I don't think I'm the only one who thinks that this summer has gone by in the blink of an eye. Depending on where you live, you may even be thinking, "what summer?". In the Pacific NW, the temps have been unusually mild. As much as I love me some sun-soaking, this has been a good thing for my health, because heat is really not good for us Lymies. I've always loved the 70 degree temps, so although I'm bummed that my daughter hasn't had much pool/lake/river time, I'm really not hating it.
Despite the mild weather, this has been a challenging summer for me. I turned 38 last month - THIRTY FREAKING EIGHT?!! How did that happen? Birthdays, for me, just mean another year gone by without getting anywhere with my health. It's depressing as hell. But I try not to think about it too much, because I don't want to dig myself into a hole I can't get out of. Despite some mental and emotional difficulties, most of my challenges this summer have been purely physical.
Just before my birthday was Independence Day. For the first time in years, we stayed home for the entire holiday and for the first time ever, attended the local parade as a family. I wasn't
looking forward to it so much, because I knew it'd be hard on my body. Even though my husband graciously saved us some spots earlier in the day, we still had to walk quite a ways from our car to get there. Hours of standing (some sitting) and taking turns holding our daughter, so she could see the parade over the rude people in front of us who insisted on standing the whole time, was killer. But she had fun and I loved seeing the joy and wonder on her face.
A weekend after my birthday, I had my 20th High School Reunion. I almost didn't go, because I knew it would be so physically demanding. The drive over, the activities, the drive back - all in two short days. Sadly, my family did not get to join me. I actually cried, quite a bit, after I arrived at my parents' house. Not so much because I missed them (which I did) but because I had always looked forward to the day that I could show off my kid(s) at a class reunion. At the 10, everyone met my husband, so naturally the 20 was for my kid. In hindsight, it would have been much more difficult on me to have them there - especially because my daughter is so demanding of my mental and physical strength. She's so damn independent and strong willed, and quite a character, yet when we meet new people her shyness really takes over - so I know I would have had to work extra hard this time around.
The 1st activity of the weekend was a family picnic at the park. I have an anti-gravity chair that I pack with me everywhere I go - it's literally one of the only comfortable things for me to sit in. Unfortunately, it didn't get used. I spent almost the entire time standing, which slowly killed me. But I couldn't bring myself to interrupt a conversation and say, "hold that thought while I go get my chair" and then proceed to sit while everyone else was standing - how awkward is that?! My mom would tell me that I should have done it anyway, and maybe I should have. Because by the end of it, I was practically limping back to the car. And once I got home, I crawled into bed and didn't move for HOURS. I felt SO wiped out! You'd think I had played a game of basketball, or chased my kid around the park all day or something - but no - I was just standing and talking. The pain made sense to me, but I don't normally get that wiped out from such little activity.
Later that evening everyone met at a local brewery owned by one of our classmates. I had resolved that it wasn't in the cards to go because I felt so awful. But then I got to thinking how silly it was to drive all that way for a few hours of time with people I never get to see. So, like much of my life, I pushed through. I thought I would stay for an hour...but an hour turned into three very quickly! I ended up having a blast and was so glad I went, even though I paid for it days later.
Two weeks later I made the same trip to my hometown, this time with my family in tow, for our niece's birthday party. It's always so good to see my family and to have my daughter get the chance to play with her cousins. It was Brynn's first time in a big swimming pool - and actually the first time I had been in one in decades. She also got to experience her first Harvest on the farm with a ride on Grandpa's combine! It was a fun-filled and exhausting weekend. But going from weekends like this, right into the work week is so incredibly exhausting.
Over the course of July, I had a lot of what I like to call "extra" days. With Lyme, every day is difficult, but there are always those EXTRA challenging days sprinkled in. There were a few days where I woke up and felt legitimately tranquilized - like someone shot me with hard core sleepy time drugs, and I woke up sooner than I should have. My pain is always horrible in the mornings when I first wake up, but these days were extra excruciating. I remember one weekend - my husband made me a cup of coffee both mornings, and I couldn't even bring the cup up to my mouth because I hurt so badly. You should know that the first thing I do when I wake up is take my tramadol, and the 2nd thing I do is drink a cup of coffee. So you know it's bad when I'm not downing my cup of Joe. Usually it takes at least 30 minutes of my pain medicine and heating pad therapy to feel like I can move at all - which is why I often wake myself up at 5:30 or 6:00am to make sure this happens before our daughter wakes up. But that week, it took at least 90 minutes. I can't even begin to explain how hard this is with a rambunctious toddler who wants nothing more than to jump on me like I'm a jungle gym first thing in the morning.
I've had a lot of days with flu-like symptoms...sweating like crazy, stomach aches and nausea, zero energy etc. Lethargy has been a daily thing; it's probably worse than it's ever been. And like always, my body realizes when the weekends hit because it gets way worse once Saturday rolls around. It's almost like when your body gets amped up from adrenaline during a trying time - it knows you need the extra energy and strength - but then when it wears off, you're done for. My body knows I need to get through the work week, but once it's over, I can hardly move.
One day, to prepare for a Golf Tournament I was planning, I went to the dollar store to buy some last minute water bottles. I had to spend 2 hours combing the store for identical products that were spread out all over the place. Bending down, filling a cart and two large boxes full of 140 water bottles, lugging it all up to the cash register, unpacking it for the scanner, repacking back in the boxes, then to my car. For a normal person, it would have been tiring. For me, it was body breaking. I felt like I do after a day-long event on my feet...pain and exhaustion beyond belief! This kind of activity would normally really wear me out and intensify my pain, but I could tell that everything was majorly magnified - for some reason every symptom I've been experiencing has been heightened times 10.
I've also noticed that my chemical sensitivities are much more extreme lately. Any little whiff of something toxic, even from "afar" - whether it's a truck's exhaust, cigarette smoke, perfume or cleaning products, makes me much more sick than it normally does. Horrible headaches, sinus congestion and pain, increased body/joint pain, stomach aches etc. The other day I used a sharpie for a few minutes and felt so horrible! I've been very sensitive to these things for years, but I can tell my sensitivities are majorly intensified now.
There have been a lot of variables going on. The day after my birthday, I started an Elimination Diet. I've done this a handful of times before but have never been able to get clear cut results. Normally when people start cutting out bad food, they start to feel better. It may take several days, but typically after a little time, people start to see improvements in their energy, sleep, skin, weight etc. But two full weeks in, and I felt worse than ever. It's very possibly that my body was detoxing in a major way.
The day OF my birthday, I took an injection of a therapy I've been trying with my Lyme doctor. It involves a super diluted amount of a certain antigen that seems to be causing inflammation in the body, in hopes that we are retraining the immune system for future exposures. With chronic illness, there is a lot of immune dysregulation going on to various allergens and exposures, and this therapy is supposed to help improve that dysregulation. The hard part is that there are many ways to adjust the dose in order to figure out which dilution is effective for your body - every person is different. So, there is a trial period which takes a lot of time (often months to a year) in order to find the sweet spot where benefits can be seen. If the dose is too strong, then it can cause worsening symptoms. If the dose is close to the target dose, then that is when symptoms start to improve, even though that may only last a few days and then go away.
After the last dose I had taken, I noticed a minuscule improvement in my pain - so both the doctor and I figured we were getting close to finding the target dose. What I didn't know until recently, is that the number variance between one dose to the next is huge. The dose that I had previously taken was 16C, so I thought 15C wouldn't be much different, but it turns out that it's 100 times stronger! So it's a very good chance that a lot of what I had been experiencing for the better part of July was a flare from this therapy.
Now that that's over (for now) things aren't quite as extreme. I'm still in the reintroduction phase of my Elimination Diet, which has been difficult because foods I'm adding back in are obviously making me feel worse - which happens just about every other day, sometimes more often. Lethargy is still a major factory - I just can't seem to shake it no matter what I do. I'm still only able to do one activity a day, if that. Two weekends ago, we went to the park for a birthday party - and two hours of that are all it took to completely wipe me out for the entire rest of the weekend. It's frustrating, and tiring.
Of course, sometimes I push myself way past my limit to be able to "live" rather than "survive". This last weekend, my sister's family came into town, and I wanted so badly to be included in all activities. Within 24 hours, we went to the local market, to a park, out to dinner, and hiked our local waterfall trail. I could tell it was going to be tough from the very first activity - just a few minutes of sitting on the picnic benches at the market to eat our lunch had me (silently) screaming in pain. Somehow I was able to walk up and down the market aisles (sometimes carrying my 2.5 year old, or squatting to wash her face from her chocolate treat, or keeping her from touching things she shouldn't - you get the picture) and then play at the park with the kids (mostly standing) right after. Normally, I'm not even able to do ONE of these activities in a weekend, so you can imagine how exhausted I was by Sunday night (just in time for the work week to start again!)
Needless to say, I'm ready for Fall in more ways than one. I have another appointment with my Lyme doctor next week, and I'm looking forward to seeing him. He has recently notified me of a new, groundbreaking therapy that he thinks I may respond to, where people are seeing results in 4-6 weeks time. I'm praying so hard that this is the answer for me. We've also made another huge discovery that I will talk more about in my next post.
