A Body & A Life Not Mine

I feel like I'm currently living in a body that isn't mine, living a life maybe meant for someone else. This truly can't be why I was put on this earth.

Another hospital stay, this one the longest yet. I've been here just over 4 weeks and still counting. There is no anticipated discharge date. The doctors were initially concerned that I was dehydrated so they pumped me full of fluids but my body didn't know what to do with it and it was all displaced elsewhere - something they call third spacing. A normal body would filter the fluid through the kidneys and void it, but not mine. I've gained over 20kgs (yes, kgs) since I arrived just from fluid retention and I can't move my legs on my own. There is so much built up fluid in my legs and abdomen that I need someone to help me get in and out of bed just so I can use the washroom. I actually look fully pregnant and the pressure of it makes it difficult to breathe and eat. I've had to have a feed tube inserted in my nose just to get me some sort of nutrition because my body was rejecting everything. It rejected even that. Going from being fiercely independent to relying on people to help me with the most basic of tasks has been rough. I thought I would still be able to do some of the more private tasks on my own, but that has since proven untrue. Things you think you'll keep doing to hold on to that last bit of dignity you have get ripped away quite easily when you can't do for yourself what you thought you could.

The doctors are having a hard time figuring out what's wrong with me. I was recently told when I was admitted here, I was actually the sickest patient in the whole unit - a scary thought considering a lady two doors down from me is waiting to die and is only here to keep comfortable. The most brilliant of minds from many departments have all come together and had regular round tables about me and what might be causing me to be so ill. Daily, they tell me I'm a mystery. Meanwhile, I sit and wait in total discomfort for something, anything, to bring me any kind of relief. I sat here for two weeks, test after test, being poked and prodded in every place imaginable, only to be told everything is negative or normal. I've had more blood and platelet transfusions than I can keep up with anymore (thank you blood donors, you're truly superstars in my eyes).

Don't get me wrong, there has been more done for me this time around than any other hospital stay I've had. They've gone above and beyond as far as ideas for testing just in case it was something so small. They've done a really great job and they have all been beautiful and amazingly compassionate people but I just want to be home... I'm mentally, emotionally and physically exhausted.

I sleep any chance I get, my only escape from the discomfort that is my current existence. I value the small visits I get with my family but I'm so uncomfortable with my appearance right now, I barely recognize myself, that I'm still not ready for outside visitors. I know it would be good for my state of mind to see people but I just don't have the energy. I can barely text my family back when they're looking for updates. I fall asleep in front of them while they're here visiting sometimes. It's been a really rough and bumpy ride.

I dread that I'll have to once again go home and relearn how to use my own body. That I'll need to build strength just to get myself out of the washroom, up the stairs, into and out of my own bed. At the hospital, I can at least push a magic button and someone comes to my aid. At home, I'm not so fortunate. After past visits, I get home and end up creating a fortress of 'might need' items around me before my boyfriend goes to work just in case - water, snacks, tissue, things to do. It's tough fairing it alone when you're so used to having the help. It's beyond frustrating going from being completely able bodied to so very dependant in just a few short weeks. I sleep as much as I can at home as well, not only to try and heal but to pass the days away a little faster to try and get me closer to being "normal" again.

This whole ordeal has left me questioning things about my life as well. This is likely going to be the most raw and open post I've made yet but it's been weighing heavily on me for some time. This illness has already taken the better of two years of my life. I've missed birthdays - my own included - family celebrations, I couldn't even see my Nana at her last birthday party or say goodbye before she passed away. I feel it's stolen so much precious time and valuable memories from me.

It's left me wondering if I'll ever be able to have children. Will I ever be able to get pregnant? If yes, will I be able to withstand the possibility of being in constant pain while growing a human being inside of me? If I have a successful pregnancy, am I going to be able to hold my own child when needed or will there be too much pain? Could I potentially pass this down to my own offspring? The guilt alone in that would eat me alive. I know I should be optimistic but these are potential realities that I may have to one day face. It's hard thinking that I may not be able to play with my own kids some days because my body has other plans for me. I don't want to have to always rely on others to get me through the most basic of days. I am so damn lucky I have the most amazing support system but there's still something to be said about being able to take care of things on your own.

I try and stay as positive as I can with all the negative already going on in the world but it's been more and more difficult to find that sparkly lining I value so much. My dad tells me I'm one of the strongest people he knows, and maybe I am. But sitting helpless in a hospital bed, relying on people for everything doesn't help a person feel strong in any sort of capacity. I do appreciate that I've endured things most people will never have to experience in their lifetime but why does it feel like I have to go through these same crappy circumstances time and time again? Why can't I just enjoy my life like everyone else?

I realize these hard times are going to make me appreciate the great times that much more, but in the moment it's difficult to see that light at the end of the tunnel. I just want to be better. I just want to be normal, whatever that means. I just want to be able to pick up and go without consequence, without worrying if I'll be ok. Or if there are satisfactory facilities available to me in case something were to happen. I just want to be able to live life without overthinking it.

Normally, I'm the one trying to spread sparkle but I could sure use a little from everyone else to get me through this. I've mustered up as much of my own as I could so hopefully you have a little extra to spare.