The fun stuff: I've been planning my wedding. It's less than 6 weeks away. Am I prepared? Of course not. I'm not magically healed and functioning like a normal person. I've done what I've been able to do and planned what I can, and the rest will get done well enough. I don't have too much anxiety about it though. I'm actually just looking forward to a very happy day.
I am concerned about my stamina on such a long day like a wedding. It's difficult to be "on" all day, when your body feels so "off." It actually makes me quite emotional to have to fake it for too long at a time. But I'm doing all I can do to prepare, like plenty of rest and enough exercise, trying to build up my endurance. I'll also just have to get lucky and have a "good day" that day, plus schedule a lot of breaks during the day, which is not quite typical for a bride, but what I'll need to do.
Onto the next:
SYMPTOMS
Of course, I look back, and I'm so happy for all progress I've made. But I still tend to disappoint myself with my limitations and my remaining symptoms.
Headache--Migraines occur an average of 2-3 days per week. The tryptans help, but only at the higher dose, which makes me drowsy.
My constant headache is still present. It worsens throughout the day. I believe it may be a tension headache due to muscle atrophy and spasm in my neck and shoulders. I try to make it to the massage therapist. I also exercise at the gym now and am really trying to strengthen everything. My head feels heavy, but after wearing a collar for so long, I'm sure those muscles are very weak. It's a slow rebuilding process to try to decrease the tension headaches. (I've never found a physical therapist that was capable of treating me in any useful way, due to the complications related to all of my conditions, so I just manage as best as I can.)
Fatigue--sucks. But I've been working really hard to fight it. Exercise helps (I joined the gym again.) Just getting dressed most days, doing activities around the house, and trying to get out of the house helps build up your stamina, when you don't overdo it. That line is so easy to cross, it's scary. I'm also taking Provigil. It's crazy expensive, so I only take half the prescribed dose, and I divide that dose during the day, because it seems to wear off. I may need to raise my dose though. I have zero caffeine intake, for multiple reasons. I'm working on building up my energy. I get enough sleep, so I should be able to make it through a day. I'm just experimenting with increasing my salt and fluid intake even more, which seems to be helping with POTS/fatigue. Often, other symptoms also limit me, like...
Body pain--joints and muscles. My muscles sometimes ache for no reason. My joints always, always, always hurt. Whichever joints are being used will start to hurt. If I lean on my wrists, they will be so sore. If I walk or stand, my knees will hurt the most, but my spine will hurt, too. I've had just about any body part randomly become almost unusable for stupid reasons, like driving. Random muscles or tendons seem to seize up when I use them (just like my neck does--always). I have shin splints now, so those hurt whenever I walk around or stand still. My feet hurt like heck after I am on them for about an hour, no matter what type of footwear I have. So after a longer period of time, they hurt a lot worse. I also began having jaw pain when I eat anything too crunchy (like raw carrots). These symptoms are ALL Ehlers Danlos symptoms.
POTS symptoms--improved since surgery, but still difficult. I basically never pass out anymore. I also refuse to use a wheelchair anymore, but will on occasion use a "cane seat," which is just a little portable seat, so you don't have to stand in one place. A recent heat wave gave me a POTS setback. I can't be anywhere near heat, or I become almost comatose. And when I say heat, I mean when the house temperature is set at 79 degrees instead of 73 degrees. I don't dare to go outside when it's too hot. Unfortunately, I am that heat sensitive. It makes the difference between a day sprawled out on the couch chugging water and salt, trying to raise my bp, while being basically incoherent, and a day where I can walk all around the house and do laundry, get dressed, shower, etc., with very little rest.
I have plenty of other fascinating symptoms to discuss, but that seems like the major ones for now.
I have plenty of other fascinating symptoms to discuss, but that seems like the major ones for now.
So, my favorite feature of my blog has become:
A Day in the Life
So I'll bring it back now, to show where I'm at.
People see me for a snapshot of time. Time when I'm dressed, perhaps bathed, might even have makeup to cover an outbreak of acne. It's also usually a time when I smile, and pretend I don't feel how I'm feeling. I put things in a positive light, because I've been told a million times to focus on the positive. Apparently positive "energy" is magic. I do recognize my progress, which I couldn't be more grateful for, after how long I've waited for it (first surgery 2002). But people don't ask what I really go through from day to day too often, because that's usually not what they want to hear when they ask "How's it going?"
But here, I'll try to explain an "average" day. Which is quite difficult, if you think about the difference between a good day and a bad day. But I'll just talk about the past week, to make it easy.
Basically, I wake up around 10:30.
I prepare and eat breakfast and take pills.
But here, I'll try to explain an "average" day. Which is quite difficult, if you think about the difference between a good day and a bad day. But I'll just talk about the past week, to make it easy.
Basically, I wake up around 10:30.
I prepare and eat breakfast and take pills.
I prepare and eat lunch around 1:30 and take pills.
I prepare and eat dinner around 5:30 and take pills.
Around 7:00, I either get dressed, or shower and get dressed.
Then, I can begin my day.
I can go to the store, meet up with a friend, go to the gym, clean up around the house, do laundry, etc.
Too bad I have to get ready for bed by 11:00, even though I'm not tired.
I know this begs the question: what do I do all day? Unfortunately, this question always feels like an accusation of laziness. But to satisfy curiosity, I'll try to answer. Due to jaw pain and dysphagia, my meals take a lot of time. (Seriously, an hour each.) I also have to keep my body reclined for much of the early part of the day, due to POTS. I'm still working on finding energy earlier in the day, whether it comes from salt, Provigil, or something else. But lethargy is another reason my day takes so long to kick into gear. Perhaps part of it is a lack of motivation, because I don't have too many things on the schedule right now, but I do usually have a to-do list, with things that I really want to get done.
This isn't to say that I don't ever schedule activities in the afternoon (although I don't in the mornings). And I need to get used to this schedule, because it's the only time I'll be able to work. But when I do go out in the afternoon, I have a hard time getting through anything. Plus, my body pays for it later.
Another part of it seems to be that I seem to zone out a lot during the day. I blame it on a lack of oxygen to the brain. It's like the world moves in slow motion for me. The little on-off switch in my brain is flipped off all day. And on a good day, it gets flipped back on by 7:00 PM.
I prepare and eat dinner around 5:30 and take pills.
Around 7:00, I either get dressed, or shower and get dressed.
Then, I can begin my day.
I can go to the store, meet up with a friend, go to the gym, clean up around the house, do laundry, etc.
Too bad I have to get ready for bed by 11:00, even though I'm not tired.
I know this begs the question: what do I do all day? Unfortunately, this question always feels like an accusation of laziness. But to satisfy curiosity, I'll try to answer. Due to jaw pain and dysphagia, my meals take a lot of time. (Seriously, an hour each.) I also have to keep my body reclined for much of the early part of the day, due to POTS. I'm still working on finding energy earlier in the day, whether it comes from salt, Provigil, or something else. But lethargy is another reason my day takes so long to kick into gear. Perhaps part of it is a lack of motivation, because I don't have too many things on the schedule right now, but I do usually have a to-do list, with things that I really want to get done.
This isn't to say that I don't ever schedule activities in the afternoon (although I don't in the mornings). And I need to get used to this schedule, because it's the only time I'll be able to work. But when I do go out in the afternoon, I have a hard time getting through anything. Plus, my body pays for it later.
Another part of it seems to be that I seem to zone out a lot during the day. I blame it on a lack of oxygen to the brain. It's like the world moves in slow motion for me. The little on-off switch in my brain is flipped off all day. And on a good day, it gets flipped back on by 7:00 PM.
FUTURE
So, my life is in a transitional stage this summer, and I'm definitely thinking about everything that is going to change. For one thing, on the day of my marriage, I will no longer qualify for disability. I will also be switching to Wisconsin state employee insurance. So, there's a lot to think about and plan for.
The biggest thing left for me to figure out is that I need to start working again. First, I need to replace the disability income with my own income. Then, I need to make additional income to help in my new household. I have to help support myself, and with my medical needs, that costs a lot. But I can't take on too much, or I will overwhelm my body. But I'll be in a new town, so finding new piano students, enough to make the needed money, but not more than my body can handle, will be challenging. And it's always difficult starting a new business from scratch.
I'll try to post again soon...
So, my life is in a transitional stage this summer, and I'm definitely thinking about everything that is going to change. For one thing, on the day of my marriage, I will no longer qualify for disability. I will also be switching to Wisconsin state employee insurance. So, there's a lot to think about and plan for.
The biggest thing left for me to figure out is that I need to start working again. First, I need to replace the disability income with my own income. Then, I need to make additional income to help in my new household. I have to help support myself, and with my medical needs, that costs a lot. But I can't take on too much, or I will overwhelm my body. But I'll be in a new town, so finding new piano students, enough to make the needed money, but not more than my body can handle, will be challenging. And it's always difficult starting a new business from scratch.
I'll try to post again soon...
