Back to Blogging

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I haven’t written a post for this blog in a long time. I took a full time job this past school year and I knew that my time would be consumed with my job and managing my fibro symptoms–that’s just how it is when you’re trying to have a full time job and not be overwhelmed with fibromyalgia pain and fatigue. But now it’s summer vacation and I’ve been transferred to a school that I think will be less stressful on my body, so I hope to get back into blogging.

There were two major happenings with regard to my fibromyalgia in last few months. The first was I needed to go onto a new medicine to help me sleep. I was just not able to fall asleep and that made for miserable days that made my transition into full time work even more difficult. I went to my doctor about a month into the school year and she gave me a prescription for Amitripyline. She said it’s one of the preferred treatments for sleeplessness in fibro, which I didn’t know. It’s a tricyclic anti-depressant. It works well to help me sleep, and the anti-depressant nature has certainly helped my mood. So I’m happy with the results of this medication.

The other thing that happened was a bout of chest pain that sent me to the emergency room last fall. I had been having the feeling that I was coming down with something and I figured it was something like a cold or flu. But I ended up waking at  5 a.m. with this terrible twisting, burning pain in the middle of my chest. I had my husband take me to the emergency room. Luckily, there was nothing wrong with my heart. The doctor diagnosed GERD (acid reflux) and gave me a prescription for Prilosec and told me to buy liquid antacid. I had severe pain when swallowing for about a week and didn’t eat very much. He thought I maybe caught some kind of bacterial infection (since I was feeling sick in addition to the chest pain) or maybe had too much stress. But I wondered if it was related to taking naproxen for pain relief pretty much every day for a month. I know that it can cause stomach problems. So I stopped taking the naproxen and haven’t taken it since then. I’ve been limping along with acetaminophen and yoga and warm baths and morning stretches to treat my pain. After a few weeks, I didn’t have any more acid reflux symptoms, so at least that problem was solved. But I’m worried about sometimes having pain that becomes overwhelming–acetaminophen doesn’t really work for me.

Has anyone else had similar issues with naproxen and stomach problems? Any other recommendations for dealing with pain? I feel like my options are tapped out–I’ve had fibro for so many years and have tried so many things I don’t know what else to try.

I’m glad to get back to blogging and I’m going to update more often.

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New job, fewer posts

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I haven’t been able to post in a while because I have a new full time job. I imagine my posting will drop off throughout the fall semester–and probably the spring semester as well–because I’m adjusting to a new schedule and new classes. I wish that wasn’t so, but I have to prioritize my time. And non-work related reading and writing has to go way down if I want to do my job and live a life with fibromyalgia.

I was spoiled for the last three years in that I was able to work part-time, but it’s just not financially good for our family. This new job comes with major benefits–the health insurance alone is worth having this job. I now have a $300 deductible, insurance pays for 80% of everything else after that, I only have to pay $211 per paycheck to get it, and it covers massage therapy. I’m so excited to try massage as a way to help relieve pain. I never did before because it’s expensive, but now I can. It’s so sad that I find myself in this bind–work a full time job to get health insurance that’s worth anything and thus health care that’s worth anything or work part-time and spend more than you afford, even after all of the reforms that came into effect after the Affordable Care Act. I know that working full-time will stress my body and increase my pain, but the benefits are just so appealing I just have to deal with it.

So I’m doing my best to get the rest and yoga and warm baths that I need to help manage the pain and fatigue. And I’m working on accepting that my life will be working, managing my fibro and fitting in time with my husband. And reading for fun and blogging and everything else will just have to wait.

Darn it.

C’est la fibromyalgia

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I’m typing this with aching hands–little shards of pain through the palms and the bottom of the fingers. Probably been spending too much time on the computer. I coated my hands in the pain-relieving muscle balm, but it hasn’t done much. That’s a familiar feeling if you have fibro–your attempts to minimize your pain not doing much.

I’m trying to rush through two books in the next week because I start a new job next Monday–the books are One Good Turn and Started Early,Took My Dog, both by Kate Atkinson. I read her book Case Histories at the start of the month and was hooked on her style. I read another book of hers, When Will There Be Good News?, over Fourth of July weekend. These books feature the sometime private detective Jackson Brodie, who manages to become involved with disappearances and murders all over the U.K. The books are described as murder mysteries, but the author says she doesn’t like to think of her work as belonging to those particular genres, so I will refrain from saying “murder mysteries” or “detective stories.” You don’t have to be a fan of those genres to appreciate her books. They’re just well-written fiction with richly-drawn characters. Atkinson gradually unfolds the mysteries across various story lines and you keep reading because you can’t wait to see how everything ties up together at the end. I started reading Started Early, Took My Dog on Saturday and I’m already 287 pages into it. (Granted, I had a pretty open and flexible schedule over the weekend so I could devote many hours to reading.) I think I can get through it and One Good Turn by the end of the week. I’ll need to since my new job will keep me busy and having a job and having fibromyalgia means I won’t have much time for anything else for at least a few weeks. C’est la vie. C’est la fibromyalgia.

At least turning pages of a good book won’t make my hands hurt any worse.

 

Little Things

1. This past weekend we went out of town and stayed at a hotel. One of the best things about staying in a hotel is hot showers and high shower heads. The shower head in our bathroom is set at a height for someone much shorter than me–I don’t know when the bathroom was last updated, but I know the house was built in the 1950’s and it was made for smaller people. The shower head is at my shoulders, which is okay when I want to stand under the hot water if my legs are hurting me, but not at all helpful if my neck and shoulders hurt and I want to stand under the hot water. And the hot water is usually gone in about six to eight minutes. This is okay on some days, but on some days I want to take a longer shower because the heat does help with some fibromyalgia aches and pains. So it’s wonderful to be a hotel shower with the shower head way above my head and to be able to run the warm water for ten minutes or more. I can just feel the droplets and the heat massaging my muscles and working out some of the aches.

2. I’m trying to adjust to a new sleeping schedule, and I’ve been waking myself up a little bit earlier each day, but I’m having trouble going to sleep earlier, so I’m a little more tired than usual and am feeling some extra creakiness and aches today. If only I was back in the hotel and had that wonderfully high shower head to help me out. I took a soaker bath and it helped, but not that much. My bathtub is also shaped for someone smaller than me so I can’t really get my shoulders and neck underwater. 

Oh, the fun of fibromyalgia.

 

Book Pick: Memory of Water

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I’ve been on a reading kick lately–I’ve read two books since the start of July and am halfway through a third. When I was younger, I could read three books in three days, but with balancing  adult responsibilities and my fibromyalgia, and then the added distraction of the Internet, my reading time is less than I would like it to be. But right now I’m not doing any paid work, so I have a little more time on my hands to read books.memory of water

The first book I read this month is Memory of Water by Emmi Itaranta, first published in Finland. I learned about it from a post on the website io9. I think you would call it speculative fiction. It’s set in the future, but not the shiny space-faring future (or even the gritty space-faring future) of sci-fi and there’s little science, hard or soft. It’s set in the bleak future a few hundred years from now–after the oil has run out and the coastal cities have been flooded from the rising seas. The main character, Noria Kaitio, is a  young tea master in a small village in the Scandinavian Union, which is occupied by New Qian. Water is scarce and a repressive army punishes water criminals. They army controls everyone’s access to it; Noria and her father believe that you shouldn’t own water. Noria comes into conflict with the army over her use of water and then finds out secrets about where to access water and this drives the central conflict of the novel.

Part of the story involves Noria and her friend Sanja searching through plastic graves (landfills) for useful trash left behind by previous generations in the past-world (meaning us in the twentieth and early twenty-first centuries). They are amazed by the things that are thrown away that are still useful or in-tact. They find an old boombox and tapes and CD’s that contain notes from an expedition in the Twilight Century (the one when all the oil runs out) about sources of water that people don’t have access to in Noria’s time. What the expedition finds out is part of the mystery of the story so I won’t go into it more than that. But there’s a quote that cut into me like a knife. Noria asks Sanja if she thinks about the people in the past-world who left behind all of this trash and Sanja replies “It’s not worth thinking about them, Noria. They didn’t think about us, either.” I try not to be a wasteful person, but there is only so much one can do when you live in a society full of waste and one that is slow to change. And Sanja is right–so many people don’t think about what we will give to future generations. The people who will live in the future aren’t real yet, so who cares about them, right? (I mean, I think about them, but others take that attitude.) That’s one of the reason why I enjoy reading and why I wish more people would read more books or at least long form pieces and short stories on the internet–reading helps you out of yourself, helps you think about what other people go through. And maybe that will change what you do with yourself and help you be less self-centered.  Even before fibromyalgia, I really wanted to get out of my own head sometimes, to stop thinking of myself and my problems, and to try to understand other people.

I  enjoyed this book more than most I’ve read recently.  The prose shines in spots, the world-building was believable, and the main character was well-drawn. I liked that I only got glimpses of what was really going on because that’s what most people get in their lives. Most of us aren’t in seats of power and control. Most of us are reacting to what’s going on around us rather than being the people who are making the big moves. I liked that it made me think about the future and about the power of knowledge and control of knowledge and resources. I’d recommend it for people who enjoy fiction about people resisting the world that’s been given to them and fighting for knowledge and for what’s right.

The book ends with this line (which some readers might not like knowing about, but I often read the last page before I finish a book, so I’m okay adding it): “This morning the world is dust and ashes, but not devoid of hope.” I can’t think of a better way to approach difficult days.

I’m okay with this today

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I feel like sometimes having fibromyalgia means making peace with my condition and what it takes to deal with it over and over again. I think this is because the condition is so variable and can impact me in different ways at different times. Maybe it’s also because I don’t want to admit to or deal with my condition some days. I never can ignore it for very long, but I can’t resist the temptation to try to sometimes.

For instance, I just woke up from a nap. I feel like I’ve been coming to terms with my feelings surrounding my need for naps and rest during the day for five years now. Some days I can’t stand that I have to rest and some days I can accept–and even appreciate– it.

I think I was asleep for thirty minutes, but I’m not sure. I know I was lying down for about an hour. Sometimes I lay down for a nap and then I wait and wait and wait until sleep comes. So then I have to take out both the minutes asleep and the minutes it takes to get to sleep from my day.  And then after I wake up I have to wait for ten or fifteen minutes to really feel like I’m awake again. That’s the main reason I resent having to taking naps some days–it just takes time and  hate feeling like I’m losing time.

Today the nap took about an hour, however that time was divided between sleep and trying to get sleep. I didn’t really resent it today because I knew I needed the rest. I stayed up later than I had wanted last night reading before bed (the book is called Memory of Water by Emmi Itaranta, and I’ll write a little about it when I’m done) and then I fit in a lot earlier today–babysitting in the morning and then a whole bunch of errands between noon and two-thirty. And I think I’m still recovering from exercise I did on Sunday that took more out of me than I thought it would–sometimes you can prepare and rest afterward but fibromyalgia still gets you– and yesterday was a big day, too. So I don’t really resent the nap I had to take this afternoon. Yes, I did have to give up an hour, but I needed the rest in order to make it through the rest of the day and I had to take it in order to recover from doing things I wanted to do.

So I can be okay with taking the time as long as it helps me feel at least a little better, and I can still can get done what I need to get done. The tricky thing is being okay with needing rest when it takes away from my day and I can’t get everything done that I need to get done. But that’s a post for another day.

A Not-so-successful Hike at Rocky Mountain National Park

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Don’t think from the title that I didn’t somewhat enjoy the hike–how could you not enjoy these views? I mean, there is still snow on these mountains. In June. And all of that green! It’s such a treat compared to what I usually see.

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But I just didn’t have the best time physically. But I mean, I have fibromyalgia, so I just had to make the best of it.

So two weeks ago my husband and I went to my family reunion in Colorado. We were near Rocky Mountain National Park and since we’re trying to visit as many national parks and monuments as we can (Ken Burns is right–they are America’s best idea), we knew we had to go see it. Now this is a big park and it’s probably best to spend at least a day there, if not more than a few days, but we could only carve out a few hours on one afternoon in an otherwise crowded schedule. It would be nice to go back again the next time we go to Colorado and maybe devote a day to it. (No camping, though. I wasn’t really a camper before fibromyalgia and now it sounds like the worst idea possible.)

We didn’t really know anything about the terrain, so we just picked a trail at random and decided to see where it lead. It just so happened that this trail was one that basically went up and up and up the entire time and was supposed to end at a lake (we didn’t make it to the lake). Now, I wasn’t able to prepare for this hike like I would any other, but because there wasn’t any other time for us to go, I pretty much had to go without the proper preparation I’ve learned to do. The night before I had stayed up late and I had also had two glasses of wine, which I shouldn’t have done because it doesn’t always mix well with my medication and sometimes causes me to have trouble sleeping, but I did because it was a party atmosphere at my family reunion. So I went into the hike feeling tired, but the climbing wore me out even more. And I was worried about the elevation–we started the hike 4,000 feet higher than the elevation we live at and 3,000 feet above the elevation of the canyon where we do most of our hiking. And since we were going up and up and up to an even higher elevation, I was worried that I was going to get light-headed.

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Up and up and up

So when we started I was excited and marveling at the view and enjoying the cool, but then I just became worried and irritable and ended up not enjoying myself. I do my best to have a positive mental attitude, but sometimes I just can’t be positive. Sometimes I just want to climb up a mountain trail to see some lake and not feel exhausted. I’m afraid I wasn’t the best company for my husband, either. I stopped to rest and he wanted to go on, so I told him to go while I sat on a rock. I wasn’t expecting the rest of the hike to take that long, and I was getting tired of watching children troop past me like the climb was nothing, and I started to get frustrated with my body and wishing I didn’t have to do so much care if I want to something physical, so I was just upset when we finally met up again and that made him upset, too. It wasn’t our best visit to a national park ever. I was never so happy to get back to a hotel and take a nap.

Come to think of it, we will have to go back and see if we can’t enjoy ourselves more. I hate feeling like my fibromyalgia gets in the way of me enjoying things, but then again, I’d hate it even more if it meant I would never go out and do anything. I suppose having a crappy time is better for my attitude than not doing anything at all. Because it was hard, but at least I was able to get out and do something. There are just so many days where I do the bare minimum and I feel like life is passing me by; even a crappy day makes me feel like I’m living a full life.

 

Vacationing with Fibromyalgia

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Last week we went on vacation to Colorado, which looks like a postcard and which was blessedly cool after the heat wave I’d been living through in my town. I mean, it was so cool I was wearing a hoodie. It was wonderful to be really cool, not just cold from the air conditioner.

I think I have figured out this traveling with fibromyalgia thing. It depends on being a little selfish. The reason for our trip was to make it to my family reunion. I have quite a large family (more than 100 people were there and–as my brother likes to say–“that’s not even most of us.”) Generally, you’d be expected to ride together and share hotel rooms and give people rides and wait around for other people to get done with breakfast before you head out on an adventure somewhere. That’s just the way it would be done in my family; it may not be how other families do it. Luckily, I’m old enough and employed enough to be able to do things on my own, so I was able to travel up with just my husband and to get our own hotel room and not share with anyone else. This meant that we could break up a thirteen hour trip in two days instead of having to make one long marathon of a drive in a day. It also meant that I could sleep in on the days I needed to and could take a nap on the days when I needed to. It meant that I could leave a place earlier than others or arrive later. It’s so important for people with fibromyalgia to work in rest breaks and not to over-extend ourselves. Family reunions are usually places where you don’t get all that much rest and you over-extend yourself (at least in my family). But rest is so important for me to enjoy myself at all. So I had to miss a few events or come late to dinner, but that’s okay. If I have to do that in order to enjoy myself at all, that’s okay.

In addition to breaking up the trip into two days and ensuring my ability to get rest, I made sure to get some exercise and to bring the painkillers. I know I’m just going to have more aches and pains, no matter what I do. I made use of the hotel pool for gentle exercises, did some gentle yoga in the hotel room, and made sure that I didn’t have to do too much walking.

But even though I did my best to manage my symptoms, just having to do more stuff in a day than my body is used to doing means I needed some extra rest yesterday and today. But that’s okay. I’ve long come to terms with the idea that in order to do even a fraction of the things I want to do, I’m going to have to have days of rest and recovery afterwards. These rest days are almost welcome since they come as a result of me doing things with myself. How can I resent my body needing to rest after a vacation?

Heat Wave

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This whole week (including this past Sunday) my little corner of the world has been stuck in a heatwave with record high temperatures over 100 F. The afternoons and evenings are spent trying to live with temperatures over 100–today the high is supposed to be 103. And the high temps are not supposed to get under 100 until this weekend, when it will be in the cool upper nineties.

Aside from making things absolutely miserable for most of the day (even the dogs look at me like I’m crazy when I try to get them to go outside and usually they run for the back door whenever I get near it), this weather makes it hard to exercise outside. Unless I get up at the crack of dawn (which I would never do unless someone is paying me or I’m traveling) when it’s 75, it’s going to be too unbearably hot to try to exercise outdoors. Even when the sun goes down, which happens around eight this time of year, it’s still 90. I absolutely hate sweating (my poor husband has to hear me complain about it every time we go for a hike or bike ride) and then I worry about heat stroke because it’s too hot and I wonder if I had enough water. I worry, too, that my fibro will make me more susceptible to the heat or that the heat will make my symptoms worse. I haven’t noticed that it does (except maybe to make me a little more sleepy), but you never know what will happen when you have fibromyalgia. So I’ve been trying to stay inside as much as possible, grumbling about how if I wanted to live in these conditions I’d move to Arizona.

That means my exercise option is to do yoga in my living room with two fans trained on me. This is actually ideal because I’ve been feeling extra stress lately and the yoga is helping with that and the aches and creaks of my fibro. I just want to go outside sometime soon without feeling like I’m about to melt. Maybe next week.

Two Year Anniversay (and a Good Day)

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So I’ve been blogging for two full years now. I’ve made 118 posts. I wish I could have made more, but having fibromyalgia means you can’t always do what you want when you want to do it. And today I’m okay with that.

It’s a beautiful day–76 degrees, overcast, a slight breeze, some humidity–I think it might even rain later. This type of day happens only a few times a year around here. Usually by now (1 pm) the sun would be out and the day would be heating up. But not today. Today it seems like it’ll be beautiful for most of the day. It’s probably one of the last fine days before the summer heat really gets here. I have the windows open to let in the breeze. I didn’t have to work today, so I woke up at nine, feeling rested, had a quiet morning and then did gentle yoga for half an hour. Yesterday I woke up with aches in my thighs and I wondered why because I hadn’t done anything that stressful the day before and there should have been no reason for the aches. But then I remembered that I have fibromyalgia so there doesn’t need to be any other reason why my thighs were hurting. But not today. Today I am rested and the thigh pain is gone. Of course I still have little aches and pains, but those are so little it’s easy to overlook them. Of course there is a little fatigue around the corners of my mind, but it’s only a little so I can ignore it and not have to give into it.

I’m glad that this beautiful and relatively pain free day makes it so my second anniversary post can be on the positive end of the spectrum. I know that these last few months I’ve been nearer the negative end of it. I can’t help that I’ll have those bad days; I’ll just try to relish the better ones.