Sensory Deprivation: A Chronic Illness Perspective

A sensory deprivation tank is a lightless, soundproof tank filled with salt water at skin temperature, in which individuals float. I’ve heard a lot about these tanks in the last few years and I’ve wanted to try one.

As a person who deals with extreme sensory overload on a daily basis, a sensory deprivation tank has always sounded so relaxing. I often use sensory deprivation in the form of noise-cancelling headphones and a dark room to help calm my sensory related anxiety. So for my birthday, my mom bought me a float session at Remedy Float in Savannah, Georgia.

It’s been a little over two weeks now, since my float. My biggest question immediately after the float was, how long will this relief last. Now that I know the answer to that question, I figured it was time for a full, detailed review of my experience during and after.

I had a little anxiety, leading up to the session. Even though I knew that I wanted and needed the sensory deprivation, it was an unknown that I wasn’t sure how to mentally prepare for.

I don’t really know what exactly I was expecting, but what I saw when I got there, wasn’t it. I wasn’t planning on going to space today. But when I was shown to my “cabin”, I immediately wondered if I needed to run back home to get my spacesuit. LOL.

The employee showed me how it works, handed me some ear plugs, and left me to it.

It’s a weird feeling, when it’s so pitch black that you cannot tell if your eyes are opened or closed. At one point, I literally had to reach up and touch my eyes to find out whether or not they were open. FYI, they were open.

My session was 90 minutes long. You can get in and out of the tank as needed or even prop the door open if you can’t handle the complete darkness. I was able to spend the whole 90 minutes in the tank without needing to get out or prop the door open.

I got undressed, put in the ear plugs, and rinsed off in my private shower (just as you would rinse off before getting in a pool). I opened the door, stepped in, and lowered myself into the water. I knew the water would be buoyant, but I was still surprised by how quickly my body bounced up to the surface as I laid my body back.

I don’t know how long it took my mind to float off into a trance, but because the water is the warmed to skin temperature, once I had laid still for a few minutes, I couldn’t even feel the water around me anymore. I felt like someone had cast a “Wingardium Leviosa” spell on me (high five if you understand that Harry Potter reference, lol). During the float, my legs would twitch at random moments, which would pull me from my trance-like state. I don’t remember, now, the specific thoughts that I had while I was in my trance, but I know I had some strange ones. My mind wandered as if I was dreaming, but I was still awake.

While I was in the tank, I felt a calm that I don’t think I’ve ever experienced. When I took away the lights and sounds that constantly cloud my mind and trigger my anxiety, my brain was able to relax. My brain was able to let go. I didn’t have to try to make sense of my surroundings because there was nothing to try to make sense of. For the first time in…ever, my mind could just “be”.

One of the strange things about being in the tank is, without any outside stimulus, the body isn’t able to keep track of how much time has passed…so I couldn’t tell how long I had been in the tank.

Because I have been in so much pain for so long, my body has built up internal defense mechanisms that have allowed me to cope with the pain. The downfall of that, though, is that my brain and my body don’t connect and communicate very well. Almost like, my brain is protecting me from my own pain levels because if my brain knew how much pain I was actually it, it would stop allowing my body to function. I say all of that to explain, while I was in the tank, my brain and body were able to reconnect. I was able to tune in to the areas of my body that had been ignored without the same pressure and pain I would feel outside the tank.

When my 90 minutes in the tank ended, the speakers inside the tank started playing tribal drum music to tell me that my time was up. The music started softly and I couldn’t hear it, at first, because of the ear plugs I had in. However, I did feel the vibration of the sound waves. As my body started to connect with the stimulus of the music, I reached above my head to crack the door open, to allow my eyes to slowly re-adapt to the light.

After a few minutes, I pulled myself up and out of the tank. As I stepped out, onto the floor, I immediately noticed that my joints felt much different. There was still pain but it was much lower than it was before I got in the tank. And the pressure that I had constantly felt in my joints for, pretty much, my entire life was greatly diminished as well.

I took a shower and washed the salt water from my body. Slowly but surely, I allowed my brain and body to reconnect with my surroundings. I began taking a “pain inventory” as I assessed the level or relief I felt.

And that’s when I noticed that, for the first time in MONTHS, the pain level in my head and neck, from the chiari, was lower than it had been in a long time. As I got dressed, I cried uncontrollable tears of relief because the pain had been so severe, for so long that I was awestruck to feel even the slightest relief that no other medication or therapy had been able to give me.

The next few days, after the float, the same sensory inputs that would usually send me into a sensory overload were easier for my brain to process.

The pain and pressure relief that I felt throughout the joints in my entire body lasted about a week. I’m not sure how frequently sensory deprivation floats are recommended, but if there was any way that I could afford to float once a week, I think my quality of life would increase dramatically.

If you ever have an opportunity to schedule a session in a sensory deprivation tank, I HIGHLY RECOMMEND IT! Even if you’re only able to do it once, do it! It’s still worth it. The relief, even though it’s not permanent, gives you a reminder that there is still hope out there for relief.

Float on, friends.

(Note: I think I heard that some insurance companies will cover the cost of a sensory deprivation float. So that’s an option to look into as well, to help offset the cost.)

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The Hope of Being Heard

Since we moved to Georgia in February of 2017, I’ve been getting bounced around from doctor to doctor. I get directed to one doctor, who sends me to another, who sends me to another. All the while, no one actually helps me and my symptoms get worse…

My cognitive function has declined, leaving me with little to no reading comprehension skills, a severely damaged short-term memory, and difficulty saying the words that my brain is thinking…among many other things. One day last week, I forgot where I was going, while I was driving. Because of all of this, these last 6-8 months have been some of the scariest months of my life. I’ve gone to doctors, expecting them to help me. Hoping, praying, and begging that someone…anyone…would be willing and able to figure out what’s wrong.

After my most recent visit with the last neurosurgeon, I felt so defeated. The neurosurgeon’s exact words to me were, “I don’t want to see you anymore. You’re shunt is fine, you’re just having headaches. Follow up with pain management.” Umm…what!?!? What is the point of of trying to get help from doctors only to be turned away and denied access to care? But I, reluctantly, agreed to try once more with with a neurologist.

So I met with that neurologist yesterday.

He. Was. Amazing.

I have to admit, because of all the medical experiences I’ve had thus far, I went in there on the defensive. I went in there with the mindset that he wasn’t going to help me. And boy, did he prove me wrong. Once I started talking, the emotions and anxiety all spilled out of me. The words kept spilling out as I was sobbing and my voice naturally just started getting louder. Finally, he stopped me and asked, “why are you yelling?” And he was right, I was yelling…and I really have no clue why. It wasn’t intentional; it was the result of months of frustration from being ignored and dismissed just spewing out. AKA, word vomit.

He looked over my previous MRI report and explained it to me, because the previous neurosurgeon didn’t. Those “headaches” I’m having are the result of a 5mm Chiari Malformation and a bulging disc at C2. He asked about my history and specific problems I might be having. He asked me about my sleeping patterns and took a look at my sleep log (tracked through an app on my Apple Watch) and told me that a some of my cognitive decline could, very well, be the result of long term sleep deprivation. He acknowledged that I have a severe amount of anxiety from not being heard by the doctors I’ve trusted to help me (instead of telling me that “if I treated my anxiety, my health problems would go away”).

When I talked, he listened.

I don’t NEED anyone’s validation about what I’m going through. Because, whether or not anyone believes me or helps me, what I’m going through doesn’t change. But having that validation doesn’t hurt either.

(Also, just a side note…the next person who tries to call my brain falling out of my skull, “just a headache,” might get throat punched.)

But you know what this doctor gave me…he gave me hope. He put together a plan of action. He looked me in the eye and said, “we’ll get you healthy again.” Now, I’m not really sure what “healthy” for me will look like. Medically/health wise, no doctor that I have seen has given even the slightest bit of hope that things can or will get better. I don’t even know how to begin to explain what it feels like to finally be HEARD after months of being ignored.

The pain isn’t any less. The cognitive function isn’t any better. And there’s no magic cure to make this all go away. But there is a plan. There are options.

THERE. IS. HOPE.

Behind the Scenes of a Chronic Illness

Every morning, when I wake up, I have to pop my joints back into place. Sometimes I’ll make light of it by singing, “the hand bones connected to the arm bones,” as I’m popping my wrists back into place. Other mornings, I don’t even have the strength to smile.

Once I have my shoulders, knees, hips, hands, and elbows all back into place, I can begin to stand up. I have to stand up slowly because standing up too fast will make me dizzy. Which will land me, if I’m lucky, laying back down for a few minutes or, if I’m not lucky, face first on the floor.

Once I get up and start my day, I begin to evaluate what my pain levels are at. This is where my day begins and sometimes where it ends also. Some days, I can get up and be productive. Other days, making it from the bed to the couch is my biggest accomplishment.

Most days, the people around me don’t realize how bad things are because I’m good at masking it. I function at pain levels that most people wouldn’t even consider getting out of bed for.

Every month, I keep a bullet journal tracker for all of my medical stuff. I’m able to track my pain and dislocations. Because of this, I’ve been able to notice patterns and specific triggers. But what I’ve also learned by keeping these trackers is that I’m really good at not showing how bad things are.

My body moves in weird ways. Ehlers-Danlos Syndrome effects the body’s production of collagen, which effects the stability of connective tissues. My joints aren’t stable and that lack of instability causes dramatic amounts of pain. But this is just some of the instability you can see…

There’s also a lot of instability that you cannot see. Because my connective tissues are weak, Ehlers-Danlos has led to the development of other conditions. I also have a chiari malformation and idiopathic intracranial hypertension. These conditions have begun to cause neurological deficits due to pressure on my brain and excess spinal fluid.

I tell you all of this, not to ask for pity (please, don’t feel bad for me), but to raise awareness.

A lot of times, we (people with chronic illnesses) pretend that we’re doing okay in order to not make the people around us uncomfortable. But 9 times out of 10, when we’re telling you we’re okay…we’re really not okay. But because people don’t know how to respond when we’re honest, we just pretend that everything is fine to avoid the awkwardness. But the thing is, it’s okay if you don’t know what to say because we don’t know what to say either. It’s a hard thing to deal with. But we’re the ones living through it everyday. So if your uncomfortable with it, just imagine how we feel…

You never know what someone is going through. You never know what is going on behind the scenes in someone’s life. It costs zero dollars to be kind, so just do it.

Fighting Back

Any chronic illness is a fight. It’s a fight with your body every day. It’s a fight of whether or not to do the thing. It’s a fight of whether or not to get out of bed or to leave the house.

Some days I win the fight. Other days I lose.

This last week and a half, my body has been in a bad flare. Two weekends ago, we celebrated my daughter’s 8th birthday and I pushed my body quite a bit more than I should have and as a result, I’ve spent the greater part of 10 days trying to recover. There have been several days where I was in so much pain and had so little energy, that I didn’t get out of bed until after noon.

But yesterday, yesterday I finally felt like myself again. I have some life back in me. I don’t always have the energy to do things, so when I do, I take advantage of it.

Yesterday, I lifted heavy things and put them back down. I went to the gym and reminded myself that even with my, sometimes broken, Ehlers-Danlos body, I am still an athlete and my body can still do great things.

Before my EDS symptoms began to severely impact my life, I was an athlete. I was a runner. I lifted weights. I was a personal trainer. I celebrated my body for the things it was capable of doing.

It was 2014 when I received my diagnosis. I had had joint pain and other miscellaneous issues my entire life, but in 2014, it was like my entire body just started falling apart, all at once. It was hard to accept that suddenly my body had limitations and I couldn’t do the things I was previously capable of doing. It was definitely a grieving process. I had to grieve the loss of the life I was once able to live and accept that, with the information I now had regarding Ehlers-Danlos Syndrome, I had to adjust my life accordingly.

After my EDS diagnosis, I reluctantly ceased running and weight lifting at the insistence of my doctors and following several injuries (some of which may have been avoided if I had been willing to accept my limitations sooner). But for several months now, I have watched with jealousy as my mom got back in the gym. I’ve watched as my mom was living out my own dreams in the gym. When my mom told me that she had learned how to deadlift, I cried. Deadlifts are my favorite exercise. Deadlifts make me feel more powerful than anything else.

It doesn’t matter how old that little girl gets, even at 30 years old, she’s still watching her mom.

But it was then that my jealousy turned into anger towards EDS. Anger that EDS took away my ability to do the things I love. As I started to feel that anger though, and process through that emotion, I realized. EDS didn’t take away my ability to lift weights. It can still be done. It takes different precautions and methods than I used before. And that’s when I was able to turn that anger into an insistence to do more and accomplish more.

What I reminded myself of yesterday, is that no matter what my physical capabilities and limitations are, I am still an athlete. My body can still do great things! I must use more care and I can’t go at the same level of intensity as I once did, but I can still do it. I can still lift heavy weights. I can still push myself and then push myself some more. I can still celebrate my EDS body for what it is capable of doing.

I am still strong. I may not be as physically strong as I used to be, but I have more strength in me than I ever dreamed possible.

Some days, I might lose the fight against my pain and fatigue and nausea. But today (and yesterday), I am fighting back and I am winning.

Today, my body is sore from yesterday’s workout. But it’s that sore that reminds me, with each step, that I am STRONGER than Ehlers-Danlos Syndrome. I may have EDS. But EDS does not have me.

I have EDS. But I am still me. I am still an athlete and EDS cannot take that from me.

Celebrating my accomplishments, no matter how small, are the strongest weapon we have to fight back against chronic illness. Celebrate taking a shower on the days you can barely move to get out of the house. Celebrate brushing your teeth on the days you can’t get out of bed. Celebrate a day with no dislocations. Celebrate the memories made. Celebrate your body for what it still can do, instead of focusing on what it cannot do.

No matter your diagnosis. No matter your limitations. No matter the cards you’ve been dealt.

Just celebrate.

What are the things that you are celebrating today?

The Curse of Being a Medical Anomaly

I never dreamed that one day I would wake up sick and I’d never get better.

My life wasn’t always this way. I used to be *relatively* healthy. But I’ve always had pain. As a kid, doctors always said that I just had growing pains. But as I got older, the pain got worse and worse.

Every time I would go to the doctor and explain what was going on, they would do lab work and run tests. And every time, it would all come back within normal range. But when you’re a medical anomaly, normal isn’t necessarily your normal.

At the age of 26, I finally had a doctor who listened. I had a doctor who sat down with me long enough to go over my ENTIRE medical history…something that no doctor had ever done before. She was the first and only doctor I’ve ever had who was willing to actually take the time to consider that what was going on with me could’ve been something more than the typical or common ailments. She was the one who diagnosed my Ehlers-Danlos Syndrome.

It’s almost like, when they can’t figure out exactly what’s wrong, instead of admitting they may not know what the issue, most doctors will accuse you of faking it or being dramatic instead of investigating further.

Now, I recognize that it is difficult to connect things like joint hypermobility, clumsiness, chronic nausea/stomach pain, and tinnitus. However, I do think that many doctors have become complacent. Doctors are taught in medical school, “when you hear hoofbeats, think horses not zebras.” But what happens when you’re a zebra, not a horse? Doctors are encouraged to NOT take the effort if they don’t easily know what the issue is.

It’s like doctors don’t realize, understand, and/or care that their actions or inactions directly impact my quality of life. They don’t realize that their negligence to treat my symptoms may cause me to be unable to go to work, which results in lost wages, which results in financial stress, which causes anxiety, which causes a worsening of the original symptoms…it’s a cycle that is the direct result of a doctors decision.

Sometimes, when the symptoms get too severe, I physically cannot play with my children…which is something I will never get back. My children will never be little again. I only get one shot at making childhood memories with them. The physical pain and other symptoms aside, this is most painful thing about being dismissed by doctors. My kids will never be little again and I will never get this time back.

Going to the doctor, for any reason, when you have a chronic illness is weird.

It’s like, imagine everything in your house is on fire…you’re standing there and the fire department pulls up. They ask you to describe the fire to them and MAYBE, if they can figure out what caused it, they can put it out.

You start to explain that some areas are more enflamed than others, but that there’s fire everywhere. They stare at you dumbfounded, as if they don’t understand the words you are saying. So you try to elaborate. You explain the fire in the curtains is the biggest, but the fire in the photo albums might be doing the most damage. But also, the fire in the couch is incredibly inconvenient.

The fireman takes a look around and notices that your TV is on fire and suggests the cause to be electronic-fireitus, but if that were the cause, there would also be some fire in the DVD player. You try to hide your irritation as you sigh and explain to him how the DVD player has actually been on fire for years. You didn’t mention it because it’s always been a relatively small fire, compared to the rest of the fire. You point out to him that the DVD player fire is right next to the bookshelf, which has much more fire.

He glances over at the bookshelf and shrugs. He tells you not to worry about bookshelf fires, those just happen sometimes.

He begins to notice your frustration rising and suggests that the fires would probably all go away if you stopped being so negative about them. He advises that if you’d lose weight, they’d probably just go away on their own. He tells you that you should try doing yoga to help your relax and stop being so dramatic about the fires.

We spend our lives being told that doctors are here to help. They say they want to help make people’s lives better. But when it comes down to it, they don’t see their patients as anymore than a name on a piece of paper. They’ve taken away the humanity of it.

There are treatments and medications that can improve my quality of life and alleviate some of my pain, but I am at the mercy of doctors to determine whether or not I am allowed access to them.

We’re supposed to trust doctors to help. To listen to us and treat us. But what about when the majority of the medical community fails you? Then what do you do? What are my options when I run out of options?

Now, I’m not saying that ALL doctors are like this. Some doctors still care. Some doctors recognize you as an actual person. Some doctors won’t give up until they’ve found the root cause of the issue. But I haven’t found that here. Before we moved to Georgia, we lived in Texas. The doctors I had in Texas were some of the best doctors I’ve ever had. But here in Georgia, it’s a whole different story and it’s a shame.

It’s a shame the patients have to be dying (and sometimes not even then) to be taken seriously. My heart breaks for the number of people who live in agonizing pain because of doctors who won’t listen.

I’ve heard doctors say, “don’t confuse your Google search with my medical degree.” To which my response is…don’t confuse your medical degree with the crap I’ve had to live with.

To all the people out there being ignored by doctors…you are your best advocate. Keep pushing and don’t give up until you find someone who will listen.

These Are My Stripes

Welcome to my new space. This will be a revamp of my blog Welcome to my Walk. If you want to check out the previous posts, feel free to head over there to see the years prior.

Over the last few years, I’ve been through a lot both physically and mentally. My health has been a roller coaster and my life has been a whirlwind. Thankfully, God has gifted me with a talent for writing and passion for sharing my struggles…so here I am.

These are my stripes.

Good company in a journey makes the way seem shorter. — Izaak Walton

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