I just happened to find this drafted blog in my account that was written literally right before the world fell apart from Covid. Not many fun pictures to go with it, but thought I'd post anyway! :)
WRITTEN IN FEBRUARY 2020:
A couple of weeks ago, I attended an event planner training seminar in Seattle. A few days before going, I was expressing my apprehensions about the trip to some of my coworkers. One of them admitted that she would have never thought about these concerns in relation to my illness.
That conversation reminded me that although healthy people may recognize taking their well-being for granted, they may not realize that it could include the simplest of things in their every day life.
You may have heard the "spoon theory" - I think I've blogged about it in the early days. In short, it explains the idea of limited energy a chronic sufferer has - that each day starts with a number of spoons, and that every activity of our day takes a spoon (or more) away. One day, you may use them all up by the end of the morning, other days you may have one or two left to, say, cook dinner at night.
I knew this trip was going to take a lot of spoons. First of all, mornings are VERY tough for me - every single day, I wake up in so much pain I can hardly move. I have to set my alarm an extra hour earlier than I normally would, to ensure enough time for resting on my heating pad and letting the pain meds do their thing. Since I would have had to leave my house by 5:30, that meant waking up around 3:30am. Knowing that I often don't even get to sleep until then was giving me major anxiety!
Then there is the drive itself. Aside from the fact that I would likely be driving very tired, being in the car is tougher than you would imagine, particularly when I'm behind the wheel. And when it comes to driving on the busy interstate, where there is often a lot of stop and go, along with the stress of negligent drivers all around, my pain often skyrockets. The worst part is that my muscles fatigue extremely easily. Even if I'm not constantly switching between gas and break, my foot usually cramps up and tires to the point that I need to pull over for a break.
Another thing I've been dealing with lately is equilibrium problems, which is exasperated by movement. Within a minute of being in the car, my dizziness and nausea sets in. Sometimes it lasts a few hours, other times it lasts a few days.
Then there's the parking, where on this congested side of the state, I can't always rely on finding a handicap space. It actually amazes me how few there are at certain places. The possibility (especially in Seattle) that I would need to walk to my destination is quite high.
If you're a loyal subscriber, you know that I often don't go out to eat at restaurants simply because the seating is almost always so unbearable for my pain. So the thought of sitting in a conference for 5 hours, on top of the drive th
ere and back, had me more apprehensive than anything!
The day before the event, I was telling a friend my concerns, and she suggested staying in a hotel room (umm...why didn't I
think of that?!). So I made some very last minute arrangements to make it happen, which alleviated a lot of my stress!
The drive was still stressful - my foot cramped up 20 minutes into my journey, I had a really hard time seeing in the dark, and cars were flying by me on both sides, going 80-90mph. But it was so nice to separate that from my long day ahead!
Of course, hotels present a whole new challenge in and of themselves. Because I already have such sleep challenges in the comfort of my own home, I can always expect that a change in environment will be detrimental to my sleep. I'm extremely sensitive to noises - I sleep with earplugs, a sound machine AND a fan at home. And not only did they place me right next to the ice machine that banged out cubes all night, the consistent sirens downtown (or on the freeway right behind?) resulted in very little shut-eye. So although I was so thankful to wake up right across the street from the event venue, I was dragging all day despite sitting myself next to the coffee cart during the seminar!
Often times, I also have to worry about chemical sensitives in new places - the slightest perfume in things you wouldn't think about - like laundry detergent that lingers on sheets - can set my senses into overdrive, causing symptoms like intense headaches, sinus congestion, stomach discomfort, and increased pain levels in my whole body. This time, I got lucky!
I think, with my particular illness, most people really have no idea what I go through every single day. I talk a lot about my pain because that's my worst symptom, but not very often about the little things. So this may be a bit mundane, but I think it's important when educating, to highlight all facets of the disease.
You already hear how my mornings go. My three year old consistently wakes up around 6:30 (earlier if we get her to bed too late). She has always been an early riser; maybe twice in her lifetime has she slept past 7:30. Thus, I set my alarm for 6, so I can have a cup of coffee and a short rest before the mayhem begins. ;) That may not seem early to many of you - but when you have sleep challenges like I do (often not falling asleep until 3am), it's very rough.
Often, this is not enough time for my pain to dissipate, so getting her ready for daycare (and dealing with the temper tantrums and constant defiance of late) is extremely tough on me. Going back to the spoon theory - some days I feel like half of them are gone before her and my husband are even out the door! It also means that by the time I get myself ready and walk into work, I'm already extremely exhausted.
My job is extremely stressful - mostly mentally, but some times physically as well. I feel like I'm constantly trying to keep my head above water. That alone, majorly affects my health. I've talked about event days before, and how tough they are - but this post is to reflect a "normal" day, which most of the time is simply sitting in my office at my computer. I don't take breaks - just enough time to use the restroom or make a quick bite to eat - sometimes to chat for a few minutes with a coworker; I just don't have time.
So eight hours of sitting at my desk seems easy, but it's not. By the time 2 or 3pm rolls around, I'm in a severe amount of back and lower body pain. My office is on the 2nd floor, and stairs are almost always difficult for me, whether it's lack of energy, joint pain, all-over body pain, or all of the above. Usually, if I need to go downstairs for something, I plan my day around it - either by lumping everything together that I need down there at once, or doing whatever it is on my way into our out of the office.
Aside from my pain and stress, there are two other things that are really challenging for me. The first is temperature. I get hot easily, and when this happens, I get very sick - to the point that I feel like I'm going to throw up. I think they say that one of the biggest contentions in office spaces is the thermostat. I find that usually, either people like it really warm or really cool. For some reason, the location of my office makes it the warmest one there. It's an HVAC issue, and also the sun shining in. So many days I either have my window open, or my fan going, or both. But summer days are ROUGH, really rough.
The other challenge is my chemical sensitivity - and this is any chemical. I'm extremely sensitive to smoke - so when a coworker takes a smoke break and sits in the same room as I, or even leaves a wafting trail in the hallway, I immediately come down with the same symptoms as listed above from the laundry detergent. I have a lot of committee meetings etc. where I am subjected to all kinds of women's perfumes - and those are almost worse than the cigarette smoke. Cleaning agents are awful too...even if someone uses cleaner for their whiteboard down on the first floor, it makes me sick. And I'm not just talking about a little headache that goes away immediately either. Usually, my sinuses are inflamed, and my whole body throbs in pain for the rest of the day. Depending on how strong, and how long I was exposed, sometimes the symptoms even last into the next day.
The other day, my husband was mowing the lawn and my daughter left the sliding door open. The fumes that wafted into our house immediately affected me. My whole body went slack, as though I was about to pass out. My head throbbed for the next hour, nausea and stomach pain set in, and I was so weak I could hardly walk.
There are other "little things" that go unnoticed to anyone else. I have some cognitive issues - though I will say that I'm lucky enough to not have the disease affect me as much in the neurological spectrum as other Lyme sufferers do. How it affects me most, is with my memory. I actually plan to focus on that issue in one of my next blogs, so I won't get too into it, but it's a subtle thing for me - mostly in that I often blank out on words. I know everyone spaces every now and then, but this is a little different. Sometimes, even the simplest words that I know, say "comprehend" - escape my mind. If anyone had pregnancy brain you can maybe relate. It's often right on the tip of my brain, but I can't access it for the life of me. Sadly, I also have a lot of long-term memory loss. There are large chunks of my life that I just can't recall for the life of me. But more about that later!
For someone who really excelled in school, it's difficult for me to accept. I often feel like an idiot. I have to pass up doing things like radio interviews for an event, because I'm afraid of a brain slip. This happens in most of my day-to-day conversations...though I'm honestly not sure if people notice or not. Some days are better than others. It can also make confrontations more challenging. When I can't find the words to express my thoughts - my emotions tend to take over instead. And if we're dealing with something that happened in the past, my lack of memory with details doesn't do me any favors. Add to that, the behavior issues that can stem from the co-infections...it really is like I don't have control over my own body, and people just don't understand that.
Back to the end of my normal work day, where my back/leg/hip pain is so deep that I can feel it in my bones. As hard as it is to sit all day, it's equally as difficult to stand for longer than a few minutes at a time. The bottoms of my feet ache as though I've been standing on concrete all day long. By the end of the day, my lower legs are usually twice their size, and feel so water logged and stretched that it hurts (again, like pregnancy!). The back of my legs, from my hips down to my feet, feel like a rubber band about to snap. The longer I stand, the tighter it gets. So when I'm stuck in the middle of a conversation on my feet, people in my everyday life have no idea how much excruciating pain I'm in. I try to sit when I can, but sometimes there are just no chairs around.
My drive home is always extremely painful. I really need a car with heated seats at least! I often skip getting the mail because climbing in and out of the car is too much for me. Once I'm home, I'm usually able to sit on my heating pad for a few minutes before I start dinner - depending on my child's demands. ;)
With the new peptide treatment I'm on, there are some days that a small rest is enough to grant me an extra 20 minutes of time to feel good enough for cooking. Of course, most of our meals take at least twice that amount of time. Whether it's a good or bad day, I still have to power through, and by the time I'm sitting down to eat, I'm always way past my limit. My muscle fatigue has gotten a lot worse over the last year, as well. When I'm chopping root vegetables, I often have to take breaks before I can continue or ask my husband for help. Damn carrots!
We finally got an actual dining table last year, because I'm the kind of person that wants to have family dinners around the table, not the TV - just like I did growing up. Unfortunately, there isn't a single dining chair in the world that I've found comfortable enough to sit on throughout an entire meal. So, we resort to the couch where I can sit against my pillow and heating pad.
It's almost comical that my daughter has long called the lounge corner of the couch "mommy's spot". It's sad, but true, that once dinner is done, that's where I spend the majority of my night, and most of my weekend time.
Of course, sprinkled into my day is all my medicine that I have to take. My current protocol isn't as heavy as it has been in the past. But there are still pills I have to take with food, pills I have to take away from each other (or from food), pills I have to take just in the morning or just at night - it can definitely make the day more complicated and overwhelming. Now I have my peptide injections on top of that - again - some in the morning, some at night, some every day and some certain days of the week.
I should also be complicating my life with dietary restrictions, like I've done for so many years...but I just haven't been able to get there again, full boar, since having my daughter. I think it's because I'm just too perpetually exhausted. If I had someone to plan my meals, do my shopping, and cook for me - 100% I could totally do it. I just don't have it in me right now on top of everything else. It sucks, because I know it would help me feel better.
The last part of my day can often times be the most challenging of all - bedtime. I've had chronic insomnia for probably 15 years, and I honestly don't remember the last time I had a rested night of sleep. Sometimes I don't fall asleep until 3 or 4am, occasionally I end up pulling all-nighters, and I also wake up all through the night. I started a peptide for sleep a few months ago - and on top of my large handful of pills - had actually been able to get anywhere from 6 to 8 hours of sleep, only waking a handful of times. Although I still wasn't feeling rested, it was so nice not having the feeling of dread when bedtime came around. Unfortunately, like everything else, my body has become used to it and it stopped working. For the last 3 weeks I haven't had more than 5 hours of sleep in a night, and have been waking up every single hour.
The other challenge is my comfort, or lack thereof. I sleep with three pillows surrounding my body and a heating pad. Every time I wake up, I have to flip over or adjust, because my body is in so much pain. That involves moving my heating pad from one side to the other, turning it back on - and often flipping my head pillow because it's gotten too warm. Sometimes, by the time I'm done doing all that, I'm wide awake again.
There are a lot of other things I could talk about. Like the loneliness of the disease - which I really do deal with every day. There isn't a single person in my every day life who really understands what I'm going through - and that is lonely as hell. Over the course of my illness, I've learned to classify people into one of three groups.
1. The people who don't want to hear it. This is probably 80% of the world. There are a few who are just plain tired of listening about my struggles (my husband and probably some people on social media who think the world should be all rainbows and butterflies) or the ones who are too uncomfortable to talk about it. When I mention Lyme, they almost pretend like they didn't hear me. It's weird. And awkward, uncomfortable, frustrating, and HURTFUL as HELL. I have coworkers and friends, and people I don't know, in this category.
2. The people who think they know, but they don't. The "I had a sister who had Lymes disease" - for one, they are saying it wrong, and two, either they really did "have it" (past tense) and treated it early enough to where they have no idea what the chronic condition is like, or two, they just have no idea what they are talking about. I went to the dentist the other day - where the hygienist looked at my chart and happily said, "well it looks like you're relatively healthy!" when Lyme Disease was listed at the top of the page. When I told her that wasn't the case and that I have Lyme, she stated, "well, I guess that's just part of being a human!" Umm....what???! So clueless. I also put all the people (most doctors), who are adamant that Lyme doesn't exist, in this category.
3. The people who know they don't fully understand, but are really trying to - and are as sympathetic as they can be in the situation. This is a small percentage of people - pretty much my family and close friends.
It's gotten to the point that the only time I express my true feelings is when I blog. Because even on the rare occasion that someone actually opens up to me about my disease, it's getting harder to talk about. Think of how hard it is to explain something to someone, when you know they will never fully understand. It's fruitless, and eventually, you'll want to give up - right? That's how I feel.
I've seen a few times on Facebook lately, a post that talks about "facing it until you make it" rather than "faking it". In my position, I think that both of those things are true. Obviously, I face it - because I have no choice. But if you ask anyone who sees me every day if they could tell that I was dealing with all of the things I wrote about in this post, I'm betting they would all tell you "no". Some days, I think I can't help but show on my face my pain, anguish, despair etc...but for the most part - I press on as though nothing were wrong, because it's just easier that way. Still, I think it's important for people to remember what someone with a chronic illness is going through each day. That if they aren't smiling when you think they should be, there is probably a reason. And really - that goes for everyone, not just those of us who are ill.
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