Piece by Piece

I have a whopper of an illness, one that I don’t feel capable of handling all on my own. I’m by no means a medical provider let alone specialist, though I’ve learned more about medical issues than I ever thought I would.

However, that doesn’t mean that I’m going to let the ride go on with me sitting idly in the back seat when there’s areas of opportunity. Instead, I’ve decided to approach my illness on a piecemeal basis, chipping away at any symptoms that are within my reach to improve the quality of my life. This not only lets me feel more in control of what’s happening but allows me to proactively approach my health care in a way that one doctor or specialist may not be able to. Through working at it, involving other medical providers and specialists, and doing some research on my own, I’ve formed quite the team. And this team, piece by piece, has helped me chip away at my illness and give me a better quality of life. While I may not make a huge shift in my state of health, at least through my own efforts, if I create the best team I can, I know I can definitely make a dent in it.

So, I’ve decided to form my own medical team and become an integral part in it. Me… who failed physics in college. Me... with no medical degree. Me… who is tenacious and has a no-quit attitude. Me… who will fight harder and longer than any one person for my health as a whole.

So that sounds great, right? How does that translate though? Well, here’s a few of my most recent endeavors:

Back Pain

So, I basically live a pretty sedentary life. As a result of that, I have lost much of my core muscles. I don’t know if this is entirely accurate to say but I often feel like I have lost the strength to hold up my “carriage” or body frame for very long. Those muscles just aren’t there anymore. With this predicament comes back pain. Endless back pain.

So, here’s where my team comes into play. First there’s me. On my own, I’ve found several yoga poses and stretches that help eliminate the pain in the short term and a few that will slowly help strengthen those back muscles for the long-term. But this hasn’t been enough. In comes my self-formed team. Physical therapists. They have re-aligned by weak, crunched-up back that I’ve gotten from lying down for hours on end. They have given me exercises to work on that will help in the long-term (though admittedly I’m not super consistent about doing them, often too tired to get to them or I forget to). Together though, between my gentle yoga and my physical therapist’s expertise, we’ve made quite a team and while I still have some back pain, especially during periods of relapses, it’s quite reduced from what it was. Chip… Chip..

Cognitive Challenges

So, let’s go for a big hitter next. Cognitive challenges. So many and how can I possibly impact them? While I definitely still have them, there’s been a lot I have been able to do to eliminate or reduce the impact of them.

For example, I LOVE to read. However, I found that as my illness set in I was unable to concentrate enough to read more than a few pages (or even hold the book up!). So, I decided to self-train my brain to read again because reading took me into a world far, far, away from my illness. So, how did I do it? I decided to start this challenge by committing to read just one page of my book in one sitting. Granted, it took me a bit (seriously!), and there was a lot of mind wandering but I did it. The next day I committed to two pages. Then three. Now I can read at a pretty regular pace, having created a solid level of concentration. I’m pretty proud of this success. Back into the world of dreams, magical stories, and criminal investigations I go! And as far as holding up the book, I either don’t, laying it on the couch as I read, or I buy small paperbacks.

I’ve also made a game of some of my cognitive challenges. While I was never good at remembering the names of new people, I am terrible at it now if I don’t really, really try. And even then it can take months. So, I’ve made a game of it. And as many of you may have heard me say, I play to win. Now, if I meet someone new, I try to associate their name with someone or something that will help me remember their name. It still will take me a while to keep that association in mind, or not let other associations interfere, but it’s quickened my pace for remembering names.

Other tricks of the trade – if you tell me something you can bet that I am going to write it down. Even if it’s something simple that I feel like I would never forget, I write it down. Because I know I likely will in time. There’s no shame in notes and boy do they help! I also live on an alarm-based system, with my phone alarm going off throughout the day (now labeled alarms after many times of forgetting why the alarm was going off). This works like a charm. I’m on-schedule and on-time for everything now – medications, appointments, and even when it’s time to get up and stretch again. Tied to my alarm system is my calendar system. I have EVERYTHING in it. Big and small, appointments and reminders, it’s my life electronicized! (Yes, I know that’s not a word, but it just made sense here! 😊)

Lastly, I’ve pulled in a neurologist and ophthalmologist into my “cognitive team” – an ophthalmologist to see if my vision loss at the neurological level can be corrected in some way (or my brain retained) and a neurologist to see if they can help me get to the root of the problem and guide me to a path to cutting off these issues at the core. This one is still very much a work in progress but I’m not giving up on my team just yet! Chip.. Chip..

Lack of Coordination

With my condition has come a lack of coordination. This one has been a real doozy since it’s caused me to actually get hurt – running my knees into the bed frame, hitting my shoulder on a wall from cutting a corner too close, etc...

First, I’ve done the obvious. I’ve slowed my roll! By slowing down I’ve been more purposeful with my gait, rounding corners better and stopping in time before I hit something. I’ve also learned my trouble spots – the ones that get me the most and the ones that could have the most consequences. Yes, I’m talking about the stairs!! My danger zone. I now take stairs with caution (though I still have literal mis-steps) but I have less issues with them. And, when possible, I take the elevator and avoid stairs altogether!

On this one I haven’t managed to form a team yet, but I’m hoping this is something I can address with my neurologist as this seems like something that may fall into their realm as well.

So, I guess what I’ve eventually learned from years of living with these symptoms is to keep pushing to find ways past my trouble spots. And, if I can’t do it alone, then I put together a team. As the saying goes, “sometimes it takes a village….”

For those of us in this same boat, let’s not ever be afraid to pull in our village for help. Sometimes I think our friends are literally wishing for a way to help but just don’t know how to. Let’s pull them in on the tasks we can. While I’ve sometimes been shy about sharing some of these issues with people, I’ve never been disappointed by doing so. They have not only helped but helped in a way that made me feel that this is just one of life’s challenges, not one of “Lisa’s issues.”

And let’s not forget our medical team. While for many of us it’s been hard to find a doctor that knows much about our core illness, if we break them down by symptoms and go to specialists for those symptoms, sometimes we find we can chip away at life’s irritations, impediments, and challenges. And that all adds up to a better quality of life for us.

While it’s not a cure-all end-all, I’ve found this approach, piece by piece, has chipped away at some of my most challenging symptoms.