Tag Archives for life

First Blogiversary Reflections and Gratitude

When I started this blog a year ago, it was because I didn’t feel I was being heard in real life; especially by the doctors trying to figure out the cause of my illness. Filling the pages of a journal felt flat and empty. Although I was purging my emotions and thoughts in writing, it didn’t fulfill the need I had to be heard. I needed a place to speak uncensored and honestly about everything that had happened and what continues to happen to me because of my illness without worrying about judgement from friends and family. I created this space with the hope that someone would read my words and truly hear what I have to say, and maybe even learn from my experiences. I had no idea that this blog would lead to so many incredible things.

Writing here became a complement to my therapy sessions. I’m fortunate to have a great mental health support team while I make my way through the difficulties imposed on my life by illness and its unavoidable isolation. The talk therapy sessions with my therapist, which are mostly virtual now, help me to get out of my head and see what’s happening to me through the compassionate eyes of another person for a few hours each month. My therapist also helps me find positive ways to cope with my unending pain and overwhelming low, blue periods. However, writing here gives me an immediate outlet to articulate my thoughts and feelings. I’m connected to people who sympathize and want to extend their support, and people who truly empathize because they have lived through or are living with physical or emotional pain similar to mine.

Because of this blog, the support system I have now extends beyond my family and friends. The community I connect to stretches around the globe. It amazes me that each time I write here my words are reaching people in parts of the world to which I’ve never traveled. I have the opportunity to share my life experiences and be inspired by the lives of so many others living with chronic illnesses. Even though it might expose their vulnerabilities, people who connect to this space share their knowledge about living with chronic pain, medications, medical treatments, and self-advocacy in a world where doctors don’t always give the lived experiences of patients enough credit. This community makes me feel less alone and isolated, and I hope I do the same for some of them.

Others have helped to reawaken my creativity when the frustration I felt because of the haze of pain medications was at its height. I found muses here that brought poetry writing back to me with questions they ask in their lives about trust, truth, and change – among other things. I even found beautiful music that helps in moments when I need to calm my mind and body, and feel grounded so I can create my own art in the art/gratitude journal I never would have started without this blog. There are so many creative thoughts, images, and ideas exchanged in this community that it’s possible to learn something new every day.

Looking back at this year of writing, I can see how I managed to hold myself together. More importantly, I can read about the help and support I received here and in real life, and I’m grateful for all of it.

 

Elvis Costello & The Attractions – Every Day I Write The Book

Gratitude and Creativity: A Year Of Banking Positives

I’ve been reflecting on the year that passed, trying to identify the best thing(s) that happened. Unlike other years, this time it wasn’t too difficult to pinpoint what I should put at the top of my list. Flipping through my memories, a few things, and people kept coming back to the surface. Much of them related to my illness and all that has happened, or hasn’t, because of it. Surprisingly, there were more good things than bad that filled my thoughts, which puts me in a positive frame of mind as this new year unfolds.

The best thing that happened to me last year, by far, was having a new surgeon assigned to my case. If I wasn’t sent to him for a second opinion, I’d probably still be sitting here with a growth in my pelvis waiting to see what might happen to it – would it grow larger or mutate into something cancerous as some speculated – and what would happen to the rest of me as a result. It took one meeting with this surgeon for things to take a more positive tone and move forward more rapidly than they had at any point since the start of my illness. Within weeks of his first assessment, I had pre-admission tests scheduled and my surgery date was set. I had surgery last August, close to the second anniversary of the frightening start of my illness, and although my recovery hasn’t been smooth, the surgical outcomes were better than anyone could have expected because the growth removed from my pelvis was benign.

The physical pain that growth introduced to my life was the catalyst for some of the other good things that are now part of my life. Because of all the pain medications I take to function daily, I had to find new ways to express myself. I started by writing a journal that focused on my pain and how I was coping with it. That journal eventually became this blog, but I soon realized I needed more to fill my life: I needed to reconnect with my creativity. I found so many creative ideas and tools online. I started an art/gratitude journal, which made me realize that who I’ve always been isn’t gone, although the fog of pain medications sometimes masks it. That spark of self-recognition helped me start writing poetry again and made me feel less disconnected and dulled. I’m also teaching myself how to draw; this came about purely by accident when I found Zentangle, which has the added benefit of being a meditative practice. My life is full of colour now – I literally have coloured pencils, pens, markers, sketchbooks and paper all over my place – when I never imagined there could be room for anything creative with this illness and constant pain.

Life
Hope

Many of my relationships also changed and some became stronger because of my illness. At this point last year I felt alone and very isolated. The feeling of isolation shifted a bit when I started this blog and made connections with people living in situations similar to mine. From their stories, I learned how chronic pain and chronic illness could take a heavy toll on your relationships with friends and family and on your relationship with yourself. Articles and blog posts I read spoke of incredible loss and loneliness because people are afraid to share the truth about their circumstances or they had people turn their backs on them when they did share the truth. I had those fears about sharing and I did lose relationships with people who didn’t want to deal with what I’m living with, and I even had some family walk away from me. However, the people who encourage me to be honest about how I feel (physically and emotionally) and want me to ask them for help are incredible. People, who a few years ago I might have considered casual friends, are now some of my closest friends. Friends I’ve known for decades are now even closer and do whatever they can to support me and keep my spirits up when pain overwhelms me. The love from these friends and the family that stand by me makes me feel less afraid about being open and less isolated, even though I spend most of my days alone.

Chronic pain and illness continued to change my life in 2015. However, as I look back, most of the positive changes wouldn’t have happened without them. I never make New Year’s resolutions and I’m not going to change that now, but I am going to hope that my bank of positive experiences continues to grow.

 

How Do Some People Do It?

It’s been about two weeks since a significant pain flare up locked my body in its grip. I’ve been trying to block out my pain through numbing my mind by mindlessly watching a copious amount of movies (all six of the earlier Star Wars) and entire seasons of TV shows, while keeping my legs elevated as much as humanly possible on my couch; then sleeping when my body allowed. Roughly translated, that means sleeping when the pain exhausts me. I’ve also talked to as few people as possible, on the phone, or in person because it felt like talking required energy I didn’t have and added fuel to my pain. Fortunately, somewhere inside me the same question kept surfacing: How do some people do it?

How do people with unbeatable diagnoses and/or prognoses beat them? Over the years, I’ve seen countless stories about gravely ill people who inexplicably recover from an illness, for which there is no cure; recover from accidents, when the odds were heavily stacked against them; or learn to walk again after breaking their spines. How do they do it? Are there people blessed with superhuman healing? Are they resilient in a way that science is yet unable to explain and capture in a treatment or deliver in a pill? What is it about a person that makes them so tough they can fight through the worst life throws at them?

I want to know. I need to know because I want to be one of these people. I want the strength to heal my pain, even if it initially causes me more pain and because I want to get better like these people worked so hard to do. This illness that still causes my doctors confusion more than two years after it started and four months after major abdominal surgery, well, I want to figure out how to beat it – with or without a positive prognosis. I wish I knew exactly what I’m fighting to better understand the options I can apply and how to find more if the first set don’t work. But I don’t know; yet, I don’t want to limit myself to what my doctors tell me I can or cannot do to heal. I don’t want to limit my life at all.

I don’t know how other people do it, but I want to beat the odds that seem so highly stacked against me, even if it means approaching each day as if it was the biggest battle of my life. I don’t want to spend more two-week spans feeling helpless or that I’m trapped by pain. I’ve lost a lot because of this illness, but I know it’s time to figure out how to regain fully at least one of the things not completely lost: my fighting spirit. I’ve had to fight for everything my entire life, but I lose a little more of that spirit each week I spend lying on my back.

 

Bon Jovi – It’s My Life