My Furry Houdini

Looking back at my title, I wonder if it seems pornographic.  I suppose if you have a dirty mind it does, but what I’m referring to here is my cat, Ari.  He is capable of amazing feats and get out of any trap.  Except that cat carrier, thank goodness.

When Ari was about 8 or 9 months old, we decided to put a collar on him for safety purposes.  I even had a tag made up with his name and our phone number on it.  After much fuss we got the collar on him.  We let him go and he jumped high up into the air, spun around and ran away.  We couldn’t find him for hours, and when he finally reappeared, the collar was gone.  Eleven years later, we still haven’t found the collar.

Right now we are going through a 3 week course of medicating him for severe seasonal allergies.  He’s already gotten a shot; that didn’t work.  When the vet asked me how I felt about medicating at home, I gave him a sideways glance and asked, “In what formmmm…..? It’s impossible to give him pills; he regurgitates them.  So now we are giving him two liquid medications, one for inflammation and one for anxiety.  We get him wrapped up in a towel that is tight at the neck and holds the rest of his wild body in check.  Then I put my hand around his head to get my thumb and pointer finger at the edge of his mouth and push in gently to get him to open up.  Now here’s the part I wasn’t expecting to be easy: the dummy meows his displeasure, giving me a nice easy opportunity to squirt the liquid into his mouth.  Then of course he starts thrashing around under the towel and we let him go.  I cannot wait until this is over.

The worst part of all of this is that it’s a two-person job, so I have to wake up early to do the morning dose with my husband before he goes to work.  Half the time I’m up that early anyway, but when I can just sleep in until whenever is much better, just that knowing I’m not on a time restriction.  I am sleepy right now, quite sleepy.  I have a 10am appointment which will not require much energy, but I’d rather go back to bed.

Yesterday I had a follow-up appointment with my rheumatologist, and she increased my Lyrica.  So now instead of twice a day, I’ll take it three times.  And of course this makes me even more tired and wanting to sleep in.  I am having good effects from the Lyrica.  I’ve been on it for about two months now, and I have had few nights of painsomnia.  That is a huge relief.  Overall my pain has decreased, though it could certainly be a lot better.  The cramping and the shooting, stabbing, searing pains are still there.

I still limp around sometimes, and other times I am too stiff to walk down the stairs.  I hurt during the middle of the night when I need to change my sleeping position.  (Why doesn’t my body just do this on its own instead of waking me?)  My body is stiff and sore at a minimum when I get up in the morning, if not actually hurting as well.  (I can feel arthritis beginning in my lower back near the vertebrae fusion.  The doctor said that might happen, and boy was he right.)  My legs are cramping right now, begging me to get up and at least try some stretches.  Legs, I think you’ve got he right idea.

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Running from Fibro

There’s a pain in my back that just won’t go away, and my arms almost constantly feel like lead.  My legs can handle standing for only a little while before they need a break.  I get exhausted just taking a shower; sometimes I even need a nap when I’m done.  I’ve started using a simple leave-in conditioner instead of the normal kind- it takes too much effort to condition my hair in the shower.  The pain in my hips and rear come and go, and I can’t help but feel really annoyed when my elbows start hurting.  My thighs ache and burn no matter how much I stretch them.  My brain is in a fog half the time.  I think my husband is often confused about what I’m trying to tell him, but we usually figure it out eventually.

I want to run from this, but there’s nowhere to go.  It’s just like with Crohn’s- you can’t wish this crap away.  It’s relentless and undiscriminating.  With a cramp here and a stabbing pain there, exhaustion nipping at my heels, I keep wondering when it will stop.  But of course it won’t.  That’s not how this works.  Chronic illness does not, by definition, go away.  It stops for nothing or no one, not for plans, not for the desire to get out of the house and do something fun.  Not for the desperate longing to get up off the couch and do the dishes or something else somewhat productive, some way to “earn my keep.”

I am extremely fortunate that my husband does not think I need to earn my keep.  On the flip side, I don’t want him to have to do everything, which he certainly would if I needed him to.  He already works at a job that’s stressful and that he hates, just so he can provide for us and have good health benefits.  I was thinking of going back to work part-time (I’m on a two-month hiatus), but I just can’t fathom doing that right now.

Each day presents me with a typical set of difficulties, but it’s where and when those difficulties pop up that’s a surprise.  I never know when I’m going to need to sit down and rest or take a nap.  How could I possibly go to work like that?  Thank goodness my husband understands and doesn’t pressure me.  He is concerned about me becoming isolated, but I don’t really see how that’s avoidable right now.  Perhaps one day I’ll be feeling better and will be able to keep plans with people.  I’ve only been to church a handful of times this year, first due to back surgery and now because of the fibro flaring almost constantly.  I think I’m also now getting arthritis in my back, which I was told was a possibility.

There is an upside to not working, of course, like not having to go to work.  There are a lot of things around here that I want to focus on, like exercising more when possible, keeping the house cleaner, and some hobbies like learning Spanish and crocheting.  And of course keeping up with my favorite TV shows and books.  That’s all when I have to energy to do something other than lay on the couch and stare at the television like a zombie or have to go to bed for a second nap of the day.  I’m hoping the medication I’m taking will help me feel better.  Although it may not turn me into a spring chicken, I’d at least like a lot more energy and a lot less pain.

 

 

Awake Again

It’s nearly 5am; I’ve been awake since 2:30.  Painsomnia strikes again!  I’ve watched television and read some of a book, which I guess is fun during the daytime.  There is something special about being awake at an odd hour when the rest of the town is still sleeping, but right now I don’t feel like it’s special enough to warrant painsomnia.  Yes, I’m getting tired again, but not quite enough to be able to sleep through the pain.

I had a big day planned for myself.  There are some things to do around the house, cookies to be baked, and some packing to do for a weekend trip.  All of these things sounded good yesterday as I wrote them down on my “to do” list.  Now the tide has changed again.  This is the unpredictable nature of fibromyalgia- it does what it wants.  It makes it hard to make plans, hard to keep plans.  I just try to keep things low-key and take it day by day, hour by hour, minute by minute.

It would be nice to be able to pick and choose which days I must rest and which I can have to do as I please.  Although that’s an impossibility, I can dream.  I really think I just overdid it yesterday.  I had some pain but also some energy (weird, right?), so I did a bunch of things.  By the time dinner rolled around, I was pretty pooped and didn’t feel like cooking.  I suppose when you’re ready for bed at 4:30pm, it’s possible you used all of your spoons too quickly.  (Note: I stayed up until 7, read till 8.)

So with 6.5 hours of sleep under my belt, I’m feeling a little loopy.  I just brushed my teeth, filled my nose with allergy nasal spray, and put some allergy drops in my eyes.  I’m feeling itchy already today.  Of course, having a sinus infection doesn’t help that.

I have a condition called occipital neuralgia, which is basically a whole lot of pain at the base of my skull.  There is a procedure that would possibly provide long-term relief, but my insurance company has decided that it is experimental and so won’t cover it.  There’s a procedure that helps temporarily, say for about 3 months or so, and that is two shots of steroids and anesthetics to the back of my head.  Talk about ouch.  Thankfully it only hurts for about 20 seconds and then goes numb.  Then when the anesthesia wears off, my head is sore for 2 or 3 days, and then I finally feel better.  It’s not a process I relish, but the relief it can bring makes it worthwhile.

For the past couple of weeks I’ve been having heart palpitations and a rapid heart beat quite often throughout the day.  Naturally I thought it was just the fibro, but then I realized, um, hello, I have a hypothyroidism.  So maybe it’s a medication issue.  Sure enough, the blood test showed that I’m currently on the hyper side and need less medication.  My doctor prescribed a dosage adjustment, and hopefully soon I’ll start to feel better.  I don’t know how long it takes to feel a difference.  We’ll see, I guess.

This weekend my husband is running a 10k.  He just did a triathlon last weekend.  Yesterday I called his legs “meaty” and he looked at me like, “what the hell?!”  I have no idea why he’d be offended by that.  Did I imply that he’s too big?  He’s not and has very sexy legs, actually.  I’ve told him before that if he just shaved his legs and put on a skirt, he’d look really hot.  So far he hasn’t gone for that idea.  And really, do I want my husband wearing a skirt?  Somehow I don’t think it’s his style.

Oh So Tired

I just can’t muster the energy to go to the doctor.  Not for my fibro, but for a sinus infection.  It sucks.  I cannot get through to my allergist’s office, but I know they wouldn’t make me come in, would just call in a prescription based on my description of symptoms.  If I call my family doctor, I’m sure I could get an appointment today, but yes, they’d make me come in to be seen.  I don’t want to go anywhere at all.  My bones are weary, dead tired.

The past couple of days have been rough.  I wake up feeling so tired, like I’m need a few more hours of sleep, but I get to a point where my brain doesn’t cooperate.  So I get up, drink lots of caffeine, and still feel tired.  I take a shower and my shoulders feel like lead.  It exhausts me.

I’ve read so many articles in which people describe this kind of exhaustion, but I didn’t realize it how utterly debilitating it is until a few weeks ago.  And it feels like it’s getting worse.  I’ve been awake for less than 4 hours and I feel like I need to go back to bed.  It’s completely frustrating.

I can’t run errands or do chores or do anything fun.  I just hang around for awhile, sometimes getting the dishes done, and then I go back to bed.  I’ll lay on the couch and rest my eyes, feeling a bit refreshed after that.  But it’s still not enough energy to do anything.  I can’t stand making food that takes more than a couple of minutes.  Well, for myself anyway.  I can usually still dredge up enough energy to make dinner for my husband and me.  That feels good, worthwhile.  It makes me feel useful.

It’s raining today, which is perfect for my mood.  Sullen and grumpy and sick.  I hate being sick, but I guess everyone does.  On top of a fibro flare it is super sucky.  I was finally able to get a call through and leave a message for the doctor.  Hopefully I’ll get a call back soon and get some meds going.  And then, God willing, I’ll have enough energy to make it to the pharmacy- and home again.

Reduction

For the past couple of days I’ve been thinking about this word- reduction.  It’s a process that is happening in my life at an alarming rate lately, and it’s got me in a tailspin.  Or a funk.  Or both.

Most days I do okay, mood wise, and I go to therapy every week.  I have rapid cycling bipolar disorder, depression prominently, so that’s why I started going.  A couple of years ago my therapist was going on maternity leave, and in her absence I saw someone new.  Well, hey, hey, this lady turned out to be a health psychologist!  So even when my regular therapist came back from leave, I stuck with the new lady.  And she was just better at her job as a whole, anyway.  I really felt therapized after seeing her, in a good way.

Yesterday I was not in a lot of pain physically, but my emotional state was quite fragile.  Some time in the early afternoon I began feeling very sad, then deeply anguished.  I think one of the triggers was my mom.  She wants me to help her out with a yard sale on Saturday, and I said okay but I’d probably have to take a nap at some point.  She laughed.  I know she didn’t intend to be mean, but that’s exactly what that was.  Now, she does not know a lot about fibromyalgia, so I have to cut her a little slack.  Although really, if my child had some horrible chronic condition, I’d at least read up on it a little bit.  But whatever.  I didn’t defend myself; I found I just didn’t have the energy to explain to her her ignorance (in a nice way, of course).

It wasn’t until later when I was baking some bread that I really broke down.  I started crying heart-wrenching sobs, the kind that make you feel you might not come back up for air.  I couldn’t stop.  I texted my husband and asked if he could come home.  He said he was super swamped but would come if I really needed him.  Um, duh, why was I texting him?  So I just said not to worry about it, I’d be fine.  He sent me a funny text back which made me laugh (he can almost always make me laugh), and then texted some suggestions on ways to feel better, some distractions.  Yes, I know these things, but it’s easy to forget in the moment.  So he didn’t come home, but at least he was helpful.

After a little while I calmed down but stayed depressed.  A channel we get was showing movies for Christmas in July, so I turned one of those on.  I anxiously awaited for the dryer buzzer to go off so I could put my new nightgown on.  It says, “Everything is better in my pajamas.”  Darn tootin’!  I had that on by about 5pm.  And I must say, it did make me feel better.

So, a Tuesday afternoon that I’ve spent crying and baking bread and wearing pajamas felt like…. well, horrible.  Had it not been for the crying, I think it would have been great.  When nothing lies ahead for which you need to be dressed, why not put on pajamas?  I didn’t spend all day in them (though in the winter I often do!) and managed to get a few things done around the house.  My bread turned out a bit lopsided, but I’m sure it will be edible.  My stomach likely won’t care about the shape of the bread.

Finally 6:30 rolled around, and I was completely exhausted, mentally, emotionally, and physically.  I decided there really was no point in staying up and torturing myself.  So this is what my life has been reduced to right now.  I have hope that it will get better, but most things I read say it won’t improve much.  There will be good days and bad days, and I’ll have to take them as them come.  So I got into bed, read for about a half hour, and then lights out.  Snuggling up under the covers was the best feeling I’d had all day.

So What’s On Next?

Television has become my life.  And reading, but mostly television.  Over the past couple of months, I have watched almost every episode of Supernatural.  The show has 12 seasons (I know, right?!), and I’m a few episodes into season 11.  That means that, so far, I’ve watched about 225 episodes.  Wow, I can’t even believe how ridiculous that is, and how grateful I am that they’ve made 12 seasons!  It’s entertaining, and I need that right now.  But what’s on next?  I only have just under two seasons to go, and then I’ll have to find something else to watch.  Maybe I could re-watch this past season of Jane the Virgin.

Earlier this morning I tried reading for a bit, but it hurt my arms to hold the book up.  And the hilarity of it all is that the book is on fibromyalgia.  Why did they make it so stinking heavy?  I’m thinking a better format could have been conceived, especially considering the audience.  Oh, well, maybe later.

Since I woke up around 2:30am, the entire right side of my body has been hurting, from my neck to my foot.  My left hip and shoulder have joined the party.  My sweet little Sophie cat was snuggling with me, but she gave up when I had to adjust the heating pad one too many times.  Then she saw a moth flying around the light, and there was just no getting her back.  Of course now she is eyeing up the computer on my lap, likely wondering why her spot’s been taken.  I know, Sophers, life just isn’t fair.

Yesterday my husband had cabin fever.  I’m not sure why since he’d just gone on a run for over an hour and was then just hanging out on the back porch.  Suddenly he desperately wanted to do something, and I had to keep shooting down his ideas.  I felt horrible for doing that, but my body was just not cooperating.  A trip to Walmart for dishwasher detergent was just not going to happen.  Sure, it would have been a quick trip, but all that walking… all those people…. it was freaking me out just to think about it.  What if my body couldn’t handle it?  I was not in the mood to be utterly exhausted and not be able to do anything about it.

I finally agreed on a quick trip to a fun local convenience store to get some tasty drinks.  That was just all I had in me.  And then I played Scrabble with him, because he loves Scrabble.  I would love it more if I won more often.  Yes, that is poor sportsmanship, but seriously, I think I’ve won three times in 11 years. Yesterday I only lost by 10 points.  Frustrating!  But honestly, I was just glad when the game was over as it was so hot in our kitchen.  I wanted to get back into the living room where the air conditioning was getting blown around by fans- a wonderful feeling.

Right now it’s not too bad in here with the front door open (yes, the screen door is locked, because that’s such an intruder deterrent) and the fan on.  I would still prefer air conditioning, but we’ve got to save electricity, right?  And besides, it’s only 78 degrees outside.  Maybe I’ll try reading again.  After all, I should use this painsomnia to get something productive done, right?  Or maybe I should just lie here in pain.  Yeah, I think the latter is going to win.  But I really feel like baking cookies.  Ha!  Who’s got the energy for that?!

 

Doing Too Much

I woke up about two hours ago (it’s currently 5:40am).  I just got up to go to the bathroom, and by the time I made it back to bed, my right arm was killing me.  I tried lying in bed with the heating pad on it, but it was kind of difficult to get positioned without disturbing my husband.  After 20 minutes I gave up and went out to the couch.  I got a snack (some delicious refreshing watermelon) and sat down to watch some TV.  I put the heating pad on my arm again, this time able to get it wrapped around my whole arm pretty well.  After about a half hour, it was feeling better, so I moved the heating pad to my lower back.  My arm is feeing a little bit better, and now the heating pad is giving me a heat stroke.  Super.

I just can’t get back to sleep.  Painsomnia strikes again.  Last week I dealt with it three nights in a row, and it was exhausting.  Even naps in the afternoon were an impossibility.  This morning I took some tramadol, ibuprofen, half a muscle relaxer, and a clonazepam and still couldn’t sleep.  I don’t normally take all of those things at one time, but I was feeling desperate.  Now I feel resigned.  I’m not getting back to sleep.  Perhaps I’ll be lucky enough to be able to sleep for a bit this afternoon, but who really knows?  I’m not banking on it, but I am planning on relaxing on the couch most of the day, in between the occasional stroll aimed at not letting my body get too stiff.

I used to think it was arthritis causing my feet to hurt so badly after a bit of disuse, and perhaps at times that was the culprit.  Now, looking back, I can see that it was obviously the fibromyalgia causing the problems.  My rheumatologist at the time, when she finally diagnosed me, said she hadn’t wanted to put that label on me, but she couldn’t avoid it any longer.  What?!  I understand not wanting to label people, but I could have been focusing treatment on fibro instead of just arthritis!  How long had she been thinking this?!  I know I’d had symptoms for at least a couple of years, and to finally hear a diagnosis was vindicating.  Things made sense.  Why did she wait so long to acknowledge that these symptoms weren’t just in my head?

At any rate, the new rheumatologist I’m seeing acknowledged my laundry list of problems right away and confirmed my diagnosis of fibromyalgia.  I started taking Lyrica last night at bedtime, and the only side effect I noticed was getting sleepy.  Hmm… sleepy at bedtime, no kidding.  We’ll see how it effects me in two weeks when I start taking it in the morning as well.  I’m not afraid of a little fatigue, but the dizziness could be a problem.

In 3 weeks we are going on a short trip to Virginia to see family.  I’ve started taking 4 pillows with me, because we sleep on a pull-out couch that is so uncomfortable.  There is a bar across it that hits me right in my lower back.  Awesome.  So I drag along my pillows and my husband just shakes his head.  Whatever, it’s not his back.  And now with the fibro flaring so badly lately, I’m worried I won’t be able to keep up with what the family is doing.  Maybe I should drop my sister-in-law a quick note letting her know what’s going on.  My husband, brother-in-law, and nephew will be doing a 10K while we’re there.  I think if I’m awake I’ll just have to go and spectate!  And with the way things are going, I’ll be awake.