Catch 527

You know what? Disabilities suck; some more than others, but they all suck in some fashion. I am not here writing this to say ‘mine is worse than yours’ or to compare. In my personal estimation, we are all entitled to our personal pain, whatever it is, and that is something that should never be compared. That’s not the contest. Overcoming it is.

In some ways, my life is much different than 2 years ago, but in other ways, not so different at all. I’ve been sick for all my life to one extent or another (most of my early life it was fairly mild), and have gotten progressively worse over the last 15 years or so…the biggest shocker for me wasn’t as much from the Dysautonomia/POTS as from the leg denervation (permanent nerve damage from a massive herniated disc). I spent a lot of time bedridden, then slowly learning to walk again. That down time, along with the shock to my system of the excruciating pain, the surgery, the recover, the deconditioning…all those things struck me a quadruple whammy in making my Dysautonomia grow incredibly severe. Add in the leg denervation…and, well, things got really ugly.

I lost partial use of my right leg (portions of calf, ankle and foot) and will never, ever, ever be able to do certain things again. Like stand on my toes with my right leg, even. Sounds simple, but can’t even push off to walk normally with that leg. I got pretty depressed about that for a while, thinking about the many things I knew I’d never do again, and the many things I wondered if there was any way I might possibly ever do again. I wondered if I’d be able to walk on the beach…swim in the ocean. I knew I’d never ice skate again, or go horseback riding. I knew I’d never fly again except as an ‘involved passenger’. So many things…could I ever dance again? Do martial arts? I dwelled on these things, and grieved for many of them, like little deaths. Want a little extra icing on the self-pity cake? That leg denervation also meant that my ’2nd heart’ would never work properly, and this, in turn, meant that my Dysautonomia would remain worse than it had been before. And that meant even MORE limitations.

I did the anger thing, the grieving thing, the ‘why me?’ thing, the pitching a fit thing, rinse and repeat. Staring at a ceiling and struggling to get to the lavatory leaves you alone with a lot of thoughts you’d otherwise ignore. As I gradually was able to start making trips up and down the hallway, then up and down the stairs (with a ‘spotter’ in case I lost it), and eventually on to tackling the treck up and down the short driveway, I started to feel more hopeful. Part of it was less cabin fever, and part of it was slowly accomplishing these little things. My husband (then fiance’) walked with me, always ready to grab me if I looked ready to hit the deck, always matching my speed, however slow that was. We worked up to a very slow mile and a half on the paved bike trail. That felt as good as having run a major marathon, silly as it may sound. Then again, standing at the checkout line feels like I am running a marathon (tachycardia).

I started thinking differently. I began to wonder….what if? I began to search for alternate ways of doing things. I got creative, and I started to even enjoy the challenge of *being* creative and resourceful. It became something of a personal competition between me and my disabilities…let’s see if I can outsmart them! I didn’t always succeed, but my win rate steadily improved. And it will get even better. Mark my words.

So I got serious. It was ON.  I took on the challenge of finding ways to really kick its ass. During cool (but not cold) weather, las spring and fall, I was able to hike 4 miles in the mountains…up and down VERY steep hills. Took two canes to do it, but I did it, and at a speed of over 3.5 mph. Not bad for a Dyssy gimp! I also started treading water VERY vigorously and worked my way up to 2-3 hours at a time, swimming up to 5 hours a day. Now, I couldn’t hike and swim in the same day, but that’s ok. The water, by the way, acts like compression stockings for your whole body with hydrostatic pressure in addition to keeping you cooled down, so those things help the POTS quite a bit, and helped me overcome the exercise intolerance. Thats the Catch 527 (there are so many more catches than 22 going on here!) of Dysautonomia…you have severe exercise intolerance and horrible fatigue, but you are supposed to train like an athlete. Huh? Not the easiest thing to do. It requires a lot of trial and error, and you have to find this particular balance. It’s like walking a tightrope with no net. And get this: sometimes the frakking tightrope MOVES on you. Then you have to figure everything out all over again.

I started making it my personal mission to PROVE that no matter how disabled I am, that does NOT mean that I can’t be an athlete, or that I can’t be extremely fit and even buff. None of those things is gonna change the fact that I can’t stand in a checkout line without worrying about passing out cold on the floor. By the way, the WalkStool is great for such moments. If I feel wonky, I pull this lightweight little miracle out and cop a squat. Sweet. Allows me a lot more freedom.  Shae one, Dys ZERO.

The reason I tell you this is that no matter what changes or what you lose, you can fight and you can be resilient and inventive and resourceful. We ‘POTSies (and all sorts of disabilities) are the McGuyverizers of Invisible Illness. We are strong. Some days (weeks even) just suck so badly that it is hard to see that and remember it…but we never give up. Everyone is entitled to setbacks. Perhaps they are even necessary for growth. What’s important isn’t the times I fail, or the times I succumb to that old foul mouthed demon that likes to tell me how gimpy and pitiful I am, but rather the times I pull myself together and smack that demon into next week.

There is nothing wrong with an occasional bit of wallowing, either. I may bitch, whine, wallow, throw a pity party and chuck a spaz (love that saying, Bec H.) until my tissues are too soggy to make confetti. Then I will shake it off. I will go back to kicking Dys in the A$$. I think it is actually a good thing to get a little wallowing out of the system now and then. When you let it out, you let go of it, and then you are free to go back to being the Bad Ass you know you are, ready to Kill Bill.

One thing I need to do is thank my POTsy POSSE. I can’t imagine facing a day without my POTS peeps. The support and understanding in our little group is unparalleled. It’s made my fight that much easier, and given me an outlet to talk about this with folks who also live it, with no fear of being judged. We exchange ideas and coping strategies and all sorts of info, as well…but the biggest thing is having this group of friends who truly have your back, and you theirs, and having that sacred *knowing*. So to all of you, I humbly and inadequately thank you. You all inspire me…and you all ROCK.

I don’t know how much I can improve, or whether the improvements I make will stick around. I suspect it will always be a rollercoaster. Fight my way up a hill…enjoy the view…slide down some (hopefully not too far), and fight up yet another hill. I’ll get tired. Sick and tired of constantly fighting, but I am too stubborn to quick, and no way is Bill (read as:Dysautonomia & fellow disabilitities) kicking MY butt.

And I really do want to prove that point, that you cannot judge a book by its cover. Advocacy and awareness are important to me. I may not look sick. In fact, I may look quite athletic. And under the right set of conditions, I can BE quite athletic. I am physically strong (more in the core and upper body than the legs, but hey…I’m working on it). I have frequent periods of being what people call an ‘invalid’, but by NO MEANS am I ‘in-VALID’.

Definitions of INVALID

1) adj \ (ˌ)in-ˈva-ləd\
: not valid  — SERIOUSLY? Yes, this is listed FIRST!
: being without foundation or force in fact, truth, or law
<an invalid assumption> <declared the will invalid>
: logically inconsequent

2) adj \ˈin-və-ləd\
: suffering from disease or disability : sickly
: of, relating to, or suited to one that is sick <an invalid chair>

3) noun \same as 2\
: one who is sickly or disabled

4) verb \ˈin-və-ləd, -ˌlid
: to remove from active duty by reason of sickness or disability
: to make sickly or disabled

Etymology: Latin invalidus weak, from in- + validus strong — more at valid
First Known Use: 1542

I gotta step up on my soap box for just a minute. Well, maybe I’ll sit on it. Slippery soap box plus syncope equals BAD IDEA. Okay….sitting on soap box, then…I’m just irritated by this ‘invalid’ label. Labels, in general, piss me off to a fare-thee-well. I admit that. I go all rebel on that junk. Here’s the thing, though…NO ONE escapes life without some kind of ‘disability’ or sickness. For some, it does not occur until late in life, but it happens. For others, it may be what people perceive as minor (such as learning disabilities, autism, face blindness/prosopagnosia —all of which I personally also have). Who is to judge what is minor and what isn’t? Until you’ve lived it, you DON’T KNOW. Just as everyone has disappointment, heartbreak, emotional pain in life…those also cannot be compared. Who am I to say mine was worse to experience than yours, whatever yours may be? In our own reality, our worst pain or hardship is very real to us, and should not be devalued. Yeah, technically, some things actually are worse, and we all know that. If you look at those awful, heartbreaking photos of bodies piled like discarded lumber at ‘liberated’ WWII concentration camps, you know in your heart that some things really are worse than others. But within the ‘mainstream’ (whatever that is, however you want to define or label it…that place between the extreme ends) there is, in my view, an equal right to the individual *experience* of pain, whatever it is. And you cannot tell by looking at any person what they have been through, will go through, or what demons they have to slap into next week to keep going. So if you are going to judge or compare, remember that thing about casting stones when you live in a glass house, mmkay? Just sayin’.

I’m still sitting here on this soap box. It’s getting lathered up…I might slide off here in a minute. Or blow bubbles, Lawrence Welk style. Anyway, I also object to the idea that one who is sickly is not strong. Let me point out specific origins:

Etymology: Latin invalidus weak, from in- + validus strong

See what I mean? That translates to WEAK. NOT STRONG. Well, pardon my sailor mouth, but EFF THAT JUNK. First off, there are MANY kinds of strength. Strength of character, of will, of determination…just to name a few. Next, let’s get back to this reality that one can be disabled…an INVALID…and STILL be an athlete; still be fit; still be STRONG. I know that I am. One of my personal agendas in this lifetime is to help change this mistaken perception of what disability means, and to educate others by example as to what the disabled…the INVALID…can accomplish; that we are strong on the inside and can be strong on the outside. And if you can’t see that, then I suggest you exercise your mind a bit so you can overcome YOUR weakness of thought and perception.

Allrighty then. Slippin’ on off this thing. At least I am squeaky clean, right? Rant finis.