Getting in the way

Illness doesn’t like to be ignored.

It waits until you’re going about your business, feeling reasonably well and enjoying your busy life, and then it pops up to wave hello, just to make sure you remember who’s really boss. It doesn’t want you getting too comfortable.

Take last week, for instance. I had a (minor, and I’m fine) pulmonary embolism. A clot that had formed in my heart after surgery migrated into my lungs, very briefly blocking the flow of oxygen. I got lightheaded and short of breath, my vision narrowed and my lips turned blue. (Staring into the mirror at your own face turning blue is an interesting experience.) On my own in my apartment at the time, I held on to the wall and made my way down the hall to the bedroom.

Now, I love living on my own – being a neat freak when I want to be and a slob when I’m tired; showering with the bathroom door open; eating odd things at odd hours. But sometimes, when something like this happens, I feel like this is another thing chronic illness wants to wrestle me for.

I’m completely fine now. I lay down for five minutes and felt much better, then went to my doctor. But I was scared, and as I lay in bed sweating buckets and trying to take deep breaths, I was also annoyed. “Come on,” I thought. “I don’t want a roommate!”

I think we all know that feeling of having some part of our ordinary selves threatened by illness. It’s not just my living arrangements. Sometimes it’s my job or my social life, or my workout or even my evening plans. Maybe some of you have set aside favourite hobbies or daily walks.

It feels, sometimes, like something’s chipping away at the things that make me me. It’s disappointing and it’s scary, and what’s to be done?  

I’ll make adjustments, but I won’t change who I am. And I am a person who likes her space.  

I think that’s one of the greatest challenges of living with chronic illness – much easier, I think, for those of us who have lived with it our whole lives than it must be for people who are suddenly confronted with a life-changing diagnosis. Sometimes it’s a struggle to find ways to be ourselves with bodies that seem entirely uncooperative. But it’s necessary and important to do so; to understand the things that are meaningful to us and to shape our lives to accommodate them. These things might not look the same – I’ve got a doctor on speed-dial now and a neighbour who’s said she’ll be there if I need her – but they’re ours.

That’s what matters.

Healing

Spot the difference:

                                               3 days post surgery.

                                                3 weeks post surgery.

Not bad. Thanks, Dr. Y.

Swimming

Guess what.

I miss the pool!

I'm not supposed to use my left arm for a month, so I put my Y membership on hold until September. Now I find myself craving my aquafit classes and the laps I'd been swimming. I think this means I've finally found an exercise routine that's right for me. I've never really missed working out before - I've missed being active in general, but I've never craved a specific activity.

Not only is the pool a big stress-reliever, it also does wonderful things for my dumb old hips. I had a cortisone shot in the right one in mid-July, and it's helped a lot, but I've found cortisone is extra awesome combined with water exercise. 

I'm a little uncertain about those laps, because I think they may have contributed to my lead fracture. But, Dr. Sneakers is convinced the lead was already damaged, and assures me I should be able to do almost any kind of exercise I want. (We have no idea how long the leads had been damaged, but it could have started as much as a year and a half ago.)

I went in my parents' pool on the weekend and floated around on a noodle, and it was lovely. I'm so looking forward to returning to my regular swims.

(PS: my incision is iiiiiiiiiiiiiitchy!!! Scratch scratch scratch scratch.)

Hi there. Please look at my chest?

I am feeling much, much better.

The full-body pain of last week - a nice little leftover from the muscle relaxant they used before intubation - is gone. I also got my bandage off yesterday morning, and the incision appears to be healing nicely. And, I'm feeling less  anxious now that I'm up and doing things for myself again. Still tired and a bit blue, but I am working hard at taking care of myself, getting enough sleep and relaxing.

The only thing that's really bothering me is the placement of the new ICD. When I received my first defibrillator, I asked for it to be implanted under the pectoral muscle. This meant more pain and a longer recovery, but the device was nicely tucked away and not very visible. When the surgeon put in the replacement last week, though, he decided to hide it under breast tissue instead. He explained afterward that submuscular implants are becoming rare now that ICDs are so much smaller, and that he wanted to ensure easier, less painful surgeries down the road.

I get that. I know he was doing what he thought was best. And I know that the placement of the device wasn't the thing on everybody's mind. Lead extraction can be complicated and risky, and I'm so grateful that my surgeon got everything out neatly and without nicking anything important. Dr. Sneakers informed me beforehand that the team would have to "get out all their open heart surgery tools" just in case, and I'm very happy we didn't need them.

But this thing is basically in my breast. It's lumpier, and I think more noticeable, than before. Not so helpful for someone who is already a bit self-conscious about her (enormous) chest. Now it's enormous AND lumpy. And of course, I wasn't planning on surgery this summer, on having to make a decision about a new ICD. I wasn't planning on having to think about these things.

I hope I'll feel better about it once it doesn't hurt anymore. I hope it settles in soon and doesn't feel so foreign. And I hope somebody looks at it and tells me it's no big deal.

I suppose if I ever had a reason to go around flashing close friends, this would be it.