Over the course of this summer, there is something I've realized. It's been a long time since I've experienced a true excitement for life. I know what some of you are thinking, because I hear it all the time - you have a lot to be happy about, grateful for, excited about. I know I do, and I'm not discounting how blessed I am in so many ways. And maybe I'm wording this wrong, because it's not that I don't get excited about things anymore. I just can't help but notice that there is something missing inside of me that used to be there. A true, genuine joy that I remember having once upon a time.
My favorite thing in life is to spend time with my husband and my family. What gets me through lonely life on the west side, is knowing things like, "in one month I'll get to see my family again". It's a rare occasion anymore that all of the sibling's schedules allow for us to get together all at once, but we got to do it for the 4th of July this year. I was definitely excited. But overpowering that feeling of elation was a lot of anxiety, and even a hint of dread.
Because in the back of my mind, I'm thinking about all the things that are going to be hard on my body. First, the long distance driving. (If you've watched the movie, "Cake" with Jennifer Aniston and see how car rides are for her, that can be pretty accurate for me). Then the sleeping arrangements; I'm in pain in my own bed, so the thought of having to acclimate to another bed is frightful. There's holding the baby - but no amount of pain is going to prevent me from doing that!! Going out to dinner - sitting in a restaurant is one of the most excrutiating things there is, because there is no chair or bench or booth that will not put me in extreme pain. In fact, I had to leave dinner early the night we went out.
There's the stomach aches, dizziness, nausea - sometimes because I give in to eating what everyone else is - but often times it happens just because. And then there is the lethargy. I have so many days that I can barely move, and it usually comes on the weekends because I think my body knows it has to power through the week for work (although lately even the weekdays have been bad). This year, it was 105 degrees with no real A/C and 9 of us plus 2 kids crammed into a dinky cabin. The heat is bad, bad, bad for us Lymies too, but there was no escaping it!
All of that said, I still had a wonderful time with my family and loved every minute of it. But in the back of my mind, I remember how times like this used to feel. How I used to be able to enjoy each day, without all of these horrible things overpowering me. Without going through my day wondering if I'll have to miss out on the next activity because of the way I feel. Or constantly having to determine whether the next thing I do is worth doing, knowing how I'll feel after.
Last weekend we went to a Mariners game with two of our good friends. I was elated to hang out with them for the weekend, and looking forward to the baseball experience, but also super nervous about what my disease had in store for me. The day our friends arrived, I had gone out to lunch with my coworkers to celebrate my birthday. I was careful to select a gluten free meal, but the lethargy crept in anyway; all I wanted to do when I got home was crawl in bed. So I took a 5 hour energy (ok, I really took two). Not only did it not really help, I was awake until 3am. This constant domino effect of sleeplessness and sleepiness is very typical, but always seems to be the worst when I have something I need energy for!
On game day, by the time we got out of the car and walked to the stadium I was already in tons of pain. I brought my trusty back cushion that goes with me everywhere, but the pain from those bucket seats was agonizing. I was having so much fun, but also kept thinking, "we're only in inning 5??!".
And then there was the environmental factors. The noise sensitivity with this disease is unreal. And those damn Blue Jays' fans would not shut up! Ha. Also, I have had this horrible sinus issue for two years that no doctor has been able to help me with. I'm guessing it's Lyme and mold related. It's getting worse with time and makes me extremely sensitive to smells. I imagine this is what it's like to be pregnant - that certain food smells make me want to hurl. But the worst is the cigarette smoke. I can be blocks away from it, and immediately get a sore throat and headache. My congestion gets worse and can last that way for days. Even if I'm driving by someone that's smoking from their car on the freeway, my windows up, it affects me like that, it's crazy and horrible! So obviously there was a lot of that on game day. I definitely had a blast and part of me didn't want it to end, but the rest of me was glad when it was over.
I push myself to do things socially every now and then, for several reasons. Sometimes it's for other people. I feel horrible that my husband has to suffer through this disease with me, and miss out on life experiences, because of my limitations. I also don't want to be that person who is always saying, "no" even though I know most people in my life understand why I'm not participating. Other times, it's purely for me. I will push past my limits, just to taste that sense of normalcy again, even if only for a moment, and even if it means I'll pay for it later. I also do it to avoid the haunting lows of depression. I've been there many times throughout the last 8 years, and I know it gets worse the longer I stay at home on the couch in pain and exhaustion, so sometimes I force myself to do things even when I don't feel like it. There is nothing worse than dealing with my symptoms and then depression on top of it.
Last month, a friend and I went to a "corks and canvas" type event. I had only done this once before, but found it so theraputic and fun, that I really wanted to try it again. I didn't get to drink wine since it makes me so sick now, but I did get to try my hand at a little Van Gogh. It was a blast, but tough as hell. I was in so much pain from sitting on a stool for a few hours, that I thought I was going to throw up!
This weekend the hubby and I drove down to Oregon to help my sister and brother in law move. I got to take care of my 1 year old niece, while everyone else did the hard work of moving. It definitely put things into perspective for me because as much as I'm dying to have a baby, the pain and exhaustion from just one day of watching her (mixed in with a little moving help) was unbelievable. Lately my lethargy has been especially bad too, and I had only been running on 8 hours of sleep over the last two days, so that certainly didn't help either. Isn't she the cutest though?! Totally worth the suffering.
We had made plans to go out for drinks with some friends who I hadn't seen in ages - and as horrible as I was feeling, I was so excited to catch up, that I just had to go. It was a blast and I'm so glad I did. I am finding myself forgetting words and feeling my mind going blank a lot more often these days, which was super frustrating and embarrasing. We ended up standing outside of the bar a few hours after closing, but lately standing has been even worse than sitting for me, so while I didn't want it to end, I don't think I would've lasted much longer.
By the time we left to go, I could barely bend over to pick up my purse and had a really hard time walking to the car. I can't even explain the pain and stiffness, in my legs especially, but my limitations from such easy things are really starting to get scary because it's getting much worse. Today I'm home sick and feel like I've been hit by a bus, twice over. My body hasn't hurt this much in a long time, my stomach and my head are killing me, and I'm so tired I can barely walk from the bed to the couch. All from a short weekend trip of doing normal things.
Later on this month, my little bro, who's not so little anymore, is turning 30 this month and we are renting a cabin on the lake with a bunch of his friends. I'm looking forward to celebrating with him and everyone else. But I have the same worries as usual, maybe even more. It brings me back to my own 30th, when we also rented a cabin, and I ended up spending a lot of my time puking in the bathroom. I know you all think it was from drinking, and I actually wish that had been the case! But it was back when my stomach issues were at their very worst. I know I won't be able to keep up with everyone this time around either, and that's fine. But I'm thinking about how lately all I've wanted to do at the end of my work day (of mostly just sitting) is crash on the couch because I'm so exhausted and in so much pain. So not only will I not be able to keep up, but the inevitable lack of quiet and comfort gives me a lot of anxiety. Maybe I can find a place with a little guest house on the side?! :)
I'm not writing this post to make anyone feel sorry for me. It's not even meant to be a complaint session. I'm writing this to let others know how difficult every day tasks can be for those with Lyme. That the simple act of getting out of bed each day is a challenge, let alone any of the other tasks or activities that we face all day long Lyme is physically and mentally draining every single day, but I also want to remind people that each day can be quite different for us. That we can't commit to much of anything anymore, because it's not just that we don't know how we will feel that day, it's that we don't know how we will feel in any given moment.
I also don't want anyone who is reading this to think that I'm not thrilled to hang out with you, or that I don't love certain parts of my life. Because I am, and I do. But I remember what it was like to really look forward to an event, a holiday, a celebration, or even just the little things like going out to eat or going to the movies. To be excited, without the anxiety and the dread. This disease is literally sucking the joy right out of me, and I don't know how to stop it. I'm still very grateful for the things I CAN do, because I know so many others aren't as fortunate. I'm also thankful that I know what I'm missing, because I was lucky enough to experience the pure joy I'm remembering for many years of my life.
I'm now 10 weeks away from my treatment in Idaho and have been so blessed by people in my life that are helping me reach my financial goal to make it happen. I'm really hoping it gets me one step closer to remission, and that one day I will be able to experience the true joy in life that I once had. And that next summer, when I tell someone how excited I am for the weekend or for an activity, that I will feel that way wholeheartedly, without being more concerned about how I'm going to make it through.
