I hate to feel like I keep complaining, but being a young person with chronic health problems really sucks. I would put it more delicately, but that's the thing... I can't. Because I am angry right now about how it has put my life at a standstill for eight months now. I am not sure how much my cortisol levels have to do with my current situation and how much my FM is to blame, but either way it just blows.
And I know there are a lot of older people who suffer from the same sorts of aches, pains and lack of energy that I do. But that's the thing-- they're older. They've gotten to enjoy they're youth and now they are facing the results of the aging process and possibly also the consequences of poor lifestyle choices.
I, on the other hand, have had to deal with chronic pain, fatigue, digestion problems, sleep problems and a plethora of other issues since I was 15. I am grateful to my pediatrician for researching and testing me extensively until she could diagnose me. And I am grateful to my physical therapists, acupuncturists, therapists and pain management doctor for helping me go into remission. I'm also grateful to my parents, especially my mom, for the financial and particularly the emotional support during my hardest times. My mom has fibromyalgia as well and I am certain it set in because of the trauma and stress of caring for a sick child.
But I am still a bit bitter, and probably always will be, for missing out on experiencing being a teenager. Depression and anxiety stole a great deal of my childhood from me, if not literally at least as far as my memories go. And fibromyalgia stole what should have been my carefree teen years from me. My only comfort is the realization that my Type-A personality would have ruined my carefree teen years anyway. I would have still focused on studying more than dating and would have preferred quietly watching a movie or TV show with a close friend to going to noisy, drunken parties. But at least I would have been making a choice. I simply didn't have the energy tto study and date or to go to noisy, drunken parties. I was in college by 16, so almost nobody my age still remembered me and I was too intimidated to socialize with my classmates (well, when I was a freshman I just thought the other freshmen were too immature, but the older students intimidated me).
I did get to experience a taste of being a carefree twentysomething. I have dated and gone to drunken parties. And I quickly tired of that scene. I am more suited to settling down with someone I truly love and watching a movie at home with him or a friend. But if I had the energy, I know I would get out more. I do enjoy socializing. I like dancing and going to live shows, even if I don't like "keggers" (which I think most people outgrow by 25 anyway, unless they throw or go to them ironically or for nostalgic reasons). But the most I can generally do is go to a movie or dinner, where I sit down just as I do at home. I can run errands and go to the occasional show (not nearly as many as I'd like to), but those take my energy for the week and dancing is out of the question. Taking the long walks I love to take and doing yoga have been mostly impossible as well.
I almost wish I hadn't gotten a taste of reckless youth. It only makes me wistful. Being a responsible adult is what I have always wanted, but then I realized how fun being a little irresponsible is. Being spontaneous is exciting now and then. Making mistakes is a good method of learning. But now my three years of irresponsibility have passed.
While I know my health will (probably) eventually improve as far as my adrenal fatigue goes, I don't have much hope of my fibromyalgia improving. And even if I do experience another remission, I will always have it to some degree. And the natural aging process is only going to make it worse as the years drag on.
Now, I know there are kids younger than I am who have the same disease I do or worse. And I feel sad for them too. I mourn the loss of childhood that any sick kid-- whether it be from asthma, depression, bipolar disorder, cancer or anything else-- has to experience. I wish all of us could have really gotten to be kids and teenagers. But the experience of being a child suffering from an illness does give a person inner strength and wisdom that others don't have. And at least I get to be an adult who missed out on things, rather than a child who didn't even make it to five, let alone 25. So I must count my blessings-- life, love, freedom, security, education ... Even though health isn't one of them, I think I have more than enough other blessings to make up for it.
I didn't even write this entry looking for a happy ending, but it looks like I gave myself one.
Friday, June 5, 2009
Wednesday, June 3, 2009
Peanut Butter Plan
Yesterday I decided to join a new movement: The Peanut Butter Plan. The story, in a nutshell: A young man in San Francisco saw hungry people around him and decided to do something about it. So he got some friends together and made sandwiches to pass out to those hungry people. The PBP is spreading across the country. People who join pledge to make and hand out sandwiches at least once a month. I am the point person for Denton and am trying to get more of my friends to join and to start PBP's in their own cities.
This post strikes me as slightly ironic for two reasons:
1) I myself am not allowed to eat peanut butter or jelly and am discouraged from eating much bread, but I will be making large quantities of them to give to other people. It seems like I will be leading myself into the path of temptation. On the bright side though, I do have some peanut butter and jelly I can no longer consume myself so I can put it to very good use.
2)I just posted a blog about how I needed to relax more and learn to tell people know. I said I need to learn to let other people do things for me because I don't have the energy to do a lot myself.
The thing is, what I lack in energy I make up for in compassion (and in time, for that matter). And this thing is so simple yet so important that I can't not do it. It will only take about $10 in supplies, an hour of preparation and half an hour of handing out food (and interacting with people I normally wouldn't be in touch with) to make a difference in people's lives. I may not be able to provide all the meals they need, but I will at least make sure they have an extra meal one weekend a month. And I hope to eventually gather enough volunteers to have sandwich weekends every week.
At first I will probably go around passing out food on Sundays. I am going to do more research, but from what I learned writing stories about the local homeless a couple of years ago that's when they have the most trouble finding food. But it could spread to an entire weekend, then to every weekend. But this small first step will be enough to at least ensure that I am making some direct impact on the local homeless community. In Denton, the homeless are often ignored and I want them to know that people care about them.
On a selfish level, I think helping people will also help me. It will make me feel like I am making a difference in people's lives (my main goal as a journalist) and that will help me to relax and be happy. And I think every volunteer gets something back from it. Making other people happy makes you happy too. It's just the way it works. It's never the main objective of volunteering, but it's the best byproduct.
If you would like to help with my Peanut Butter Plan, or perhaps start one in your city, contact me or go to Peanut Butter Plan. I believe you need a facebook account to look at the group. All credit for this idea goes to Jory John of San Francisco. He's inspirational.
This post strikes me as slightly ironic for two reasons:
1) I myself am not allowed to eat peanut butter or jelly and am discouraged from eating much bread, but I will be making large quantities of them to give to other people. It seems like I will be leading myself into the path of temptation. On the bright side though, I do have some peanut butter and jelly I can no longer consume myself so I can put it to very good use.
2)I just posted a blog about how I needed to relax more and learn to tell people know. I said I need to learn to let other people do things for me because I don't have the energy to do a lot myself.
The thing is, what I lack in energy I make up for in compassion (and in time, for that matter). And this thing is so simple yet so important that I can't not do it. It will only take about $10 in supplies, an hour of preparation and half an hour of handing out food (and interacting with people I normally wouldn't be in touch with) to make a difference in people's lives. I may not be able to provide all the meals they need, but I will at least make sure they have an extra meal one weekend a month. And I hope to eventually gather enough volunteers to have sandwich weekends every week.
At first I will probably go around passing out food on Sundays. I am going to do more research, but from what I learned writing stories about the local homeless a couple of years ago that's when they have the most trouble finding food. But it could spread to an entire weekend, then to every weekend. But this small first step will be enough to at least ensure that I am making some direct impact on the local homeless community. In Denton, the homeless are often ignored and I want them to know that people care about them.
On a selfish level, I think helping people will also help me. It will make me feel like I am making a difference in people's lives (my main goal as a journalist) and that will help me to relax and be happy. And I think every volunteer gets something back from it. Making other people happy makes you happy too. It's just the way it works. It's never the main objective of volunteering, but it's the best byproduct.
If you would like to help with my Peanut Butter Plan, or perhaps start one in your city, contact me or go to Peanut Butter Plan. I believe you need a facebook account to look at the group. All credit for this idea goes to Jory John of San Francisco. He's inspirational.
Cortisol-ution: Week 2
I have just finished the second week of my new lifestyle aimed at bringing down my cortisol levels and improving my overall health.
Here's a little progress report (there's a summary at the end if you want to scroll down and skip ahead... but if you had better things to do than waste time reading about me, I guess you wouldn't be here):
I am sticking to my diet quite well-- I have been fighting cravings for foods with refined sugar, refined flour and caffeine but thus far have fought all such cravings. If I want something sweet, I eat some fruit, chocolate or vanilla yogurt (which I make with vanilla extract and agave nectar). I am figuring out how to be work with agave nectar as a low-glycemic alternative to sugar. Luckily I bought it several months ago and know how to use it pretty well. I am great at making chocolate syrup only using some agave nectar and cocoa powder, bother perfectly reasonable things for me to consume. As far as salty things go, I am encouraged to use sea salt liberally, so I have no problems there. And I am trying to come up with fun recipes involving other foods I am allowed to eat. Having only a toaster oven to cook with (we just bought a gas oven but still need the couplers to connect it) and being on a restricted diet can be stressful, but I'm trying to turn it into a fun challenge. I have noticed a decrease in appetite. On the surface, that's good because I was constantly hungry before. But I am supposed to eat every three hours and lately I have to force myself to do so. I may even need to set a timer so I don't forget meals (I've been doing that as well). While I haven't noticed real improvement in the way I feel because of my diet, I know that being consistent with it will be key in getting better.
Even though I haven't noticed the good effects of my diet, I have noticed one major downside. I have been experiencing excruciating stomach cramps and other unpleasant gastronomic reactions. I think the culprits are probably all of the raw vegetables I have been eating. In particular, I have been drinking one cup of tomato juice per day to make my omega 3 liquids easier to handle (I also dissolve a teaspoon of sea salt in it to cover the orange taste of the omega 3 (orange and tomato is not a good combo... and I am not allowed oranges so I don't get why I am taking this particular formula) and because it sounds better than dissolving it in water). I have IBS and my stomach is already acidic on its own. So you can imagine what dumping a cup of tomatoes, and sometimes eating tomatoes, along with eating roughage every day is doing to my poor digestive system. The thing is, I am not supposed to drink fruit juice and I don't know what else I can put the omega 3 formula in. I have an issue with taste and texture and think anything else could enter vomit territory. I already tried it with my cereal and it was hard to finish.
As far as keeping my stress level down, I am still struggling. For as long as I can remember, I have been a worrier. I have a type A personality and want everything to be perfect. I have a need to be in control of things and my anxiety worsens when I lose that control. And it is hard for me to allow other people to do things that I think (or know) I can do better. But I have realized that I am going to have to ask David for more help, even if he doesn't do as thorough a job as I do. I mainly need help getting things unpacked and finally getting the house in order. And doing basic chores, like washing the dishes, is a draining (no pun intended) task for me. Most days I don't even attempt cleaning lately because of my lack of energy. And when I go out to run errands, especially to get groceries (another thing I have control issues about), it wipes out my energy reserves for the week. Keeping up with the bills also stresses me because I am the one who always does it and I worry about what will happen if I don't. I have been trying my best to rest without feeling like I'm being lazy. Knowing that my health depends on it helps a great deal. I mean, I knew I needed to relax with having Fibromyalgia, but knowing that my adrenal gland could tap out seems a lot more serious than having to deal with extra pain for a few days because I overdid it. I am learning to tell people "no" or "later" when they ask me to do things, even fun things. I am also learning to ask for, and possibly demand, help from the people in my life.
Along the same lines, the sleep thing is not going so well either. I just looked at the clock and it is 10:13 p.m., 13 minutes after my recommended bedtime. But I am honestly not tired. And I have had trouble getting tired, or staying tired, or falling asleep even though I'm exhausted, or staying asleep. Sleep, just like anxiety, has been a major issue I've struggled with since childhood. I was on Elavil, an antidepressant that was frequently (but not as much now) prescribed for sleep, when I was around six. And I think my anxiety has a great deal to do with it. But I've tried all manner of pills and supplements to alleviate the anxiety and/or to help me sleep. Some of them nauseated me, some of them made me feel high, some had no effect. Most worked but wore off unless I took higher and higher doses, usually reaching the highest healthy dose and being left once again with no help. The meds I am currently taking (klonopin) worked beautifully the first night and I had high hopes. But by the next night they had stopped helping. They relax me to the point of barely being able to walk, but they still don't help me sleep. Breathing techniques and guided relaxation help me fall asleep, but I almost inevitably wake up mid-sleep and struggle to fall asleep again. And being a light sleeper with a boyfriend and dog who both seem unaware of that fact doesn't help matters. I have been in bed for 11 hours almost every night as I should (and at least I haven't been shaming myself for it like I was doing before), but 8 or fewer of those hours are spent actually sleeping. I need something to turn my brain off. I overanalye things constantly, to the point of keeping myself from sleeping.
My emotional breakdowns have not improved. It would be best to ask David how many breakdowns he has seen me have over the past six months. It's hard for me to keep track... they get pretty intense so I generally don't stop in the middle and jot down which one I'm on. But my most recent one was a couple of days ago and it involved a desk. If a desk seems like a trivial thing to get upset over, you don't truly know a hormonal woman, or at least me in particular. The desk in question is a computer desk we did not have room for in the house, so we left it on the porch. Now, we were both well aware of the stringent policies in Denton banning indoor furniture from being displayed outdoors. But we assumed we would be rid of the desk before a problem arose. We were wrong. We got a letter in the mail, right before I took a trip to Wichita Falls to see my (former) pain management doctor, telling us we had 10 days to get rid of the desk. Well, being the worrier I am, I started stressing out about the desk and repeatedly reminded David to post the desk on Craigslist (he did and nobody wanted it) or find someone to haul it away (he did not do that). So, two weeks later we still had the desk and I decided to take matters into my own hands. He no longer had the pictures of the desk, so I went to the porch to take some. But the desk was not assembled. The (very heavy) shelf that goes on top was beside it. When I tried to put the (very heavy) shelf on top I dropped it and it broke in two. So when I again couldn't lift it I decided throwing the pieces of the shelf onto the front lawn would be a fine idea. That got David's attention and he told me to go take a nap. Instead I decided to lie down and sob uncontrollably for about ten minutes straight. And David was completely calm and rational the whole time. He sat beside me and comforted me. I decided not to lift heavy things without help anymore (my hands still hurt from that) and to eat my meals at regular intervals, even when I'm not hungry (I don't know how many times I have to learn that lesson). I think if I had eaten when I should have, I would not have been quite so irrational in my actions or quite so upset.
To summarize: I am eating the things I should, but my stress and anxiety levels are still too high and I need to get better quality sleep.
I am going to stay on course with my diet and do what I can to improve my sleep and relaxation. It's just hard for someone who prefers being busy to have to deal with doing very little to nothing. I basically have (or should have) Garfield's lifestyle right now-- eating several times a day and napping in between. For me, being inactive is more stressful than being overscheduled. I like having my day planned down to the minute. I like having a checklist with all the items checked off. So maybe I should have a checklist that has RELAX and SLEEP as two of the top items.
Here's a little progress report (there's a summary at the end if you want to scroll down and skip ahead... but if you had better things to do than waste time reading about me, I guess you wouldn't be here):
I am sticking to my diet quite well-- I have been fighting cravings for foods with refined sugar, refined flour and caffeine but thus far have fought all such cravings. If I want something sweet, I eat some fruit, chocolate or vanilla yogurt (which I make with vanilla extract and agave nectar). I am figuring out how to be work with agave nectar as a low-glycemic alternative to sugar. Luckily I bought it several months ago and know how to use it pretty well. I am great at making chocolate syrup only using some agave nectar and cocoa powder, bother perfectly reasonable things for me to consume. As far as salty things go, I am encouraged to use sea salt liberally, so I have no problems there. And I am trying to come up with fun recipes involving other foods I am allowed to eat. Having only a toaster oven to cook with (we just bought a gas oven but still need the couplers to connect it) and being on a restricted diet can be stressful, but I'm trying to turn it into a fun challenge. I have noticed a decrease in appetite. On the surface, that's good because I was constantly hungry before. But I am supposed to eat every three hours and lately I have to force myself to do so. I may even need to set a timer so I don't forget meals (I've been doing that as well). While I haven't noticed real improvement in the way I feel because of my diet, I know that being consistent with it will be key in getting better.
Even though I haven't noticed the good effects of my diet, I have noticed one major downside. I have been experiencing excruciating stomach cramps and other unpleasant gastronomic reactions. I think the culprits are probably all of the raw vegetables I have been eating. In particular, I have been drinking one cup of tomato juice per day to make my omega 3 liquids easier to handle (I also dissolve a teaspoon of sea salt in it to cover the orange taste of the omega 3 (orange and tomato is not a good combo... and I am not allowed oranges so I don't get why I am taking this particular formula) and because it sounds better than dissolving it in water). I have IBS and my stomach is already acidic on its own. So you can imagine what dumping a cup of tomatoes, and sometimes eating tomatoes, along with eating roughage every day is doing to my poor digestive system. The thing is, I am not supposed to drink fruit juice and I don't know what else I can put the omega 3 formula in. I have an issue with taste and texture and think anything else could enter vomit territory. I already tried it with my cereal and it was hard to finish.
As far as keeping my stress level down, I am still struggling. For as long as I can remember, I have been a worrier. I have a type A personality and want everything to be perfect. I have a need to be in control of things and my anxiety worsens when I lose that control. And it is hard for me to allow other people to do things that I think (or know) I can do better. But I have realized that I am going to have to ask David for more help, even if he doesn't do as thorough a job as I do. I mainly need help getting things unpacked and finally getting the house in order. And doing basic chores, like washing the dishes, is a draining (no pun intended) task for me. Most days I don't even attempt cleaning lately because of my lack of energy. And when I go out to run errands, especially to get groceries (another thing I have control issues about), it wipes out my energy reserves for the week. Keeping up with the bills also stresses me because I am the one who always does it and I worry about what will happen if I don't. I have been trying my best to rest without feeling like I'm being lazy. Knowing that my health depends on it helps a great deal. I mean, I knew I needed to relax with having Fibromyalgia, but knowing that my adrenal gland could tap out seems a lot more serious than having to deal with extra pain for a few days because I overdid it. I am learning to tell people "no" or "later" when they ask me to do things, even fun things. I am also learning to ask for, and possibly demand, help from the people in my life.
Along the same lines, the sleep thing is not going so well either. I just looked at the clock and it is 10:13 p.m., 13 minutes after my recommended bedtime. But I am honestly not tired. And I have had trouble getting tired, or staying tired, or falling asleep even though I'm exhausted, or staying asleep. Sleep, just like anxiety, has been a major issue I've struggled with since childhood. I was on Elavil, an antidepressant that was frequently (but not as much now) prescribed for sleep, when I was around six. And I think my anxiety has a great deal to do with it. But I've tried all manner of pills and supplements to alleviate the anxiety and/or to help me sleep. Some of them nauseated me, some of them made me feel high, some had no effect. Most worked but wore off unless I took higher and higher doses, usually reaching the highest healthy dose and being left once again with no help. The meds I am currently taking (klonopin) worked beautifully the first night and I had high hopes. But by the next night they had stopped helping. They relax me to the point of barely being able to walk, but they still don't help me sleep. Breathing techniques and guided relaxation help me fall asleep, but I almost inevitably wake up mid-sleep and struggle to fall asleep again. And being a light sleeper with a boyfriend and dog who both seem unaware of that fact doesn't help matters. I have been in bed for 11 hours almost every night as I should (and at least I haven't been shaming myself for it like I was doing before), but 8 or fewer of those hours are spent actually sleeping. I need something to turn my brain off. I overanalye things constantly, to the point of keeping myself from sleeping.
My emotional breakdowns have not improved. It would be best to ask David how many breakdowns he has seen me have over the past six months. It's hard for me to keep track... they get pretty intense so I generally don't stop in the middle and jot down which one I'm on. But my most recent one was a couple of days ago and it involved a desk. If a desk seems like a trivial thing to get upset over, you don't truly know a hormonal woman, or at least me in particular. The desk in question is a computer desk we did not have room for in the house, so we left it on the porch. Now, we were both well aware of the stringent policies in Denton banning indoor furniture from being displayed outdoors. But we assumed we would be rid of the desk before a problem arose. We were wrong. We got a letter in the mail, right before I took a trip to Wichita Falls to see my (former) pain management doctor, telling us we had 10 days to get rid of the desk. Well, being the worrier I am, I started stressing out about the desk and repeatedly reminded David to post the desk on Craigslist (he did and nobody wanted it) or find someone to haul it away (he did not do that). So, two weeks later we still had the desk and I decided to take matters into my own hands. He no longer had the pictures of the desk, so I went to the porch to take some. But the desk was not assembled. The (very heavy) shelf that goes on top was beside it. When I tried to put the (very heavy) shelf on top I dropped it and it broke in two. So when I again couldn't lift it I decided throwing the pieces of the shelf onto the front lawn would be a fine idea. That got David's attention and he told me to go take a nap. Instead I decided to lie down and sob uncontrollably for about ten minutes straight. And David was completely calm and rational the whole time. He sat beside me and comforted me. I decided not to lift heavy things without help anymore (my hands still hurt from that) and to eat my meals at regular intervals, even when I'm not hungry (I don't know how many times I have to learn that lesson). I think if I had eaten when I should have, I would not have been quite so irrational in my actions or quite so upset.
To summarize: I am eating the things I should, but my stress and anxiety levels are still too high and I need to get better quality sleep.
I am going to stay on course with my diet and do what I can to improve my sleep and relaxation. It's just hard for someone who prefers being busy to have to deal with doing very little to nothing. I basically have (or should have) Garfield's lifestyle right now-- eating several times a day and napping in between. For me, being inactive is more stressful than being overscheduled. I like having my day planned down to the minute. I like having a checklist with all the items checked off. So maybe I should have a checklist that has RELAX and SLEEP as two of the top items.
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