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Happy Day

In recent years, the holiday season has been a difficult time for me. Whether it’s been due to daily physical pain, multiple visits to the hospital emergency room to get medical help to cope with my pain flare-ups, missing holiday events with friends, or not being able to attend family dinners; the past few years have been hard.

However, this year, regardless of where I end up, I’ve decided that I’m going to have a happy day. It won’t matter if the only way I can connect with my friends and family is virtually through text messages, phone calls, and video chats from my bed or a bed in the emergency room. If I can’t make it to dinner because my pain is too overwhelming, I won’t feel conflicted or guilty because I decide to stay home and give my body the rest it needs. If I decide to go to my family’s dinner today and feel sore and exhausted after the drive there, I will give myself permission to find a quiet place to rest and recharge.

Whatever the day brings, the important thing for me is to do what I need to take care of myself. That is my gift to myself today: a day free of pressure, anxiety, and self-doubt. I hope that everyone living with a chronic illness has the freedom to make their own choices today – and every day – so they don’t have unnecessary stress and anxiety piled on top of lives that are already a struggle.

I hope that just as I am determined to, that everyone will have a happy day today.

 

Happy Day

 

Adrift

Sometimes I feel as if I’m floating through my life without any control or a meaningful destination or goal. I haven’t always felt this way, of course, but because I am housebound most days and time passes in the blink of an eye and I can’t point to what I’ve accomplished in recent months – years actually – it’s hard not to feel adrift. It’s difficult not to feel rudderless and without direction, as I pass from one painful hour to the next. Even when I do things to feel busy, to occupy all the passing hours, it’s hard not to compare this current life to the life I knew before; and, I wonder when I’ll stop the comparison and just accept things as they are and just be.

I know from experience floating in blue-green waters of oceans and seas, that there is nothing wrong with spending time, days even, letting my body float and drift. However, those days were numbered, planned, and chosen specifically for me to do nothing else. Those were days that I earned and payed for with hours upon hours of work. They were handfuls of isolated days within a year or more. When I could leave behind the demands on my time as I disconnected from the world and plunged into the peaceful sound of warm waves kissing beaches of powdery sand or sometimes pebbly shores of stones worn smooth by the never-ceasing waves.

It feels different, doing nothing now. As if, I have not earned this time. This time my body didn’t plan or ask for. This time that blurs one day into the next. Now, as I float over different waves, waves that are not peaceful, warm, or calm. Waves that batter my body, instead of keeping me buoyed under cloudless bright skies. I feel as though I need to do something every day to earn this time; and each day that passes without me producing or completing something makes me feel indebted to some thing in the universe that I can’t see, but I can feel hovering over me. A thing waiting for payment as my pain-filled body is carried farther adrift.

I know these feelings aren’t truthful. I know these thoughts surface because I still haven’t, after all this time, fully come to terms with the reality that doing nothing most days is okay because it’s all I can do. I know that if a friend or family member was living through this illness and having these thoughts and feelings, I would tell them they were being too hard on themselves. Yet, when the challenge is our own, it’s hard to show ourselves the same compassion we would extend to another. It’s easy to know the truth but it’s harder to accept it and live accordingly.

It amazes me how difficult it is to feel comfortable doing nothing, especially when we know it’s the best thing for our bodies. I don’t know when I will accept it. When I will truly believe there is nothing wrong with doing nothing because my body needs rest or it is racked with too much pain. However, in the meantime, I feel that imagining the sensation of my body floating on waves, free and weightless, may not be a bad image to hold on to when I think of myself adrift and without direction.

Adrift - Sand Swirl - November 2016

To Date (Or Not) With Chronic Pain

Some months ago, a friend I’ve known since junior high school had a very pointed conversation with me about dating and intimate relationships. He caught me off guard with his questions about my romantic life or lack of one. He was curious to know why, since becoming ill just over three years ago, I haven’t dated at all. His concern was that I am allowing my illness to define me and overtake my entire life. He pointed out that I am more than my illness and pain and that people with more severe disabilities and/or debilitating health conditions still manage to engage in fulfilling intimate relationships.

In our conversation, I told him I couldn’t get into a relationship because I was focusing on my health and all I need to do to restore it. In return, he asked how long I planned to focus on my health alone since almost three years had already passed. Would five years be enough or maybe ten? What would happen if I let all those years pass without any improvement to my health and never taking the time to explore the possibilities of sharing my life, even with an illness, with someone?

Interestingly, he didn’t talk about what I might gain from dating or being in a long-term relationship. He talked instead about what I have to offer. It was embarrassing to hear him describe me so positively, especially at a time when I don’t usually feel attractive, engaging, and bright – the brightness of my intellect is often dulled by pain and pain medications – nor do I feel particularly sexy. Feeling sexy is hard when pajamas and sweats have become my standard wardrobe staples.

Nonetheless, I promised him I would think about all he had said to me. And think I did. The first thing I thought about was the person I had started dating a couple of weeks before becoming ill and how uncomfortable I was being so vulnerable with someone I’d known for barely two weeks. As he called the ambulance, stayed with me in the emergency room, and visited me practically every day for the first week of my hospital stay, I was grateful for his support and kindness. However, having someone I hardly knew see me that way was overwhelming in the context of so much unknown. It didn’t feel right to move forward with a relationship. It felt unfair to burden him with that level of responsibility when we didn’t even know each other’s favourite colour or foods.

Thinking about that conversation with my friend led me to deciding I would give online dating a chance. I set up a profile detailing my interests and what I look for in a partner, I posted recent pictures of myself where I look happy and healthy, and then I waited for interested prospects to contact me. I wait instead of initiating contact with anyone who piques my interest because I’m still uncertain about how to explain my current life circumstances. The thought of telling a potential partner about my daily struggle with pain still causes me great anxiety. Although my hope is that those feelings will soon change.

However, being online and exchanging written messages about my interests and who I am, as a lead up to deciding whether to meet in person, has been helpful. It gives me a chance to sort through and figure out who, of all those I communicate with, might be the type of person who would not be phased by what is happening in my life now. It’s also a chance to rediscover the part of myself I’ve neglected because of my pain and better understand how I’ve changed in recent years. Being online also provides a way for me to manage the pace of the process, while making sure I don’t feel too overwhelmed.

I have to admit that, with my friend’s urging, I am opening myself up to the possibilities of what my life could be like, even if I’m never pain-free. I know that not everyone I meet will be as compassionate and open to my situation as the friend I’ve known since I was a child, but now I’m hopeful for the chance to meet someone who is.

Red (Maybe) Tulips Sketch