I finally leave the house with 3 errands to run, my weekly blood work to check my liver functions because of the IV medication I’m on, the post office to mail more disability paperwork, and the grocery store for a handful of things.
Within minutes of leaving the house the heart palpitations begin. I thought it might be anxiety (the weather was awful, traffic was a mess, just that kind of day), but as has been over the past few weeks this has developed, anti-anxiety medication did not help. At 4pm I took 3 additional pain relievers as well as an anti-anxiety medication. (Now at 35 pills so far today.)
I returned home after an hour out and my body was doing what I call “screaming” in pain. My lower and middle back were in spasms and taking my breath away with the unexpected shooting pains. The pain would radiate into my thighs, where my nerve pain had jumped to a 6-7 on the pain scale. The nerve pain was in my upper arms, and seemed to connect to the joint pain I was experiencing in my shoulders. While sitting in the parking lot at the store I realized how one pain morphed into another, to ensure pain literally from head to toe. (People use this expression often, but very few have truly experienced it.) The joint pain in my shoulders turned into nerve pain in my arms which turned in to joint pain in my wrists which ended with numbness in my fingers.
To add to all this fun that an hour out of the house caused, I began to have my murderous hot flashes. I call them murderous because I now believe menopausal women should be allowed to kill during hot flashes.
My stomach soured at the same time. By this time, I’ve now taken 35 pills, as well as powders and liquids. This was all followed after 2 grams of IV antibiotics delivered through my PICC line last night. It was that time of the day when my stomach would screech HALT!!!! And everything does…well not quite everything, but everything you’re doing halts as you begin what I refer to as the “make it or break it run”, meaning will you make it to the bathroom in time? Or will you not make it in time, thus breaking the record of how many consecutive days one has gone without pooping themselves.
Luckily today was a make it day.
It’s now 4:30, I just want to lay down. But I set a strict plan for myself today in order to accomplish all I needed to. What I didn’t account for, was the ebb and tide of my daily symptoms, and how I have about as much foresight into how I will feel one minute to the next as I have knowledge about cellos.
I look at my plans for the next few hours and cringe as I look at each thing. The one thing I know I must do is take a shower (something I can’t do often, and I haven’t been able to take a “real” shower in 10 months), and then change my dressing.
I somehow putz around for an hour or so, filling out some more disability related paperwork, answered some emails, make some calls. The whole time just wanting to get comfy and cozy in my bed and go to sleep. The fatigue had washed over me in a matter of minutes. To the point that just getting up out of bed seemed like a chore I could not do on my own. This is how I described it in my symptom journal: “It’s only 4:30, the next 6 hours seem impossible to pull off. I just want to sleep. But I can’t, nor should I if I want to sleep tonight. But naps are hard to come by, and lying in bed with nothing to occupy my mind can be dangerous, and leads to feeling “uneasy”. I feel guilty to just watch TV or read when I’m not sure I even have the energy to put into doing those things.”
Somehow I get what I guess would be my 4th or 5th wind of the day, and drag myself into the shower. There I spend 20 minutes struggling to wash every part of my body I can reach with just one hand, and the other hand sticking up in the air the whole time. For someone with balance issues and problems with dizziness, the twirling in the shower like a ballerina does not help. By the time I get out, dry myself off, unwrap my protected arm and get half dressed, I am drenched in sweat, having trouble breathing, with my heart palpitations back and in full force.
From there Mom joins the fun and we prepare to change the dressing on my arm, our weekly ritual of bonding. Because my insurance company refuses to pay for the treatment I need, we cannot afford nursing care to go along with the IV, so we do it ourselves in order to be able to afford the actual medication.
When I began today and began writing about the day, it was enjoyable. I was having fun. I was excited about my project. In this 3 hour period everything turned around. Starting at 3pm with the first round of palpitations until 6pm when I collapsed on my bed after my shower, almost shaking from the exertion it took to take the shower.
The excitement about my project has turned into annoyance at my responsibility. Once everything in my body changed, my mind changed with it. Maybe this will help some people to understand how those of us with Lyme disease can go from one personality to a different one in a matter of minutes. It’s because our bodies can change from one body to a different one in a matter of minutes. This is just the physical aspect of it. The fear of wondering hour to hour which person you’re going to be, and in which body that person will be can be daunting. I’ve written a lot about Lyme induced social retardation. This is one of those reasons. It is very scary to say to someone “yes, I can do that with you on this day and at this time”, because we really don’t know which “person” we are going to be then.
Think about that for a while, it will help you understand the people in your life who face any form of chronic or invisible illness. We need the people in our lives to understand it can be just as scary for us as it is for you.
Now its 6pm, it’s dark out and time to start the night. Let’s see where the next 3 hours will take us!
To be taken to all 5 segments of my “Day In Life Of Lyme” visit http://lymebites.com/blog/category/day-in-life-of-lyme/. This is the 3rd part, the next 2 will be posted during the rest of the day.