Tuesday, May 31, 2011

A Day in the Life of Chronic Lyme Disease

In honor of Lyme Disease Awareness Month, I would like to help shed some light on Lyme disease by showing what a typical day living with chronic Lyme disease looks like. For each and every person with Lyme disease, their day looks entirely different than another person with Lyme. There are many varying degrees of disability and any and all combinations of symptoms among those of us with Lyme disease.

Click here to go to A Day in the life of Lyme disease with Heather.

A Day in the life of Lyme disease with Alyson**
My day starts at 7:45 AM--that's the absolute latest I can sleep in before my husband has to leave for work--and now it's my job to take over getting my 7 year old ready to catch the bus. I rarely sleep well at night and I have great difficulty waking up. If I'm in a lot of pain, my kind hubby will bring me breakfast in bed to minimize my trips downstairs.

Going up and down the steps is painful and uses up a lot of energy. There have been times when I have to crawl or scoot up or down the steps. There have been times when I've had to be piggy backed. Even worse are the times when I've been too exhausted for a piggy back and have had to be carried like a baby.

After I get up, it's time to gauge my current energy level in order to figure out what I can do as far as getting my son ready for school. My husband always packs our son's lunch, because I'm usually too exhausted or too forgetful to do it. Usually, I can walk the 200 feet there and back to the bus stop, but sometimes I can only sit on the porch and watch my son get on the bus--knowing that all too soon there will come the day when he's too big to have his mommy come to the bus stop. Because my memory is shot, my son often ends up without his lunch (Mr. Picky will have to settle for hot lunch), and a handful of times, I've managed to send him off without his backpack.

After the bus comes, if I'm feeling strong enough, my three year old and I will take a very small walk around the block to help keep my muscles from atrophying since I have to spend so much time in bed. We come home and I think about all the things we will need (drinks, snacks, etc.) and we trudge upstairs for as long as he will stay up there. I prefer to be upstairs because the bathroom and my bedroom are upstairs.

After we go upstairs, I put on a movie for my son and get in a hot epsom salt bath. I stay in my clawfoot tub for as long as my son will sit still and watch his movie (he's very active, so not usually long). One day a week, he has a play-date with Grandma for a few hours so that I can rest. A few days a week, he goes to a relative's house from about 9 AM til 2 PM. Once or twice a week, we have a babysitter that comes to our house so I can rest as needed, but still be able to spend time with my son. This babysitter cleans our pigsty-of-a-house and usually cooks up a big batch of chili or soup that I can eat for the week for lunch.

Because I can't keep weight on, I'm always hungry, so after my son goes off for the day, I usually heat up some leftovers and settle myself in with a movie and 2nd breakfast. Sometimes I get back in the tub again for a longer soak and if my muscle pain is bad, I'll add in peppermint and eucalyptus oil. I take my morning medicine, check to see if I need to call anything in to the pharmacy, and rest, rest, rest.

Around 2:00, my wild three year old comes home and I have approximately four hours to make it until my husband will be home from work. The battle is on: Alyson vs. Lyme disease vs. Motherhood. It's a close race and Lyme disease doesn't play by the rules.

3:45 P.M., my 7 year old is home from school. Although lately he's been very moody, he is generally a very easy child (unlike his brother!!)-- he's a bookworm, he's good at entertaining himself, and he's always content to go outside and play with friends until we call him to come home.

6:00 P.M. Husband is home! Phew! I made it, but usually just barely. I feel so guilty doing the absolute bare minimum required to take care of my children. I hate putting them in front of so many movies, but I remind myself that it's only temporary. I will get better....right?

Hubby is home and back I crawl into my bed. I rest, feeling guilty thinking of my exhausted Houdini of a husband downstairs--who has just worked a very, very long day--scrambling to make dinner for two picky kids and a wife with a very restricted diet, while at the same time trying to occupy a very naughty/hyper/cooped up three year old.

Dinnertime! I can usually sit at the table so we can have a meal together as a family. Then, back I go to my bed. I listen, sometimes teary eyed, as my bone-tired hubby gets the grumpy three year old ready for bed. My job is to read him his bedtime story. Sometimes I muster up the strength to play a game with my 7 year old, even though I'm unbelievably exhausted and in a lot of pain. I'm missing out on so much and my heart breaks each and every day....

8:30, both kids are now in bed. I'm desperate for some time with my husband, but my dear, overworked husband is desperate for sleep! There is never time to clean up the house. I take my nightly meds and pray for sleep. My husband falls asleep easily, and I listen to his soft breathing, while I toss and turn trying not to think about how I will make it through another day like this. I try to stop looking at the clock around midnight...

It's a hard life, but it's all I've got right now. It's very difficult to show others just how bad it is. I do have some good days here and there, and some days I even have energy enough to get out of the house for a short trip-- generally to my favorite place on earth: the barn! Occasionally I will bump into people when I go out for dinner or to the bookstore, and it strikes me that they have absolutely no idea just how bad things are. They see me out and about, and since I don't look sick, they have no idea what life with Lyme disease is like. Well, friends, this is it. It's not very pretty, but like I said, it's all I've got right now.

**I wrote this a while ago, and I'm now doing much better now. My typical day no longer looks like this. However, since this was my normal for well over a year, I wanted to show the world what it looked like. Though I can function again now, the odds are very high that I will relapse again (not to be negative; chronic Lyme is just very unpredictable).

***If any of my Lyme friends want to join in on this post, send me a link to your blog entry and I will add it.


  1. So glad you are doing better than what your story tells...those days are hard to cope with I know. Wishing you better and better days ahead alyson and more time in the barn...God bless.

  2. Thank you for being so open and honest! I can't imagine how difficult this must be. I have terrible energy issues where it is difficult to get across the room, let alone care for my kids all day, but I have been lucky so far not to have the pain. I pray that you do not relapse! Thinking of you.

  3. Keep on going!