Tag Archives: fibromyalgia

Let me tell you about my day.

To start off, you need to know how horrible yesterday was, and the day before.

Sunday, I woke up hurting in almost all of my joints. My back and neck, both hips, right knee, both wrists and many of my finger joints but most of all my thumbs hurt horribly. There’s not much to do when that much of you hurts, except lie on the couch with heating pads and electric throws and try to amuse yourself. The brain fog was bad enough I couldn’t even really focus on a show with a plot, so I watched a lot of YouTube videos. At one point I put on a documentary series so I could semi-focus on it while I tried to take a nap. (Tip: when you hurt too bad to sleep, some kind of sensory input like a comforting TV show can sometimes distract you enough to sleep though it sounds counter-intuitive.) Napping has the unwelcome effect of making it even harder to get to sleep at a normal bedtime as well, but I risked it because I was just so exhausted from the pain and brain fog.

I was disappointed because I am trying to participate in the NaNoWriMo (National Novel Writing Month) Challenge, and couldn’t manage more than about 600 words over the entire weekend. I haven’t been able to participate in it for years because I was working full time and in school, but now that #gradSchoolSucks is over, I signed up with the hope I might finish it for the first time. Right now, I’m behind by about 9,400 words. I’m not throwing in the towel, but there’s a good chance I won’t make it.

Long-time readers may remember that I had a list of things I wanted to do in 2018 after I was finally done with school. It had fun things like seeing friends more often, taking up belly dance again, learning to swing dance, and hobbies I wanted to take up again. NaNoWriMo was on that list. Most of the other things on my list I’ve had to abandon thanks to my chronic illness. So I'm really disappointed and frankly angry as hell that the one thing I thought I could count on may also fall prey to this damned illness.

Dawn broke yesterday morning and I was hurting even worse than on Sunday. I gave serious consideration to calling in sick. Or working from home, as that’s an option for me with my job. After waffling back and forth for a while, I finally decided to drag myself into the office. I’d called in sick only a couple of weeks ago after a horrific day of out of town meetings combined with a cold front and 4 hours on the road completely drenched and freezing (a WHOLE ‘nother story) threw me into a flare and I woke up the next day virtually unable to move. I don’t want to start being “that employee” and I certainly don’t want my boss to have to take up slack for me related to my chronic issues. I knew as bad as I was feeling that I’d end up dozing on the couch with my laptop for much of the day, and not be productive working from home. So I took a hot shower and drove myself to work.

Normally I am a decent example of “you don’t look sick”. I work at it quite a bit to not put my pain on display and prefer to let most people think I’m doing fine even if I’m not really. Yesterday I apparently didn’t manage it, because more than one coworker asked me if I was feeling okay. I couldn’t even muster the energy to fake it and admitted that I was not having a good day.

I’m proud of myself for dragging myself through the day and being mostly productive. I got home, took pain meds, ate, watched some TV, took more pain meds, and went to bed early hoping that it would be a new day and I would feel better.

No such luck.

My joints didn’t hurt as badly as they did yesterday, so that felt like a win. But I had a bit of a headache brewing when I woke up. It didn’t seem like a migraine, so I popped some Excedrin with my morning meds and got on the road with my protein coffee shake.

About five minutes down the highway, the migraine made itself known. Normally, I don’t get overly nauseated with my migraines, but occasionally I do. This was one of those occasions. I’m driving 60 mph (or more, I plead the 5th on that topic) on an interstate, and I’m having all of the signs that my few swallows of protein shake along with my meds are threatening a rapid return. So fighting back the nausea, I carefully weave my way across three lanes of traffic so I at least have a shoulder available if the threatened return becomes inevitable, while digging by feel in the glove box for an emesis bag and turning the A/C up to high. (Yes, prepared Spoonies - especially nurses - have emesis bags in their cars.). It was a precarious several minutes, and I missed my express lane entrance, but my stomach finally quieted down, and the Excedrin had apparently been just in time because the migraine had disappeared by the time I got to my parking garage. Of course, there’s the “post-drome” aka “migraine hangover” but I’m well experienced with working through those.

I think I managed to hit the “you don’t look sick” bar today, so that’s good. What a lot of people who don’t deal with chronic pain don’t realize is how much it drains you. I’ve also learned that pain in the hands is so much harder to ignore than leg pain. I’ve had my share of injured knees and ankles, and I can prop those up and ignore them. Pain in the hands, though… that’s a doozy. Typing, picking up the phone, holding a pen, picking up the water mug - everything makes the hands hurt worse. Last night I dug out my compression gloves, and while they’re not exactly high fashion, they help with pain and swelling. I wore them most of the day, and alternated menthol patches with my topical prescription anti inflammatory. There’s nothing like smelling like menthol at the office to make you feel ancient, I gotta say.

I ducked out a bit early for an appointment, and hoped it wasn’t obvious I’d bailed a little early two days in a row. Honestly, I work with a bunch of great people and our office is pretty flexible about hours and such. But as a Spoonie, and one fairly new to the job, I worry about appearances.

Now I’m home, and luckily my pain remained constant today and didn’t get out of control, so a normal dose of pain meds should let me get good sleep tonight. Here’s hoping for a better day tomorrow.

I’m not typing all of this out as a whine. Well, not much anyway. I’m sharing all of this as an example of the choices Spoonies have to make every day. If you don’t struggle with chronic illness, or have someone in your life who does, I want to give you a glimpse into the struggle we face.

Those of us with chronic migraine have to try and divine whether this headache needs a triptan, or if there’s a good chance Excedrin or Advil could take care of it. This is because most insurances restrict us to 9 doses of triptan a month, and some migraine attacks take 2 doses to resolve. Also, taking the triptans too often can set us up for “medication overuse” headaches. Despite the other neurological symptoms, despite the pain, we have to weigh if this attack is “bad enough” to treat it with the prescription meds.

When we have other kinds of pain that respond well to opiates, we again consult the crystal ball. Is this pain “bad enough” to take a dose? Doctors are hesitant to prescribe opiates now, so we feel the need to ration what we have. Long term, opiates stop working as well for chronic pain, so that’s in our minds as well. Do I think tonight’s pain is likely to be worse than what I will have next week or next month, or should I try and manage it with things that don’t work as well?

Then there’s the required “pacing” which is a code word for budgeting and reserving our energy so we can do the important stuff. Lately, I’ve had enough energy on a weekend to do ONE thing, and ONE thing only. If I’m scheduled to medic for the roller derby league on a Saturday night, I can’t plan on doing a single other thing that weekend. No grocery shopping trip, no visiting family or friends, no chores around the house. If I simply must do some house cleaning, that’s ALL I can do that weekend, and I’ll likely have to pay for it with the next day being a don’t-leave-the-couch day.

Jobs create another kind of stress and worry. We don’t want to be “that employee” and we don’t want to burden our team by our absence. One of the driving factors for my leaving both ER jobs that I absolutely loved, was that I knew my health was declining and every call out overburdens your team. Many employers are not understanding of frequent time off for illness, and we worry about losing our job and being unable to support our families on top of feeling like we don’t contribute enough to our work team.

Every day when we wake up feeling like death warmed over, we have to try and figure out if it’s bad enough to call out or if we think a worse day might be around the corner and we can’t “burn” a sick day. After all, it’s not like we’re contagious and putting our coworkers at risk. It’s just our own pain we have to deal with, and when pain’s a daily experience, what makes this day enough different to call out? In my case, winter tends to have more frequent migraines and upper respiratory infections. My new migraine preventative medication may make a difference this year, but I won’t know until we get further down the road. I need to reserve my PTO days not only for budget reasons, but to not be “that employee”.

Spoonies like me who are still able to keep working full time walk a tightrope. We’re glad we’re still able to work (many aren’t) and support our families. But many of us also feel we spend all of our off time recovering so we can go back to work, and we lose too much of our personal and family lives. Some days we just can’t make it in, or if we do we’re not at 100% and we feel guilty either way.

So yeah, I’ve had a couple of rough days already this week. I’m hoping the worst is over and the rest of the week will be an upswing. I’ll make it through, either way. After all, I have a 100% record of making it through the day, and that’s something.

changes-aheadI have fallen woefully behind in posting updates to this blog.  I’m happy to report it’s for the most excellent of reasons.

Shortly after I posted last, I was contacted by a recruiter about a job with a large local hospital network.  It took a while to get through the rounds of interviews, get and accept the job offer, and get on-boarded.  But it all worked out, and I just finished my third week at my new digs.

I am, as some people say, happy as a pig in slop.  (Isn’t that a mental image? LOL)  The Mister says he hasn’t seen me this excited and animated about work in a long time.  This is exactly the kind of position I dreamed about and worked so hard on my master’s degree for.  I feel a bit like Melanie Griffith at the end of Working Girl.  Though my new workspace is “Apple-esque” (read: open office concept) instead of an office with a door.  Though not my preferred environment, it’s a minor gripe, especially compared to all the awesome things about my new job.

My new group functions as a technology think tank for the network.  I’m a program manager, which really means I project manage a bunch of related projects that make up a program.  We’re looking into all the ways we can extend care from our physicians and hospitals into the digital space through mobile and web technology and such.  It’s really exciting, and though I have a lot to learn about project management, the team is fantastic and incredibly supportive.

So I’ve been learning to navigate downtown Dallas and Central Expressway, and parking downtown means I’m walking almost twice as much for my routine activities than I used to.  So of course, my body thinks I’m punishing it, and the fibro is trying to fight back.  Most evenings I crash, and right now my weekend activities are limited to one physical or outside the house activity and the rest of the weekend is resting and recuperating to do it all again the next week.  I believe I’ll adjust to the increased activity and be able to start doing more things, but I’m listening to my body and resting when I need to so I can be effective at work.  The Mister is awesome about looking after dinner and other things that have to be done, which is awesome.

I've been trying to write this post for a couple of weeks. My thoughts and feelings balked at being committed to paper. I think I've worked through it enough to write now, so we'll see...

First, I read an article on Migraine.com (https://migraine.com/expert/fighting-for-migraine-with-words/) by Dr. William B. Young about how the words we use affect how we see our own battles with chronic illness, but also in a more far-reaching way affect how other people view us and our illnesses.

Dr. Young made the point that a condition is fundamentally different than a disease, and migraine is so much more than a headache. By using words like "migraines" or "migraine headache" we change the perception for ourselves and others and minimize a serious neurological disease. Also, using the term migraineur reduces the person to their illness much in the way the terms epileptic or schizophrenic do.

It's more than political correctness, it's about the perception these words create. I've used the term migraineur for years. Like other labels, it's simple and concise. I like simple and concise language, and have always resented political correctness being thrust upon me and my choice of language. However it's important for me to recognize the impact of the words I choose. This is like choosing to say rheumatoid disease instead of rheumatoid arthritis or psoriatic arthritis. The word arthritis dilutes the full impact and implication of rheumatoid disease.

Incidentally, I'm not trying to tell my readers or anyone else what words they should or shouldn't use. I'm just offering some food for thought, and offering an opportunity to think about the language you choose to use.

Part of my challenge in processing this is that I still tend to not think of migraine as the neurological disease and disability that it is. It's been just another fact in my life since I was a teenager. It runs in our family - my sister, nephews, and daughter all have it. Sis and I suspect our Mom has it based on our observations (though Mom disagrees).

I've written before that I never considered myself to have chronic illness until my rheumatoid disease was diagnosed. As I became more educated on the subject of chronic illness, I realized that I've lived with multiple chronic illnesses for most of my life. While my asthma is fully controlled with medication, I still have to make decisions in order to keep from having an attack. I cannot exercise in cold air without a mask, I cannot go to smoky environments, and I have to exercise caution when dusting or cleaning, and I can't go to concerts (second hand marijuana smoke has forced me to leave too many concerts early). I've had migraine attacks since my late teens, and it's affected my life to varying degrees ever since. Rheumatoid disease and fibromyalgia are just the two latest entries to my list.

So while I was still digesting and processing the information from Dr. Young's article, I watched the film Unrest (https://www.unrest.film/) and it reduced me to tears. It's available on Netflix and other streaming media. If you or anyone you love deals with chronic illness, I highly recommend that you watch this film, though I will warn you in advance it is hard stuff. It chronicles Jennifer Brea's experience with Myalgic Encephalomyelitis (ME) which has been associated with chronic fatigue syndrome. (Note: this association is disputed by some ME researchers.)

While the film is specifically about ME which I do not have, so many of the themes struck home with me, as I believe they do with all people who have chronic illness. People not believing us when we share our symptoms and struggles. Doctors telling us it's a mental condition (and even prescribing depression medication). Fighting to get referrals to specialists or specific testing. Feelings of guilt from placing burdens on our family and friends because of our illness, and of not "pulling our own weight". Relief when we finally get a diagnosis, even if it's incurable, because it means there's tangible proof finally. Grieving the person you once were and can never be again. Worrying about missing too many days of work, or not being productive when we drag ourselves in. Wondering if you will ever have a pain-free day again.

I've had to catch myself several times while typing out these paragraphs, as I tend to write that people "suffer" from chronic illness. This is yet again one of those words that changes perceptions. Certainly there is suffering that goes along with chronic illness. For some of us, it's intermittent. For others, it's fairly non-stop. But the term is passive, it's being subjected to something. It's like using the phrase "victim of" and while some people use it, others hate it. I don't embrace being a victim, even though the legal term applies. Similarly, I don't embrace suffering from anything. I prefer more active terms. I survived abuse, I fight chronic illness. It's also important to recognize that some people don't like the active verbs, either, and find being labeled a "fighter" or a "warrior" demeaning. Dr. Young probably offered the best advice, in that we can use any term we want when relating our own experience, but we should try to avoid applying labels to other people as only they define their experience.

The biggest word I struggle with, however, is "disability". When I think of someone with a disability, I think of wheelchairs, canes, severe impairment of a sensory system like sight or hearing, or like some of the people in Unrest essentially being bedridden. I have a strong aversion to calling myself disabled or saying that I have a disability. Part of my resistance is because I don't want to minimize what those with the more severe impairments deal with. I am still able to hold down a full-time job. I recently finished a master's program while continuing to work full-time. That doesn't fit the picture in my head of someone with a disability. Never mind that while doing that, I was completely unable to keep up with even minimal housework or cooking, and every weekend was spent recuperating from the week before. Part of it may be a fear that someday the impact on my daily life will be much more severe.

Perhaps the other thing about words is that while they can change perception, we can maybe create a change in how certain words affect us and others by changing the dialog around them. Especially when dealing with hidden or invisible disabilities, talking more about them and how disability is on a continuum can change how we and others see the concept.

There's one word I won't give up, though. Spoonie. The story by Christine Miserandino (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) in which she explains to a friend what it feels like to have lupus has given all of us who deal with chronic illness a touchpoint around which we have built communities of support for each other. It gives us a shorthand to use with each other and our allies. It might be reductive, but for me it's an identity within a community and that's an important thing to have, especially when you have a chronic illness.

It's been a while since I posted. #gradSchoolSucks and all that.

I have been struggling with a lot of stuff this month.

The "on this day" feature of Facebook has made it clear that October is migraine month for me, and this month was no exception. In fact, my migraine monster decided to go for a personal record. I had three weeks straight at the end of September and beginning of October where I didn't go a single 48 hours without a migraine or other severe headache. I finally determined that sinus pressure, partially due to crazy weather changes, was playing a part, along with a bit of dehydration from the constant pain. Munchkin's first neurologist (who was a Godsend) said migraineurs cannot let themselves get hungry or thirsty or they risk a headache. Wiser words were likely never spoken. I signed my life away at Walgreen's for some real Sudafed, upped my water intake, and along with several rounds of a version of the ER Migraine Cocktail, finally got the cycle broken.

The #meToo wave crashed over Facebook, and I felt moved to share a little bit of my experience. This caused me to publicly state some things that went on in marriage #2 that I'd never spoken of publicly. That required a lot of emotional processing, and I'm currently re-evaluating people who remain in social circles with both Ex#2 and myself. I think it was worth it, as a couple of guys on my friends list posted that the #meToo wave showed them in perfect relief something they'd never realized before. That virtually every woman they know had suffered some degree of sexual harrassment, assault, or abuse in their lives. I really hope that this is the beginning of a sea change in the way we talk about violence against women.

I'd like to point out that I'm being gender specific with my terms, because the violence is also perpetrated against non-binary and trans people when they present or are percieved as female, so I have not changed my wording because I believe that this particular violence is against women specifically. Non-binary and trans people face ADDITIONAL violence because they are not conforming to societal gender norms, and this is equally wrong. I don't like conflating the issue because it dilutes the impact of the violence against women, and it also erases the idea that non-binary and trans people who present or are perceived as female get TWO kinds of violence directed at them. I also recognize that men are victims of sexual harrassment, assault, and abuse as well. They should also be believed and supported, no question. But again, I don't like conflating issues and want to see violence against male targets given its full due.

Anyway, enough social commentary for today. LOL.

Work is stressful. Grad school is stressful. I told my therapist last night that I think I've maxed myself out on stress. It's causing me to procrastinate with school stuff making this last semester that much more of a grind and adding more to the stress levels. It's causing me to become ambivalent about projects at work, which is never a recipe for my best effort and results.

In good news for the month, I'm back to my regular dose of the fibro meds, and my daily pain level is a 2-3 out of 10 which is a vast improvement from the 5-6 it was earlier in the year. My fatigue is getting better, but then I'm still recovering from the beating October delivered to me. I still hate having a fibro diagnosis because it's so non-specific and has a lot of stigma attached to it, but I have to be glad that I'm in the percentage of people for whom the meds seem to work well.

So I have basically seven more weeks of grad school to gut through, and then I'm hoping life gets a lot happier. In the meantime, I'm hanging on and pushing through. Now that the weather is starting to level out as Fall blows in, I'm hoping that November will be a lot better of a month for me.

chachaIt seems like every time I think I’m starting to make real forward progress, something sets me back.

I mentioned a few weeks ago that I was pretty sure my rheumatoid disease was not, in fact, in remission as Dr. B seemed to think.  My joint pain had been steadily escalating since spring, with some new joints joining in the fun.

However, my blood tests show zero elevation in any of the inflammatory factors, and there is zero visible swelling in my joints.  So I asked the nurse who called with the results what Dr. B thought might be causing my now 5/10 pain level.  She called me back later to let me know Dr. B thinks it’s “the fibro”.

The WHAT?

No one had ever talked to me about a fibromyalgia diagnosis.  I knew that I probably met the criteria for it, but it fully depends on self-reported information about pain and impact on daily activities.  So pretty much anyone who reports widespread pain with a  negative impact on daily activities without another diagnosis found, gets a fibro diagnosis.  It’s the bucket we all get thrown into if we keep insisting we hurt and the docs can’t find anything else.  Medically speaking, it’s a trash-can diagnosis.  It doesn’t help that frankly some people take advantage of the self-reported nature of the diagnostic criteria in order to gain sympathy, pain medication,  and even disability income.

At any rate, the nurse said the doc wanted to put me on Cymbalta and Gabapentin.  I’ve had trouble with Cymbalta in the past and told the nurse that I’d been on Savella for fatigue because of my past issues with Cymbalta.  She brightened up and said that Savella was even better, and since I’d been on it without issue, we’d just start it up again.  After I got off the phone, it occurred to me that I’d tapered off the Savella right about the time the pain started up, so it lent credence to Dr. B’s assessment.

So I’m ramping up my Savella doses again, and the pain is lessening.  So I guess that I really do have fibromyalgia, and I’m lucky in that there’s a medication that helps.  It’s a med I tolerated well, which given my history of side effects and adverse reactions, is a minor miracle.

I’m also finding that if I can drag my happy butt off the couch and go swimming or walking, I do feel better as long as the exercise is not overly strenuous.  It’s the dragging myself off the couch when I feel like hammered dog poo that’s the challenge.

I even managed to finish my first 5K with my new weight loss surgery support group.  The Mister did it with us, and my time actually puts me in the acceptable pace rates for many of the popular 5K walk/runs.  Part of me wants to start doing them periodically, but part of me doesn’t like the thought of joining huge crowds of people to walk 3.2 miles.  Once grad school is over, we’ll see what I have the time and energy for.

This forward and back pattern is discouraging but as the quote says, if you look at it right it’s a Cha-Cha.  I guess the trick is to keep finding ways to move forward, while finding the right music for the dance.