Levine's POTS Exercise Program: Weeks 2, 3, & 4ish

So, I wrote about Week 1 a bit ago here and have one more day left in Week 4. I'm at 37 minutes of continuous exercise (with intervals) on the recumbent bike and am still managing OK as far as I can tell. Again, like I mentioned in the first week, I'm still tired the day after, but nothing nearly as much as I expected.

In fact, the biggest thing I've noticed is that I'm doing a little bit more here and there around the house. Whether it's because of the exercise is, of course, hard to determine. But there have been a couple of days where I have been able to do two or three more chores than I normally would be able to. Which, if you have a chronic illness, you know is like... HUGE. Like, I put the dishes away the SAME DAY I made dinner?! WTF is this alternate universe?!

So, I am tentatively hopeful. I am not expecting a cure-all, like I have mentioned before. And I am still fatigued, as well as other POTS symptoms. But I guess I have reason to hope. Or, at least, an avenue to hope—so I reckon I'll take that when I can, yeah? 

Couple things before I forget: they are having me practice static standing in order to see if the exercise is helping. So seeing how long I can stand (next to a bed, of course) before symptoms occur and without shifting my weight/feet. (I'm not suggesting you start doing this!!! It was/is just an interesting thing to me.) POTS man. I had someone else try static standing and I said, "How long do you think you can stand like this?!" and they were like, "Um... a while."

A normal response to standing is such a foreign concept to me sometimes. The fact that they just STOOD there for a while was, like, frigging witchcraft to me.

The second thing, that I think is super exciting! I have learned that the soleus muscle in the leg helps with blood flow!  So, on the days I do weights, they are having me do soleus strengthening exercises which—guess WHAT!?—can be done sitting!

Picture of what I'm doing to strengthen my soleus that I borrowed from Runner's World.

Picture of what I'm doing to strengthen my soleus that I borrowed from Runner's World.

As it is with the cardio side, they are keeping my core/leg weight training reps on the low end to make sure I don't overdo it. (Please check with your doctor before you do anything you read here, or anywhere else. POTS is so different for every person and what can be helpful for one can be detrimental for another).

Anyway, I'm tired, so hopefully all of that is, at the very least, somewhat coherent. As I explained in my initial post, I can't give away specific details of the program, but I will try to share information as best I can. I truly hope these are helpful.

In the meantime, take care and heads-up when you can. I was bed-bound for two years, sleeping 20 hours a day, and I never thought I would ever get this far. <3

 

Levine's POTS Exercise Program: Week 1

I'm about to start my 3rd week on the exercise protocol, and I figured I should probably write about the first week before I forget it. I mean, I took some notes but there's only so much that can be done against the brainfog! So, let us see if I can take some words and piece them together somewhat coherently, shall we? (By the way, you can read about my intake and intent for this blog series here.)

The first week was hard for me in a way I wasn't expecting, honestly. I had been waiting so long to get into the program (let alone waiting to ACTIVELY do something that might make me feel better) that I wanted to hit the ground running, basically. (Or, hit the ground recumbent biking..... see what I did there?! Haha! ... ha......) 

RIGHT so, over the past 10 years of this disorder, I've learned a lot about my limitations. And a loooooot about myself in relation to how I feel about limitations. In short, if I kept going how I was before (and for a few years after I got sick) I was never going to get better. I did not listen to my body, did not respect my limitations and see them for the good things they can actually be. However, over the years, I have gotten better at this, and have found a medium where I still push a little bit, but not enough to over do it. And it's where I've been operating for a while. 

However, Week 1... the PTs didn't want me doing even that much pushing. They explained it like this (which I found helpful): if my POTS is a ceiling, what we/I/they want to do is to push up against the ceiling over and over, until the ceiling moves a little bit. Then rinse and repeat. They do not want to "punch through" it because that only sets us back, increases the time spent in recovery, and does more damage than good. 

So, basically, the first week was a lot of me getting used to this. I had stopped "punching through" the ceiling a long time ago, but I was still (continuing with the metaphor) taking chunks out of it now and again. I needed to slow down even more. Which has been tough for me--I'm presented with something that could increase my quality of life and I. WANT. TO. GET. BETTER. NOW. But I can understand WHY I need to take my time. And if I'm going to put myself through this program, I might as well do it the way they have seen it work. 

Anyway, the first week was mainly them checking my heart-rate and blood pressure throughout 20ish minutes of intervals on the recumbent bike. This, obviously, was to keep an eye on how my body was responding. But also checking in on my symptoms, how frequently they were occurring, how intense, etc. Basically finding out where on the protocol I should start so that my body was being pushed, but not pushed too far.

I was still a bit tired throughout the week, but not as tired as I was expecting (again, as I've been used to the taking out chunks in the ceiling). I was expecting being bed-bound, honestly, but that's because that's how I had done things in the past. But was happily surprised that I was still able to do mostly what I had been able prior to starting, save for an extra nap here and there, some more fibromyalgia pain, etc..... I guess it's all relative, huh. :) 

Another thing I took away from Week 1 is my PT (who is awesome) was saying how POTS, for a lot of people, is both a cardiac issue and a neurological issue. So while we're working on the cardiac side of it with the program, the neurological side is habitual. Needing repetition and time to sort of figure out the right way to work. POTS is vast and varies from person to person, but it makes sense to me and I will have to read up on this concept when I have some more time and energy. (Or, if anyone has good articles/research, please send them my way if you can!)

Lastly, and the weirdest thing—it's strange being around people who actually know shit about POTS. Usually I'm the one explaining it, but there have been instances where the PTs have told me things I wasn't aware of. Plus, there's just an all-around feeling of someone "knowing about it". It's really weird and surreal, but nice. In the same vein, we've also been bouncing our knowledge off each other. Mine as my experience first hand and them as they continue to work with POTS patients. 

Anyway, there are other things to talk about, but those are the main ones I took away from the first week. I'm neither hopeful nor cynical at this point, I guess. I'm just doing. One step in front of the other, one day at a time. I guess that's all we really can do regardless of where we our in battle against POTS, yeah? :)

Hugs,
s.e.c

Dysautonomia Awareness Month

I feel like my autonomic nervous system got wind that it was Dysautonomia Awareness Month and decided to give me some talking points. Vis a vis (I feel all nerd-glowy for using that in a sentence...)

Vis a vis, I neared my record for shittiest blood pressure ever this week. A whopping 63/44. This is second only to the 50something/30something I had a few years ago. I... uh... can't remember exactly because I'm not entirely sure I was fully conscious at the time.

What I am sure of is that those of us with chronic illnesses are some of the most resiliant, badass people out there. We manage to do a lot more with far less than most people could even think of doing. Because we have to. Because we refuse to give up. And, for the most part, I've been doing pretty well lately. Things have been manageable. No running marathons or the like but I've been able to get dressed most days, go to appointments if I need to, take my dog for walks now and again, make dinners (with, like, actual cutting and pans and veggies and crap!), and focus long enough to get some writing in.

But here I am on Day 4 of Ridiculously Shitty (as opposed to Typically Shitty) Blood Pressure and while, yes, I'm trying to figure out potential causes as well as balance and take care of myself, I can't help but think, "Wellp, it was a good run while it lasted." And isn't that one of the biggest fears for anyone with a chronic illness? We value the crap out of the days where we can do stuff -- even "little" things like making dinner for cripes sake. We don't take the hours, or days, or weeks, or months for granted where we feel like we're living rather than just getting by. And, through it all, we never forget the worst it has been for us, which makes it so we can't help but think -- when we catch that cold, or push too hard, or the weather changes too quickly -- that it's going to finally, and permanently, take us back to that life that wasn't living at all.

Driving back from my appointment yesterday (instead of running errands like I wanted to, because my blood pressure plummeted), I thought about people who've gone into remission with cancer. How do they do it? Because God, now there is a fear of a hammer dropping for sure. Holy shit. Seriously, how do they do it? It's like the fear I have but ten-fold. And, in no way am I comparing cancer to dysautonomia but, rather, trying to acknolwedge the freakish badassery of cancer patients -- because with Dysautonomia, I can at least know I'm not necessarily fighting against death.

I also know I am armed with more knowledge now than when I was bed-ridden for 2 years. I know things to do that help and things to avoid. But none of it is a given. My nervous system could just decide to go flooshotty and no amount of water, or salt, or whatever could necessarily right it.

Except, nothing is a given for anyone. No one is guaranteed to wake up tomorrow. I know that platitude as well as the next person. Except, most people don't have to choose between taking a shower or feeding themselves in the morning. And maybe the fear of losing it all keeps me trying my best to live well -- which might not be something most people get to have either.

Dysautonomia Blog Series: TICCTHMFNS - Adventures in Chiropractic....ia

We are halfway through our Things I Can Control That Help Me Feel Not Sucky (Dysautonomia Edition) blog series!

My apologies for the long delay between posts -- I've been trying to keep hanging on with everything. But, it is finally time to talk about how chiropraction....... chiropracticia.......

It's time to talk about how seeing a chiropractor has helped me!

In April 2013, Mr. S.E. Carson started seeing a chiropractor for various issues he wanted to take care of. While he and the chiro were chit-chatting during one of the appointments, Mr. S.E. mentioned me and my struggles with dysautonomia and fibromyalgia. To his surprise, the doctor nodded in understanding and launched into a full discussion with my husband about both illnesses. He then suggested I come in to see his wife (also a chiropractor) who has experience treating women with fibro and dysautonomia.

My Husband, being the wonderful man he is, was very excited about this. Not only that someone in the medical field had actually HEARD about these issues, but also that they were knowledgeable and felt like they could really help me. I, on the otherhand, wasn't so thrilled -- for a couple of reasons.

Reason 1) I've always been a bit leery about chiropractor and I have no idea why. I think, growing up, my Mom must've mentioned something in passing about this ONE rogue chiropractor who kept purposefully messing up peoples backs so that they would keep coming back to him and blah blah blah. Me, being the all-or-nothing kind of girl I am, apparently decided that meant ALL chiropractor are magical gypsies who know lots about cracking skeletons in just the right way to keep you coming back so they can make miiiiiillions while all your bones just continue to hitchhike aimlessly around your body.

Reason 2) I've sort of been jaded about people (especially doctors) claiming they know about fibromyalgia and dysautonomia. (Shocking, I know). The handful that say they do usually wind up knowing less than I do. It seems like they think they know about it it simply because they've heard about it, or read a blurb somewhere. It's like me saying I'm Kim Kardashian EXPERT simply because I read an article about her and will never get those 2 minutes of my life back.

Needless to say, it took a couple weeks for Mr. S.E. to convince me to go. Once I finally did, I found the chiropractor was very nice and, I have to admit, did seem to be surprisingly knowledgeable about my chronic illnesses. After asking me a thorough gamut of questions, she started poking around at me to see what the deal was. After a few "wows" and "hms" and a couple pops (that, I admit, felt oh-so-good), she told me that my body was a little messed up.

To steal a page from the brilliant Allie Brosh and The Oatmeal, here's my stab at a visual interpretation of my appointment.

Below is (as far as I can tell) a representation of a normal person's vertebrae:

(For those of you that need pictures that don't look like they've been drawn by a 5 year old... here's a picture (below) I borrowed from wikipedia:

And here's me and my vertebrae:

According to the chiro, my C1 vertebra (the very top one) is very much, and very angrily, out of place. This, in turn, messes with my spinal cord -- which moves down the spinal canal, straight through my spine/vertebrae. (Right: from idsportsmed.com)
 

Additionally, there are a lot of very important nerves at the base of the skull. Most notably is the vegus nerve which communicates with the parasymathetic nervous system, part of the autonomic nervous system. The vegus nerve helps relay messages from the brain to the heart, lungs, stomach (just to name a few) and helps controls digestion and circulation. Sound familiar, POTSies?

(Below: a very nice picture I found at http://www.newhealthguide.org/Vagus-Nerve.html, which made it so I didn't have to draw the parasympathetic nervous system myself.

Everyone thanks you, http://www.newhealthguide.org/Vagus-Nerve.html)

3831120_orig.jpg

So, since my (wonky) C1 vertebra is at the base of the skull, it might very well be pinching, or affecting in some way, my vegus nerve.

Anyhoo, after she was done explaining this, and seeing as fibro and dysautonomia are both nerve related disorders, I decided it maybepossiblydid make sense how that the C1 could be affecting me. And, over the past year, I do feel that getting adjusted has benefited my health and quality of life. In fact, I can typically tell when I am ready for an appointment by how fatigued I feel.

Of course, as it is with anything I post here, it might not work for everyone. However, I feel it's important to have as much information as possible in order to begin finding out what does help.

And, as always, remember you aren't alone!

- S

The Feeling of Sadness and The Sadness of Feeling

Good morning kind, single reader who might be a spambot. I've been having a rough go of things lately and thought maybe a nice, healthy, bitch fest might do me some good. Or, at the very least, it might help other people if they are going through something similar, or feeling something similar.

When I was officially diagnosed with dysautonomia in 2009 (after having horrible symptoms for 2 years), it took me a while before I could accept that I couldn't do everything. ("A while" being like, another 2 years...) Since then, I guess I've subconsciously operated under the idea that I could do a little less than everything. But, only recently have I realized that might also be an unrealistic expectation.

What I'm saying, I suppose, is that I've been struggling with some depression I think. I say "I think", which is weird considering I've had depression the majority of my life and intimately know what a bitchwhore it is. But there is an anger to what I'm feeling now that I'm not used to. A resentfulness.

For those of you who don't know, I'm a teacher by day. As I mentioned a bit in my previous downer post, I had an absolutely wonderful summer where I was able to rest, spend time with my family, and have enough "energy" to do a number of things I love... all in one day! ONE DAY, people! My God, it was AMAZING. But school has started back up and I am back to being an exhausted, pale, zombie. I can barely get through work, I can't do anything when I get home, and I'm so tired that I am snapping at my dogs and my husband. I hate that.

I love my job... usually. But I've absolutely loathed it since I've gotten back. Because I am chockfull of prickly, rage-y resentment. I've been looking at my job as the culprit -- that it has taken away all the ability and energy I had to do things over the summer. It's not my job's fault, though -- it's dysautonomia's. But how can I be resentful to that? It's not like it will solve anything. It's not like me saying, "Dysautonomia, I'm so fucking sick and tired of you. I've put up with your crap for so long and I'm just fucking done" will actually solve anything, you know?

I've worked so hard at trying to accept things because I know mulling everything over and being mad won't do anything except expend my already small well of energy. Hell, I wrote an entire blog post about it here and here.

But, emotions are emotions sometimes, I guess. I've spent a life fighting them when they just want to be, and need to be, felt.

I know other people with dysautonomia would LOVE to be able to get out and have a job. I know this. But... it's like maybe all of us have an idea in our heads of what it means to us to "live". Is it so bad to want such things? To want to come home and romp with my puppies and be able to cook dinner and write? Because it feels like it is.

I'm rambling. I do that a lot. I really have no idea where I'm going with this post or what I'm trying to say or even if there IS anything I'm trying to say. Other than we've been dealt a crap hand. Lots of people have, yes -- but that doesn't change that we have our own, unique, crap hand, too. And it makes me sad. I'm sad and I know you understand my sadness. I'm sad but I know it will get better because it always does. But it is hard. It is hard when that sadness settles in a little deeper.

So maybe all I can do is feel it. To accept it all, even the resentment and sadness. Because even sadness lets me know I am still alive.