I'm Functional!

I saw my doctor today and she was giving me advice that I was obviously dubious of, and she defended it by saying I haven't really improved. A little surprised, I told her I've improved quite a bit! She apologized and asked me to explain... my simple answer was "I'm functional!"

You know science-y types, she wanted more explanation. And you know me, this conversation has bothered me all evening, so I'm putting it on record.

Two years ago about this time, I exercised two, maybe three times a week, and slept the rest of those particular days. My strength training moved slowly and I had to stop any standing exercises due to increasing dizziness. I went grocery shopping on the way home from work early in the week because I still had some energy at that point. I hated Thursdays because I worked a full shift, but my energy tanked by noon. And Fridays simply didn't exist. I had to be careful not to do "too much" over the weekend because I needed most of it to recharge for the coming week; if I didn't recharge enough, I'd end up calling in sick at some point during the week (thankful for the job I had at that point!). I gave up my "extra" sports. I didn't see friends much because I didn't leave the house after 5pm for fear of being too tired drive home. Two years ago, I was simply existing.

Last year about this time, I had been newly diagnosed with POTS and IST, and was trying out my first medication to keep those in check; that medication soon caused or helped along my extra balance issues, which put me on crutches for six months just so I could walk straight... I finally rather stubbornly reclaimed my cane and accepted that I run into walls sometimes. I had slowly worked up to exercising at least 3 days a week and my strength training was moving along, and I even realized rowing was helping! I started reclaiming my weekends and actually living through the end of the week. All of my improvements were in inches rather than leaps, but it gave me hope that I could keep pushing.

Now, I make my own schedule and I'm benefitting greatly from that; I'm also benefitting from my meds and supplements doing their jobs. I'm dreaming of bumping up to exercise at least four times a week.. but my goals involve work outside, so I need to wait out the rain. My strength training has been going better, despite some extra muscle problems lately. I still have to be careful with how I schedule things, especially being active, but I get to play more sports, go out with friends (even at night!), volunteer more again, and not entirely plan my days around taking naps. I can walk a couple steps on my own and walk pretty normal with my cane, still not very far and I still run into walls, but at least I don't have people following behind ready to catch me because I've made them nervous. I also don't get as dizzy when I stand, except when I get cocky and stand too long. While still pushing in many ways, I feel like I'm finally living again.

Let's just be clear..

I've been fielding comments and congratulations on my improvements from physical therapy and how great it is that I'm getting better.... and, while I appreciate it, I just want to clear something up.

And I mean this in the most positive way possible. Improvements are fluid in my little chronic illness/pain/whatever world and I am not. getting. better.

Physical therapy has simply given me more options. That's not to say I have all the options every day, I just have a bigger general list. So if you see me standing one day, it just means I can stand that day or maybe even that moment. If you see me walking, it just means I can walk that day or I'm stubbornly forcing my leg to walk for my chosen reason that day.. and I'm going to pay for it for a couple days after. And when you see me in my wheelchair, it does not mean I'm getting worse, it just means I've crossed off the other options or simply just didn't want to walk. Walking is freakin exhausting; I have to think hard to make my leg work right, it's not used to much walking anymore, and I have to reassure myself that I can do it the whole time. So some days it could also be my brain that needs the break. Especially when I don't have someone walking next to me telling me how awesome I am and how strong my leg is.. feel free to be that person if you see me walking!

And I am not getting better in that I have not been fully diagnosed yet; even when I do, I have already been diagnosed with chronic conditions. Those don't go away. I can get stronger, I can get faster, I even have a goal of possibly getting through a 5K again, but I can still get slapped down with a bad flare (increased symptoms for an indefinite amount of time). A flare can knock me back for a day or for months... I even had to start completely over a few years ago.

Luckily, getting back up and pushing through is where I shine. Keep cheering me on through that.. don't look for the usual milestones or improvements, they don't have much meaning for me (except standing... I will always love how surprised you all look when I stand! And realize how tall I am!). Watch for when I've been quiet for a few days, then show up again like nothing happened, and give me an extra smile (I might need it!). Don't be sad when I say I haven't been feeling well, be happy that I got through it. When I say I have extra pain or I'm sick, ask if there's anything you can do... there probably isn't, but it's nice to know someone cares enough to try to make me feel better.

Not In My Head

My last post inspired some really good conversations... mostly friends noticing my improvements in walking and standing, or more importantly, my confidence in walking and standing. Also, most importantly, cheering me on in this fight.

It also inspired some less than helpful conversations; along the lines of "I told you it was in your head" and "you should be walking more!" The second one being without any regard for how much it hurts me... physically, both are pretty damn hurtful emotionally.

Before the less than helpful conversations continue, let me address them.

It is not all in my head. Never has been and never will be. The pain is very real and so is the lack of function. Basically, my body has overreacted to injuries and/or defects over the years and sent panic signals to my brain, which then turned that into pain and doctors turned to modifications in the hopes of healing that never came. Over time that led to weakness and less function in my leg, some rewiring in my brain, and eventually a disconnect to my leg. Essentially, my brain was trying to protect me from all the alarms and eventually all the rewiring went haywire. A few years ago, my stint in acupuncture helped quite a bit in doing a hard reset and recalibration of some of my rewiring, but that was more therapeutic than a solution.

So it's not all in my head, but my head is part of the solution. The cognitive behavioral therapy is more rewiring.. except consciously and in an effort to make everything work correctly again. It's a lot of positive reenforcement and reminding myself that my leg works and it will hold me up. It's using my stubbornness to correct something that was supposed to be helpful, but has gone horribly wrong. It's taking my desire to simply walk out of the house without all the extra stuff every now and then, and making it a reality. It's giving a big middle finger to all the doctors that told me nothing was wrong. It's getting to the point of being able to figure what the damage has actually been so I can move forward in getting help medically (I may be heading towards pain blockers), in disability services (mostly in getting a job I can sustain.. or finally determining that I am, in fact, disabled), and in getting classified for sports.



And to anyone that bluntly tells me I should be walking more, thinking it's just that simple. that big middle finger is for you too. Chronic pain is invisible to you, but it paints my every step and every movement, sometimes every breath.

To anyone that can count themselves in that very first paragraph, you're awesome! You make this fight just a little bit easier.

I'm Back!

I haven't written in a long time... but since I started this blog as a kind of therapy, it's only fitting that I start up again as I'm in another kind of therapy.

But first, a quick update: I am currently diagnosed with POTS, IST, and mild hyper mobility; treatment for the POTS and IST has made me functional again! Mostly.
Current theories: Sjogrens (waiting on test approval), MCAS (trying to convince my doctor to send me for tests), and CRPS (currently in physical therapy as a test before pain blockers).


CRPS is why I'm back... along with physical therapy, I'm working on cognitive behavioral therapy. Essentially, the physical therapy is trying to get me walking again by convincing my leg that it works. The method for this is to make it angry. And ohhhhhhh it's definitely angry. My leg has fallen back into its old ways of pretty much lighting itself on fire in the hopes that I will just stop using it. Unfortunately for my leg, that's exactly what the cognitive therapy is making me fight against... it's like trying to convince a kid well-versed in getting their way with tantrums that the tantrum won't work anymore.

Physical Therapy is all about pushing me into walking, making me put weight on my leg.. both for longer and farther than the week before. Thankfully, my competitive streak is stronger than the pain and makes me want to keep going. I do still have to bow to the dizziness the POTS causes when I stand too long, though.

Strength Training has moved focus to my glutes and core, which my trainer is happy to torture; this gives my therapist more time to work on the walking and makes my therapy more effective.

Cognitive Behavioral Therapy is changing my mindset little by little. Instead of thinking my leg can't do something, I'm essentially reminding myself that it can. So far, the therapy has pointed out how all-encompassing my mistrust of my leg has been; I have no faith that my leg will hold me up step after step simply because it has betrayed me over and over for the last 25 years. Every time I had surgery or went to physical therapy, I got better and was given hope that I would be okay, only for it to break down again and be worse than before. Trust issues are hard for me, no matter what the issues are with, so I've started small.. I walk across my room without my cane at least a few times a day. It's only two or three steps, but it's more than I've been able to do on my own in a long time!
 
The other problem is the pain. Pushing through it, walking through it, telling myself it's a reaction rather than a sign that something is wrong. When my leg started breaking down and led to the wheelchair, I followed doctor's orders to modify and that led to my initial strength loss.. eventually leading to loss of control and inability to bear weight. I did not follow this path when my arm started showing the same symptoms; I kept using the arm, I pushed it through strength training, and only modified as my arm demanded (my grip is horrible, so some sports require a grip glove). I'm trying to move this same mindset to my leg. And some days I just can't do it.

Recently, all the activity has been causing spasms in my leg, which are progressively getting worse. And that's making the pain in my leg worse because muscles that don't necessarily work are trying to compensate for the spasming muscles to try to prevent the spasm. That pain is more than a reaction, but it's hard to make that call when I'm trying to convince myself I need to push through. I'm grateful to work with a coach and trainer that understand (or want to understand) the battle and ultimately let me make the call.. while still making sure I know they're there to help.

Today is one of those days that I just can't do it. My leg spasmed and wouldn't stop during rowing on Wednesday, so the plan for Friday was to pull me before the spasms started. We didn't make it quite that far because my hip hurt too much. Luckily, my body seems to be getting out of its protective mode and I got the best adjustment at the chiropractor later that day. Yesterday was obviously a healing/rest day.... and today, I just can't put up the fight. Just sitting here typing hurts and I want to go back to bed. So welcome to my therapy for the day.. thank you for reading this far, but really, this just needed to be out of my head in one big piece ;)