tuck it in shirt for extra security against the evil water. Lean over tub. Okay, phew. Now I can wash my hair! I’ll spare you the details on the actual hair washing itself.
It wasn’t the most painless process in the world, but it was far from the most painful one. Pain aside, I’m really happy that my hair is clean! It was a lot of work, but I’m really quite pleased with myself that I made it happen.
And sure, another day I’ll probably be discouraged by how much extra effort it takes me just to wash my hair, but for tonight, my clean hair is a huge accomplishment and I’m really happy about it. For tonight, my clean hair is enough to keep me smiling.
We all have our limitations and we all have things that take more effort than they should, but there is a difference between the two and I think we often get them confused. I know I do. I tend to be an optimist, but I am also very realistic about my health and my current situation. I know I have certain limitations; I know there are things I cannot do right now. I cannot work a full time job and I cannot eat a real meal. I cannot go to school and I cannot take a trip around the world. One day I might be able to do those things, but right now I can’t and I know that. In a completely separate category are the things that take a little extra effort but that I can still do. Like washing my hair. And getting enough calories into me. The problem is that sometimes I look at the extra effort required and see it as a limitation.
I’m not saying we should all abandon our realities and forget our limitations, all I’m saying is that we shouldn’t be afraid of putting in the extra effort to do things that make us happy and well. If we focus on all the things we can still do, and if we take pride in the things we accomplish in spite of the extra effort required, our limitations won’t always be the focus and they won’t always seem so overwhelming.
I leave you with a delightfully cheesy quote from my grade seven classroom: “Triumph is just try with a little umph.”
My clean hair is a triumph indeed!
I wish everyone tonight clean hair, whatever that may mean for you.
Well done! It is the so-called “little things” like hair that make the biggest difference to one’s quality of life, isn’t it? While doctors and others may think hair is trivial, (compared with life threatening symptoms) it is most important for self-esteem to feel good about oneself and clean hair is part of that! It is hard enough when we look different due to our illness whether it is from tubes, splints, equipment etc. The least we can do is feel good and normal about other parts of the body.
It is such a triumphant feeling to know that something can be achieved independently. That boosts our resilience, determination and confidence. Congratulations on solving a problem and managing a task that others would baulk at in the same circumstances.
Hi Catherine. Congratulations on tackling and passing the TPN challenge AND going home tomorrow AN washing your hair! Small triumphs come together to make bigger ones! I really appreciate your comments on limitations. Enjoy every minute of returning HOME!