Breaking routines and pushing boundries

April 16, 2012

After many months at home, I finally got out of town this weekend.  Aside from being too short (as always) the trip couldn’t have been better.  The weather was fantastic, better than anything I’ve seen this time of year.  I had good company and a great atmosphere.  We ate healthy food and took many walks.  That last part was the most amazing part.

For many months I’ve been fighting fatigue.  I’d love to say that the fresh ocean air was enough to fix everything, but of course it wasn’t.  Still, it helped a lot.  Getting away helped.  Getting out of the city helped.  Being pushed to do more by someone else helped.  And somehow, yesterday, I actually walked 3 miles!  Now, I won’t pretend that I could do that every day.  And afterwards I was so exhausted that I took a nap (with the dog, who was even more worn out), something I haven’t been doing as much anymore.  Still, I walked 3 miles!

We stopped to rest a lot, and we didn’t walk very fast, but we made it.  One great part was the exercise.  Another great part was the fresh air and beautiful views.  But there was something even better: knowing that I was able to accomplish this.  The last 6 months have been so demoralizing that this long walk, even if it was just a one-time thing, was a reminder that in some way, at some time, I am still capable of it.

I don’t know when or if I’ll be able to do that again, but for now I know that this weekend, I was able to walk 3 miles.  This weekend I felt good.  No, it wasn’t perfect.  I had nausea and back pain and whatnot, but I walked 3 miles.  Whatever happens next won’t change that.

Leave a Comment » | Expectations, Limitations, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Physical therapy: 8 out of 9!

April 1, 2012

There’s really nothing wrong with my physical therapy exercises.  They’re a bit inconvenient.  None are painful.  Some are boring.  Most involve effort I just don’t want to expend.  Still, even when I have nothing else pressing to do, for some reason I try to avoid PT.  I’m sure there’s some great psychological reason for this, but I’ll ignore it for now.  The point is, I suck at doing my exercises.

I stopped doing my exercises a few months ago when I was feeling especially fatigued.  I know this was legitimate, but it still meant that I suffered a backslide and I now have to make up for it.  I am attending PT again, and am supposed to do my exercises at home.  I decided that for me, the best motivation was to track it.  I might feel a little bad if I thought I’d missed a day or two recently, but I’d feel really guilty if I knew I’d missed 2 days out of the last 4.  So I went online and printed out a little calendar.  I bought some start stickers and I give myself a star every day that I do my exercises.  This is working great!  I felt much more guilt today than I normally would, since I knew I’d missed Friday, so I did the exercises at 9pm.  Normally I’d have decided it was too late to bother by that point, but I did them!

I should have started tracking a few weeks ago, but better late than never, right?  So in the last 9 days of tracking, I’ve done my exercises 8 times!  2 of those times were at the physical therapist’s office with her, but still, I did the exercises 8 out of 9 days!!

This may not seem huge to some people, but I’m guessing many others understand.  I’m going to do my best to keep it up, because I know these exercises really will help.  It’s time to aim for the stars!

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

2 Comments | Expectations, Limitations, Milestones, Raves, Symptoms | Permalink
Posted by chronicrants

Baby steps: learning to stand, walk, and sit at age 32

March 26, 2012

It’s a natural progression: babies learn to roll over, then to crawl, then to stand, then to walk.  Easy, right?  Apparently not.

A couple years ago I was in physical therapy, having knotted muscles worked on, when my physical therapist decided I was ready for the next step: learning to stand.  Now, I’d been standing for years.  Sure, I never crawled, but I did go through all of those other stages, and I knew how to stand.  Yeah, it was painful to stand for more than a minute or so, but it’s not like I didn’t know how to do it.  Well, apparently I didn’t.

It turns out I’d been standing wrong my entire life!  I was putting my weight on the wrong part of my feet and that was throwing everything off!  This was quite a shock.  So I started working on how to stand and walk.  And it turns out I needed to work on sitting too – I was sitting on the wrong part of my ass.  This sounds like a joke to some people, but I swear it’s the truth.  Some of you may even be dealing with the same problem.

Eventually I “graduated” enough that I could work on the exercises at home.  I made some progress, but then the fatigue hit me last year and I stopped doing my exercises altogether.  So now I’m back in PT, trying to regain what I’ve lost.  And today, we worked once again on how to stand properly.  It’s infuriating to have to think about how I’m standing!  Then she had me walk around the room, and I had to think about how to do that too!

I’m perfectly happy to do this, of course, if it works.  I just really hope it works!  And in the meantime, I feel like a one-year-old all over again.

Head up, chin down, belly in, hips even, weight on heel, and…. go!

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

2 Comments | Educating, Expectations, Frustration, Limitations, Medication, Milestones, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Fearing disbelief

March 5, 2012

When I was in 7th grade, one day I suddenly had a lot of pain in my wrist.  My parents brought me to a doctor, who told me to wear a splint for 6 weeks and it would be all better.  Boy was he wrong!  This was to be the first of many symptoms.

Fast-forward to the tender age of 17.  I had seen many doctors – internists, orthopedists, surgeons (yet for some reason, no one suggested neurologists or rheumatologists) – and they didn’t know how to treat me.  They suggested I see a different kind of doctor: a psychologist.

I have nothing against psychologists.  In fact, I have a big problem with the social stigma surrounding mental health in the United States.  But in this case, it was upsetting that the doctors all thought this was in my head.  Then some family and friends started to think so too, and that was even worse!  Some thought that I was making up the pain in order to get attention.  Others thought that my subconscious was making up the pain.  It got to the point that even I started to wonder!  My mother was the one person who never believed their hype – she always knew that the pain was real.  I am so thankful for her.  I can’t imagine what would have happened to me if she hadn’t been in my corner.

My disability benefits were due to run out last week, and try as I might, I can’t get the overworked case manager to call me and tell me if I’m approved for a few more weeks.  I was worrying about this today when I suddenly realized why I’m so nervous: I’ve had years of people not believing me, and what if the insurance company stops believing too?  Those doubters when I was 17 were only some of the doubters I’ve faced.  There have been so many.  I still face the problem now, but I have a better handle on dealing with it.  With an insurance company, though, it can be very hard to argue. There’s no real person to convince, just an entity.

Now that I’ve recognized the fear I feel, the lasting affect of those years of being doubted, I hope that I can overcome it.  I hope that I can feel confident that people will believe me (or at least that I’ll convince them easily enough.)  It will take a lot of work; afterall, I’ve been facing the disbelief for many, many years.  Still, now that I recognize it, it’s time to get over it.

I refuse to waste any more energy on worrying about what other people think.

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If you can relate to this, please pass it along!  Thanks!

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Milestones, Pain, Rants, Support, Symptoms | Permalink
Posted by chronicrants

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