Out came the snowman sweater

This past month has been a stressful medical marathon. Four weeks ago I had my old central line pulled due to an infection. Unfortunately, the new line that was placed was not done so properly so three weeks later it was falling out and I underwent yet another line placement. Add in a whole whack of appointments, ER visits, new medications, unwanted side effects and the usual relentless symptoms day and night, and life has been really wearing on me lately.

I think you know by now that I like to put a positive spin on things. I do my best to have a good sense of humour about everything…and by everything I mean all of the random, weird, gross, random, frustrating and random stuff that comes along with having a chronic illness. Much of the time this sense of humour is not for anyone else’s benefit, but for my own. I laugh things off because if I didn’t I would probably drown. The weight of it all is too much to carry day in and day out and I keep things light so that I can keep my head above water. In reality, though, there are days when I do carry it all. There are days when it all becomes too heavy and too real.

Yesterday was one of those days.

After my line was pulled because of an infection, it never healed properly. Multiple antibiotics later, it was still looking really angry and becoming more and more painful. I was getting really concerned and was ready to call my doctor this morning, when last night I was poking around in the wound and I saw something strange.

It was the cuff. It was a piece of my infected line that had been removed four weeks before. Apparently cuffs are occasionally retained when lines are removed and apparently they often don’t cause any problems. I don’t know what the protocol is when the site is infected, and I don’t know if they’re supposed to inform the patient about any of this…what I do know is that for four weeks I had no idea the cuff was still in there and that it was the reason my infection was getting worse and not better.

It takes a lot to rattle me. I have tubes pulled out of and shoved in to me without any sedation on a fairly regular basis, and I deal with these tubes at home every single day. But pulling out that cuff? That definitely caught me off guard!

To be perfectly honest, it scared me. Most of the time I don’t really dwell on the fact that I have this scary thing in my chest. I don’t focus on the risks associated with it, the extra hassle it adds to my life, and how as much control as I’d like to have, ultimately I have to trust someone else to place it and remove it. I hate that I have not just one, but two tubes in my body that, as the result of an unlucky tug or less than vigilant care, could land me in the emergency room with no notice. I hate that, but that’s overwhelming, so most of the time I just don’t let my head go there.

Sometimes, though, I can’t help it. Sometimes the unpredictability, uncertainty and maintenance piles up and becomes too much. Last night it was too much.

I stood there in the bathroom, tweezers in hand with blood dripping down my chest while I struggled to stay upright as I waited for the nausea meds I’d taken over an hour earlier to kick in, and I wanted to cry. All I could think was, “I don’t want this to be my life. No thank you. I need a break.”

So I took one. Sort of. There is no such thing as a break from chronic illness. When the problem is family, work, school, whatever, you can escape for a while, but when the problem is your body there is no getting away from that. Instead, you have to settle for a sort-of break.

For my sort-of break, I took the night off from TPN. There were still tubes coming out of me, of course, but for the rest of the evening I was able to move around without hauling an eleven pound backpack along with me and I was able to sleep untethered. It was a good start, but when I woke up this morning I was still in need of cheering up. Too sick and tired to go anywhere or do much of anything, I went to my default happy place: Christmas. Out came the snowman sweater…my crochet-embellished-tacky-Christmas sweater.

I’ve been wearing it all day! And yes, it is making me happy.

I know that I’ll bounce back because I always do. I know that soon enough, whether it be a day from now or a week from now, I’ll be able to laugh again at the random, weird, gross, random, frustrating and random things that happen. Everything overwhelming me right now will go back to just being my norm.

In the meantime? I’m just waiting it out in my tacky sweater.

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Most of this post was written on Tuesday and now that it’s Thursday, I can tell you that I am bouncing back. The weight of it all doesn’t seem quite as heavy for now and I’m able to find things funny again. I considered not even posting this now that I’m feeling less overwhelmed, but the thing is, all of that exhaustion, fear and distress are every bit as real and present in my life as the silliness, the humour and the acceptance, and I think it’s important to share that.

I also know without a doubt that I am not the only one feeling overwhelmed by life right now, so I just want you to know that you’re not alone in that. I want you to know that it’s okay to need a break and it’s okay to take one.

I also want you to know that it’s okay to wear a snowman sweater when it’s still summer. Now, I can’t imagine why you wouldn’t have your own snowman sweater, but just in case you don’t, here’s some winter whimsy to tide you over until you get your own!

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Room for reality

It’s not a secret that I’m an optimist. I look for the good in everything and everyone, and I always try to give other people the benefit of the doubt. I believe in the power of positive thinking, especially when it comes to living day in and day out with a chronic condition.

I am also a realist. I like to be aware of and prepared for all possible outcomes, and I don’t hide away from the parts of life that are messy or uncomfortable (except for the dentist…I really need to make an appointment…). And as a realist, I believe that positive thinking can sometimes be hurtful, too.

Just hear me out…

One of the hardest parts about living with a chronic illness is grieving your old life and accepting your new normal. It’s an ongoing process and I still have days, or even weeks, when I’m totally just bummed out by my life.

What makes this process even harder, though, is that the rest of the world has a hard time accepting that a chronic illness isn’t just a temporary thing. As humans we do not like to see each other suffer and we do not like to feel helpless. We just want to be able to say something, anything, to support each other. As such, those of us with chronic illnesses hear a lot of various forms of the following:

Don’t think like that, you never know what will happen!

Just stay strong and one day this will all be behind you!

Things are going to turn around for you, just you wait!

You’ve just got to stay positive and things will get better. I can feel it!

(And a personal face palm favourite of mine) You’ll be eating [insert delicious food here] before you know it!

I know that when people say things like this they are coming from a place of genuine care and concern. I know that, and I appreciate that, but hearing things like that is when positive thinking becomes more hurtful than helpful. While we are just trying to come to terms with the fact that our lives will never be the same, the rest of the world is trying to encourage us by convincing us that it’s all just temporary.

I can clearly remember feeling caught in the middle like that in the weeks after my NJ tube was pulled. It became clear to me quite quickly that I was probably going to need a more permanent feeding tube. Of course I was hoping for the best but I was also trying to prepare for the fact that my life was about to drastically change. The problem was that no one let me say so; whenever I mentioned it I was told not to go there and not to give up. I was told that if I just kept fighting I could get better. The rest of the world was not ready to face my reality so I had to face it alone.

Without a touch of realism, optimism can do more harm than good for people with chronic conditions. We start to doubt ourselves and think that maybe we’re just not trying hard enough. We try to keep our expectations in check with reality, but then we start to wonder if we’ve confused being realistic with being pessimistic, and if doing so is keeping us from getting better. So we put on a smile and we pretend to be positive when really we just feel isolated. We’re still going to worry about the future, but we’re going to be alone with those worries.

It needs to be okay to talk about reality. Hope for the best, absolutely, but it also needs to be okay to prepare for the worst. And here’s the thing: when we are honest and upfront about less than ideal, yet realistic, outcomes, when we get the chance to really wrap our heads around them, we are able to fight harder to avoid them. Making room for reality does not make us lesser patients or lesser people, but it does make us better advocates. It makes us stronger and better prepared to face whatever life deals us next.

Optimism and realism are not mutually exclusive. The way I see it, reality exists whether we acknowledge it or not. Think about it like a room. Reality takes up a certain amount of space in that room. When we try to ignore reality, we end up feeling isolated, doubtful, confused and worried. All of a sudden we have these negative emotions taking up space in that room, as well, which means we have less space for optimism and the good things in life. When we acknowledge reality, however, when we face it and let it exist in our lives, we rid the room of those negative emotions and we end up with extra space!

I’m an optimist, but I’m also a realist. In making room for reality I ended up with that extra space!

So I choose to fill it with joys and silver linings.

And I have reality to thank for that.

Joy jar

Clean hair

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.