Tag Archive | high blood pressure

The Autonomic Nervous System & Why It Matters

Dysautonomia Awareness Month: October 2015

Somehow, dysautonomia and all the illnesses under its umbrella have continued to be brushed off as a woman’s issue, exaggeration, not a big deal, “just live with it”, “I get dizzy sometimes too, have you tried drinking more water?”, “come on, I bet you’d feel better if you just got up and got out of the house”, or everyone’s favorite, “You don’t look sick, though.” As if every POTsie hasn’t tried slugging back a dozen bottles of gatorade and coconut water per day for weeks on end, as though we somehow prefer lying in bed or using a wheelchair to get around and depending on our friends/families for everything when two years ago we could bike or run as far as we wanted, as if we haven’t all tried to convince ourselves in the beginning of our illnesses that it might just be in our head and gone out to do the thing, only to pass out doing the thing, or before we could do the thing. And what on earth does sick even look like?! No one can answer that question, I’ve found.

I’m putting salt in my coffee as I write this, and I have 32oz of water in a quart sized mason jar lined up behind that which I must drink just so I can take a shower without falling on my face (again). After I get out of the shower, the heat will have made all the blood pool in my stretchy veins in my legs, which will be extremely puffy and swollen and sting like crazy when my feet touch the bath mat. I won’t be able to dry off, most likely, so I’ll wrap up in a towel and cling to the walls on my way to rest in bed for twenty minutes, at which point hopefully I will be dry and slightly recovered. I will still be dizzy, hot-flash-y, have a bright red line across my nose and cheeks, and I will probably feel very nauseous for a few hours, sometimes even the rest of the day, but I will push on, salting yet another cup of coffee, salting my food, chugging water throughout my afternoon and evening, and I will struggle through my physical therapy exercises, I will quite possibly be too weak to pull my own damn covers over my body tonight, and that’s life with a very mild case of POTS. I’m one of the lucky ones, I can count my falls on my fingers instead of by the dozens. I’m lucky because in the morning when the blood pooling is at its worst I can lift my own legs, lean them up against the wall and flex until the blood goes back where it needs to be. I’m lucky that I can take a shower by myself at all, even if it’s kind of miserable. I’m lucky that if I bend over I don’t necessarily land on my head every time. But I know so many wonderful people who are not so lucky. I’m lucky that I’ve had my symptoms my entire life and they haven’t taken the sudden turn for the worst that I’ve seen happen to so many friends. So I do all the things (just less often than I used to) that my autonomic nervous system make so very complicated, and I try my best to only state what my reality is, rather than complaining about it. Life is this way, I cannot change it for myself or my loved ones. All I can do is educate others, soak up as much knowledge as possible, and keep trying my best to reverse my symptoms slowly over time.

Finding Out Fibro

October is Dysautonomia Awareness Month.

Please help us spread the word about malfunction of the autonomic nervous system and the many chronic conditions it can cause. There is no cure for dysautonomia, it is an invisible illness, and from day to day the symptoms swing between severe and less severe, so life with any of these illnesses is a roller-coaster, to say the least.

No one bothered to teach me about the autonomic nervous system. In a perfect world, doctors would explain these things to patients who are experiencing classic symptoms of ANS malfunction, as I am, and they would explain just how involved the ANS is in so many processes throughout the body. Normally, when you are in pain or experiencing stress, your autonomic nervous system ramps up your blood pressure, makes you sweat, and elevates your heart rate. When the pain or stressor is gone, your ANS should quiet…

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Music to my Ears

Today I listened to music. My music. In my house.

That sounds like not much to most everyone, but it is huge to me. I haven’t put my studio music on for ages. It’s all the stuff I listen to when I’m deep in an art trance for hours at a time. I haven’t painted like I used to since I was diagnosed, and a part of me has felt like it is wilting as a result. Having five or six creative outlets at one time has always been a part of my madness!

Lately it’s a daily struggle not to wear my chronic fatigue, fibromyalgia, potential MS, and that pesky anxiety, and wrap myself up in them like a big ugly blanket. Some days are definitely better than others, but as anyone with a chronic illness understands, “better” does not mean that my pain is actually gone or that I should push myself to my limits and beyond just because my body will allow it temporarily.

So there’s obviously a balance to be struck here, and I have to confess that I haven’t completely found it yet.

I have a feeling I will always be looking for balance in my post-chronic-illness-life. That’s okay, because so is anyone out there who is paying attention! That’s what chronic pain does, it’s like an alarm system where the sensitivity is set way, way too high inside your body, but it makes you notice things other people forget to take into account.

This morning a nurse compared my chronic pain to high blood pressure. I was annoyed at first, but then I heard her reasoning and I melted. She said that just like in high blood pressure, where one system in the body is set on high alert, so too is chronic pain a system that is over-active inside our bodies. Suddenly it felt like all the weight lifted off of my shoulders: all the stigma I had directed at myself for not being able to beat chronic pain with willpower alone was gone. It takes years and years of effort to completely cure oneself of high blood pressure. I know because I have spent the last ten years doing just that, and succeeded, in the midst of chronic illness, even. I had a bad reaction to taking birth control, and seemingly permanent hypertension was the repercussion. It is not a clean & clear cut path to beating hypertension, it takes a multi-disciplinary approach to actually get rid of it, and then it takes maintenance to keep everything running smoothly even after managing to get it into remission. I still have to take it into account all the time. Comparing the two actually made so much sense to me that I was in tears, thanking the nurse for her perspective and the weight that had lifted off of me after years.

In celebration I am listening to music I haven’t listened to in almost as long, music that has always gotten my creative side to come out and play. I am hoping that at some point tonight I will finish my boyfriend’s homework (busywork about grammar, which I asked to be able to do so I could re-learn all the rules I have forgotten) and then I can pick up a paintbrush or a sponge and get myself covered in paint, gesso, and paper scraps. Here’s hoping! 🙂

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