Today, I cried. A lot. I know that tapering off prednisone can make a person very irritable and weepy, but I can't put it all down to my medicine.
I cried because I want so badly to go home, but there's no home I can go back to. I cried because this means I'm technically homeless. I cried because I'm going to wake up in the hospital tomorrow, and the next day, and the next, and we don't know when I'm finally going to wake up somewhere else. I cried because the whole process of setting me up in a new place with everything I need is maddeningly slow, and there are few outlets for frustration in the hospital. I cried because I've had to hold back my anger, my frustration, my sorrow for nearly half a year just so that I don't snap at nurses or loved ones. I cried because there are millions of other people in similarly shitty situations, and that breaks my heart.
I cried because I am constantly fighting a thousand small battles with my health and my situation, and there is no one here who can really understand what that's like. I don't need someone to cheer me up when I cry; I need someone who will just let me cry. I cry because there is so much outside of my control that I still have to try to fight against. My body is still at war with itself, and I have to fight the urge to blame myself when my CK levels rise. I have to remind myself that it's not my fault that I've gotten sick while in the hospital, that my body is doing the best it can with a compromised immune system to protect me. I have to tell myself that it's not my fault my body is like this, and that it's not broken. There is nothing "wrong" with me; I'm just ill, and might be ill for the rest of my life.
For those of you who can visit me, please don't worry about these feelings. They are just feelings, and all feelings come and go like the wind. Sometimes I'm sad, and sometimes I'm happy. Going through different emotions, even the ones we don't like, is just part of being human; I am a human going through a stressful situation, so it's only natural that I'm going to be frustrated and a bit depressed sometimes. Everything is going to be okay, and I have proof of that.
My CK rose to 1000 again last week, but it's back to 917 as of yesterday. I've also found out that I am going to be given a loaner power chair that I'll be able to take with me when I get discharged; we just have to wait for it to be repaired and delivered, then we pay a flat fee of $120 to borrow it. We've also begun looking for an apartment so that I won't be homeless for much longer, and it turns out that there are quite a few options for wheelchair users in this city. As my strength and abilities come back, even more options will open up. I don't expect to be able to handle stairs anytime soon, but being able to stand and take a few steps will make a world of difference. Until then, there are still skills I can learn and perfect, and I can expand my range of motion with simple stretches every day.
I have absolute faith that everything will fall into place, and that I am, despite my frustration, where I need to be in my life right now.
Tuesday, 30 September 2014
Friday, 26 September 2014
Firsts
Everyone remembers their important firsts: their first crush, their first awkward kiss (please tell me it was kind of awkward for everyone; I don't want to be alone in this!), their first car, their first home they could really call their own. They're milestones in our lives, cultural markers of "before" and "after." You can never really go back to where you were once you've passed such a milestone. I've passed several of the shared social milestones myself, as well as a few only members of the disabled community share.
My first time sitting in a chair of any sort after being hospitalized was an emotional event I got to share with my mother. It was only a Broda transport chair with no means of self-propelling, and I wasn't sitting up straighgt, but I still cried from sheer joy. I was in a chair! After so many weeks of being confined to a bed, I was sitting! I could finally be permitted to see things that weren't directly in front of or beside the bed! Because that chair had wheels, I got to experience another first soon after the thrill of sitting up: going outside.
I remember it being a sunny day, warm but not hot. There was a bit of a breeze, just strong enough to play with a person's hair and rustle the lush leaves of the trees shading the sidewalks. When the automatic doors of the hospital slid back, the fresh air hit me like the first breath of life itself. It brought with all kinds of new smells that had been lost to me inside the building: fresh grass, trees, car exhaust, even a little rain from the night before. I could hear sparrows chirping in the trees in the courtyard, singing their songs to each other as they for magpies and dropped tidbits. Pieces of conversation kept drifting in and out of my range of hearing, their tone drastically different from the ones I often overheard inside: people were laughing, catching up, just visiting out here. In some cases, it was only a medical bracelet that gave away someone's status as a patient.
Mom wheeled me to a shady spot under a tree while I was taking in everything and gave me a frozen lemonade. Sitting there with my mother and my cold drink, feeling the elements on my skin, watching the people and the birds around us...sure, I still looked like hell, and my myopathy was still raging inside me even as my body knitted itself back together, but that moment felt like heaven.
My first bath in the hospital was an unexpected surprise. I'd mentioned that my hands were starting to smell weird from only being washed with hand sanitizer, and one of the nursing attendants (hereafter referred to as NA's) asked if I'd had a bath there. When I said "No," she immediately scheduled me for one the next day. I was taken right after breakfast; the mechanism they used to take me to the bath room was like a giant, white and blue forklift that picks up the patient and lowers them into the tub. Feeling that warm water closing over me, feeling my hair and skin finally being properly cleansed and scrubbed after two weeks of sponge baths...heaven again.
My first time sitting on the edge of the bed scared my physiotherapists a little. My back was still so stiff that I couldn't stay up on my own (as in, I couldn't sit at 90 degrees, so I'd just fall backwards), so one of them sat behind me while the other pulled me forward. I cried. Not from the pain of having my back and hips stretched; that kind of pain doesn't make me cry. No, these were tears of joy again. I was sitting! Not particularly well, but damn it, those were my feet on the floor! My therapists thought they were hurting me, but I assured them that I was fine and wanted to stay up.
Today, I experienced another first: standing on my own two feet after almost half a year of either sitting or laying down. I still need help to achieve this Herculean feat, but we did it despite my legs' screaming protests. They hadn't had to support any real weight in months, so I can forgive them for atrophying a bit. We managed, despite my weak muscles, to get me standing for 20 seconds. It may not seem like much, but that's the first 20 seconds of the next phase of my rehabilitation. Next thing we know, I'll be standing up completely on my own, and nothing on the top shelf will be safe from me anymore.
I feel I should end this particular post with a very brief summary of some of the things I'll be covering very soon: how I've been in and out of the ER because my immune system sucks, how our game plan has changed because I got too well, how important patient advocacy is, where we're at in terms of geting me the wheelchairs I need, what the housing situationg is, and more things I've learned as a person with a disability. Oh, and we're getting close to remission: my last two CK counts were 600 and 1000. It's gone up and down before, and an intense workout can raise your CK by 400 even when you're healthy, so we're not too worried about that little rise.
My first time sitting in a chair of any sort after being hospitalized was an emotional event I got to share with my mother. It was only a Broda transport chair with no means of self-propelling, and I wasn't sitting up straighgt, but I still cried from sheer joy. I was in a chair! After so many weeks of being confined to a bed, I was sitting! I could finally be permitted to see things that weren't directly in front of or beside the bed! Because that chair had wheels, I got to experience another first soon after the thrill of sitting up: going outside.
I remember it being a sunny day, warm but not hot. There was a bit of a breeze, just strong enough to play with a person's hair and rustle the lush leaves of the trees shading the sidewalks. When the automatic doors of the hospital slid back, the fresh air hit me like the first breath of life itself. It brought with all kinds of new smells that had been lost to me inside the building: fresh grass, trees, car exhaust, even a little rain from the night before. I could hear sparrows chirping in the trees in the courtyard, singing their songs to each other as they for magpies and dropped tidbits. Pieces of conversation kept drifting in and out of my range of hearing, their tone drastically different from the ones I often overheard inside: people were laughing, catching up, just visiting out here. In some cases, it was only a medical bracelet that gave away someone's status as a patient.
Mom wheeled me to a shady spot under a tree while I was taking in everything and gave me a frozen lemonade. Sitting there with my mother and my cold drink, feeling the elements on my skin, watching the people and the birds around us...sure, I still looked like hell, and my myopathy was still raging inside me even as my body knitted itself back together, but that moment felt like heaven.
My first bath in the hospital was an unexpected surprise. I'd mentioned that my hands were starting to smell weird from only being washed with hand sanitizer, and one of the nursing attendants (hereafter referred to as NA's) asked if I'd had a bath there. When I said "No," she immediately scheduled me for one the next day. I was taken right after breakfast; the mechanism they used to take me to the bath room was like a giant, white and blue forklift that picks up the patient and lowers them into the tub. Feeling that warm water closing over me, feeling my hair and skin finally being properly cleansed and scrubbed after two weeks of sponge baths...heaven again.
My first time sitting on the edge of the bed scared my physiotherapists a little. My back was still so stiff that I couldn't stay up on my own (as in, I couldn't sit at 90 degrees, so I'd just fall backwards), so one of them sat behind me while the other pulled me forward. I cried. Not from the pain of having my back and hips stretched; that kind of pain doesn't make me cry. No, these were tears of joy again. I was sitting! Not particularly well, but damn it, those were my feet on the floor! My therapists thought they were hurting me, but I assured them that I was fine and wanted to stay up.
Today, I experienced another first: standing on my own two feet after almost half a year of either sitting or laying down. I still need help to achieve this Herculean feat, but we did it despite my legs' screaming protests. They hadn't had to support any real weight in months, so I can forgive them for atrophying a bit. We managed, despite my weak muscles, to get me standing for 20 seconds. It may not seem like much, but that's the first 20 seconds of the next phase of my rehabilitation. Next thing we know, I'll be standing up completely on my own, and nothing on the top shelf will be safe from me anymore.
I feel I should end this particular post with a very brief summary of some of the things I'll be covering very soon: how I've been in and out of the ER because my immune system sucks, how our game plan has changed because I got too well, how important patient advocacy is, where we're at in terms of geting me the wheelchairs I need, what the housing situationg is, and more things I've learned as a person with a disability. Oh, and we're getting close to remission: my last two CK counts were 600 and 1000. It's gone up and down before, and an intense workout can raise your CK by 400 even when you're healthy, so we're not too worried about that little rise.
Subscribe to:
Comments (Atom)