Today, I am in sympathy with that toddler. You know, the one who throws herself down on the floor, crying and screaming that she can't wear *that*, that it's WRONG! Leaving you perplexed because it's something she's worn many times before and never had an issue with. And when you try to ask her what the problem is, all she can say is that it's WRONG. For today, I am that toddler. You see, my pants were WRONG today. While I resisted the urge to throw myself down on the ground and have a tantrum (knowing that to do so would mean I would definitely pay for it in aches later), the longer I wore them, the WRONGER they were.
Like the toddler, I was unable exactly to pinpoint what that WRONGNESS was. They weren't too small but they felt uncomfortable around my middle. They weren't too big but they rubbed irritatingly loosely around my calves when I walked. They made my legs itch. The didn't feel right. In other words, they were wrong. This wrongness first asserted itself as I was driving in to drop my son off at school and go on to work. Meaning I was on a schedule that didn't allow for me to leisurely turn myself around and return home to change. No, I had to carry on and deposit the child at school so that he was on time. Now, if we lived in the neighborhood where he attends school and I work, I could have gone back home to change at this point. But we don't. No, we live 25 miles away.
So I went on to work. Where my day further deteriorated when I discovered that, no, I did not have the envelope that has our important documents (birth and marriage certificates) tucked away in my office at work. I knew it was kind of a far fetched hope but I need them and they aren't in the spot they belong in at home. So I'm stressed about finding them because I must provide a marriage certificate to prove my husband is my husband and a birth certificate to prove my son is my son, in a process known as "Verifying Your Dependents", that is suddenly required by the provider of our health insurance here at work.
My pants are growing ever WRONGER as I attempt to work. I decide that I'll get the second piece of documentation needed to verify my husband, a bill or statement from within the past 60 days that has both of our names on it, the date, and our current mailing address. No problem, I think. I'll just download our most recent mortgage statement and there you go! We have mortgages on two houses with the same company and they send me emails each month telling me that my statements are available to view (we went paperless a couple of years ago so everything is electronic). Now, I feel no compelling need to login each month and look at the depresssingly high number that is the amount still owed on each mortgage. So I don't. I mean, would you?
Anyway, I went to the website and attempted to login. Only it was telling me that something wasn't right with either my username or password. I try again, attempting a different password. Nope. Again, trying a different username. Nothing. I try every possible permutation of username and password I can think of and nothing works. So I click on the link that says, "Forgot username". It asks me for my email, which I provide, and then asks a security question. Only the security question it asks me is "What was the name of your childhood doctor?" I'm a little perplexed because I certainly don't remember ever selecting *that* as a security question but I type in the answer. Doesn't work. I try it with a capital letter. Nothing. I try misspelling it. Nope.
Okay, I'm sure I had the username correct. I'll try the "Forgot password" link. I click on that and it asks me for my username, which I provide. It then asks me a different security question. "Who is your favorite athlete?" Huh? WTH? I don't *have* a favorite athlete. There is no way, no how that I would have ever have selected that as a security question. I mean, I can't even come up with anything to try. Nothing. Finally, I logged enough unsuccessful attempts to login that it tells me I now need to call. I call the number supplied. The first thing it asks me for is my account number. Which I don't have because I do everything paperlessly and they only include the last four digits on the email. Luckily, they give me the option of saying "I don't have this."
Eventually, I am turned over to "Charlotte" for help. Since I do not have my account number, I must give her three drops of blood, the promise of any forthcoming children, my full social security number, etc. She accesses my account. "Oh. Huh." She pauses. "When was the last time you logged on?" "Before today? I'm not sure. Maybe last year when I needed to access the end of the year documents to do my taxes." This, evidently, is not good news. Because if you don't log in "frequently" (she didn't specify exactly what that was but evidently it's more than once a year), they deactivate your login. Which was why I was unable to make it work.
So I had to "enroll" all over again, while on the phone with her so that she could provide me with the necessary account numbers to link my two mortgage accounts to my login info. What felt like 9 hours later, I was able to access the information I needed and upload the necessary document with both my husband's and my name on it. By this time, my pants were so WRONG I could hardly stand it. There was really nothing left to do but decide where I was going to go to buy a new pair of pants. I decided on Target.
Naturally, I could not find a pair of navy blue pants to save my life. Because that would have been too easy. I ended up with a pair of black leggings. That did not go with the blue print of my top. So I grabbed a black and gray print blouse. Of course, I was wearing blue/red/green striped shoes. They, btw, were becoming WRONG as well. Because there was a rock or something in them that I couldn't locate to get out. Yeah, that wasn't going to work. So off to the shoe department I go. Luckily, I found *one* pair of casual black canvas slipons in my size. I check out and hit the bathroom, unable to wait any longer to get out of the WRONG pants and shoes.
I still don't know where the marriage and birth certificates I need are hiding in my home, which is definitely causing me stress, but at least my clothes aren't WRONG anymore. And it's amazing what a difference that has made. So, I have a lot more sympathy for that toddler now. If it's yours, maybe give them a break and pick something else for them to wear. It could make the whole day go better!
Thursday, January 29, 2015
Tuesday, January 27, 2015
Titles are for wimps
Okay, that's not true. However, titles are for people feeling more clever and creative than I am at the moment. Because I've got nothing. I am, essentially, brain dead. Is this the "fibro fog" I've heard about? Or is it just plain being tired? Because today, for some reason, I've just been exhausted all day.
I can't blame it on pain levels. They've actually been really low for the best part of the day. But I've felt tired and washed out since I got up this morning. Just not quite really with it. A coworker knocked on my door this morning, to ask how long I'd be in today. I'm not sure if it was the fact that I had to think about it or that she thought I looked out of it but she decided to ask someone else to cover the information desk (we're librarians at a community college) at what would have been the end of my shift. When I finally went to go for my daily walk, I was downstairs and outside before I realized I'd forgotten to change my shoes. So I walked in my boots. Then, after I had been back for an hour or so, I realized I'd forgotten to turn the exercise tracker on my Fitbit app off when I got back.
By 3:30, I'd hit the "stick a fork in me, I'm done" stage and decided to call it a day. The last half hour I'd spent trying to get work done was amazingly frustrating and it just totally overwhelmed me out of the blue. Plus, as I texted my husband, I was either having a hot flash or dying. Although the tendency is to blame everything on fibro, that came on after I'd eaten something (more on some of that below) so it was likely either related to that or it was, indeed, a hot flash. Who can tell? Luckily, I have enough flexibility at work so that I could go ahead and leave a smidge early. Hopefully, tomorrow my brain will be functioning since I'm scheduled to teach a workshop!
I got home and discovered a wonderful little present had arrived from my mother-in-law. She had told me last week to be watching for something to come but, naturally, I had forgotten about it until it actually arrived.
I can't blame it on pain levels. They've actually been really low for the best part of the day. But I've felt tired and washed out since I got up this morning. Just not quite really with it. A coworker knocked on my door this morning, to ask how long I'd be in today. I'm not sure if it was the fact that I had to think about it or that she thought I looked out of it but she decided to ask someone else to cover the information desk (we're librarians at a community college) at what would have been the end of my shift. When I finally went to go for my daily walk, I was downstairs and outside before I realized I'd forgotten to change my shoes. So I walked in my boots. Then, after I had been back for an hour or so, I realized I'd forgotten to turn the exercise tracker on my Fitbit app off when I got back.
By 3:30, I'd hit the "stick a fork in me, I'm done" stage and decided to call it a day. The last half hour I'd spent trying to get work done was amazingly frustrating and it just totally overwhelmed me out of the blue. Plus, as I texted my husband, I was either having a hot flash or dying. Although the tendency is to blame everything on fibro, that came on after I'd eaten something (more on some of that below) so it was likely either related to that or it was, indeed, a hot flash. Who can tell? Luckily, I have enough flexibility at work so that I could go ahead and leave a smidge early. Hopefully, tomorrow my brain will be functioning since I'm scheduled to teach a workshop!
I got home and discovered a wonderful little present had arrived from my mother-in-law. She had told me last week to be watching for something to come but, naturally, I had forgotten about it until it actually arrived.
I was both thrilled and touched to get this Medic Alert bracelet.
The flip side informs that I have fibromyalgia. She thought it would be a good thing for me to have, especially during races. Thanks, Mom!
I compounded the fatigue issue by adding pain to the mix and I have no one to blame but myself. Hubby brought home Chinese food for himself and our son and I made the mistake of eating some even though I knew I shouldn't. See, ever since my gastric bypass, there are certain foods that bother me. For some reason, that includes Chinese food. I have no idea why, since I eat the individual components at other times with no problems. Anyway, because I was tired, and the food both looked and smelled good, I told myself that a little wouldn't hurt and it was a lot easier to put a spoonful of rice and a couple of pieces of chicken in a bowl than to figure something else out and make it for myself.
I was wrong. I hadn't even finished the little bit I had in my bowl when the stomach pain and feeling like I wanted to bring it back up started. I just hate that feeling. It's not nausea but the feeling that if you just got rid of it, you'd feel much better and not hurt any more. Most of the time, I'm able to keep it down,as I did tonight. I did decide, however, that it was time to call it a night. I took a nice hot shower because by then my back and neck were aching. I am now contemplating whether 7:15 is late enough to go to sleep...
Saturday, January 24, 2015
Fibro and the flu
I spent most of last week out with the flu. It's a like like having a fibro flare, only with the added bonus of running a fever. So, for those of you who don't have fibromyalgia but have experienced the flu, you have a small glimpse of what having fibro is like. You know that feeling like you've been run over by a truck and your whole body hurts? Where your head weighs nine hundred pounds and it's impossible to lift it off the pillow? Where just thinking about having to move enough to get up and go to the bathroom is so exhausting that you put it off until you can't possibly put it off any longer?
That, my friend, is what having fibromyalgia is like. Only, unlike the flu, fibromyalgia isn't going to go away after a few days or a week. No, it's set up permanent residence in your body. Granted, for those of us who have managed to find medication or a combination of therapies that helps us keep our pain under control, life isn't like that every day. Thank heavens. Unfortunately, because it's a chronic condition, your body can turn on you at any time and return you to that state for anywhere from a few hours to a few weeks.
It's called a flare and it's pretty much a fact of life for anyone dealing with a chronic condition of any kind. It sucks. Mostly because, for most of us, it seems to hit without rhyme nor reason. Suddenly, it will just be there, out of the blue. It's especially discouraging if you've been having a good streak where your pain levels are under control and you've actually been functioning as a fairly normal human being. Believe me, there is nothing we'd like more than to pretend that this diagnosis was a mistake and that we ARE normal. I'm sure I'm not the only one who thinks that on good days.
The mind. It can be both our biggest defense and our biggest adversary. It can boost us up and keep us going when it feels like there's no way we can go on. Or it can defeat us and tell us that there's no use trying because things are never going to be any better and it's always going to be like this. Much like a race, whether it's a 5k or an ultra marathon, how successful you are in dealing with a chronic condition is mental. There will always be good miles and painful miles, good days and painful ones. The trick is to keep yourself going through the bad ones, the ones where you want to quit, so that you can get to the next good day or good mile.
I guess what I'm saying is that it's easy to get discouraged and frustrated because dealing with a chronic condition isn't what you had planned for this life. But hang tough and stick it out because things will, hopefully, eventually, get better. Me? Just like in a race, I'd much rather be DFL (dead effing last) than DNF (did not finish). So I will keep moving forward, even through the slow and painful times, because if life is a race, I want to at least have started it and given it my all.
When I went out to walk my mile yesterday, I made myself do a total of four miles, because I could. That was one for yesterday and one for each day I missed doing a mile because I was down with the flu. No, it was not the easiest four miles I've ever done. But it was also not the hardest. And I rejoiced in the fact that I could keep moving forward. I'm probably a bit stiffer and achier today than I would have been if I'd done less. But I'm also happier that I pushed myself and did it.
Next Sunday I'll be heading to Huntington Beach to do the Surf City Half Marathon. I'm dedicating those miles to my big sister, who was just diagnosed with ovarian cancer and is currently recovering from surgery she underwent to remove the large ovarian mass and her reproductive organs. In a few weeks, she'll start chemotherapy as a precautionary measure. None of that is or will be easy. But she will keep moving forward and doing what she needs to do to get to the next good day because that's the way she's wired. I can do no less. Love you, sis.
That, my friend, is what having fibromyalgia is like. Only, unlike the flu, fibromyalgia isn't going to go away after a few days or a week. No, it's set up permanent residence in your body. Granted, for those of us who have managed to find medication or a combination of therapies that helps us keep our pain under control, life isn't like that every day. Thank heavens. Unfortunately, because it's a chronic condition, your body can turn on you at any time and return you to that state for anywhere from a few hours to a few weeks.
It's called a flare and it's pretty much a fact of life for anyone dealing with a chronic condition of any kind. It sucks. Mostly because, for most of us, it seems to hit without rhyme nor reason. Suddenly, it will just be there, out of the blue. It's especially discouraging if you've been having a good streak where your pain levels are under control and you've actually been functioning as a fairly normal human being. Believe me, there is nothing we'd like more than to pretend that this diagnosis was a mistake and that we ARE normal. I'm sure I'm not the only one who thinks that on good days.
The mind. It can be both our biggest defense and our biggest adversary. It can boost us up and keep us going when it feels like there's no way we can go on. Or it can defeat us and tell us that there's no use trying because things are never going to be any better and it's always going to be like this. Much like a race, whether it's a 5k or an ultra marathon, how successful you are in dealing with a chronic condition is mental. There will always be good miles and painful miles, good days and painful ones. The trick is to keep yourself going through the bad ones, the ones where you want to quit, so that you can get to the next good day or good mile.
I guess what I'm saying is that it's easy to get discouraged and frustrated because dealing with a chronic condition isn't what you had planned for this life. But hang tough and stick it out because things will, hopefully, eventually, get better. Me? Just like in a race, I'd much rather be DFL (dead effing last) than DNF (did not finish). So I will keep moving forward, even through the slow and painful times, because if life is a race, I want to at least have started it and given it my all.
When I went out to walk my mile yesterday, I made myself do a total of four miles, because I could. That was one for yesterday and one for each day I missed doing a mile because I was down with the flu. No, it was not the easiest four miles I've ever done. But it was also not the hardest. And I rejoiced in the fact that I could keep moving forward. I'm probably a bit stiffer and achier today than I would have been if I'd done less. But I'm also happier that I pushed myself and did it.
Next Sunday I'll be heading to Huntington Beach to do the Surf City Half Marathon. I'm dedicating those miles to my big sister, who was just diagnosed with ovarian cancer and is currently recovering from surgery she underwent to remove the large ovarian mass and her reproductive organs. In a few weeks, she'll start chemotherapy as a precautionary measure. None of that is or will be easy. But she will keep moving forward and doing what she needs to do to get to the next good day because that's the way she's wired. I can do no less. Love you, sis.
Sunday, January 18, 2015
Movement counts
Overall, I've been doing really well with the pledge some friends and I made to walk a mile every day this year. While I may have missed a day or two, I've definitely done at least 7 miles each week. If you believe the ads, moving helps keep fibromyalgia pain away. So, is it the walking or the Cymbalta I've now been on for a month that's been helping keep my pain levels in check? Maybe it's both. I really don't know and I'm not sure it really matters. All I know is that something seems to be helping and that's all I care about.
On the side of "moving helps", I'll offer up my experiences of both yesterday and today. Yesterday, I was a complete slug. I spent the day sitting in my recliner, feet up, mainlining episodes of Veronica Mars. In a side note, my friend tells me I'm like a decade late to the Veronica Mars love fest. I care not. I am thoroughly enjoying my binge watching. And can I just say that Sheriff Lamb is a complete and utter douchebag? Anyway, back to yesterday. After an entire day of doing nothing but play on my iPad or crocheting while watching tv, I started to hurt. First, my legs started to ache. Then my hips and lower back joined the party, followed by my shoulders and arms. I ended up having to take a pain pill for the first time in days.
I will admit that I would have liked nothing more than to just sit and mainline more Veronica today. However, I forced myself to get dressed and go get some miles in. Since I have a half marathon coming up and wanted to get in at least 5-6 miles, I did take a pain pill before I headed out. That's something I typically do if I'm planning on doing more than a couple of miles because of the osteoarthritis in my spine. I headed out, thermos of tea (my preferred drink, decaf and sweetened with Splenda) in one hand and iPhone in the other.
I've been listening to this podcast called Serial that was recommended by a runner friend. It's about taking another look at a murder case, involving two high school students, from 1999. When I started out today, I was halfway through the second episode. I'm now nearly through episode 5. It's definitely a great way to pass the time while walking! Not only did I get in 7 miles while I was listening, but I think it was the fastest 7 miles I've ever done, averaging less than 16 minutes a mile. I followed that up by taking my puppies out for a walk while I did my cool down. I left my phone at home so I'm not sure exactly how far we went but it was probably somewhere between 3/4 to a mile.
It's now more than three hours later and I'm still feeling good. I think I've earned the right to spend some time with Veronica and her friends at Hearst College. It should be interesting to see what my pain levels are like tomorrow. I'll keep you updated.
Oh, and speaking of updates, if anyone is wondering how things turned out with the kiddo, his fever, and the trip to Disney, I'm happy to report that he woke up fever free on Friday. I let him go and checked in with him a couple of times during the day and the band director kept tabs on him as well. He's remained fever free and seems to have suffered no ill effects from the day. Plus, he's told me a couple of times how glad he is that I let him go and what a good time he had. So it all worked out okay.
On the side of "moving helps", I'll offer up my experiences of both yesterday and today. Yesterday, I was a complete slug. I spent the day sitting in my recliner, feet up, mainlining episodes of Veronica Mars. In a side note, my friend tells me I'm like a decade late to the Veronica Mars love fest. I care not. I am thoroughly enjoying my binge watching. And can I just say that Sheriff Lamb is a complete and utter douchebag? Anyway, back to yesterday. After an entire day of doing nothing but play on my iPad or crocheting while watching tv, I started to hurt. First, my legs started to ache. Then my hips and lower back joined the party, followed by my shoulders and arms. I ended up having to take a pain pill for the first time in days.
I will admit that I would have liked nothing more than to just sit and mainline more Veronica today. However, I forced myself to get dressed and go get some miles in. Since I have a half marathon coming up and wanted to get in at least 5-6 miles, I did take a pain pill before I headed out. That's something I typically do if I'm planning on doing more than a couple of miles because of the osteoarthritis in my spine. I headed out, thermos of tea (my preferred drink, decaf and sweetened with Splenda) in one hand and iPhone in the other.
I've been listening to this podcast called Serial that was recommended by a runner friend. It's about taking another look at a murder case, involving two high school students, from 1999. When I started out today, I was halfway through the second episode. I'm now nearly through episode 5. It's definitely a great way to pass the time while walking! Not only did I get in 7 miles while I was listening, but I think it was the fastest 7 miles I've ever done, averaging less than 16 minutes a mile. I followed that up by taking my puppies out for a walk while I did my cool down. I left my phone at home so I'm not sure exactly how far we went but it was probably somewhere between 3/4 to a mile.
It's now more than three hours later and I'm still feeling good. I think I've earned the right to spend some time with Veronica and her friends at Hearst College. It should be interesting to see what my pain levels are like tomorrow. I'll keep you updated.
Oh, and speaking of updates, if anyone is wondering how things turned out with the kiddo, his fever, and the trip to Disney, I'm happy to report that he woke up fever free on Friday. I let him go and checked in with him a couple of times during the day and the band director kept tabs on him as well. He's remained fever free and seems to have suffered no ill effects from the day. Plus, he's told me a couple of times how glad he is that I let him go and what a good time he had. So it all worked out okay.
Thursday, January 15, 2015
Parenting - What they don't tell you
Nothing prepares you for being a parent except actually becoming one. But no one ever tells you how stressful it really is. In fact, I'm becoming more and more convinced that if people knew how stressful being a parent actually is, a lot less of them would have children. Each stage of a child's life presents its own set of challenges and issues. You remain convinced that things will get easier when they're older. The reality is, however, that you are just presented with a new set of things to worry over and stress about as your child goes from one stage of life to the next.
Now, don't get me wrong. Certain things do, indeed, get easier. I mean, let's face it, it's a relief when your child is potty trained and out of diapers. And when you no longer have to wipe their bottom for them, it's even better. Then when you reach the stage where they can get up and function without you in the morning and you can finally sleep in again? Pure heaven! Naturally, though, each of the things that get easier is balanced out by new issues, like choosing the right school and getting homework done.
So, why am I focusing on the stresses of parenthood now? Because it's been a week filled with difficult decisions and then second guessing those decisions and then second guessing the second guessing. You see, our son, who is 15 and a sophomore in high school, has been sick this week. Keeping him home on Monday was a no-brainer because he was obviously ill and running a fever. He claimed to be better on Tuesday so I let him go to school, although I second guessed myself the whole drive there, listening to him cough. I checked with him in the afternoon, to see how he was doing, and he said he was fine and was going to hang out with friends until I got off work at 5. Then when I picked him up, it was obvious that he was still sick and was running a fever again.
Needless to say, I kept him home on Wednesday and called the doctor since he'd now been running a fever since Sunday night. When we go in on Wednesday afternoon, she confirms my suspicions that he has the flu. Of course, it's now too late in the game for an antiviral to do any good. He claims he's feeling better already. She makes her recommendations for getting his fever down and says to definitely keep him home on Thursday (today) and to play Friday by ear. That if he wasn't running a fever, he could go to school. And this is my biggest stressor.
If it was any other week, I could, indeed, play it by ear and decide Friday morning whether to send him to school or not. But it's this week. And this week includes his Advanced Jazz Band performance at Disney California Adventure on Friday. A day with a 6:30 am call time and an 11 pm pickup time. Meaning a really long, active, day spent outside. To add to the stress, they need to know if he's going to be there because if he's not, they need to hire a bass player for the performance. Needing to make a decision and stressing because my husband will be out of town for a race and we need to pick up at the park rather than school (meaning 50 miles of driving each way, in the dark, rather than just 25) and factoring in that he was running a fever this morning, I said he wasn't going.
Needless to say, this immediately made me feel like I was just cast as meanest mother in the universe. Especially when the pleading started when I told him. He was FINE, he insisted, and would be even better tomorrow. He wasn't even running a fever any more, he said. Stress, stress, stress. Why does the performance have to be this week? Even if he is better, aka no longer contagious, what else would he be exposed to if he went? To compound things even more, every time I had him take his temp, it was normal. Ugh. Why is it so hard to be a parent? No one ever said you'd be making decisions that would break your child's heart, which would then break yours.
After having a normal temperature for most of the day, he finally convinced me that he was well enough to go. I caved when a good friend, whose daughter is also in jazz band, said she would pick him up at the park and I could get him at her house, taking me back down to a 50 mile round trip. I sent a text to the band director, to make sure it was ok, and he was pleased. Great, everything is all arranged, we just need to fill out permission slip in the morning when we drop him off. I go tell him he needs to call it a night since tomorrow is going to be a big day and have him take his temp.
It's 99.4.
Just go ahead and shoot me now because I'm back to not knowing what the hell to do about tomorrow.
Now, don't get me wrong. Certain things do, indeed, get easier. I mean, let's face it, it's a relief when your child is potty trained and out of diapers. And when you no longer have to wipe their bottom for them, it's even better. Then when you reach the stage where they can get up and function without you in the morning and you can finally sleep in again? Pure heaven! Naturally, though, each of the things that get easier is balanced out by new issues, like choosing the right school and getting homework done.
So, why am I focusing on the stresses of parenthood now? Because it's been a week filled with difficult decisions and then second guessing those decisions and then second guessing the second guessing. You see, our son, who is 15 and a sophomore in high school, has been sick this week. Keeping him home on Monday was a no-brainer because he was obviously ill and running a fever. He claimed to be better on Tuesday so I let him go to school, although I second guessed myself the whole drive there, listening to him cough. I checked with him in the afternoon, to see how he was doing, and he said he was fine and was going to hang out with friends until I got off work at 5. Then when I picked him up, it was obvious that he was still sick and was running a fever again.
Needless to say, I kept him home on Wednesday and called the doctor since he'd now been running a fever since Sunday night. When we go in on Wednesday afternoon, she confirms my suspicions that he has the flu. Of course, it's now too late in the game for an antiviral to do any good. He claims he's feeling better already. She makes her recommendations for getting his fever down and says to definitely keep him home on Thursday (today) and to play Friday by ear. That if he wasn't running a fever, he could go to school. And this is my biggest stressor.
If it was any other week, I could, indeed, play it by ear and decide Friday morning whether to send him to school or not. But it's this week. And this week includes his Advanced Jazz Band performance at Disney California Adventure on Friday. A day with a 6:30 am call time and an 11 pm pickup time. Meaning a really long, active, day spent outside. To add to the stress, they need to know if he's going to be there because if he's not, they need to hire a bass player for the performance. Needing to make a decision and stressing because my husband will be out of town for a race and we need to pick up at the park rather than school (meaning 50 miles of driving each way, in the dark, rather than just 25) and factoring in that he was running a fever this morning, I said he wasn't going.
Needless to say, this immediately made me feel like I was just cast as meanest mother in the universe. Especially when the pleading started when I told him. He was FINE, he insisted, and would be even better tomorrow. He wasn't even running a fever any more, he said. Stress, stress, stress. Why does the performance have to be this week? Even if he is better, aka no longer contagious, what else would he be exposed to if he went? To compound things even more, every time I had him take his temp, it was normal. Ugh. Why is it so hard to be a parent? No one ever said you'd be making decisions that would break your child's heart, which would then break yours.
After having a normal temperature for most of the day, he finally convinced me that he was well enough to go. I caved when a good friend, whose daughter is also in jazz band, said she would pick him up at the park and I could get him at her house, taking me back down to a 50 mile round trip. I sent a text to the band director, to make sure it was ok, and he was pleased. Great, everything is all arranged, we just need to fill out permission slip in the morning when we drop him off. I go tell him he needs to call it a night since tomorrow is going to be a big day and have him take his temp.
It's 99.4.
Just go ahead and shoot me now because I'm back to not knowing what the hell to do about tomorrow.
Tuesday, January 13, 2015
Lets talk about nerve pain
Several years ago, after a particularly long and painful bout of sciatica, I was eventually diagnosed with peripheral neuropathy in my right foot. The podiatrist who eventually made the diagnosis actually told me which nerve it was that was being affected. Of course, I no longer remember that tidbit of information, although I am sure it still exists somewhere in the depths of my brain. Meanwhile, I can still tell you the original telephone number of the house I grew up in.
If you know anyone who has ever experienced nerve pain, I'm sure they will attest to the insidiousness nature of this pain. Really, there is nothing else quite like it. And it sucks, because there really isn't anything that knocks it on its ass and makes it go away. The best you can hope for is a combination of things that will serve to take the edge off. I remember back when it first started, I would get so exhausted from being unable to sleep that I would be begging my husband to just cut my foot off. It seriously seemed like a viable option at about 4 am.
Eventually, I discovered that the muscle relaxer I had purchased on a trip to Canada (Robaxacet, a combination of Tylenol and methocarbomol, are -or at least were - readily available over-the-counter there but prescription only here) would take the edge off enough so that I could fall asleep. At different times, the podiatrist tried a number of different approaches, including a shot of cortisone in the side of my foot when things were particularly bad and I had a big trip planned. He also tried me on gabapentine, the generic version of Neurontin, because some people had gotten relief with that. I, however, had a spectacularly bad reaction to it (which is why my rheumatologist does not recommend I ever try Lyrica). As a last resort, he prescribed Lidoderm patches.
Those patches, out of everything I've tried, including a number of natural and homeopathic remedies, have been the most beneficial in taking the edge off of the constant tingling, pins and needles, being repeatedly stung by bees, burning sensation in my foot and allowing me to sleep and function as a relative normal human being. Like everything else, these have now gone generic and I find them lacking in different ways. First and foremost, I don't think they're as effective. Secondly, they do not adhere as well to the skin and have been known to roll off completely during the night, if I toss and turn a lot. That being said, the advantage is that they don't leave an adhesive residue on your foot that practically takes a nuclear explosion to get off and that everything sticks to, leaving you with what looked like a hairy dirt patch on your foot.
I am lucky because, these days, I can go weeks, sometimes months, without having this particular pain flare up. Unfortunately, it has chosen now to flare up and none of my usual tricks are working. The past two nights, I've gotten it dulled enough to fall asleep only to wake up a few hours later with my foot zinging away. If I'm lucky, I can take another muscle relaxer and only be up for a couple of hours with it. If I'm not lucky, I never do get back to sleep and end up not only cranky but more sensitive to all kinds of pain. I'm sincerely hoping that this neuropathy flare is short and ready to go away now because I'm already tired of dealing with it. I'm also hoping that once I fall asleep tonight, I can stay that way.
Anybody else notice that you're more sensitive to all kinds of pain now? It's kind of like the fibromyalgia amplifies and turns up the volume for all kinds of pain. Sadly, people with fibro tend to also have other pain related conditions, like neuropathy, arthritis of one kind or another, etc. when I read what some people go through, I actually feel like I've gotten off lightly so far. Here's hoping it stays that way!
If you know anyone who has ever experienced nerve pain, I'm sure they will attest to the insidiousness nature of this pain. Really, there is nothing else quite like it. And it sucks, because there really isn't anything that knocks it on its ass and makes it go away. The best you can hope for is a combination of things that will serve to take the edge off. I remember back when it first started, I would get so exhausted from being unable to sleep that I would be begging my husband to just cut my foot off. It seriously seemed like a viable option at about 4 am.
Eventually, I discovered that the muscle relaxer I had purchased on a trip to Canada (Robaxacet, a combination of Tylenol and methocarbomol, are -or at least were - readily available over-the-counter there but prescription only here) would take the edge off enough so that I could fall asleep. At different times, the podiatrist tried a number of different approaches, including a shot of cortisone in the side of my foot when things were particularly bad and I had a big trip planned. He also tried me on gabapentine, the generic version of Neurontin, because some people had gotten relief with that. I, however, had a spectacularly bad reaction to it (which is why my rheumatologist does not recommend I ever try Lyrica). As a last resort, he prescribed Lidoderm patches.
Those patches, out of everything I've tried, including a number of natural and homeopathic remedies, have been the most beneficial in taking the edge off of the constant tingling, pins and needles, being repeatedly stung by bees, burning sensation in my foot and allowing me to sleep and function as a relative normal human being. Like everything else, these have now gone generic and I find them lacking in different ways. First and foremost, I don't think they're as effective. Secondly, they do not adhere as well to the skin and have been known to roll off completely during the night, if I toss and turn a lot. That being said, the advantage is that they don't leave an adhesive residue on your foot that practically takes a nuclear explosion to get off and that everything sticks to, leaving you with what looked like a hairy dirt patch on your foot.
I am lucky because, these days, I can go weeks, sometimes months, without having this particular pain flare up. Unfortunately, it has chosen now to flare up and none of my usual tricks are working. The past two nights, I've gotten it dulled enough to fall asleep only to wake up a few hours later with my foot zinging away. If I'm lucky, I can take another muscle relaxer and only be up for a couple of hours with it. If I'm not lucky, I never do get back to sleep and end up not only cranky but more sensitive to all kinds of pain. I'm sincerely hoping that this neuropathy flare is short and ready to go away now because I'm already tired of dealing with it. I'm also hoping that once I fall asleep tonight, I can stay that way.
Anybody else notice that you're more sensitive to all kinds of pain now? It's kind of like the fibromyalgia amplifies and turns up the volume for all kinds of pain. Sadly, people with fibro tend to also have other pain related conditions, like neuropathy, arthritis of one kind or another, etc. when I read what some people go through, I actually feel like I've gotten off lightly so far. Here's hoping it stays that way!
Friday, January 9, 2015
An itch to scratch
You know what pain pills are good for? Pain. You know what they're not good for? Itching. Although, in a way, itching is its own kind of pain. Especially when it's everywhere and no amount of scratching does anything to relieve it. Like so much about fibromyalgia, there's not really any rhyme nor reason to the itching. Your body just decides it's going to itch and there's not really anything you can do about it.
Sometimes, it's one little spot that will decide to itch. Usually, this spot is centered somewhere that scratching is completely ineffective under the best of circumstances, like the edge of your thumb or the bottom of your foot. I mean, really, is there anything more annoying than an itch on the bottom of your foot? Talk about impossible to scratch! I have yet to determine if that isolated perpetually itching spot is more or less annoying than the roving, complete body itch.
Right now, I'm leaning toward the roving, complete body itch being the more irritating and frustrating to deal with. Largely because that's what I've been dealing with for the past few hours. My legs, my arms, a spot on the lower right side of my back, my right palm near my ring finger, the left side of my neck, the top of my head...they all itch right now. And no amount of scratching brings any relief.
The first time this happened, a few months before I was diagnosed, I thought I was having an allergic reaction to something. I'd been working with cart loads of books so I figured either the dust was just getting to me or that there was something on one of them I was reacting to. It was so bad that I left work and went home to shower, dose myself with Benadryl, and rub Eucerine Skin calming lotion all over myself. I kept waiting for a rash or hives to develop but they never did. I've since discovered that it's just another symptom of fibromyalgia. Because, you know, all over pain and fatigue isn't enough.
I had a routine dental exam and cleaning today so naturally I'm wondering if that's what triggered today's pain flare and this evening's itching. Because other than the usual morning stiffness when I first got up today, things had been going pretty well. It wasn't until I was back home and a few hours had passed that I started having issues. At one point, my arms ached so bad I could hardly lift them, accompanied by stabbing pains in both wrists. Luckily, I have Fridays off so I at least didn't have to worry about the pain interfering with work. You've got to find the silver lining in the cloud, after all!
Now, I think I'll see if I have any of those Benadryl left and take a couple and call it a night. After all, as Scarlett would say, tomorrow is another day.
Sometimes, it's one little spot that will decide to itch. Usually, this spot is centered somewhere that scratching is completely ineffective under the best of circumstances, like the edge of your thumb or the bottom of your foot. I mean, really, is there anything more annoying than an itch on the bottom of your foot? Talk about impossible to scratch! I have yet to determine if that isolated perpetually itching spot is more or less annoying than the roving, complete body itch.
Right now, I'm leaning toward the roving, complete body itch being the more irritating and frustrating to deal with. Largely because that's what I've been dealing with for the past few hours. My legs, my arms, a spot on the lower right side of my back, my right palm near my ring finger, the left side of my neck, the top of my head...they all itch right now. And no amount of scratching brings any relief.
The first time this happened, a few months before I was diagnosed, I thought I was having an allergic reaction to something. I'd been working with cart loads of books so I figured either the dust was just getting to me or that there was something on one of them I was reacting to. It was so bad that I left work and went home to shower, dose myself with Benadryl, and rub Eucerine Skin calming lotion all over myself. I kept waiting for a rash or hives to develop but they never did. I've since discovered that it's just another symptom of fibromyalgia. Because, you know, all over pain and fatigue isn't enough.
I had a routine dental exam and cleaning today so naturally I'm wondering if that's what triggered today's pain flare and this evening's itching. Because other than the usual morning stiffness when I first got up today, things had been going pretty well. It wasn't until I was back home and a few hours had passed that I started having issues. At one point, my arms ached so bad I could hardly lift them, accompanied by stabbing pains in both wrists. Luckily, I have Fridays off so I at least didn't have to worry about the pain interfering with work. You've got to find the silver lining in the cloud, after all!
Now, I think I'll see if I have any of those Benadryl left and take a couple and call it a night. After all, as Scarlett would say, tomorrow is another day.
Wednesday, January 7, 2015
Let's talk about pain, shall we?
Having fibromyalgia, pain is something that I think about a lot. Mostly because it's a constant companion in my life these days. I was chatting with one of my best friends about this just yesterday, in fact. She asked me if everything hurt, which is kind of a complicated question. I had to stop to think and decide how to answer. At the time, I was having a pretty good day. So the most basic answer was "No." But that doesn't really give the full picture. What I told her was, "No, not everything hurts. But there's never a time when *something* doesn't hurt." Which she said made sense.
I think pain is something that most people have a hard time understanding. It's not usually something that's visible to the naked eye. And, let's face it, most types of pain are things that eventually go away. That broken bone or sprain heals and stops hurting. That headache goes away. So it's normal for them to expect the pain from fibromyalgia to go away, too. After all, isn't that what the medication is for? To make it so that you don't hurt? That's what the ads you see on television seem to say, anyway. The reality is that it's not nearly that simple.
Yes, there are now medications approved to help treat fibromyalgia pain. Three of them, actually, have now been approved by the FDA specifically for that reason. What people don't understand, though, is that these medications don't eradicate the pain caused by fibromyalgia. What they do, under the best of circumstances, is to take that pain down to a manageable level, a level that enables you to still function on a day to day basis. For example, since I started the Cymbalta and got up to the full dose of 60 mg a day, my pain levels are generally somewhere between 2-4 on the pain scale. For me, this is a manageable and tolerable level that still allows me to function. Being at a 0 on the pain scale is something that I can't even really fathom at this point. It's been a really long time since I've been there and I no longer remember what it's like to not hurt somewhere.
Today, however, I woke up in a flare (when your pain levels and symptoms increase, in spite of medication and your best coping techniques) and started out the day at about a 7 on that pain scale. Today's pain is centered around my lower back and hips and radiates down my legs, making them feel weak and achy and unwilling to move or carry me about. I would have liked nothing more than to take a pain pill and crawl back into bed or kick back in my recliner and let it take me back down to that manageable 2-4 level. Unfortunately, I missed so much work in the fall, when I was going through trying to be diagnosed, that I feel incredibly guilty for any time I take off now that the diagnosis has come in and I'm on medication.
So, I forced myself to get ready for work, drove the 25 miles from home (most mornings that's about 40 minutes in the car), dropped my son off at the high school and continued on to work. I really don't like to take pain medication when I'm at work but as the alternative is to stay home when I'm at a high pain level, I figure it's the lesser of two evils. It's also a commitment that I'm going to stay at work for at least 3 hours because once I take that little prescription pill, I know I shouldn't be driving for at least that long. Plus, that gives me enough time to assess whether it's going to be successful in taking me down to a level where I can still function and get things done at work. Luckily, my schedule today was pretty light, mostly desk work in my office with a couple of meetings thrown in.
I'm now 4 hours into my day and I can tell that my pain meds are beginning their downward slope towards wearing off. I can't say I've been fantastically productive here at work but I have gotten things accomplished and decisions made during a planning meeting. Now, however, it's crunch time. I need to decide how to handle the rest of the day. Isn't there a song that goes "Do I stay or do I go?" That's kind of how I'm feeling right now. My shoulders and neck are beginning to ache and I can feel the start of a headache. I have another meeting later this afternoon that will undoubtedly make my stress levels skyrocket, because this meeting (it's a regular event) always does. Stress, unfortunately, usually exacerbates fibromyalgia pain and flares. Which means that things are likely going to get worse rather than better.
That last paragraph sums up a lot of what living with fibromyalgia is like: a constant round of decision making, based on a multitude of criteria. I must be having a bad day because just the thought of having to make a decision, on anything, right now makes me want to cry. If I stay, I'll undoubtedly need to take another pain pill (which I can do at 1:00). Will that be enough to counteract the stress of the meeting that's scheduled for 1:30 - 3:00? If I take that pill at 1, I'm committing to being here for that meeting and to stay until at least 4:00 because it's not safe for me to drive until then. To say I'm feeling overwhelmed at the moment is an understatement. And there's a part of my brain that knows that this shouldn't be overwhelming. But that, too, is part of fibromyalgia. Having things that normally wouldn't bother you or that you wouldn't think twice about become huge, stressful, overwhelming issues.
I still don't know what I'm going to do. But I think I should probably end this post before it deteriorates any further. Sorry about the whining. It was not what I intended when I started writing this a few hours ago.
I think pain is something that most people have a hard time understanding. It's not usually something that's visible to the naked eye. And, let's face it, most types of pain are things that eventually go away. That broken bone or sprain heals and stops hurting. That headache goes away. So it's normal for them to expect the pain from fibromyalgia to go away, too. After all, isn't that what the medication is for? To make it so that you don't hurt? That's what the ads you see on television seem to say, anyway. The reality is that it's not nearly that simple.
Yes, there are now medications approved to help treat fibromyalgia pain. Three of them, actually, have now been approved by the FDA specifically for that reason. What people don't understand, though, is that these medications don't eradicate the pain caused by fibromyalgia. What they do, under the best of circumstances, is to take that pain down to a manageable level, a level that enables you to still function on a day to day basis. For example, since I started the Cymbalta and got up to the full dose of 60 mg a day, my pain levels are generally somewhere between 2-4 on the pain scale. For me, this is a manageable and tolerable level that still allows me to function. Being at a 0 on the pain scale is something that I can't even really fathom at this point. It's been a really long time since I've been there and I no longer remember what it's like to not hurt somewhere.
Today, however, I woke up in a flare (when your pain levels and symptoms increase, in spite of medication and your best coping techniques) and started out the day at about a 7 on that pain scale. Today's pain is centered around my lower back and hips and radiates down my legs, making them feel weak and achy and unwilling to move or carry me about. I would have liked nothing more than to take a pain pill and crawl back into bed or kick back in my recliner and let it take me back down to that manageable 2-4 level. Unfortunately, I missed so much work in the fall, when I was going through trying to be diagnosed, that I feel incredibly guilty for any time I take off now that the diagnosis has come in and I'm on medication.
So, I forced myself to get ready for work, drove the 25 miles from home (most mornings that's about 40 minutes in the car), dropped my son off at the high school and continued on to work. I really don't like to take pain medication when I'm at work but as the alternative is to stay home when I'm at a high pain level, I figure it's the lesser of two evils. It's also a commitment that I'm going to stay at work for at least 3 hours because once I take that little prescription pill, I know I shouldn't be driving for at least that long. Plus, that gives me enough time to assess whether it's going to be successful in taking me down to a level where I can still function and get things done at work. Luckily, my schedule today was pretty light, mostly desk work in my office with a couple of meetings thrown in.
I'm now 4 hours into my day and I can tell that my pain meds are beginning their downward slope towards wearing off. I can't say I've been fantastically productive here at work but I have gotten things accomplished and decisions made during a planning meeting. Now, however, it's crunch time. I need to decide how to handle the rest of the day. Isn't there a song that goes "Do I stay or do I go?" That's kind of how I'm feeling right now. My shoulders and neck are beginning to ache and I can feel the start of a headache. I have another meeting later this afternoon that will undoubtedly make my stress levels skyrocket, because this meeting (it's a regular event) always does. Stress, unfortunately, usually exacerbates fibromyalgia pain and flares. Which means that things are likely going to get worse rather than better.
That last paragraph sums up a lot of what living with fibromyalgia is like: a constant round of decision making, based on a multitude of criteria. I must be having a bad day because just the thought of having to make a decision, on anything, right now makes me want to cry. If I stay, I'll undoubtedly need to take another pain pill (which I can do at 1:00). Will that be enough to counteract the stress of the meeting that's scheduled for 1:30 - 3:00? If I take that pill at 1, I'm committing to being here for that meeting and to stay until at least 4:00 because it's not safe for me to drive until then. To say I'm feeling overwhelmed at the moment is an understatement. And there's a part of my brain that knows that this shouldn't be overwhelming. But that, too, is part of fibromyalgia. Having things that normally wouldn't bother you or that you wouldn't think twice about become huge, stressful, overwhelming issues.
I still don't know what I'm going to do. But I think I should probably end this post before it deteriorates any further. Sorry about the whining. It was not what I intended when I started writing this a few hours ago.
Saturday, January 3, 2015
Happy New Year
I will never understand how pain levels can skyrocket so quickly. I just went from a tolerable 4 to a "Are you freaking kidding me?!?" 7 doing nothing but sitting in my recliner with puppies on my lap. I managed to displace the dogs and get up to find my pain meds. I have now taken my Norco and just need to wait for it to kick in. Fingers crossed that it eases me back down to a tolerable level soon. I know it distresses my husband when the pain causes me to hold my breath and breathe funny. Anyone else have that experience? For me, when I realize that I'm starting to do the breath holding thing because of pain, I know I should be thinking of pain medication.
When I last posted, I was getting ready to do a 72 hour race. It is now on the books. Although I didn't get the 100 miles I was hoping for, I did manage to make my 100k goal. Actually, because the course is just a smidge over 1 mile, I actually got in 101k, or 63 miles. If you don't do that extra lap, you only end up with 99.97k and that was just not acceptable! Since my previous best for 72 hours was 51 miles, I'm happy with the new PR. I think the terrible cold and rain we battled this year impacted me more than the fibro did.
Although I have crewed for my husband and friends at this race for the past few years, this is the first year I actually ran it myself. I can honestly say that the weather was colder and worse than any other year we've been out there. Typically, lows might dip down into the 40s but daytime usually goes up to the 60s, making for comfortable temps for the race. This year, nighttime temps got down below freezing, one day might have made it to 50, there was periodic rain, and I'm pretty sure there was one day that never got out of the 30s. In other words, it was fairly miserable for everyone out there. Most everyone I know who was out there, myself included, found themselves adjusting goals downward, particularly if they were in one of the multi-day events.
I was a little trepidatius about how I would hold up with the fibro and then doubly worried about how the cold would impact my pain levels. Overall, I was relieved that it was less of an issue than I feared. Here's the thing. With fibromyalgia, you get used to being in a certain level of pain pretty much all the time. I'm pretty sure that the same is true, at some level or another, for everyone competing in an ultra. Even the best runners I know will have times during a race where they hurt, often badly, and have to decide whether to grit it out or toss in the towel. Most grit it out. What I found interesting is that it was pretty easy to tell if the pain issues were related to the fibro or to the race. They are
definitely different kinds of pain. The pain that comes from putting in mile after mile are much easier to deal with. There's a sense, after all, that you've "earned" it. Fibro pain is just there, for no reason, and, as I noted at the beginning of this post, can escalate for no reason as well.
The first day went pretty well. I took my pain meds at regular intervals, which kept things under control. I did, however, make a strategic error when I laid down for what was supposed to be a 3 hour sleep break at about 9 pm. Although it wasn't time to take another Norco yet, I had been taking a
Tylenol and a muscle relaxer midway through which got me through until it was time for the next one. For some reason, I did not do this before I laid down. I think I thought that just getting off my feet and stretching out on the bed would be enough. It wasn't. My husband came in two hours later, to take his own break, and when I tried to move my whole body seized up. Even though it was still an hour early, I had him get me a pain pill and stayed in bed until about 5 am.
The second day, it took me a few laps to get everything situated. Once I was happy with my clothes and shoes, things went pretty well, although I was having more general pain issues. Consequently, I was going fairly slowly and stopping more than I wanted but still felt like I was making good progress. Since the rain was expected to come in the next morning, I wanted to log as many miles as I could. I had a couple of nice laps spent with my husband which gave me something to focus on besides the pain. Even then, the pain was only at about a 4-5 - enough so that I was definitely aware of it but not so bad I couldn't keep going. That changed in the space of one 30 minute lap where my pain levels shot straight to an 8. I managed to finish the lap and keep going until I got to our RV, which was less than a quarter mile away along the course. That was at about 8:30 pm and I had wanted to get in two more laps before stopping for the night but that was just not in the cards. I took pain meds and called it a night.
Consequently, I was not where I wanted to be mileage-wise when I started out on Wednesday morning. It was COLD out there but not yet raining beyond a light mist. The temps were just above freezing. I was going pretty slow and stopping after every lap or two to put my feet up. My shoes were just not comfortable. A friend had mentioned the night before that she was wearing her boyfriend's shoes, which were big but much more comfortable than her own. I decided to try a pair of my husband's to see how that went. They were big but felt much better than mine did and got me through several laps. Eventually, I switched to the pair he had just gotten for Christmas and absolutely loved them. I ended up wearing them for the remainder of the race. I kept going that night until the rain started and then called it a night. I wasn't where I really wanted to be but I'd passed into PR territory earlier that day so I knew that even if I didn't get any more miles in, it would still be a new personal record.
In spite of how cozy and warm I was in the RV, I made myself get up and back out on the course around 6 am Thursday morning. That gave me 3 hours to get in the nearly 7 miles I needed to get to 100k. It was definitely doable but there was no time for sitting around. The temps were just below freezing and I kept having to adjust the layers I was wearing. Although I would have really have liked to be able to stop and rest, I was afraid that doing so would keep me from meeting my goal so I only gave myself one 5 minute break after three miles. I really pushed the last few miles and finished with something like 15 minutes to spare, managing to pull up enough to be able to actually run acros the finish line. I'll admit, I was happy to be done!
So, what have I learned about doing ultra endurance events with fibromyalgia? That it's definitely possible. That you might have to adjust your goals and accept that things won't always go as you want them to. That I'm going to keep doing them as long as I'm able to. After I had posted about the pain flare on the second night, my oldest sister suggested that maybe I should find something that wouldn't stress my body as much. I'm not really sure that such a thing exists. As I told her, walking is one of the exercises recommended for fibromyalgia. Of course, they probably don't think about someone doing it for mile after mile for days on end but it's not like I do an ultra every week!
When I last posted, I was getting ready to do a 72 hour race. It is now on the books. Although I didn't get the 100 miles I was hoping for, I did manage to make my 100k goal. Actually, because the course is just a smidge over 1 mile, I actually got in 101k, or 63 miles. If you don't do that extra lap, you only end up with 99.97k and that was just not acceptable! Since my previous best for 72 hours was 51 miles, I'm happy with the new PR. I think the terrible cold and rain we battled this year impacted me more than the fibro did.
Although I have crewed for my husband and friends at this race for the past few years, this is the first year I actually ran it myself. I can honestly say that the weather was colder and worse than any other year we've been out there. Typically, lows might dip down into the 40s but daytime usually goes up to the 60s, making for comfortable temps for the race. This year, nighttime temps got down below freezing, one day might have made it to 50, there was periodic rain, and I'm pretty sure there was one day that never got out of the 30s. In other words, it was fairly miserable for everyone out there. Most everyone I know who was out there, myself included, found themselves adjusting goals downward, particularly if they were in one of the multi-day events.
I was a little trepidatius about how I would hold up with the fibro and then doubly worried about how the cold would impact my pain levels. Overall, I was relieved that it was less of an issue than I feared. Here's the thing. With fibromyalgia, you get used to being in a certain level of pain pretty much all the time. I'm pretty sure that the same is true, at some level or another, for everyone competing in an ultra. Even the best runners I know will have times during a race where they hurt, often badly, and have to decide whether to grit it out or toss in the towel. Most grit it out. What I found interesting is that it was pretty easy to tell if the pain issues were related to the fibro or to the race. They are
definitely different kinds of pain. The pain that comes from putting in mile after mile are much easier to deal with. There's a sense, after all, that you've "earned" it. Fibro pain is just there, for no reason, and, as I noted at the beginning of this post, can escalate for no reason as well.
The first day went pretty well. I took my pain meds at regular intervals, which kept things under control. I did, however, make a strategic error when I laid down for what was supposed to be a 3 hour sleep break at about 9 pm. Although it wasn't time to take another Norco yet, I had been taking a
Tylenol and a muscle relaxer midway through which got me through until it was time for the next one. For some reason, I did not do this before I laid down. I think I thought that just getting off my feet and stretching out on the bed would be enough. It wasn't. My husband came in two hours later, to take his own break, and when I tried to move my whole body seized up. Even though it was still an hour early, I had him get me a pain pill and stayed in bed until about 5 am.
The second day, it took me a few laps to get everything situated. Once I was happy with my clothes and shoes, things went pretty well, although I was having more general pain issues. Consequently, I was going fairly slowly and stopping more than I wanted but still felt like I was making good progress. Since the rain was expected to come in the next morning, I wanted to log as many miles as I could. I had a couple of nice laps spent with my husband which gave me something to focus on besides the pain. Even then, the pain was only at about a 4-5 - enough so that I was definitely aware of it but not so bad I couldn't keep going. That changed in the space of one 30 minute lap where my pain levels shot straight to an 8. I managed to finish the lap and keep going until I got to our RV, which was less than a quarter mile away along the course. That was at about 8:30 pm and I had wanted to get in two more laps before stopping for the night but that was just not in the cards. I took pain meds and called it a night.
Consequently, I was not where I wanted to be mileage-wise when I started out on Wednesday morning. It was COLD out there but not yet raining beyond a light mist. The temps were just above freezing. I was going pretty slow and stopping after every lap or two to put my feet up. My shoes were just not comfortable. A friend had mentioned the night before that she was wearing her boyfriend's shoes, which were big but much more comfortable than her own. I decided to try a pair of my husband's to see how that went. They were big but felt much better than mine did and got me through several laps. Eventually, I switched to the pair he had just gotten for Christmas and absolutely loved them. I ended up wearing them for the remainder of the race. I kept going that night until the rain started and then called it a night. I wasn't where I really wanted to be but I'd passed into PR territory earlier that day so I knew that even if I didn't get any more miles in, it would still be a new personal record.
In spite of how cozy and warm I was in the RV, I made myself get up and back out on the course around 6 am Thursday morning. That gave me 3 hours to get in the nearly 7 miles I needed to get to 100k. It was definitely doable but there was no time for sitting around. The temps were just below freezing and I kept having to adjust the layers I was wearing. Although I would have really have liked to be able to stop and rest, I was afraid that doing so would keep me from meeting my goal so I only gave myself one 5 minute break after three miles. I really pushed the last few miles and finished with something like 15 minutes to spare, managing to pull up enough to be able to actually run acros the finish line. I'll admit, I was happy to be done!
So, what have I learned about doing ultra endurance events with fibromyalgia? That it's definitely possible. That you might have to adjust your goals and accept that things won't always go as you want them to. That I'm going to keep doing them as long as I'm able to. After I had posted about the pain flare on the second night, my oldest sister suggested that maybe I should find something that wouldn't stress my body as much. I'm not really sure that such a thing exists. As I told her, walking is one of the exercises recommended for fibromyalgia. Of course, they probably don't think about someone doing it for mile after mile for days on end but it's not like I do an ultra every week!
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