There have been times these past few weeks when, despite the ever growing mountain of work on my desk, and despite the level of stress I feel about not being more efficient and reliable, I have to surrender. Some of the medications I have to take can make me very drowsy.
To try to help the weird feeling I’ve been fighting in my legs for months, the transplant clinic decided to increase one of my medications for neurological pain. My legs don’t hurt. The problem is they don’t anything…hurt, get tingly etc. They feel like your cheek does after you’ve gone in for a filling and the dentist has given you a numbing shot. You can still “feel” in your cheek, but you can’t really, or that filling would hurt like crazy and they’d be peeling you off the ceiling. That’s the way my legs have felt since the end of June, to varying degrees of weirdness.
I’m not sure why increasing this medication would make them less numb as opposed to more numb, but I’ll try anything. I had worked to wean myself down in the first few months post-transplant because I didn’t like feeling sleepy or having brain fog all the time. I’d rather hurt some, and think clearly, than be pain free but sleep all day.
So, while I’m prying my eyelids open with tooth picks and hoping my body will adjust eventually so I can function, I’ve been watching TV.
You can’t mess up TV. You can’t make a bad call, or say the wrong thing or do anything hurtful in any way because you’re too loopy when you’re watching TV. It seemed like a safe place to hang out in mental limbo.
I’ve been binge watching The West Wing. Like most TV, it’s this wonderful alternate universe where the problems of the world can be debated in ways we can only dream about in real life, and actual solutions occasionally get implemented – all in under an hour! It’s much more soothing than watching any of the cable news networks (and I argue if you’re going to watch one, you’d better watch them all.) You might even call it “West Wing Therapy” – a place to go to think about real stuff in unreal ways. It’s a time out from what is that gives you a moment to entertain thoughts about what could be. I find myself wanting to keep a pen and paper handy to write down some of the lines and zingers used. It must have been a blast to be one of the writers on this show!
I’ve made a few observations in my West Wing Therapy sessions.
1.Evidently I have no fashion sense. Not that this is news to me. I’ve never laid claim to an identity as a hipster, or someone trendy or cool. These are probably not the words I’d use if I were trendy or cool. The West Wing is a show from my youth. When I’d watch shows from my parents’ youth, they might have been good, but they always seemed, well, dated and campy. Why doesn’t The West Wing feel that way to me now? The only things that seem out of place or dated to me are the flip phones and the lack of flat screen TVs.
2. It may be around 12 years since the last episode ran on TV, but thus far I haven’t run across a script that wouldn’t totally work today. It’s just a few of the details that have changed. We do have same-sex marriage now, and the HPV vaccine they refer to as being researched in one episode is a reality now.
3. For someone who has trained her dog to search out the phone or finger pulse ox because she can’t see well enough to find them, I notice the most unimportant details sometimes. There are a lot of scenes in the Oval Office where the family photos on President Bartlett’s desk move positions, even though the entire scene is supposed to be taking place in minutes. Who notices that? Who cares? And why, of all people, does blind-as-a-bat me notice and then be disturbed by it? It’s crazy town I tell you! Crazy town! Yep, even hit rewind to make sure I really saw it.
I can’t explain it. I do think the medication is helping my legs. It definitely is not helping my brain. I’m sticking with it for now. When you don’t drive, getting the ability to walk without planning every trip out the door carefully from a leg standpoint (the way I used to plan from an oxygen standpoint) is important.
Before transplant, ironically, I was in the best shape of my life. Pulmonary rehab involved exercise several days a week with your own personal training team. I’ve never been athletic. I don’t have a natural talent for it. Gym class was one of the places teasing was the worst for me when I was a kid. I grew up in the era where gym teachers let “captains” choose teams for games. Yes, nothing like being the blind kid in this scenario, especially when most of the games involved fast-moving balls. But in pulmonary rehab, no one was in great shape. Everyone, except my friend Ben, was at least 20 years older than me. I didn’t feel awkward, competitive, stared at or judged. I was competitive with myself, the way it should be. The environment was supportive in the right places and challenging in the right places. Pulmonary rehab, where have you been all my life? I do miss it!
I had even set a private goal for myself to try to do a 5K in Oyster Bay this past October. I would have been about eight months out. For many post transplant, that would have been a piece of cake. I didn’t plan to run it – just to walk – so it seemed pretty achievable. That was before transplant, a round of rejection, and all these leg complications. It ended up being a non-starter anyway. The 5K was cancelled so I never even had to tell anyone it was my own private little goal.
Sometimes I get down because I’m not achieving goals that a year ago I would have thought might even be too easy this far out from transplant. What perspective a year gives you! Even so, I would do it all over again in a heartbeat. My quality of life is better now than it was before transplant. Even if it doesn’t improve further, I can cope. I just kind of wish I knew a little better what is reasonable and achievable so I can plan life accordingly and set reasonable goals. Constantly failing, whether it is my fault or not, feels crappy! But, if someone gave me an answer, I might suspect they were setting the expectations too low and not totally believe them anyway. You just can’t win with me.
For me, a little respite in the world of the fictional West Wing, with its gigantic, yet solvable, problems has been fun and relaxing. A few days have passed since I started writing this, and the brain fog is improved. I’m not exactly up to my normal self, but it is getting better. I’m glad because January is going to be a very tough month and I’m going to need every last advantage I can get both physical and mental, to get through it.
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