Gluten-free day 1: The merry-go-round

February 20, 2012

Drugs, physical therapy, hypnosis, more drugs, diet, tai chi, acupuncture, meditation, psychotherapy, herbal medicine, yet more drugs…. I’ve tried a lot of different “treatments” over the years, and so far some have helped a bit, but none has eliminated any of my symptoms.  At best, a couple have lessened the pain, but that’s about it.

Now I’m looking at what could be the holy grail of treatments: a gluten-free diet.  According to books, web sites, doctors, and the nutritionist I met with last week, this could be the key.  Of course, the logical, weary, tired part of me knows that this could be just one more false lead.  Still, I’d like to hold out a little hope.

If the books and experts and such are right, then gluten can triggers an autoimmune response in the body, and eliminating gluten and relieve that response and therefore the symptoms.  In six months I could have less pain, less fatigue, less nausea…. it’s almost too much to hope for!

I’m realistic.  I don’t expected to be “cured” or anything close to it.  But if I could get a little energy back, that would be the best thing I could imagine right now.  So I figure it’s worth a shot.  Even if this doesn’t work, it probably won’t hurt me.  I just had two days of worse-than-usual nausea from adjusting a medication dose.  Sure, going gluten-free is inconvenient, but if it works, I’ll gladly do it for the rest of my life.

So today was day 1 of being gluten-free.  It was what could literally be the first day of the rest of my new life.  I sure hope it is.

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The best kind of pain

February 7, 2012

***Warning: I get a bit sappy when I talk about my friends’ kids.  But hey, that’s an auntie’s prerogative, right?

When I was a kid, every winter my family would go cross country skiing once or twice.  We built snowmen and went sledding throughout the long New England winter, but because we went skiing so rarely, it was a real treat.

Every trip was different, but they all had the same excitement: the drive out there, getting fitted for skis and poles and boots, relearning everything we’d forgotten since the last time, breaking in the middle for hot chocolate, falling over in the snow.  It was a magical time.

Until the next morning.

Going only once or twice each winter meant that my skiing muscles never got built up.  Every morning after a ski trip, I’d wake up sore as hell, and all day long it would only get worse.  The first time it happened, I thought something was wrong with me.  After that, I knew what it was, but it was still a tough couple of days.

The other day I woke up with that same feeling.  It was glorious.

A close friend had a baby recently and I drove across the state to visit them.  Before this I knew that the Plaquenil I started last summer
was working, but only because I could climb up more stairs before my knees gave out.  This day really proved it.  First, I held the baby.  A lot.  Much longer than I could with her first two kids.  There’s nothing like holding a sleeping newborn; they’re so incredibly peaceful.  My wrists and hands were sore afterwards, but I could tell the pain wouldn’t last long (thankfully I was right about that.)  Then I was playing with the older kids on the floor, and before I knew it, they were both climbing on my back at the same time!  I never thought I’d be able to do something like that!  It was fantastic.  I’ve always enjoyed being fun auntie Rants, but it was in a calmer way – coloring and building blocks and shaping clay and reading.  This was the first time in their lives that we’d been able to roughhouse together.  Did I mention it was fantastic?  Sure, I said no to them when one wanted to sit on my back and have me crawl around; I know my limits.  But having them climb on me while I wiggled around on the floor (on purpose – they loved it) was really…. am I overusing “fantastic” yet?  And what amazed me was that I really didn’t feel any pain.

Until the next morning.

Actually, though, I wasn’t really in pain the next morning, just sore.  Very sore.  Muscles hurt that I didn’t know I had.  After all, I had barely used them in many years, so I really couldn’t blame them for acting out at me.  It was a rough day, and the next day was even worse.  And I loved it!  I’d do it again in an instant.  Playing with the kids was a dream come true, but the soreness was good too.  Have you ever gone to the gym, done some great new exercise, then ached the next day?  You know how good it feels to know you’re building up your muscles?  That’s what this was!  Only I never thought I’d ever be able to work these muscles again.  I thought that for the rest of my life, they’d remain barely used.

Ok, this isn’t perfect.  My energy still sucks and I felt exhausted for days after that trip.  But this shows there’s hope.  For more than nine years, I was in pain all the time.  I mean all the time.  24/7.  It got to the point where I couldn’t remember what it felt like to not be in pain.  Now I have pain every day, but only for parts of the day, and to me, that’s magical.  It gives me hope that my energy could rebound too.

And yes, I’m realistic.  One day the pain will get worse in all the places where it’s now a bit better.  That could be in a year, or 10 years, or 50 years (longevity runs in my family, even with the autoimmune crap), but I’m sure it’ll return.  For now, I’m just living it up.  And for me, that means getting on the floor and letting adorable kids climb all over me.  And if I’m sore the next day, remembering their laughter makes it all worth it.  It’s the best pain I’ve ever felt.

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Measuring symptom improvement… by way of a 2 year old

December 29, 2011

I knew the fatigue was getting bad when I’d be tired after 12 hours of sleep, then take a 3 hour nap that next day.  Now matter how you look at it, that’s not good.

Now that I’m feeling a bit better (thank you sleeping pills!) I haven’t been as tired and I haven’t taken any naps, intentional or otherwise.  Progress!  Yay!  Still, I know that I don’t have the energy of a “healthy” person, so maybe some of the progress is in my head?

Two weeks ago a friend had a timing conflict and needed someone to watch her kid.  I was so tired every day, but she was in a jamb, and she’s a good friend, plus I wanted to try and push myself a bit, I rested all day, then went over in the evening.  After a bit over an hour, I’d had it.  We’d been sitting most of the time, but I needed to be alert and engaging.  It was exhausting.  Thankfully, my friend’s husband came home a bit after that, and while I still played a bit with the kid, I could let my guard down and relax.  Still, by the time I went home I was beat.

Today I went over to take care of the same kid.  I went in the morning.  I got up with my alarm, and felt a bit tired at the time, but then felt much better as I got ready to start the day.  I had a ton of fun with the kid and wasn’t tired, even after more than two hours together.  I hung out for a while with my friend, then came home and listened to an audio book for a while (loving those audio books!) before I took a 35 minute (yay!) walk, stopping at the library on the way (I’m visiting the library a lot these days.)  I felt great after all of that!

So two weeks ago, an hour with a two year old wore me out completely.  Today, two hours with a two year old left me feeling as good as when I started.  The lesson?  The doctors shouldn’t measure our progress on those annoying 1-10 scales.  They should just put us in a room with a two year old and see how long we last.  After all, anyone who can keep up with a toddler must have at least something going right!

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The 1/2 mile decline: reaccepting old limitations

November 30, 2011

When I moved into my apartment, I didn’t even consider walking to the grocery store.  Even if I could have walked the 1/2 mile there, I knew I couldn’t carry groceries home.  So I drove to the store.

Over the years, I increased my walking.  I finally got to where I could walk that distance.  Then I worked on carrying.  The day I carried a quart of milk home I was ecstatic.  When I carried home 1/2 gallon of milk, I could hardly believed it.  I still drove to the store when I had to get a lot of heavy things, but when I just needed a few items, I could walk!  It even got the point where I didn’t think too much of the walk.  It was an effort, of course, but it was very doable.  As long as I was having a good day, I knew I could do it.

My recent decline has been tough.  I’m trying to continue to get at least some exercise, like short walks and running errands.  Today was 60 degrees and sunny with a slight breeze.  Perfect.  I needed just a few things at the store, so I headed that way.  Halfway there, I was exhausted.  I wanted to come home and get the car.  No, forget that.  I wanted to come home and sit on the couch!  I pushed myself, though, and made it to the store, stopping just before I got there to sit on a bench for a few minutes.  Walking through the store took much more effort than I’m used to.  By the time I paid for my groceries, they felt surprisingly heavy.  I sat on a bench again for a few minutes before I left the store.  Then it was time to trek home.

The walk home felt longer than I remembered it being.  Did the street stretch out?  I just kept putting one foot carefully in front of the other.  I stepped over the tree roots pushing up the sidewalk, felt bad for the 3-legged cat that was meowing piteously, thought about how much I wanted to sit down.  When I got home, refrigerated stuff when in the fridge, the rest was left on the counter, and my butt went to the couch.  I had to rest for a long time to get over that.

I’m glad I pushed myself (well, I say that today; I’ll have to see how I feel tomorrow.)  It felt good to get some fresh air.  My knees hurt less after I’d walked for a while.  I know it was good for me.  But emotionally, it was tough to realize just how much I’ve declined.  It took so long to build up to that simple walk, and now it’s been snatched away from me so damn quickly.  I’m not ready for that.  I could accept that I wouldn’t improve more.  I was ok with that, actually.  No, really, I accepted that years ago.  But I could not,  I can not, accept getting worse, especially not so soon.  I always knew it would happen “someday,” that mythological day in the distant future.  I’m not ready for it now.  Not yet.  So I’ll do the only thing I know how to do: I’ll accept it so that I can fight it.  I may fail, but at least I’ll try.

If any of this sounds familiar, if you can relate, please share it on Facebook, Twitter, etc.  This blog is new, and it would be great to share it.  

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