Pressure Is Off

I start this blog from bed. This is the third day I haven't gotten into my wheelchair because of a pressure sore from the unforgivable crime of sitting in my wheelchair. When a paralyzed person such as myself gets a pressure ulcer on their back side (BUTT) they immediately need to get their body into bed and they need to stay there while keeping pressure off the area literally until it heals which could take anywhere between one week to many many months.

I have the personality type to entertain myself with all sorts of hobbies so boredom rarely gets to me but I would really prefer to be up and about in my wheelchair and honestly, as much as people think lying in bed all day sounds wonderful, if you're paralyzed it's really no walk in the park (pun intended). In fact, it can be downright uncomfortable and even painful. Because I'm paralyzed, I cannot roll over in bed or get into a comfortable foetal position on my own so I require help from my care attendants to physically position me off my back onto my side with multiple positional pillows so my body is relieving all pressure off of my bottom. And here I will be in this bed indefinitely… How poetic… but how did this all start?

About a year ago I went to get some kidney stones removed because I was told by doctors that they needed to be removed. Reluctantly, I went to get the surgery. My biggest concern was that the surgeon and surgical team would be negligent and not protect my skin when I was on the operating table. I explained to the surgical team that my skin needed to be protected because I was concerned that I was going to get an injury and then end up with a pressure sore. They agreed. After surgery when I got home we were looking at my bottom and particularly the bones that I sit on which with my horror revealed that the surgical team took little to no effort to protect me as there were numerous dark marks on my butt. This was the beginning of a long devastating, scenario that forever changed the way I live my life. Because these "professional" doctors and nurses couldn't take the time to protect me while I was intubated and subdued for surgery I have spent over a year trying to heal and maintain the skin that was damaged. It wasn't a big pressure sore at all but it was in the worst place on my body as the bones on my bottom have always been very sharp and the skin in that area has literally no fat.

In the nearly 15 years I've been a quadriplegic up to this post surgical point I have never had a pressure sore. I was very proud of the fact that I had gone so long in my wheelchair without one. I honestly never understood why or how quads would end up with them. I was extremely diligent and always took the time to make sure that everything was OK down there. I was always taking pictures of my butt to make sure that the pain I was feeling every day from just sitting in my wheelchair wasn't coming from a pressure sore. Yeah about that… I feel pain every day near my rectum. It's insulting. It's like I'm Annie Lennox but instead of walking I feel like I am sitting on broken glass. Sitting on broken glass all day!

It really does make my living experience significantly more miserable than it would be if I wasn't plagued with fear inducing pain. Frankly, it's all consuming. People have told me not to focus on it but I would reckon it is the equivalent to ignoring someone putting a cigarette out on your skin. If you have pain like that and it never stops yet it is something you can ignore I need you to share your methods with me because I haven't managed to figure that out yet it can be kind of depressing.

So going back to my post kidney stone surgery, there I was stuck in bed for what I thought would be maybe a week while I recovered from another trauma brought on by impatient hospital staff who obviously couldn't put my needs in front of expediency and efficiency so they could rush me through and get to the next bag of flesh they needed to operate on that day. But that week turned into two weeks which then turned into four weeks, then months. On a couple of occasions, just as things were getting better I would get turned or repositioned in bed and somehow all of the new fresh skin that I just spent weeks in bed healing would get sheared off from repositioning or dragging a sheet over the spot which would set me back weeks essentially starting the whole process over again. Then four more weeks turned into four more months and to make a long story short, I spent my whole summer and the following winter in bed because of hospital staff negligence and what really gets me is that the people who are responsible have no idea that I lost nearly a year of my life because they couldn't put down a piece of fabric on the operating table to avoid this mess.

Even over a year later now that it is completely healed I still have to bandage it every single day because the skin degradation is enough that it is paper thin and fragile. And if that wasn't bad enough, to add icing on the cake I just realized I have a new opening on my other butt cheek really close to my rectum so I have that exciting news to contend with physically and emotionally as well. I don't know how or why this new one started but this means I'm going to be in bed tending to my new full-time job which is lying around like a starving, orphaned, baby, beached whale, wasting government money, and healing my butt. This wasn't something I had dreamed about doing when my teachers asked me what I wanted to be when I grew up. But this is the life I've been given so I need to try to make the best of it and carry on with the best attitude I can muster so I don't bring down all the people who love and care for me.

This is also a big struggle for me. Trying to keep my mind from depression during times like this. It's hard not to want to vent all of my grievances to everyone who visits or works with me. I get angry about all of it. But I have to fight my desires to want to unload on people who will listen because I don't want to push them away with my complaining over all of my troubles.

This kind of thing just requires a level of patience that comes to no one naturally. People get stuck in traffic for half a minute and they lose their crap and they start calling for the death of the other drivers around them. I wish I could get stuck in traffic over having to deal with this but wishing does nothing to affect reality other than adding another level of disappointment.

So my job, stay in bed, stay positive, and be patient. I suppose the take away from all of this is that my lack of trust that a doctor understands what I am communicating to them has once again been warranted which brings me no pleasure and that despite how dismal everything is and looks, remaining positive isn't only good for me but it's really good for the people around me (insert photo of me with funny face).

Thanks for reading!