Saturday, December 21, 2013

"This is your new life now"

(Even Firefly can get all four feet off the ground at once, if motivated)
When I started this blog a little over a year ago, the intent was for it to chronicle my growth with my new equine partner.  Because of various Things life has thrown at me, I am, well, a perpetual newbie (or at least feel like one) as most of the time I'm thinking and feeling variations of "What the heck is that?  What the heck am I supposed to do?"

Well.  That's fitting, I suppose.  But it was a lot more entertaining when it was about random inexplicable swellings and vexing riding technique.

My life, lived always at 90mph, hit a brick wall in October.  As I previously posted, I was diagnosed with an autoimmune thyroid disease back in August.  I figured start treating that, life will be better than before.  Sadly, no.

Autoimmune diseases are like potato chips--you usually don't have just one.  Now, my second diagnosis is not considered autoimmune--at least not yet (there is some research suggesting it might be)--but it is often seen partying with my first.  This condition is, to quote my rheumatologist, "a bitch."  It's fibromyalgia.

Now, I hated hearing those words come through my rheumatologist's lips when she suggested that was my diagnosis.  Oh, hell no.  Fibro is seen by some as "not a real disease" and means just that "the docs haven't figured out what's really wrong."   However, that's been long since discounted in the medical field--it is a real condition, a real bitch of a condition, that as best can thus be confirmed is described as a neurological disorder relating specifically to the central nervous system.

I have already heard a certain amount of, "Oh, my blankity-blank has that, went gluten-free/dairy free/sugar free, and was cured! You should try it!" (I've kept a symptom and food diary--there is no correlation. Actually, my symptom diary doesn't seem to have ANY correlations to ANY thing, except stress/activity level.) Or, "Have you tried this?" Or, "Have they checked for that?" Or, again, "That just means they haven't found out what's really wrong with you. You should see/try/look into x-y-z." I hate that it's fibromyalgia, because as soon as I say that word, that's what people start saying in all their good intentions. I avoid the word except around those I trust won't be warmly offensive.

Like many neurological conditions, it's a beast to treat.  (Or, perhaps again, a bitch.)  I have the three hallmark symptoms: whole body aches, severe fatigue, and sleep disorder.  The body aches are always present and in varying degrees of severity; when they're bad, they wake me up at night and keep me from moving because it sucks.  The fatigue can be even more disabling, because, no matter what I want to do, my body is positively screaming at me to lie down, NOW.   It's not "I was up late last night" tired, or "I sure had a busy day" tired.  It's a bizarre, drugged feeling, akin to when jussssst waking up from general anesthesia.  When it hits, I must lie down, and I must sleep.  NOW. When I wake up, it may be 20 minutes later, or it may be 3 hours later--the bizarre thing is it feels the same no matter how long I sleep.  I've been shocked the times it was 2-3 hours, because it felt like maybe an hour, tops.  It's like a time warp.  I'm vaguely aware of what's going on at points during that drunken nap, but I can't rouse, and can't be roused.  More peculiarly, I'm often not able to wake completely up after such a nap.  I'm able to get things done--feed horses, make dinner, read to the boys at bedtime--but eventually, my body succumbs once again and I pass out for the night around 8pm.  Many, many nights hubby and I go to watch TV after putting the boys to bed, and I wind up sound asleep soon after.

But while these are the hallmarks of the condition, it comes with oh so many other symptoms.  I've repeatedly told people it's like my body has a grab bag of 20-30 different symptoms, seemingly unrelated, and every morning my body reaches in and grabs a handful or two.  They come in many flavors.  Cardiovascular palpitations and chest pain; digestive nausea, inappetance, and elimination issues; emotional mood affectations ranging from depression to anxiety to irritability.  The bulk of my symptoms, however, appear to be neurological, which is why I'm seeing a neurologist next: tremors (particularly hands--drives me NUTS), numbness and tingling of the mouth, feeling of a thousand ants crawling up the side of my head (sometimes left, sometimes right, but never both sides at once), skull-piercing headaches, intolerance of noise (it's like scores of nails on dozens of chalkboards), foggy vision, inability to concentrate (my eyes start to blur and zone out when trying to read, for example), slurred speech, mixing up words (which has made writing difficult--even in this post, I'm mistyped using similar sounding words, and even a few phrases that just mixed up the order of the words I'm intending to use), faulty goes on.

Despite my initial revulsion at the diagnosis, four of my doctors--my general practitioner, rheumatologist, endocrinologist, and OB/GYN--all suspected this blasted fibromyalgia diagnosis.  Unfortunately, as I have learned about and lived with this condition, I've slowly come to agree and accept.  There may be some other diagnoses awaiting me--there are a few more minor ones suspected--but for now, the energy is going into controlling this unruly bitch.

Because of this medical mayhem, I have been off work since October 7.  This has been exceedingly difficult for this driven, independent, multi-tasking woman.  My body does not work the way it used to, and that is extremely difficult to adjust to.  Every morning, I must listen to what my body is saying and submit to it.  I cannot change or force myself through it--that guarantees I will be paying for my obstinance for days in the form of the volume of many symptoms being turned up excruciatingly high.  Every day, I must rest after a few hours of activity, or I will pay for it dearly later when my body slams on the emergency brakes.

I have just started physical therapy.  I had a most elucidating, and in a way frightening, appointment this past Thursday.  After my initial assessment (during which the head therapist said I was "very typical fibro"), I was assigned to my specific therapist, and met with her this second visit.  We spent a lot of time talking first, and it was difficult to hear some of the things she said.  Again, I was very typical fibro.  Again, I must be sure to listen very, very carefully to my body.

I told her the madness of trying to get into an exercise program with my horse.  Since being diagnosed, I have done very carefully timed mostly-walking rides on Tril, with some itty bitty bits of trotting and occasional two pointing squeezed in.  I set my phone's timer for 22 minutes and dismount within three minutes of it going off.  The insanity is, on Friday, I may have a great ride on him.  I may two point two full laps around the big ring; I may be able to ride a nice framed-up trot for 3-5 minutes and repeat it after a break, I may be able to bend, pivot, and do lateral work at the walk for a solid 30 minute ride.  But on Monday, after a restful weekend, I may feel heavy and drag, and struggle with simply tightening the girth.  It's beyond frustrating.  But--another component of fibromyalgia is exercise intolerance.  You simply cannot base what you do tomorrow with what you were able to do today.

"This is your new life now," she told me.  I fought back tears as I nodded in agreement.

Because that particular day I was feeling tired and my body heavy, she was gentle in the exercises she chose for me.  She had me first come to a mirrored wall and practice stepping sideways.  That's it--stepping sideways.  I was to focus on keeping my legs straight and move from the hip and move five steps right, then five steps left.  I was stunned, exasperated, and just plain pissed with my body when three steps into it, my lower legs began to tire.  They felt hard and heavy and labored.  THREE sideways steps, and that's what happened.  I was able to finish the task and do two reps with those heavy, tired calves, but that's just ridiculous.  What the fuck, body?

Another exercise that had me both fascinated and internally infuriated involved me sitting in a chair and holding a ball in both outstretched hands.  I was to lift the ball up to the point of tolerance, and then bring it back down.  I was shocked when I was unable to left it past shoulder level without sharp pain in both shoulder joints.  WHAT the...???  The therapist said, "Ah, we're getting into range of motion now."  Again--I was angry that my body would find such a basic task not only laborious, but painful.  It was fascinating...and heart breaking.  I don't understand.

A few days later, doing my exercises at home, I was able to do many more sideways reps, and lift the ball quite a bit higher.  The next day, not as much.  Today, we'll see.  Tomorrow, who knows.

It's so difficult because what I want to do remains the long list of tasks I've enjoyed my whole life through, but each day, my body gives me only so many energy tokens.  Some days it may be 30, some days it may be 10.  Showering is always at least one, so I must choose my tasks carefully.  Today I've baked pumpkin bread, showered, washed my younger son's bed sheets, made lunch, and started another load of laundry.  That's at least five tokens.  I'm not sure how many remain, but I'm saving up for dinner, putting the boys to bed, and taking care of the horses.

That last one remains vital to me.  I must go out and see them, even if I can't ride.  I need their motivation to get up and move, feeding, cleaning, grooming, walking.  On some of my worst days, it is the time at the barn that I feel my best.  Energized, smiling, able to ignore the pain, at least for that short little bit.  Tril and Firefly amuse and recharge me.  Sometimes, I just sit in a patio chair in a corner of Tril's stall after feeding, finding comfort in the soothing sounds of the eating.  Tril will often stop in the middle of his meal to come over to me for some affection.
Such a mush
"Pet meeeeee!"  Mush mush mush
My rheumatologist and physical therapist both encourage me to keep riding as it builds core strength and improves my awareness of my body, but with the caveat that I must be exceedingly attentive to what my body is saying to me that day.  You need this, they told me, but be careful and be wise.  I have been, such that my rheumatologist said she's proud of me.

I wish it were more.  I want it to be more.  I'm early in treatment, so there is great potential for improvement, but as my rheumatologist said, "while the goal is to get you to 100%, the truth is, we may never get you there."

This is my new life now.

I could weep and moan, I could lament and rage, I could fight and lose.  But...why?  Energy comes at a premium these days.  Why waste it to such negativity?  I must accept and adjust.  Not that I do all the time, but, I must.

This is my new life now.  I'd best get busy living it.

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