Bed ridden: a day in the life of spoonie

After I was diagnosed with my chronic illness (autonomic neuropathy, POTS, and MCAS) my flare ups became almost constant. Leaving me in a constant state of torture. I was bed ridden on and off for almost 3 years. This is a look into those first few years. 

If you're unfamiliar with the term, autonomic neuropathy refers to a malfunction of your autonomic nervous system. What does this mean? It's the system that controls what your body does naturally, without any direction from you, like controlling your heart rate, blood pressure, and digestion. Under this broad category, I'm dealing with a specific condition called POTS (postural orthostatic tachycardia syndrome). Simply put, POTS causes symptoms typically when you move from lying down to standing, including increased heart rate, dizziness, and exhaustion. The root cause of POTS for me (its different for everyone), is mast cell activation syndrome (MCAS). Which is a condition in which the body experiences repeated episodes of the symptoms of anaphylaxis, due to an overproduction of mast cells. 

I wake up in bed after tossing and turning all night. Laying in my dark room in the same clothes from the last 5 days, un-showered, face unwashed, stomach unfed, blankets wrinkled around my legs, hair wet from the ice pack I slept with, still on my head. I call for my boyfriend Corbin, it's hard to even speak from the exhaustion. I ask for him to bring me water, my pills, ice packs and applesauce, I know I won't be able to choke down. 

I have all my symptoms at once. They dont take turns, they work in tandem to make my life a living hell. Each minute feels like an hour. 

My body shakes uncontrollably. My legs jolting up and down, back spasming, chest rattling, teeth chattering, arms and fingers trembling. I try as hard as I can to stop the shaking but it hurts to try and control it, so I give up. The shakes take over my body like an earthquake.  

My heart feels fatigued while it toggles from racing rapidly to palpating. It feels so overworked it might stop beating at any minute. Other times my heart rate is so shallow, I touch my neck to make sure it's still there. My chest is hot from my heart beating erratically. I put an icepack here, it gives a slight relief from the heat on my chest radiating from my heart. I close my eyes and try to envision it cooling my heart like ice on a fire. 

I put another icepack on my head to try and find relief, It pounds anyways. Lightheadedness and dizziness have my brain in a washing machine, swirling around as it throbs and pounds against my skull. My body can't regulate its own temperature so these ice packs can help, but can also work against me making me so cold I can't warm up. I'm always shifting from freezing cold to sudden hot flashes making me strip off everything and sweat profusely. 

I am nauseous constantly, it prevents me from eating. Whatever I can get down usually comes back up. Water goes right through me so I have to stay on top of my consumption. i'm on pedialyte #1/3 i'll have for the day and gallon #1/2 of water I'll have for the day. I do this because everytime i go to the hospital they tell me I'm dehydrated so I'm hopeful if I can retain any of this water I can avoid the waking nightmare that is the er. 

After an hour or so of holding it, I use the restroom. My circulation is nowhere to be found. My skin is pale and gray, feet and hands are blue due to blood pooling in my legs and arms. Especially when I'm standing, which is why it's reserved only for these bathroom trips. Periodically I decide to crawl to the bathroom instead. Dramatic I know, but sometimes it's just easier. My stomach twists and turns, my gi issues alternate between extremes. Walking even for a short distance is difficult, but it's also important to move my body so I try to walk back to the bed.
Without warning, a lightning bolt of heat and pain shoots down my neck into my arms and down my spine. Throwing me into a hot flash and flooding my vision with black. I sit on the floor until the vision starts to come back and the shooting pain subsides. I'm in Presyncope otherwise known as when you are about to pass out, but you don't actually faint. It happens randomly without warning mostly when standing but sometimes even if I'm laying down. It rushes over me like a waterfall I'm drowning in. I wish I would faint, finally topping over the edge instead of wobbling on it for minutes to hours.

I'm claustrophobic in my bed, the sheets are strangling my body from the inside out. I force myself to move to the living room if I can manage. Some days I'm not even that lucky. The room is bright and it hurts my eyes. I'm sensitive to light, sound and touch. The couch slowly sucks me into an abyss of dull darkness. Turns out watching spongebob in the living room is no less depressing than in my room. 

I waste hours trying to nap. I'm unable to sleep most of the time but I'm so exhausted I can't move my body or keep my eyes open. I have to focus to make myself breathe due to dyspnea or shortness of breath. I often wake up gasping and hungry for air. If I am able to nap it's often short lived which is a constant aggravation to me. I want to sleep as much as possible. The more I sleep the less time I have to spend being awake and feeling as shitty as I do.

Brain fog clouds my mind to a level i have never experienced before. I have moments where I black out and find myself in the middle of doing something I don't remember starting. My memory is fading quickly. I can't remember what I did this morning and start to feel like I'm losing memories of my past and childhood as well. If I'm having a conversation it is not only hard to speak from the extremely fatigued but also I forget what's being talked about and or how the conversation started.

I spend my time alternating from trying to sleep, crawling to the bathroom, crying, moving to the couch from the bed, to back to the bed and so on. All the while my symptoms are in full force, i'm in a constant state of torment that can't be relieved. The torture is all consuming and all i can do is wish this wasnt happening, wishing this wasnt my reality. Saying I would give anything for this to go away. Panic attacks are common as the fear for my life and fear that it will never end is always rattling my mind. 

I tried almost everything to get better. During my first few years when I was bedridden, My flare ups lasted anywhere from weeks to months. Mostly months. My good days are usually a day, a week or at most a month. I spend a significant amount more in a flare up than not. Even when I wasn't in a full blown flare up I was by no means well. I wrote in my journal how proud and excited I would be if I did something like a 15 minute walk, for me that's huge. If I went to dinner with Corbin or saw a friend, I’d be convinced things are looking up. I would share just that, and the following day I'd be in a full flare that lasts two months. 

Now 5 years later I still get flare ups but they no longer last months, and they are less intense. I am able to have a part time job as a pilates instructor. I workout, travel, hang out with friends and live life somewhat normally. 

That being said i am still sick. I am chronically ill and that's for life. I will never be 100% but 5 years ago I never thought I could get to where i'm at now. I have made huge strides in my health and life and i am proud and grateful every single day because of it. My illness has made me appreciate life and see it in a new perspective that would have never been possible without it. Those of us with a chronic illness, disabilities or otherwise, have a lot more limitations but we also experience life more deeply because we have experienced losing our livelihood. 

I share this story of mine, not for pity, or attention, which is a common way people with disabilities or invisible illnesses get shamed by society and become the reason we don't use our voice.

I share because its important we speak up, so we can create awareness, and hopefully spark new research, medicines and treatments. In order to create a more filling life with less pain and suffering for those with illnesses so frequently overlooked and left behind.

I created this blog to share ways I have learned to live and travel. I also hope this becomes a place of community and resources for those of us with a chronic illness. 

I hope you enjoy and follow along as I share stories, tips and embark on my journey to living my dreams even with limitations.