Fibro Sucks for Having Arguments

Last night, Don and I were discussing minutiae (again) and came across a point of contention between us.  We love to discuss controversial topics and compare our thoughts on things.  Most times we agree (almost sickeningly, according to some spectators), but there are times when we just butt heads.  Both of us desire, very strongly, to ensure that our respective points are clearly understood by the other party, in the hopes that the disagreement can be resolved simply by clarifying our points.

Anyway, we got into this heated debate and I realized how shitty it is to be the one with mental faculties compromised.  Such a disadvantage can cost an enthusiastic debater, not only the argument, but some pride and self-esteem, as well.  I can usually hold my own, but last night I observed my cognitive shortcomings getting in the way of my communicating my oh-so-relevant points.  It was basically like this:

Don: "You said that the only reason..."

Benia: "No, That's not what I said!  I never said 'the only', I--"

Don: point #1, POINT #2...

Benia: "WAIT!  Let me FINISH!!"

Don: "Okay, what?  Say what you gotta say."

Benia: (thinking)...

Don: POINT #3--

Benia: "No WAIT!  I'm NOT DONE!!  That's NOT what I SAID!!  LEMME FINISH!!!"

Don: (waiting patiently, with an impatient sigh and some not-so-subtle eye-rolling)

Benia: "Um.. so..." (choppily bodged together sentences of barely acceptable English, forming some semblance of what I really wanted to say, with pauses unintentionally interspersed)...

Anyway, you get the picture.  The way Fibromyalgia affects my cognitive abilities, especially my ability to find the precise language I need, and the time it takes me to find those words, really....um... frustrating.... GRRR!   Ya know?

The fact that I have the ability to take my time and ponder what I want to express using written words is my saving grace.  If I didn't impress myself with they way I communicate in writing, I'd be convinced that I'm stupid and give up on a lot of things.  Thank goodness I can take as long as I want (within reason) to find a word or phrase in e-mails and blog posts.  I'm practically a friggin' genius on paper.  But when I open my mouth to speak, and discuss things on the fly - oh who knows what I'll come up with?  

Most times, when live discussion is pressuring me to keep talking, I find myself torn between two words or phrases (sometimes they are both acceptable, but sometimes they are not) and they end up coming out morphed into some nonsensical hybrid, then I quickly correct myself by choosing one or saying both correctly, to scoop back up some of my dignity in front of the other person or people.  

Other times I just wait and wait for that word or phrase that I KNOW is hiding in that dusty brain of mine, but it doesn't come until the conversation moves on to a different topic, has completely ended, or sometimes not until days afterward.  Yes, sometimes, days after conversations I've had, I still struggle to find the right word or phrase, or the name of someone or something.  It's like unfinished business and it nags at me and distracts me from the task at hand.  I usually give up if I can't figure it out in a few days.  I figure it will come to me when it's ready - so why bother worrying over it?  I'll be driving to work one day and suddenly exclaim in victory "bergamot!" (and smile the rest of the ride).

I'm glad I got this off my chest.  I know some of you will be able to relate.  If you have anything you'd like to share about it, I would welcome your version of this fibrofog.  (Hint: Click "Comments" below and tell me I'm not alone on this!)

I Missed You Last Night, Ambien

I pulled a fibrofog and forgot to take my half pill of Ambien (Zolpidem) last night.  It's the first time I've forgotten to take it in a long time - maybe EVER, since I started taking it.  What a shitty night I had.  I must have woken up about a thousand times.  I did dream some crazy stuff (very detailed, as usual) so I know I got some sleep, but it was such a long night.

I sure did miss my Ambien last night.  Never again will I forget!

Another Diagnosis: Sacroiliitis

I met with my fibro doctor last Tuesday.  Luckily, I had the forethought to try to jot things to discuss down on paper, starting a week or so before my appointment.  I had a whole page of topics!  Here's a wrap-up of the major points we covered.

I explained about my hip and lower back issues. The doctor diagnosed Sacroiliitis and gave me a special velcro belt that helps tighten the hips.  It feels good.  I am to wear it as long as it feels comfortable, to help align the sacroiliac joints.  He even measured my legs to see if they might be different sizes, which can lead to this problem, but they are the same length. He mentioned that Sacroiliitis can be a symptom of Ankylosing Spondylitis, but didn't seem too concerned at this point.  (I'm still concerned, but we'll see how it goes.)

I told him about my screaming left knee pain that comes on sometimes, especially in the evenings, while I'm just sitting on the couch.  He named it Patella C-something (I couldn't spell it - maybe this is it?) and said to avoid sitting on my leg or legs and to also avoid crossing my legs while I sit.  These are very hard on the knees, he says.  He also said skipping steps while going up stairs is really bad for that, too.  I definitely don't skip steps, but I noticed this week that I do try to cross my legs a lot while at work.  I've been stopping myself, now that I know it's bad for my knee.

I told him about my frequent presyncope (feeling faint) and how it happens when I change directions or speeds.  He was initially concerned about POTS, but he tested my resting blood pressure (which was normal - not low) and pulse before and after some mild exercises.  My resting pulse was somewhat high at 92, but the increase after activity seems normal. I can't remember exactly, but I think he attributed the high resting rate (and my sweating) to the Pristiq, and the Doxepin may have something to do with the dizziness and lightheadedness.  At any rate, he did not seem too worried about it after conducting the little test.  I guess I still don't know exactly what's going on with this.

Doxepin is the stuff I decreased from 2 capsules nightly to 1 capsule nightly, because I was getting a crazy sweet tooth and getting fat.  However, it should help me with pain, so he suggested I add increasing back to 2 for 5-7 days to my action items in my WRAP, especially if I notice I'm not getting sleep.  He also said I could increase it for worsening of pain, especially in the wintertime, when fibro tends to get worse.  I just need to be aware of the side effects and keep them in check.  I am currently making an effort to eat healthy foods and cut down on indulgent sweets.  I actually lost a couple pounds counting calories, last time I checked. 

He wasn't too worried about my using Tramadol for pain about once daily.  I have been taking it most days in the mornings, when I feel worst.  He says that's not a big deal.

I didn't realize it until it was too late, but I completely forgot to mention the crazy tinnitus going on in my left ear all the time.  Oh well, I'll jot it down for the next time.

I guess that's it for now.  I just wanted to write something down to help digest it all, and share it with you at the same time. :)

My next appt. is Tue. 12/22/09 @ 8:20am.

Husband in the Hospital

This past weekend was a harsh reminder that the other half of my little family - my husband Don - is also affected by a chronic, incurable, and serious health condition.  He has been diagnosed with Crohn's Disease for 16 years now. 

When I first met him about 8 years ago, his condition was somewhat stable and being well-managed with Remicade infusions every few months.  He would still go through cycles of feeling better, then worse as the drug wears off , but he has thus far been lucky enough not to have required any surgery to resection his intestines, as many Crohnies have.  (We both dread the day when that has to start.)

After a terrible night of vomiting and unusually excruciating pains, he told me Saturday morning that he "might have to go to the hospital".  Needless to say, I jumped into action and was ready to take him in a matter of minutes.  He couldn't even keep a sip of water down without throwing it back up in only a few minutes.  All signs pointed to an intestinal obstruction, which is serious business for anyone.  I took him to the ER Saturday morning.  After the usual tests and waiting around for hours, the ER doctor recommended he be admitted, so he was moved to a different room and stayed overnight.

The obstruction does not seem to have resolved itself as of yet, but at least he can eat without vomiting and the pain is not as awful as it was before.  Treatment, per his own gastrointestinal specialist, is to try to reduce the inflammation to help open up a likely narrowed portion of small intestine with an antibiotic.  He was on liquids only Saturday through Sunday morning, but is now temporarily on a low-residue diet until this obstruction resolves.

The entire time was in the hospital, poor Don was worried about my health and comfort.  ♥ 

But my health came second to his during this time of emergency.  I didn't care about my needs - I just wanted to make sure he was okay and had some company during this scary time.  I skipped breakfast and my daily supplements and stretches Saturday morning, and was doting on him as he lay in the hospital bed, sometimes putting myself in awkward positions or standing for a long time.  I would tend to my own needs later.  I am surprised to notice, however, that despite my own neglect, my left hip didn't feel bad at all, I wasn't noticing much dizziness or fibrofog, and I hardly noticed any of my usual pains and problems.  I think my body responded to the emergency to graciously allow me to focus my attention on what I decided mattered most at the time.  I suspect the problems were there, but I didn't allow them the attention they usually get because I was determined to help my husband in any way I could.

As expected, today, I notice a heap of exhaustion, plenty of moments of presyncope (dozens of episodes already this morning) and more pains in my hip, back, and legs.  It was interesting, though, to notice that my pains and fatigue temporarily subsided during a time of crisis.  I wonder if I can tap into that need again - perhaps the next time I'm having my own crisis of extreme pains. 

Have any of you noticed that your Fibromyalgia symptoms subside during emergencies or special circumstances, despite any added stress?  Have you ever been able to control your symptoms when they reach crisis levels, by using some mental technique?  I'd love to read your experiences.

Irritability

I know I'm having a bad day when my usually (somewhat) polite demeanor changes to inconsolable bitch.  One of the nicest people who knows I have a chronic pain condition asked me if I'm having a good or bad day and I just rudely retorted in despair.  This is my cue that I'm having a bad day.  I must consult my WRAP and see what to do...

I regret snapping at this person.  This is someone who is actually concerned for my well-being and I returned the favor by barking back with my discontent.  She deserves better. 

I'm sorry if you have ever been, or will ever be, the victim of my irritable mood.  Fibromyalgia is partially to blame, but I also take responsibility for not being aware in time to stop it from happening.  I will strive to do a better job of recognizing my lousy mood and try to prevent it from sucking you into the pain pit with me.  It doesn't help to have us both in there, and I know you'd help me out if you could.  Thank you for taking an interest in me.  I appreciate it.

New Table Dressings

I'm a bit bored with the look of my blog and am currently shopping around for and brainstorming new design ideas.

Stay tuned for a new look here in the coming weeks...

Little Victories

I vacuumed today.  That's right - me.  It wasn't the whole house, but I managed to do the entire top floor of my house.  This is a big deal for me.  I smiled while doing it and even caught myself cheering a few times.

"Yay, I'm vacuuming!"

Vacuuming is a task that I avoid most days, because it is so taxing on my entire body.  Fibromyalgia leaves me weak, fatigued, and in pain all the time.

I expect a bit of a flare up after today's exertions, but I'm very, very pleased to be in a cleaner living space.  This is one of those things that I deem to be worth a flare.  It makes me feel a little better to know that I was able to perform this task - to overcome this challenge - and enjoy the results.

With my husband and I both dealing with chronic conditions (he has Crohn's Disease), we have been reduced to living in what we call "squalette" (not quite squalor, but reminiscent of it) for many months.  In fact, the vacuum cleaner has been upstairs and waiting for use for several weeks now.  It's been a nagging reminder of a chore that must eventually get done.  I'd resolved to be the one to do the vacuuming this time. 

Finally, today, I had my chance at noon.  I'd just gotten past my morning stiffness and pains, so I took action (before I'd change my mind).  Now I'm enjoying the cleanliness (while it lasts) and the calm before the storm (flare).

Ta-da! :)

Do you have a little victory you'd like to share?

Lots of Presyncope and Tinnitus

I've been dealing with lots of frequent bouts of presyncope lately.  Basically, I move a little and have a moment of feeling faint. 

For instance, when I get up from my work desk to go to the restroom or to the kitchen for a drink, and by the time I get to the first corner, I feel a moment like I  might faint, but I don't.  I've never fainted (that I can recall), so I'm not sure if this is the best description, but I feel like I might lose consciousness - just for a brief moment - many, many times a day lately.  This has been going on for maybe 2 or 3 weeks now, or maybe longer.

Other times I notice this feeling including: in the morning, when I first get up and start walking around, especially once I start descending the stairs (very slowly); while doing my stretches; when I get out of my car after arriving at work or home or wherever; getting off the elevator at work; just walking.

Sometimes it happens randomly while I'm just sitting and working at my computer.  I haven't narrowed it down to exact movements, but perhaps it might have to do with raising my arms (to put my hair into a pony tail or bun, or to stretch), or turning my head.  I'll have to keep watching for the details to see if I can figure out the pattern.

I've also been having tinnitus, especially in my left ear, a freakin' LOT for the past month or so.  I mean, like mad!  I hear this loud ringing that suppresses other real noises in the world around me, so I can hear the ringing better (great...).  It's this high-pitched tone, kind of like after a loud rock concert, but it just comes and goes all day long, as it pleases, making me act like a deaf, old granny as I cup my ears to better try to hear what those quiet people are saying to me. 

SPEAK UP, FOLKS!  I'm not kidding; I seriously have trouble hearing you!!  I'm forever turning up the volume on the TV while my husband and I watch together.  This, of course, confuses the hell out of him, because I am also forever turning down the volume on the stereo in the car.

Anyway, I am not sure how these symptoms fit into the Fibromyalgia swirl of symptoms, or if they are related to each other.  Of course, I'm concerned that there is some new problem that needs to be addressed, like low blood pressure, arthritic issues, heart problems, whatever... I just have to put all the worries aside for now, until my doctor can assess them, and just deal with the day to day challenges, one at a time.

Do you have these symptoms?  Have they been attributed to Fibromyalgia or other conditions?  Did you get treatment?  I'd love to hear from you, dear readers.

Some Things are Worth a Flare

Being a fibromite means being fragile.  I'm sensitive, I hurt all the time, and my muscles can't take much activity due to a chemical inability for them to access sufficient ATP from food.  As a result, I'm told to limit my activity, get plenty of sleep, and make sure I relax and try to reduce stress.

As a general rule, I follow this advice and try not to awaken the "fibrobeast" if I can help it.  However, living cautiously and carefully all the time kinda sucks.  I'm not going to spend my time on this planet trying to remain as comfortable as possible all the time.  I only get one chance to live life, and sometimes I am going to go ahead and risk a fibro-flare for the sake of fun and rich, fulfilling experiences.  That's right, some things are worth a flare!

Last week, I had a very busy week that was hard on my frail little body.  I had long days and little sleep.  Saturday, however, I went with my husband Don and enjoyed an annual beer fest a couple hours away (Great Lakes Brew Fest in Racine, WI).  It was a long day of concentrated fun, but WELL worth the flare I'm suffering now.  We had so much fun, we're planning on attending again next year.

I encourage my fibrofriends to prioritize life's experiences.  Don't waste the rest of your precious days wallowing over the life sentence that a Fibromyalgia diagnosis gives.  Consider making the most of life and have some fun!  You can't do it every day, but if it's a rare opportunity, it might be worth the flare.

Split Personalities

"Acting" with Fibromyalgia is a great post from the blog "Just Breathe" by one of my fellow fibromite bloggers - VinaMist.  She nailed this phenomenon right on the head!

"It amazes me how people like us with chronic health conditions have an "acting" mode. Where we can just snap into this other person outside the home and inside our homes we crash."  

It's so true.  In fact, I'm due at a party in a couple of hours and really don't feel like going because I am not up to being "on" and behaving "normal" for other people's sake.  I have been in pain for several days and haven't had time to really crash yet.  But I hate to cancel at the last minute - I just don't want to be one of those people who lets others down (typical fibro personality). 

So now I'm faced with this choice: do something to please others, or do something that helps me.  I hate this choice.  I suppose I can push off the crashing for one more day.

I'm going to have to put on the Happy face now...

(Thanks to Maddie F for the photo.)

Am I "Hip"? (Sacroiliitis and Ankylosing Spondylitis)

What a couple of tongue-twisters, eh?  I learned about these two conditions recently while looking into possible causes for my recent bouts of pain in my left hip area.

The left side of my very low back and hip, down to the back of my left thigh, have been bothering me a lot lately.  My last flare, which lasted about two weeks, centered predominantly on pain stemming from, and probably referring from, the top of my left hip bone.  I remembered my doctor telling me that my sacroiliac is probably to blame for what had been diagnosed as sciatica, but that pain is sudden, lightning-like, and remarkably intense (enough to startle me visibly).  I usually get what I understand to be sciatic pain in the back of my right thigh, but similar lightning-like pains have jolted me under my right forearm and wrist, and also the right side of my neck.

Getting back to the left side, I went on a research hunt for information regarding the sacroiliac.  The following link has a great description of sacroiliitis (inflammation of the sacroiliac) and its symptoms.  There is also a nice graphic showing the sacroiliac joints.  Basically, they look like two fractures in top area of the hip bones, connecting the sacrum (tailbone) and each ilium (hip bones).

Sacroiliitis Info

Except for the eye problems (though I have had some minor problems within the last few months, if I remember correctly), the short list of symptoms for sacroiliitis seems to fit.  I have been "hot and cold at the same time" as I like to describe it, for pretty much most of every single day for months now.  I shiver at the slightest breeze, even, and especially, if I'd just been sweating from feeling too hot.  At night, I pile on three layers of sheet, blanket, and comforter to warm up, then wake up in a pool of sweat.  I simply cannot sleep if I shiver.  Could this be the "fever that appears quickly"?  I can only speculate.

The rest of the symptoms listed surround pain.  Of course, pain and weird symptoms are already part of the Fibromyalgia, so it's hard to say with any certainty that another condition like this could be overlapping with if the symptoms include pain. 

Ah, such is the life of a fibromite: always wondering and trying to hunt down answers.

The Ankylosing Spondylitis (AS) research actually collided with my Sacroiliitus research.  I remember seeing "Ankylosing...(something)" in Fibromyalgia support groups and other forums online.  I had no idea what it was and could hardly remember the name, but, skilled little researcher that I am, I found it and learned all about it.

Ankylosing Spondylitis (AS) Info

"Ankylosing spondylitis is a chronic inflammatory disease that primarily causes pain and inflammation of the joints between the vertebrae of your spine and the joints between your spine and pelvis (sacroiliac joints). However, ankylosing spondylitis may also cause inflammation and pain in other parts of your body as well."

It seems to me that sacroiliitis could be considered an earlier stage of AS, if it were to progress.  AS can result in bony growth at the vertebrae, causing fusion of the bones.  In turn, this means the poor AS patient has reduced mobility and a higher chance of fracture.  I've seen some very drastic photos of people with very advanced AS (AKA "Bamboo Spine" - yikes!), and they are very hunched over.  VERY.  (Don't look unless you can handle it.)

It's a scary prospect to think about that I may have or be on my way to having either of these conditions, but I've always been ready to face my fears in favor of responsible action.  I can handle the diagnosis; I just want to do what I should to keep things from getting worse and (dare to dream) possibly heal or reverse whatever is wrong.

Since I had had many MRIs, CT scans, and x-rays in the last few years, (and who among us fibromites hasn't?) I also started reviewing my own test images to see if any differences can be spotted at the sacroiliac joints or spinal bones.  From what I've read, these conditions are not easily spotted until several years of damage has already occurred, and there is no difinitive testing that can concretely diagnose either.  Figures, right?

Well, the good news is, my untrained eyes do not notice any obvious bony growths or inflammation.  Then again, I didn't have the appropriate tests, targeting the specific areas.  The picture on the left is an x-ray taken during a CT scan on 3/8/08.  The picture on the right is an x-ray taken during another CT scan on 6/5/09.  You can clearly see the sacroiliiac joints in the first picture, but it's a bit harder to see in the second one.  Both times I had to drink that nasty gastric dye which makes my colon look nice and bright, but blocks the bones a bit in the later x-ray.

Anyway, I will have to mention my hip pains to my doctor the next time I see him, in case he can find any reason to worry about either of these conditions (or anything else).  If you have had either of these conditions or want to add any comments about any of this, please feel free.  I love the feedback and would like to know more about the prevalence of these conditions among Fibromyalgia patients.

The Fog (Short Story)

I was inspired to create something, so I wrote this short story.  I hope you enjoy it.   The Fog

Nauseating Pain

I'm not really in the mood to deal with life's challenges today. My flare is continuing and today, my pain is nauseating me. On top of that, I've been having dizzy spells. This is all very distracting and I feel pretty foggy. It's difficult to concentrate on getting any work done... which is why I'm posting this blog right now.

Days like this make me wonder how I can go on. I can't possibly do a good job at work when I have such health problems, can I? I guess I need to take my own advice and do "just one thing" by getting through this day and not worrying about the rest of my life all at once.

I've taken a Tramadol and I've got "Bunny" warming my back up. I also have a massage scheduled for this evening, so I can also look forward to that. I know I'll feel a little bit better, at least for an hour.

That's a WRAP

I have finally typed up and updated my own, personal, Wellness Recovery Action Plan (WRAP)!

The idea of the WRAP is from chapter 16 of the book: Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin Starlanyl & Mary Ellen Copeland


The WRAP is a customized group of lists for us fibromites. Since we frequently get fibrofogged and have a lot of various symptoms and treatments to keep track of, It helps to write things down. Having all of this information organized into useful groupings and keeping them together in a single document is also helpful for our caretakers, should they ever need to consult this kind of personalized fibromyalgia manual.

I made some changes from the book's instructions to the section names, because I wanted their relationships to each other to be more obvious and congruent. I also added some graphics to make it snazzier. However, I started this project by scribbling down thoughts in each category on blank paper in a big binder, then kept consulting and tweaking it as I thought of more. That's also why I added in a last updated date for myself. I anticipate that I will think of and add things to the document at a later date. Every time I print it, I'll have the "last updated" date tell me when I did.

You'll also notice that I don't have anything under the "Crisis" section yet. I am not sure what I might be like in an absolute fibro-crisis, or what plan of action I should take, as I have not yet had what I believe would be considered a crisis. However, as time goes on, I might be able to notice certain behaviors or needs when I really feel super-shitty. For now, I'm just happy that I didn't have any experience with that section just yet.

Special thanks go to Glenda Bibbero of WeAreFibro.org for reminding me about this chapter in the above-mentioned book, which I glossed over the first time I read through the book, early in my new life with Fibromyalgia. She asked me about it and wrote one up herself, publishing it in her profile journal for other members to see. She inspired me to write up my own WRAP for myself and share it with my readers, too. I also mentioned the WRAP to My doctor, who encouraged me to share it with you all here, in my blog.

Fibrofriends, I found this exercise to be very valuable to me, both during and after composing all the sections. I suggest you jot down the headings and keep your notes handy wherever you can sit and write for a few minutes. In time, you'll have your own WRAP all wrapped up and ready for your next fibrofog moment.

To read my WRAP, click:
Zouras - WRAP

Behind and Overwhelmed

I have been bad about keeping up with my blogging and journaling and overall fibro stuff lately. I was so gung-ho when I started all these projects and did fine during my time off work, but now that I'm working, I feel like there's no time left!

I went to see my fibro doctor a couple days ago. He made some changes to my dosage and added a new supplement to my regimen: magnesium w/ malic acid. I just ordered some from drugstore.com and will be taking it twice a day for pain. I hope it helps.

My sleep has been kind crappy lately. I've been waking up a lot, but not for hours (thank goodness) - just seconds. My dreams are stressful and painful, too. The other night, I dreamt I was grazed by several bullets and my wounds were becoming severely infected. I remember feeling intense pains in my face, hand, and other areas. I don't remember getting shot at or who or why it was done, just that I was hurting and needed medical attention or something! The damned dream went on an on, as usual, and there were many chapters and scenes. Why is my brain so busy at night?

Last night I woke up a few times with a terrible migraine. When it was time to wake up for work, I still had it, but it wasn't as awful as earlier (thank goodness). It's a sign that I'm flaring. Yesterday I felt hot and cold at the same time, and I had more pains everywhere. Today I have back pain, head pain, neck pain, limb pain and I really, really did not feel like going to work today. I set my alarm for another hour and tried to give it a good nap to see if it would help. It's better than nothing, but it wasn't much.

Anyway, I told my doctor about the WRAP - Wellness Recovery Action Plan - from Ch. 16 of the FMS/CMP Survival Manual book. He encouraged me to put it online for others to see. Right now I have it scribbled down on paper for myself. I consulted it today after recognizing signs of a flare that I need to address. It's helpful. I will type it up on my blog soon and share it with the world.

I'm also 20 pounds heavier now than earlier this year (February?). My skinny clothes don't fit me and my fat clothes aren't loose. :( I'm counting calories and trying to restrict myself to 1600 calories per day. I'm also trying to get my activity levels back up again, but it's a slow and frustrating process. You can't make up for lost time - like I tried to do yesterday. I probably made my symptoms worse today.

For now I'm just ick.

How I Spent My Sabbatical

As you may be aware, I have been given a very gracious gift by my employer: a three-week sabbatical. After seven years of continuous employment, employees of my company are given three weeks of time off that must be taken all at once. These three weeks are in addition to the usual time off allowed for the year.

I chose to take my sabbatical during July, to maximize my freedom with outdoor time. Sadly, my time off is almost up and I will return to work again on Monday. As I wax nostalgic about the past three weeks, here is a list of some of the positive things I did during that time.

1. I went through Chapter 16 of my FMS/CMP survival manual book and created my WRAP (Wellness Recovery Action Plan).
2. I had my refrigerator repaired.
3. I slept late whenever possible.
4. I spent a lot of time in my native yard, observing all kinds of wonderful wildlife, like butterflies, hummingbirds, and woodpeckers.
5. I stretched and took walks around the neighborhood almost every day. I frequently stretched outside in the yard, getting my sunshine and enjoying the wildlife at the same time.
   
6. I walked to the library and checked out a couple of books.
7. I enjoyed homemade salads and fresh summer fruits. I frequently enjoyed them outside, while watching nature.
8. I wrote in my journal.
9. I ordered some gifts for myself and others, including stationery made from elephant poop (really), and a mbira (thumb piano). I spent plenty of time playing with the mbira (I learned 10 simple songs already) and my old harmonica, too.
10. I took a brief ride on my bike. (The brakes need to be adjusted.)
11. I created things online for my Zazzle store.
12. I took a few epsom salt baths.
13. I watched The Red Balloon.
    
14. I visited a local pub for lunch and a drink, then bought myself an ice cream cone.
15. I joined a new meetup group and met some interesting folks.
16. I did two pub crawls in different towns with my husband.
17. I got a massage.
18. I listened to classical music while reading in my recliner, while sipping coffee, tea, or water.
    
19. I baked banana bread from scratch.

I am sad that my "summer vacation" is almost over, but I'm very grateful that I had the chance to take it easy and forget about work for a while, all while enjoying great summer weather and the peak of growing season.

"Do you want to BE your disease?"

My husband asked me this question recently. It's because I'm so forthcoming about my condition with everyone, even people I just met - or never met yet (online pals). It's a question that made me stop and think. Am I doing the right thing? Is this information going to alienate my new friends, or cause them to judge me in a negative manner?

I just like to share everything, so people don't guess or wonder about me. I realized that I am secretly hoping to preemptively give people the information that would explain any strangeness about me that I expect them to encounter, eventually. With an invisible disease like Fibromyalgia, I don't want people to think I'm fine because I don't look or act "sick" during their initial interactions with me - I may not be up to the next outing or whatever, and want to be upfront about that. I'm the kind of person who doesn't like those phony "let's get together sometime" un-vitations. We all know someone who confirms attendance at an event or party and then doesn't show. I HATE that. I am the kind of person who means what she says, and I don't want any false expectations. I figure that it's only fair to others if I let them know what's going on with me right away.

My husband's got his own invisible disease - Crohn's - so I can certainly value his perspective on this. Perhaps he doesn't like to disclose his health problems to everyone he meets because of the embarrassing nature of the worst symptoms. Although I don't mind discussing my IBS at the dinner table, I can certainly understand not wanting to tell every stranger you meet that you sometimes have to make absolutely sure that a toilet is nearby. That's not a "nice" first impression. (And yes, I also notice that others aren't so happy to discuss my IBS, either - dinner table or not. Wimps! Heh.)

His symptoms also wax and wane, like mine do, so he also appears to "not look sick" to others when he's able to be social. However he's had his diagnosis for a lot longer than I've had mine, so he knows his triggers and cycles better than I know mine. (Color me jealous.)

I think there may also be a gender component to the differing ways we view this topic. As a male, I believe he doesn't like to introduce himself to the world as a sickly person, with vulnerabilities. It's just not masculine. As a female, I don't worry too much about appearing sickly, I guess, because I don't really believe that I need to appear so strong. I do have some self-respect, don't get me wrong, but I know that society doesn't expect me to be Hercules because I'm a chick. That means that I don't really see the big deal in letting everyone know that, well, I'm not Hercules - not by a long shot. Guys - yeah, I guess they might not care to remove the doubt so early on. I can understand that.

So, do I want to BE my disease? No, of course not. I don't want to celebrate it or love it. But I do like to be clear with people. I may seem okay today, but I'm in pain all the time, even when I'm smiling. It takes a lot of effort to make lemonade out of these lemons, but I'm doing it, for my own sake. I want people to know I'm making an effort to choose to interact with them. I am tired. I'm uncomfortable. And I'm in pain. Perhaps I could be napping right now, or resting up, or making progress on some important project or chores, but I'm writing this post today because I care about you, my dear readers.

I have Fibromyalgia. I'm also a person with varied interests. I'm hoping you will not judge me too harshly for telling you the truth about me, whether it's nice or not. I just know I'm not going to hide it like some skeleton in my closet. It's not my fault that I have this challenge - it just is. This is part of who I am.

Some Quiet Time

Here again I lie in bed
While countless thoughts race through my head.
Dare I look to check the time?
Of course I do - 1:39.

Spouse and I retired by ten,
As always, I took my Ambien,
Yet he's the one who's sound asleep,
While I avoid making a peep.

I notice silence; no birds are singing,
Though, of course, my ears are ringing.
I'm also hungry at this odd hour.
Should I have a snack, or rely on will power?

Maybe if I close my eyes
Husband's snores will hypnotize.
I try it for a little bit,
But my thoughts return to... a biscuit.

No! I must not give up hope!
It's just some quiet time. I'll cope.
I turn over, snuggle in,
Take a breath, and even grin.

Yes, I will be dreaming soon,
Not thinking thoughts about the moon,
Or wondering how my level of pain
Will soar tomorrow, thanks to my brain.

Not reprioritizing stuff
Because I won't be up to snuff.
No, I won't worry 'bout tomorrow,
Whether there'll be "spoons" to borrow.

I'll just return to dreaming bliss,
Perhaps I won't remember this.
I check the clock. Two hours have passed.
I can't believe it. That went fast!

But this is how it always goes.
Fibromyalgia's insomnia blows.
Perhaps, someday, they'll find a cure.
For now, I guess I must endure...

My New Mascot: Fibro Frog

(Sung to the theme for Spiderman)

Fibro Frog,
Fibro Frog,
Steals your thoughts from you
like a hog.
What's that word?
Never mind.
I can't even remember why
I spoke up...
Here comes the Fibro Frog!

A Typical Day for Benia

Once again, I have managed to be very late to work today. I am very lucky to work at an office where I can be flexible with my hours and adjust as needed. However, there are certain core hours during which we are all supposed to be in the office and I know how hard it can be to make up time if a deficit builds up. Fibromyalgia be damned!

In case anyone wonders why I am always coming into the office so late, please know that I typically eat lunch at my desk and work late to ensure I earn an honest week's pay. I will also expose some of the mysterious details of my frequent lateness here, in this blog.

As I have already outlined in an earlier post, I take a lot of medicine to try to control the many symptoms of Fibromyalgia. They don't relieve me completely, but they all do a little something for me. Among the drugs I take are two that help me sleep - one helps me to be asleep, the other helps me to get all the proper stages of sleep. Sleep is typically the first focus of treatments for fibromites, because studies have found that anyone with inadequate sleep has an increased sensitivity to pain. For fibromites like me, that means I feel worse, sleep worse, etc. It becomes a downward spiral of maddening symptoms. So, doctors encourage us to get as much sleep as we can get.

Getting back to my day, I take medications that help me sleep. I typically get to bed around 10pm on a worknight. Getting up at 6am or even 5am used to be fine for me before the FM, but now, it's unthinkable. Don lets me sleep until he leaves for work, which is usually closer to 7am or 8am. I am grateful that we have found this system, but here is the first reason for my tardiness.

Another typical symptom of Fibromyalgia is muscle stiffness that is especially bad in the mornings. I experience that morning stiffness just about every day. When I first wake up, my muscles are very tight and painful. Walking and moving around is challenging for me, and I need to be especially careful not to hurt my stiff muscles and cause a flare. As a result of this symptom, I am very slow to get to the bathroom, get to breakfast, shower, get dressed, etc. I probably need twice the amount of time it would take a normal person to do the same morning routine. I don't want to go slow, I have to.

Next, is the inevitable IBS episodes. I usually eat cereal with unsweetened soymilk for breakfast. When the IBS is especially bad, my belly starts to hurt right about the time I'm finishing up my cereal and I need to rush to the bathroom to violently dispose of the gas and, well, you know the rest - it's ugly. On other days, there is no urgent rush, but there is usually discomfort and pain, and a waiting game in the bathroom for some relief. There are some days when relief doesn't come, and the clock urges me to get going and all I can do is hope things will work themselves out later on. Today was one of those days. I am grateful that I am usually limited to having the more violent episodes of IBS only after meals. Back when this was still new to me, I hadn't established a pattern, and the unpredictableness was adding stress to my days. Knowing really is half the battle.

Still with me? I'm impressed!

Among the other symptoms I typically endure on any given day is a daily nausea. My doctor and I speculate that the muscle relaxer that I take might be responsible, or at least contributing to, this symptom. It's not usually the nagging kind of nausea that feels like vomiting might actually be a possibility, so I'm glad it's only a "fake nausea" that I can usually handle. I am noticing that I get this feeling of nausea around lunchtime most days. Luckily, I am able to eat and it helps ease the feeling a bit, but it returns after mealtime is over, unfortunately. (Of course, this makes it tempting for me to eat when I probably shouldn't. That's something I need to watch as my waistline expands.)

I also have been dealing with "fibrofog", as I mentioned in another post. This has been widely reported among other fibromites, and includes problems with concentration, being distracted, being unable to think, having difficulty finding the proper words, memory issues, and other cognitive problems. I discussed this with my doctor during my last visit, and he informed me that getting a proper quality (not quantity) of sleep is crucial to combatting this symptom. What fibrofog does to my daily experience, especially in the mornings, is slow me down in making sure I have taken all my meds, put all my clothes and accessories on (can't leave the house naked), taken my purse, keys, lunch, and anything else I need for the day with me. Today I needed to remember to take test results with me for my doctor's appointment later on. Forgetting things after I've already driven down the block has occurred, though I'm proud to say it has become less frequent.

There are many other things I may have to deal with on any given day, including:

• headaches
• vision problems
• pains of all types, styles, and severities, in all areas of the body
• fatigue, low energy (read the famous Spoon Theory)
  
• skin sensitivities (itching, hives, etc.)
• annoying tingling sensations in any areas of the body
• dizziness with or without vertigo
• sensitivities to: sounds, lights, visual patterns (like half-closed blinds, small checkers), smells and chemicals, and/or drugs

By the time I get through the morning dose of medicines, breakfast, vitamins, IBS, stretching and exercises if I'm lucky, showering, getting dressed and made up, and preparing lunch and whatever else I need for the day, I am typically out the door anywhere between 8am and 9:15am, with frequent exceptions (like today). Today, I left home at 10am, and I hated it. I have a doctor's appointment today at 5pm, so I cannot make up the time I missed today. Luckily, work is not as frantic today as it was yesterday.

So that's a typical morning for me. I'm sorry if you suffered an inconvenience from my tardiness. I hate to be late, but because of the fibrobeast, I must do whatever I can to save myself first, before I can think of helping you. I hope you understand. Thank you for reading.

"Bunny" and the Doctor Visit

I decided I'm going to call my homemade rice-sock "Bunny". It's gray, fuzzy, and cuddly, just like the baby bunnies running around in my yard lately. Isn't she cute? :)

I am finally feeling better after that last icky flare of mine. I am wondering what it was that triggered the pain in my neck that spread its ugly tentacles into my back and limbs. Perhaps I overstretched that side. I know I have had a history of stretching more than I should. I'm told the stretch shouldn't hurt, but it's hard to know how much of a stretch is sufficient if I'm already in pain before I begin. I can believe that I may have stretched more wherever it was painful, in an attempt to loosen up tight muscles there. Perhaps that is a mistake. I will have to keep that in mind during my future stretching routines.

Yesterday I visited my Fibro specialist - a kind neurologist who is working with me to try to reach my pain-fighting goals. I told him of my recent struggles with vocabulary and other fibrofog issues. He asked if I was sleeping okay. I rely on my Zolpidem (aka Ambien) to help keep me asleep throughout the night, and have not noticed any changes in sleep habits lately. He reminded me that the Zolpidem may keep me "asleep", but it doesn't help me reach those deep stages of sleep of which Fibromyalgia robs me.

The Doxepin I am now taking is supposed to help me get better quality sleep - those deep stages of sleep that I can't otherwise get with Fibromyalgia. Since I am on a low dose right now, he is having me double my nightly dose of Doxepin to help me get better sleep and see if it helps with the fibrofog. I have started taking 2 capsules at bedtime last night. It's probably too early to tell, but I am feeling pretty coherent at the moment, despite being awakened several times by my husband's (loud) pager. (He's on call for work this week.) Poor Don had to work on IT issues for work since about 4am today. He is more tired than I am today.

I had to put the daily workouts on hold during the recent flare-up. I think I need to be even slower in progressing than I have done, just to make sure I don't cause another flare. The doctor suggested a yoga class if I am able to do it. I think that might be something to think about when I am able to figure out my stretching limitations and work my way up in stretch/workout time a bit. He agreed that it's extremely important to take small steps toward increasing my activity levels to avoid flare-ups.

Armed with the medication and knowledge I have, I'm hopeful that I'm going to have more good days ahead.

Mack Truck Collides in Fibrofog

Today I woke up with such a stiff and painful neck that I couldn't even imagine moving, as I told my husband Don this morning as he kissed me good-by and headed off to work. It even hurt to lay still, but somewhat less than when I moved or even tried to move. I remember I turned my head about half a degree to the right to see him from the bed while he was talking to me, and it was some of the "loudest" pain I've ever known - screaming! Despite being all out of sick days for the year, I notified my boss that I needed to stay home and repair myself. That means rest and extra meds today. Extra meds likely means more fibrofog, too, and I'd already been having a bad bout of that.

Writing of fibrofog... I heard myself turning into an apparent idiot yesterday, while the damned fibro-monster stole my vocabulary from me as I watched in utter horror. Okay, maybe that's a bit dramatic, but it was definitely noticeable and I sure didn't like it.

I was in a meeting at work yesterday. It was my meeting; I was there to gather requirements for a new project. My current boss and another manager at the company (my old boss) were the two other attendees in this meeting. The pauses I was taking to find the words to express myself were embarrassingly long, especially in comparison with the cadence of the conversation that was going on between the other two people in the room. I started to say something, then I just watched their eyes as they both waited with anticipation of what I might finally say. And I couldn't wait to find out what I'd say, either. What I settled for, eventually, was somewhat acceptable, but not optimal. I continued through the meeting, aware of this handicap, as best as I could and got the information I needed, fumbling along with lesser words and phrases than I intended to use. It's like my language skills are just limping along, crippled and deformed. If I had waited until I'd found the words I really wanted to use, it would take too long and I would lose my turn to speak. It's so frustrating, especially during situations like this, when my income is on the line.

Later that evening, I went out to get some tacos for dinner with Don at our favorite local taco place for "Taco Tuesday". I usually do the ordering when we go, so this experience was nothing new for me. Thanks to the fibrofog, though, I felt like I was going through the usual motions, but needed more time to think about what I was doing and saying to make sure it was correct. The poor kid taking my order must've wondered if I was retarded or something. I sure felt like it. Actually, I take that back. I have heard retarded people speak and they seem to do just fine. I don't know how to compare myself when I'm so foggy. "Der... um.. I'd like....two....tacos....." Ugh! What have I become?

While we ate our delicious tacos, I mentioned my recent struggles with language to Don. I seem mostly fine when I converse with him. There are times when I need to pause or whatever, but the casual conversation probably helps make it less noticeable. He asked me (a kind of "oh no" asking) if FM affects my brain, too. I explained, briefly, that yes, unfortunately, FM affects the central nervous system, which affects EVERYTHING, including my brain. It's a bitch of a disease. I forget that he isn't as in tune with all the subtleties of FM as I am. I am constantly reading up about research and other people's experiences with this condition - mostly to help me understand and cope with it all. I know how complex and all-encompassing it is. Fibromyalgia really is a life-changing condition, despite any outward appearances of "normalcy" among its victims.

At any rate, I am here at home, trying to relax, but letting all the nagging responsibilities of everyday life interrupt my sanctity. I am sweating a lot now, so I replaced my hot tea for a cold beer - a delicious Goose Island India Pale Ale. I figure I'd enjoy the flavor as well as the pain-masking benefits of the beverage at the same time. Maybe it will help me relax, too.

Nauseating Neck Pain, Back Pain, IBS, Vision Problems, and Fatigue... or... Just Another Day with Fibro

The title about says it all, but I'll elaborate a bit.

I was doing pretty well after a moderately active weekend. My back has been sore from all the bending I'd done while working in my native garden Sunday, but it was worth it. I enjoyed the great weather and all the sites and sounds of our wonderful yard. We watched a baby bunny nibble on the grasses in our flagstone path and saw and heard many, many birds. I love Native Suburbia!

Well, today, I was awakened by the house wren that lives in our neighbor's birdhouse. The birdhouse hangs near our fence, and he and his mate are always chirping away on the fence or in our trees for all the world to hear. I love him!

Anyway, I went about my usual morning routine. I ate breakfast, took my vitamins, did my morning stretches, dealt with a brief episode of IBS, then I took my shower. As I was toweling off, the back and left side of my neck started a stabbing pain. This is a trouble spot for me, and I remember a previous start to pain in this area started after a morning shower, too. Perhaps I'm moving in an odd way to dry off? At any rate, it's the kind of pain that makes me instantly feel a bit nauseous. I drove to work with my warmed rice-sock on my shoulder and popped a Tramadol when I (finally) got to work today. (I ended up having to reschedule a morning meeting that I couldn't make, thanks to my symptoms slowing me down.)

Meanwhile, I've been having problems with my vision again. I remember having constant problems with my visual acuity immediately after I was rear-ended. I went to the optometrist and he scratched his head as he reported that my prescription had changed drastically - by +1.00 in both eyes, although my previously perfect reading vision suddenly sucked. (I wear contact lenses.) This is unheard of. Whose distance vision improves? And so suddenly? And I'm not ready for "reading glasses".

After doing some reading, I chalked it up to new muscle tension around my eyes, possibly squeezing my eyeballs enough to make a difference in the shape, and thus, my vision. It's a theory and I haven't read anything that confirms that this could actually happen, but I'm going with it. The doctor had nothing better to offer as an explanation. If you have any experience or knowledge about this, please feel free to comment.

Well, lately, I'm experiencing the same kind of problems with focusing as then. I'm having trouble reading the computer screen clearly, signs, etc. I can do it after a few seconds, but it seems to take conscious effort, and it still doesn't seem to be quite right. I don't know how to explain it, but there seems to be an uncomfortableness in what I look at. I believe the massages, muscle relaxants, and stretches are helping to relax my muscles and myofascial trigger points. Could it be possible that the muscles around my eyes are also relaxing and perhaps adjusting the shape of my eyes again? I hope not. I just bought another year's supply of contact lenses. :P

The last time I brought my rice-sock buddy to work with me, I felt a bit better toward the end of the day. I am hoping I will at least make some progress on my neck, if nothing else. Hopefully tomorrow morning I'll be able to hop on the elliptical or do some more walking for my little workouts. I don't want to be a quitter!

Getting Back on the Hamster Wheel

Ah, yes, regular exercise... it's not a cure, but it is supposed to help lessen at least some of the many symptoms of Fibromyalgia. I've read it. I've heard my doctor say it. I also know it's just good to move around a bit, generally speaking. It warms and loosens up the tight muscles and helps keep the blood flowing so all those chemical processes have a chance to work (as best as they can).

With my recent fibroflares, the flu, fatigue, fibrofog, and whatever other "F words" have been affecting me lately, it's been difficult to even imagine voluntarily moving around, especially without at least getting some household chore done at the same time. I just couldn't commit. Well, now my pants are getting tight.

This can't go on; it's time for action! The daily stretching routine and sporadic walks around the block or so are fine and dandy, but I need to make sure I get regular exercise every day. I know that if I don't use my muscles, I'll lose them to atrophy, which causes that vicious circle of FM symptoms and inactivity.

My doctor advised me to use the following guideline for adding activity to my day.

stretch time = exercise time

As I briefly mentioned in an earlier post, I've been doing a daily, gentle stretching routine each morning that takes me about 5 minutes to complete. It covers most major muscle areas, starting from the neck, all the way down to my ankles. I also add new stretches that I like now and then.

Yesterday my "just one thing" was making sure I started doing exercises again. My last flare has finally subsided enough to allow for some very minor activity. To start out, my exercise routine time matches my stretching time at 5 minutes.

Yeah, I know all you "normals" out there are probably scoffing at all this hullaballoo over 5 minutes of activity. I can just hear you going "What? Five minutes?? Pshhh....". That's okay. I used to not know about people like me until I became one. Well, so you know, I'm not normal anymore (was I ever?) and now, for me, doing exercise is a big deal. I know my fellow fibromites understand.

Besides, I'm embarking on a personal goal and announcing it to the world. What a commitment! Aren't you impressed? ☺ I am using you all as additional inspiration to continue, even when I'm tempted to quit. And so far, so good. I did 5 minutes of walking around the first floor of my house yesterday morning, and today I did about 6 minutes on my elliptical machine, with some stretching before and afterwards. So, I'm proud of myself.

Tomorrow morning, I will attempt 7 minutes of stretching and 7 minutes of activity.Keep me going, guys! Don't let me give up.

Just One Thing

One thing I've learned about pacing my activities is that you can compromise between the feeling of complete procrastination and doing it all (and suffering from a flare). I have named my compromise "Just One Thing".

For me, knowing I have a long task list is stressful, and we fibromites know that stress is a big contributor to our symptoms. Without going overboard to do everything at once, I can settle for doing "just one thing" instead.

For example:
I walk into our messy kitchen after a full day's work, frown and sigh at the time and effort I imagine it will take me to get it all cleaned up. After the initial shock and disappointment of it all, I remember my philosophy and pick one thing that I can do right at that moment to help reduce the overall load of the bigger project. For instance, I can empty out the dishwasher and put away the clean dishes. After the dishwasher is empty, I may be tempted to go ahead and do another thing, like loading the dishwasher with the dirties. Depending on how I feel, I may or may not, but the pressure is off. I will first consider the effort I've just spent and whether or not I should take a break to prevent a flare. The dirty dishes will wait until later or tomorrow if they must. Then, when I can, I do "just one thing" again and make a little more progress.

If you tend to get overwhelmed by the chores and tasks ahead of you, pick one thing to do today. It takes the pressure off and grants you that peace of mind that finishing any task can give.