Endurance

I’ve been told I’m a cooperative patient, an ideal therapy patient who is compliant with whatever therapy is prescribed to the best of my ability. Even on days when I struggle to get out of bed, or my memory fails me, I still make an attempt to fill out the worksheets and keep a therapy journal. If I forgot most of the week, I dig for the little things I do remember, and I note them down and try to think of the skills I’m currently learning.

Even during periods of GERD and dysautonomia flares, I think about therapy each week, including the exposure therapy I’m doing for a panic disorder. We’ve come closer to realizing a lot of my triggers may be PTSD-related, which is why I have such a visceral reaction — a visceral, full-body revulsion — to going out in public anywhere. Regardless, exposure therapy is the go-to for PTSD as well as agoraphobia, so I’ve endured. Even on the days I’ve failed, I plan to try again the next day.

As my body is having hot flashes and I grow dizzy, and I feel like vomiting and my eyes widen with fear as I survey my surroundings, and I struggle to breathe while my hands go tingly, I pursue. I push on only to feel that familiar dread sink in; another dysautonomia spell is starting. And I’m out here alone. Oh, gods. I hope I don’t faint.

I got a wheelchair after nearly-fainting and having concerning symptoms at the doctor’s office. It’s a manual, so it requires upper body strength and practice to be able to use it properly. Naively, I thought it was the key to making exposure therapy more bearable. I would feel safe and be able to go out more.

I was humbled quickly as the chair required more strength than I often have. Sure, I can lift a ridiculously heavy item if I have to, I have the natural muscle, but I lack the stamina for prolonged exercise, upper body included. Still, I was determined and learned a few tricks from other wheelchair users and helpful folks on Bluesky, and I finally understood how to make the thing work.

My bad shoulder, the one I injured when I moved in January that never got better, became clicky again and I worried I’d injure it further beyond repair. I also seriously doubted my ability to be able to use the wheelchair for what it was intended for, to cope with the fatigue and breathlessness and near-fainting that my symptoms brought on from dysautonomia. I found hope after someone with a similar condition mentioned they’d gotten a power chair covered through their insurance, so I messaged my doctor after trying the chair for a good week. She’d always been understanding and I figured, if she prescribed me a wheelchair, surely she’d be supportive of making my life a little more accessible.

I was let down a few days later. My doctor sent an article about the importance of exertion and exercise while dealing with POTS/dysautonomia, and how many patients see remission from the illness with persistent dedication. She was worried the lack of physical activity from using a powerchair would make me sicker. So, no powerchair.

My body felt like lead. The small bit of hope I’d gained died with that message, and I resorted to trying the manual wheelchair again after some consideration. Maybe, as everyone always told me throughout the years, if I just kept pushing even when it felt impossible I’d be fine. If I just overcame my anxiety everything would improve. After all, it’s just anxiety making it worse. I’m not actually that ill, otherwise my doctor wouldn’t have declined my need for a better mobility aid.

Exercise more. It’s just anxiety. Stop acting ridiculous. Maybe everyone has been right all along, I’m doing this to myself and it’s in my head, or I’m making it worse by not trying hard enough.

I got the third degree on social media for accepting my doctor’s words and wanting to follow her advice, after I admittedly vented about losing hope. I know others meant well, but in all honesty, it added stress to my already exhausted brain, so I deleted any mention of it days later. I knew then I couldn’t talk about it online, not even in supportive places, because people were just going to keep pushing back which isn’t what I needed. I needed encouragement.

I gave it my all when an appointment came up Tuesday. It was time to go to the hospital to meet with a dietician so I could get a week’s worth of food from their food pantry. I was feeling confident, if not a bit tired. I’d been practicing with the wheelchair a little more, and while it was tiring, I felt I was getting somewhere.

My case manager is unable to touch my chair, a rule from the place she’s employed by, so I felt fairly confident I could lift my chair myself in and out of the car.

Again, I had been thinking of past me, a version of myself that would’ve had no issue with it.

I struggled with the chair as my heart hammered and I grew breathless. I dropped it on the ground and unfolded it, and then looked up to see the length of parking lot I’d have to manage myself because all the parking spots were full that day, and we’d had to park far away.

The parking lot was hilly and had too many inclines. At one point, it felt like a continual incline up to the main sidewalk. I had to stop several times as I struggled to breathe, and my case manager stopped beside me, patiently waiting for me to be able to continue. She’d left for my appointment early, she said, to give me time to make it to the door.

Finally, I made it to the front entrance only to find a small hump to roll over before getting to the main door. I pushed on, ignoring my body’s warning signs to stop. My heart was already hammering from anxiety, I was overheated, and I couldn’t breathe. I was worried I’d pass out. Fatigue crept up on me and threatened to not let me move any farther.

I managed to push over the last hill and made it to the lobby of the hospital, and thankfully, the door I had to go into was off to the side of the entrance.

As I sat in the dietician’s office, I could barely speak because I could not breathe. I apologized and spoke as much as I could between gasps of air, and she was patient with me and very kind. As she was checking my ID, a familiar feeling of a fainting spell came over me, and I started to panic. I did my best to slow my breathing and repeat the mantra, ‘you’re okay, you’re safe,’ and I hoped more than anything the feeling would pass and I wouldn’t actually lose consciousness because I had to continue to operate the chair. No one could help me do it.

I powered through, and the feeling did pass. I wheeled into each room and the dietician gave me the foods I’d picked from the point system we’re given, and then my case manager pulled up to the entrance that time to get me. I mustered the strength to lift my wheelchair into the back of the car again, and I felt like my lungs were going to burst. I hurriedly got into the car and tried to rest, again unable to breathe.

The fatigue spells I often got had been better lately though, and I’d been doing a little more moving around, so surely, I’d recover. Exercise is good for me.

Ever since then I’ve gone downhill. The fatigue is overpowering, and I’m on day two of it. The second day has been worse, and I’m getting hot flashes from trying to catch up on cleaning that I have to stop halfway through. I’d had a headache for a week at that point because of the weather, and I could barely hold my eyes open. Still, I was determined to stay awake.

Every time I stood, my heart raced with exhausting palpitations and I couldn’t catch my breath. As my body pounded in time with my heart, I stood holding a hand to my chest, waiting for it to calm so I could walk. I looked at my wheelchair. I had to keep going. That was the key, wasn’t it? Exercise more. Even the articles said it would get easier after it got harder, so I had renewed determination.

Maybe it was my fault I was so ill. All the time spent with PTSD depression and dissociating for a couple of years that kept me hopeless and inside — it did this. I can undo this. After all, that’s what everyone has always told me throughout life; keep going. You have to push yourself. Giving up is failure. If you just push you’ll get better.

It’s all in your head.

It’s just anxiety.

I took a deep breath, steeled myself, and tried to take my wheelchair onto the balcony. It was just wide enough and private so I didn’t have to answer more questions about my wheelchair, since I get asked or noticed every time I go downstairs with it. I just want to be left alone, for no one to notice everything I’m doing and just let me get on with my day.

The balcony was just wide enough to roll forward and back, but it quickly became unsafe due to the gap in the bottom of the metal fencing. I gave up on that and resolved to just ignore people and use the long hallway in the building instead.

Something built within me that wasn’t good. It was a storm I wasn’t unfamiliar with, but it was quiet and I tried to keep it down. It was as hopeless as asking a volcano not to erupt when it’s already bubbling.

I clenched my teeth and endured the fatigue that made it hard to keep my eyes open, I smacked my cheeks and shook my head, and I pulled the wheelchair out of my apartment and trudged forward. I made it halfway down the hall before the hot flashes kicked in so badly I became overwhelmed by the icy hot sensation, and it was difficult to breathe again. So I decided to turn around and come back home. I got the wheelchair inside, and I made my way to the sliding glass door to the balcony.

I’d opened it because the weather was nice for a change, and I considered standing outside to keep my body upright, to keep pushing it into normalcy.

And then, I remembered my therapy journal. I had forgotten to make an entry yesterday. The powerful storm in me built and my heart raced, and I tensed as I tried to control, what I call, the Beast. I opened my binder and started a journal entry for my therapist, only to finally lose the battle once I turned the page to write more.

I started misspelling things, pressing harder into the paper, and my writing was no longer legible. I jerked the pencil across the page and almost ripped it, and in a violent fit scribbled hard and chucked the entire notebook and pencil across my living room. I sat frozen as the meltdown struck. I had to access my skills somehow to make it stop, or to at least lessen the blow.

I took a few deep breaths while still in rage-mode, grabbed my notebook after reprimanding myself for throwing it, and then tried to write again only to end up scribbling out a whole page and throwing it again.

I retrieved it and opened my sketchbook instead, and I started to draw the form of a person that devolved into a scribbled mess of a creature hanging by a noose. I couldn’t hold it back anymore. It was too much.

I wrote and wrote and wrote everything everyone was expecting of me, the challenges and the skills and the expectations. Exercise more, keep pushing, endure, endure, endure.

Endure the pain. Endure the panic attacks. Endure the fear. Endure the fatigue. Endure.

Try to ride the bus this week. Go out a little more. Exercise more. Do you want to hang out? How are you feeling? Cope with the memories. Bring down the panic attacks. Use the skills. How are you feeling? Go to the dentist. Go to the store. How are you feeling? Keep up with the wheelchair. How are you feeling? Endure. Endure.

No, you can’t have it easy. No, you can’t have the powerchair. Exercise. Endure. Endure. Endure.

Do more. Do more. It’s not enough. It’s never enough. Do more. Endure the breathlessness. endure the heart palpitations. Do laundry. Clean the apartment. Endure.

En-fucking-dure.

It’s all in my head. It’s just my anxiety. Does no one believe I’m as ill as I feel? Maybe I’m not as ill as I feel. Maybe it’s my fault.

I stopped and came to the conclusion that’s always an option in the back of my mind. I have fought tooth and nail every step of my damned life to survive or have basic needs as an adult. I have spent a life enduring. I’m tired of enduring. When do I get to live? There is clearly one solution now. One I’m always too much of a coward to follow through with. And it involves finally resting and relieving myself of all this pain I endure alone quite often.

I mustered an inkling of the skills I’d learned from therapy and swallowed a sedative and then took a four hour nap, only to dream of that damned wheelchair and my want for something more accessible to make my life a little easier for once.

And even now, after my body clearly confirmed I am chronically ill and it is that bad, I still blame myself, and I know that if I just got over my whining and just got off my ass and pushed through the pain, I’d get better. I’m stopping myself. My lack of control over my emotions is stopping me.

One day, it will get better. It has to. I just have to try harder because I’m giving up too easily. I’m not trying hard enough. I’m keeping myself sick, I can’t even eat a healthy diet; I live on fucking junk because shitty foods are the only things that give me a peace similar to the way booze and cigarettes did years ago.

I don’t know what to believe, who to believe. Gaslighting has caused me to not trust my own self, my own thoughts. I don’t know when to listen to my body or when to ignore its screaming. I don’t know if something is a medical emergency or concern, or just nothing and mere exhaustion. I don’t know if I am really as sick as I feel or if it’s something I’m doing wrong. I have no base of truth to work from.

And then the post exertional malaise interrupts my sleep with tossing and turning and insomnia, and restless legs, and I can’t fully recover. And the stomach pains begin from stress. This time, they’re mixed with the burning from GERD.

And then I realize, I am again fighting everyone and everything just to beg for a life that is a little comfortable, a little bearable, and without the trauma and illnesses that make every step a challenge.

©2025 Shane Blackheart