A Lyme Disease Journal

It seems silly in retrospect, but one of the things that took me longest to integrate into my daily experience with Lyme disease was simple devices that would increase my mobility, strength, memory, and so on. Many of these things are inexpensive or even free, and all of them helped to reduce the impact of the symptoms I was suffering from.

Here are some top things that I made use of. Please comment on this post with your own ideas and maybe we can build up a nice list of things that anyone who is suffering from Lyme disease can draw from.

• Oven timer: This may not be obvious, but I left the stove or oven on and forgot about it far too many times before my husband and I decided that I should always turn on a timer if I was going to be cooking. Even if it didn’t seem necessary, I could always set it to 30 minutes or an hour from now. Better to have it go off and remind me that something was on the stove than to deal with a badly burnt pot or worse.
• Cane, with SEAT!: It took me far too long to purchase this one (perhaps out of self consciousness?). Once I decided to get one, I found a geeky solution that saved me over and over and over again — the flipstick. This cane has a built in seat that you can flip out. Once I had it, I no longer had to dread those long hallway conversations when someone is kindly asking how you feel our bringing up a work issue. Instead of leaving them ready to collapse, I would pull out my cane (if I wasn’t already using it to help me walk), and have a seat. What a difference that made!
• Parking permit: Ok, I’m an eco-geek, I’ll admit it. I was biking to work before I got sick, and I tried to keep it up after. The exercise was a good thing, and well intentioned, but far too often I ended up in a collapse either when I arrived or before the day was out when I pushed it physically. You can only ask for a ride home as a favor so many times before you have to make a change. For me that was first busing, and then driving and paying an arm and a leg in a pay parking lot far to far from my building, and finally, far far too late, a parking permit. I asked for a disabled one and had to fight a major battle to get it, but that’s another story for another time.
• Husband: Ok, this isn’t really an assistive technology, but it sure is a great assistance. I should generalize this to anyone you’re close to, what it’s really about is being able to say when you need help. Non-trivial, but crucial.
• Write things down: When you have cognitive impairments, writing things down is KEY. There are many ways to go about doing this, and sticky notes, emails to self, and so on are all ways of doing this. Putting notes where you will see them at the time you need to act is a trick that has been used by individuals with a variety of cognitive impairments (e.g. early-stage Alzheimer’s patients) for years. Learn from them. At least for me, anything I had to remember to look it might as well not have been written down. Some tricks of the trade: If I needed to know something first thing in the morning, I would set up a calendar entry that would txt message my phone to alert me (since I was unlikely to check my email or the calendar on my computer during the morning rush). Late at night, if not urgent, I’d send myself an email (often using my phone, which I kept near the bed), or write it big on a piece of paper next to the bed that I’d see in the morning. Sticky notes or other things right in front of the front door where I’d bump into them on the way out of the house were a big help. If anyone ever asked something of me when I couldn’t write it down, I’d give them the responsibility of sending me an email to confirm. If that wasn’t possible, I’d interrupt the conversation right then to write it down. Anything I needed to track on an ongoing basis went into a custom, known location. For example, phone calls to take care of household stuff, problems with the insurance company, and so on are tracked in a google spreadsheet that I can easily get at from anywhere. Work stuff that I might forget goes on a sticky on my laptop keyboard or on my screen where I will have to move it to start typing at work. I’ve even been known to put something in my shoes (can’t forget that when putting them on) and in a pot (where I would see it at dinner time).
• Rubber bands: These are incredibly versatile tools for twisting just about anything. I first discovered this years ago when I had a repetitive strain injury that left me with very weak and painful hands. Put them around a jar lid (for example) and then try twisting. It’s amazing what a difference they can make. If you need to, also use hot water to help things along.

There were a couple of things I never got that I probably should have considered. For example, a disabled driver permit from the state of PA would have allowed me to park almost anywhere when the need arose. Didn’t even think of this one until it was too late to matter, but it should have been top on my list right at the beginning. Equally high on my list is a wheelchair, at least a cheap model for moving me around in emergency situations such as some of the collapses I experienced at work. Emotionally, I never managed to work up the guts to go through with this one, I guess I didn’t need it often enough/bad enough. I’m still trying to understand why I resisted this so strongly. Perhaps the same forces that caused me to wait far longer than logic would dictate for even the assistive devices I did use affected my willingness to consider a wheelchair. Why is it that we only consider using these things when it seems we don’t have a choice?

So here’s my suggestion: this year, before the holidays, take stock. Ask yourself what would increase your mobility, energy, or other things that you care about. Remember that technology does not define you, that mobility and exercise may be separate categories of activity, that spending time and energy on the things you care about most is your goal, and that wasting energy on the rest is to be avoided. Remember that spending you on things that fulfill you is part of healing, and that quality of life not defined by your energy levels or even your pain levels but by spending time with the people and activities that make you happy. And then make or buy or ask for the things that will help you focus on being happy.