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.
Advice from someone on the other side…
August 22, 2008 at 3:50 pm (thoughts)
Tags: advice, commentary
I noticed when I was pregnant that there were suddenly a lot of pregnant people around. Funny how, once I had my first child, I saw many fewer pregnant ladies, but a whole lot of moms and dads with strollers. Now that I have lyme disease it seems that everyone knows someone who has a relative or a friend or … with lyme disease. The first two didn’t surprise me. This does. Makes me sad … but has turned out to also be very valuable. I found my doctor in NY because a colleague of mine had had it (turns out more than one had). I learned about the possibility that my (sub-clinical) seizures are caused by it from a friend of a friend. And so it goes.
Most recently, a former student and friend told me that he had an aunt who had recovered from lyme disease. He put me in touch with her, and she shared her thoughts in this gem of an essay (posted with her permission, and followed by my further questions and her response).
First, let me introduce my self. I was the California Statewide Tick-borne Disease Program Coordinator for CA State Department of Public Health (old name was Health Services) from 1992 to 2005. During my 13 years tenure there, my job was conducting the statewide tick-borne disease surveillances (including Lyme, Babisiosis, Erlichiosis, Bartonella), investigating human cases, working (collecting data) with local health departments and mosquito and vector control agencies and managing the statewide tick database (surveillance and disease testing)….etc.
I was bitten by a nymphal tick and infected with Lyme while investigating a possible Lyme case up in the high desert (the place was not known for Lyme) in 1999. To make a long story short, when I got infected, I was no difference from anyone else ~ a very bumpy ride, and experienced very complicated treatments. I had 9 ½ years of antibiotic treatment (Doxy, Zixothrmax, Biaxion, Rocephin-IV, Leviquin……etc.); and for a good of 6 years I was taking a combination of 3 different antibiotics (my monthly drug expenses was over $1500). Even with early treatment (2 weeks after I had the EM), my symptoms was not getting better after the initial treatments, as a matter of fact, my worse symptoms occurred during the treatments in 2001-2005. However, fyi, I stopped the antibiotics only about three months ago.
Most of my problems were fatigue, short memory loss, photophobia, smell and taste abnormality, nausea, vertigo, motion sickness, word reversals, words finding difficulties, and special disorientation (difficulties of judging distance, bumping into things, dropping things); as for the typical arthritis, I only experienced about 1 ½ years. Sounded like you’re having the “Neuro Borreliosis”, I would highly recommend you to read Dr. Brian Fallon’s work on Neuropsychiatric Manifestations of Lyme Borreliosis (Psychiatr Q, 1992, 63:95-115). [Editorial note: you can view that essay on the lymenet library and it is a great read]
I have been in this Lyme business for over 20 years, and I have seen enough Lyme patients never getting any better. There were many many reasons (political, personal, mis/delay diagnosis, no literate treating physicians, short term insurance coverage…….etc.) contributed to the failures, and I don’t believe anyone can come up with answers or solutions at this time. I’m sure you’ve read a lot of articles and books in finding a solution for your illness, and probably formed some opinions how you should deal with your Lyme. Nevertheless, there are several important things that I would like to bring your attention:
1) Take charge of your own illness
2) Aggressive treatments are very important; most of my Lyme friends had long term antibiotics got over the illness including myself
3) Trust your treating physician (if you can find a good one); the process usually very slow, long and bumpy. Before you feel better, you’ll have many low/worse days
4) Boot up your immune system; any holistic approaches will be helpful
5) Keep a positive attitude ~ always believe you’ll overcome the illness; mental state can be very negative at your not so good days
Hope, I answered some of your questions. Let me know if I can be of further help!
My answer: Thank you for writing to me. 9 and a half years sounds like a very long time to someone who used to avoid antibiotics like the plague, but I have been on them now for 2 months, so that boat sailed in any case. How do you know you are better? 3 months without after 9 years with sounds like such a short time — do you worry about a relapse or anything?
Great questions! Likewise, I was one of the persons never into chemicals (drugs, smoke, pain killers…). The only bad thing I did was one cup of coffee/daily during the weekdays in my adult life. I did worry about the liver damage and other problems, however, after one or two years of antibiotics, my symptoms did not go away. I did have my good days, but my bad days kept recurring. Since I have met hundreds of Lyme patients at work and at the support groups, I realized a very high percentage of the Lyme patients who relapsed due to insufficient antibiotic treatments. In my 9 ½ years infection and antibiotics, I managed to keep a full time job (I did take a two-month sick leave while I was on Rocephin-IV and I used up 4 ½ months of sick leave that I accumulated through the years) and lived a pretty normal life. Nevertheless, I noticed the constant stress to hide my problems (especially short memory deficit – could not conduct a meeting because I did not remember what was said two minutes ago….) in 2003 and 2004 may delay my recovery and I decided to take an early retirement in 2005. After 6 months of not doing anything at home, my health took a giant leap. As such, I returned back to work in March of 2005.
Yes, when your body was doing well, you’ll feel the difference immediately. Attached was a symptom chart, I did check marks everyday for seven years. My table used to be covered with 85% of the marks from 1999 to 2005. Right now, I only have one or two every two weeks! Highly recommend you to use this table; it’ll give you a very clear picture of your illness (good, bad or worse) ~ it also gave me a good justification why I needed the antibiotics (paid by my insurance). FYI, I continued my antibiotics at least 6 months after I became asymptomatic. [editorial note: here is the lyme symptom chart she was referring to. I am trying it out this month and it seems more comprehensive than my previous approach. One big difference is that I fill it out on paper instead of online. I may enter some summary statistics for charting later if needed.]
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