I am bitter today. I know I shouldn't be, but I am. I am so completely fed up with everything right now.
I feel like this week I took a huge step backwards health-wise. I know it's probably just normal ups and downs of the process, but it's so discouraging to feel like you are starting to get something under control, even if it isn't perfect, and suddenly find everything falling apart again. I am solidly back in the realm of not sleeping again. The last couple days have been particularly stupid. My insomnia has been getting worse and worse every day this week, until finally on Thursday night I couldn't sleep at all until 6am (friday morning). Consequently, on Friday I didn't wake up until 6pm!!! It is not at all unusual anymore for me to sleep till 1 or 2 in the afternoon, but 6 is just absurd if you ask me. Partly in effort to "reset" my internal clock, and partly in desperate hopes of finding a way I could possibly make it to church this morning, I decided to just stay up all night Friday and all day Saturday so I could be completely exhausted by early Saturday night and fall asleep at a normal time. Before people think I sound completely out of my mind, this stay-awake-for-20-some-hours approach is thus far the only way I've successfully managed to get myself back into normal sleep patterns for any amount of time in the past. So I mentally pretended that the 6pm when I woke up was actually 6am and lived my friday in the middle of the night. By Saturday at noon I literally could not even move, so I let myself take a short 2 hour nap and then was up and ready to go again. I went out to see the Muppets Movie w/ my hubby that evening to try to keep myself awake for those last few hours of the day, and then promptly went to bed by 11pm. I was exhausted! My head felt fuzzy, my muscles were gone, and my eyes could barely stay open. And still, as I lay there in bed, I could NOT fall asleep. I lay there, eyes closed and completely motionless, for almost an hour, completely conscious for every minute of it. I turned on the tv for a few minutes, hoping it would help my mind wind down. Soon, I couldn't keep my eyes open any longer, so I turned it off and lay quiet again. Still sleep would not come. It was almost 2:30 before I finally fell asleep. After over 30 hours with no sleep except the brief 2 hour nap that afternoon, my body still could not find the peace to rest.
Of course, the next morning (this morning) as my alarms for church were ringing persistently in my ear, it was then that my body finally decided it was time to rest. I could not move a muscle. Every ounce of energy I could muster went into hitting the snooze button in hopes that the next 10 minutes would somehow bring the miracle of energy and movement. It's been over a month since I've been to church and I feel like my soul is starving for worship and community. I hate how much power my physical body has to dictate my actions instead of being guided by my values and choices. I can tell there is a spiritual war going on inside me as well as a physical battle. And I think that in both cases, though the right side is persevering overall, the battle is causing devastating side effects. Tears streamed down my face as I finally had to face the fact that I wasn't going to make it to church again this week. After trying so hard and pushing myself so far, I still wasn't strong enough to live the life I want to have.
It is in moments like this when the deep sort of despair sets in. As if it wasn't hard enough to be constantly faced with my own weakness and insufficiency, moments like this are when I can't help but ask, "where is God in this?" I can usually come to terms with the fact of my illness--we live in a sinful world and still God uses it to teach reliance on Him--and I can even get over having to make sacrifices in my career and my friendships--these things are blessings, luxuries, and it is not for me to say what I deserve. But I really struggle with things like inability to go to church, join a small group, or volunteer with ministries. Things that are bigger than just me, and things that my spirit so desperately craves. Things that bring glory to God and grace to others. Do I just lack the faith that God will supply the strength to do His work? Or does He really allow those goods to be sacrificed because of my fallen body? Most days it feels more like the latter.
Of course, these deep, dark moments are when the demons strike hardest. Today has been one of those days where it seems that everything that could possibly go badly does. I have detox rashes breaking out all over my body, causing uncontrollable itching almost everywhere. My muscles are so weak it has taken me over 4 hours to write this, because my fingers move so slowly and I can only hold my head up to write for very short bursts of time. I have not been able to get off the couch all day except with extreme effort and pain. Speaking of pain, for the last 2 hours I've had shooting pains through my abdomen, lower back, and neck. It is like a cramp or muscle spasm except it never stops, ever. My head is throbbing, my eyes go in and out of focus every few minutes, and every so often I just zone out, completely and totally unaware of anything around me. In the really bad moments, which come and go, even the feeling of my clothes against my skin send shivers through my body and prickling pain across my skin.
These are the times when I want to hide. No one who hasn't experienced days like this can understand. I try to close my eyes until it's all over and pretend it doesn't happen. No one wants to hear about the bad times. But this is part of it. This is what living with a chronic debilitating disease looks like. This is my life. I can't hide from it anymore. So forgive me for venting and spewing my misery all over you. This is the only way I know to force myself to acknowledge it, to face it, and to deal with it.
Lord, heal my bitter heart and my broken body. Make me into an image of Your Grace and Truth.
Amen.
Sunday, January 29, 2012
Friday, January 20, 2012
Calm after the storm?
Oh my what a nightmare the last few weeks have been. Mostly as a result of my husband's hairbrained idea to go to grad school. :-p No, I really do think it's a great idea and I'm so blessed by his ambition, but I had forgotten how draining it is to apply to schools. Most of the last few weeks have consisted of countless late nights and intensive essay proof-reading sessions--not an easy feat when oftentimes my inability to concentrate makes reading period a difficult process. After the first week of deadlines (when 4 of the 6 schools we applied to were all due the same week) I literally didn't get out of bed for 2 whole days afterward except to get food and use the bathroom. Ugg. Thankfully, we managed to complete all our priority #1 schools by the deadlines--including Harvard, Stanford, MIT, Yale, UC Berkeley, and UVA--and now we just have to wait and hope to be contacted for interviews hopefully in the next month or two.
My job is also starting to pick up a bit, though the "busy season" won't really start until the beginning of Feb. But I did 2 whole tax returns yesterday during a 5 hour shift, which is pretty great for this time of year. I might actually make some money doing this after all.
Of course my biggest challenge right now is still trying to navigate through my new schedule of pills and meals and sleep and more pills. My insomnia is back and every day for the last 4-5 days I've been up until about 4-5am. Not at all helpful while trying to establish a routine. Also, after a meeting with the nutritionalist at my doctor's office a couple weeks ago, she started me on a low-glycemic diet, which basically cuts out almost all grains and sugars and adds a whole boatload of veggies compared to what I usually eat. This is partly to help in the fight against the Lyme (which produces toxins and fungi that feed and multiply off of sugars and starches in my body) and partly to help me start shaving off some of the weight this stupid illness has caused me to gain. After gaining more than 20 pounds in the last year, I can only hope it works. If anyone has any good recipe ideas for grain-free or veggie-heavy foods/meals I am on the lookout! I always felt I ate pretty healthy before (and actually the nutritionalist agreed!) but I never noticed how much I tend to pair everything with a bread-y base before. I've always eaten a pretty good balance of protein, healthy fats, fresh fruits, and some veggies, but I always put it on pasta, or a tortilla, or a sandwich. I'm a little disoriented trying to figure out what to eat when I can only have 1 grain item (i.e. slice of bread, tortilla, 1/2 c pasta, etc) each day!
I am so looking forward to the day when all this starts feeling a little more natural and a little less overwhelming. It's been so hard to gauge my body's reactions to the new meds because I feel completely exhausted and overwhelmed all the time, but I strongly suspect that has more to do with all the big lifestyle changes I am encountering all at once. I hope next week may bring a short and peaceful respite.
My job is also starting to pick up a bit, though the "busy season" won't really start until the beginning of Feb. But I did 2 whole tax returns yesterday during a 5 hour shift, which is pretty great for this time of year. I might actually make some money doing this after all.
Of course my biggest challenge right now is still trying to navigate through my new schedule of pills and meals and sleep and more pills. My insomnia is back and every day for the last 4-5 days I've been up until about 4-5am. Not at all helpful while trying to establish a routine. Also, after a meeting with the nutritionalist at my doctor's office a couple weeks ago, she started me on a low-glycemic diet, which basically cuts out almost all grains and sugars and adds a whole boatload of veggies compared to what I usually eat. This is partly to help in the fight against the Lyme (which produces toxins and fungi that feed and multiply off of sugars and starches in my body) and partly to help me start shaving off some of the weight this stupid illness has caused me to gain. After gaining more than 20 pounds in the last year, I can only hope it works. If anyone has any good recipe ideas for grain-free or veggie-heavy foods/meals I am on the lookout! I always felt I ate pretty healthy before (and actually the nutritionalist agreed!) but I never noticed how much I tend to pair everything with a bread-y base before. I've always eaten a pretty good balance of protein, healthy fats, fresh fruits, and some veggies, but I always put it on pasta, or a tortilla, or a sandwich. I'm a little disoriented trying to figure out what to eat when I can only have 1 grain item (i.e. slice of bread, tortilla, 1/2 c pasta, etc) each day!
I am so looking forward to the day when all this starts feeling a little more natural and a little less overwhelming. It's been so hard to gauge my body's reactions to the new meds because I feel completely exhausted and overwhelmed all the time, but I strongly suspect that has more to do with all the big lifestyle changes I am encountering all at once. I hope next week may bring a short and peaceful respite.
Thursday, January 5, 2012
What have I gotten myself into?
Yesterday I had my first day back working again at H&R Block. I agonized over the decision about whether or not I was up for returning to work this year given the condition of my health. I'm still not completely sure I made the right choice, but since I can work only a couple hours a week and the office is right across the street and, let's face it, we could use a little extra income right now, I decided to give it a shot. I am learning how much it is true that I am my own worst enemy right now. I get myself so psyched out about whether or not I will be able to keep up with life that it exhausts me before I even had a chance.
Fortunately though, my first day went remarkably well. I really like my manager and the people I am working with. I switched to a new office from last year (because it's right across the street) and was a little nervous about having to make the adjustment, but everyone is so helpful and welcoming I think the transition will go very smoothly. The only hard part is going to be trying to remember how to do taxes again after 8 months of off-season. :-P
Unfortunately, it was the first day I've had icky symptoms presumably from the new meds. I had terrible nausea off and on all day. It seems to happen most often shortly after taking the antibiotics/antifungal/garlic dose so I'm taking that to mean that they are working and my infection isn't happy about it. I have an appointment at my dr's office on tues to meet with a nutritionalist so, if things don't get better, I may ask about it then and see if I need to be worried.
Today I feel a lot better so far except that I am incredibly exhausted. I've not gotten out of bed all day except to make food and I still feel like it might be time for a nap. :-( Mmmm... nap sounds good.
Goodnight. :-P
Fortunately though, my first day went remarkably well. I really like my manager and the people I am working with. I switched to a new office from last year (because it's right across the street) and was a little nervous about having to make the adjustment, but everyone is so helpful and welcoming I think the transition will go very smoothly. The only hard part is going to be trying to remember how to do taxes again after 8 months of off-season. :-P
Unfortunately, it was the first day I've had icky symptoms presumably from the new meds. I had terrible nausea off and on all day. It seems to happen most often shortly after taking the antibiotics/antifungal/garlic dose so I'm taking that to mean that they are working and my infection isn't happy about it. I have an appointment at my dr's office on tues to meet with a nutritionalist so, if things don't get better, I may ask about it then and see if I need to be worried.
Today I feel a lot better so far except that I am incredibly exhausted. I've not gotten out of bed all day except to make food and I still feel like it might be time for a nap. :-( Mmmm... nap sounds good.
Goodnight. :-P
Monday, January 2, 2012
Newness of Life
I'm not sure I've ever been as excited about the start of a New Year as I am this year. The last year has been a difficult one, but also an incredibly victorious one. We have struggled to find jobs at times, had to find a new place to live, dealt with the usual newlywed marital issues, to say nothing of the immense difficulties, both personal and financial, caused by chronic health problems. Yet through it all we have always, by God's grace, managed to find everything that we need. We are getting by financially, preparing for a new career (Paul applying to grad school and me getting ready to apply for a teaching position at an online school), continuing to grow in our marriage, and starting a new treatment for my Lyme disease. I have such a strong sense of how very much we have to look forward to in 2012!
So far the new year is starting off right. Yesterday, we officially submitted Paul's first MBA application to the Yale School of Management! There are still several more schools to finish in a short amount of time but it feels great to know that one is completely finished! This morning, I started the last stage of new meds/supplements, including the doxycylene (antibiotic). Now, the real healing begins! I am going to attempt to start posting more often, primarily for the sake of being able to track my symptoms and progress more carefully. Pester me if I'm not succeeding in this goal. ;-)
I am hoping I will soon fall into a good rhythm with all these new pills. As of today, I have to wake up at 7 to take one pill, go back to sleep until 8, wake up and take 3 more pills and some liquid garlic drops, and then wait until 9 before I am allowed to eat anything. Then, with breakfast, I have 11 more pills to take, then 3 with lunch, 3 more in the mid-afternoon (at least 2 hours after lunch but 4 hours before dinner), 4 with dinner, and then some powder that tastes like orange sand every night before bed and some goop that looks like mustard twice a week before bed. Ack!
I felt surprisingly good when I woke up this morning, but I appear to be getting increasingly more lethargic the more time that passes. This is backwards from how a normal day used to go! I wonder if it's the anitbiotics. I am supposed to go out and make cake pops with some friends in a bit. Come on body, you can do it!
In the meantime... naptime. ;-)
(Romans 6:4)
So far the new year is starting off right. Yesterday, we officially submitted Paul's first MBA application to the Yale School of Management! There are still several more schools to finish in a short amount of time but it feels great to know that one is completely finished! This morning, I started the last stage of new meds/supplements, including the doxycylene (antibiotic). Now, the real healing begins! I am going to attempt to start posting more often, primarily for the sake of being able to track my symptoms and progress more carefully. Pester me if I'm not succeeding in this goal. ;-)
I am hoping I will soon fall into a good rhythm with all these new pills. As of today, I have to wake up at 7 to take one pill, go back to sleep until 8, wake up and take 3 more pills and some liquid garlic drops, and then wait until 9 before I am allowed to eat anything. Then, with breakfast, I have 11 more pills to take, then 3 with lunch, 3 more in the mid-afternoon (at least 2 hours after lunch but 4 hours before dinner), 4 with dinner, and then some powder that tastes like orange sand every night before bed and some goop that looks like mustard twice a week before bed. Ack!
I felt surprisingly good when I woke up this morning, but I appear to be getting increasingly more lethargic the more time that passes. This is backwards from how a normal day used to go! I wonder if it's the anitbiotics. I am supposed to go out and make cake pops with some friends in a bit. Come on body, you can do it!
In the meantime... naptime. ;-)
(Romans 6:4)
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