I’ve written often about the pain in my legs feeling like fire when it gets unbearably intense. Today the pain feels manageable, but I’m excited to share about another kind of fire. For the first time in my life – without anyone’s help – I successfully lit a fire in a wood fireplace. That may seem like no big deal for a person who lives in a house with a wood fireplace or anyone who goes camping regularly; but I’m a city girl who never goes camping and only ever has to flip a switch to light a gas fireplace.
I won’t lie, it took quite a few tries to get the kindling to stay lit until it became a fully crackling fire. When the flames finally started shooting, I felt a great sense of accomplishment.
No Fire In My Legs – December 2018
No Fire In My Legs – December 2018
Interestingly, I’m away from home and before leaving on my trip I was stressed about the very real possibility of experiencing a fiery pain flare up. Nevertheless, here I am today, after traveling thousands of miles and for the first time in a long time, the fire I’m feeling is exactly where it should be…
Last winter, I took a trip. As much as it was a trip to get away from the frigid cold in the middle of winter to enjoy some tropical sunshine, sandy beaches, and saltwater; it was also a trip to test how well I can handle long-distance travel by air with my ongoing health issues. Overall, I handled it fairly well, so I’m taking another trip.
Even though things went well last year, I’m still somewhat anxious about getting on a plane again. This flight will be eight hours long, which is double the length of the last one; and I will travel 5,700 kilometres (3,550 miles) and cross five time zones over the Atlantic Ocean. Until I land and adjust to the time difference, I don’t think I’ll be able to assess the extent to which I’m affected. During the flight I took last year, my pain wasn’t significantly aggravated, but sitting in an airplane seat for eight hours this time, while feeling intense pain might be different. Add to that the fact that I’ve always been a bit of a nervous flyer and I have to admit that I’m not really looking forward to getting up in the air again.
However, my anxiety doesn’t end with the thought of getting on the plane and sitting through an eight-hour flight. I’m also anxious because I’ll be so far away from home, my doctors, and everything else familiar. During this trip, I’ll be staying with friends I haven’t seen since my last trip across the pond about six years ago. Although my friends are aware that I’m ill, they haven’t seen how the pain and accompanying side effects affect my daily life. I’m already worried about how I’ll cope and how they might react if – or more likely when – I have a pain flare up while I’m staying with them.
I know I shouldn’t expend the energy worrying about “what ifs?” but it’s hard after living with constant pain for this long and knowing that a flare up is never far off. It’s also hard not to worry about how others will react when they see you for the first time struggling to walk or unable to move at all because of pain. It’s hard not to worry about how greatly affected I’ll be by jet lag, especially because I already have a lot of difficulty with sleep and I never sleep well on planes.
It’s hard not to worry about how I’ll cope traveling around a city where public transit is widely used, when I’ve avoided using public transit where I live since becoming ill: how will I handle the sudden stops and starts of the trains or not being able to find a free seat while traveling on one? It’s hard not to worry about how I’ll explain needing to rest for a few days after going out for just a few hours. There are a lot more things I’m worried I’ll have to deal with and explain, but I suppose I’ll cross those bridges when I get to them.
Nevertheless, before I even get to the other side of the pond, there are some things I did in preparation for last year’s trip that I will repeat for this one. The main thing I did last year that was extremely helpful was arranging assistance to get to and from the plane. When I get to the airport, the airline will arrange for someone to take me from the check in counter to the boarding gate by wheelchair and/or golf cart. Then when passengers start to board the plane, I will be among the first to board with assistance from the flight crew. When I arrive at my destination, the same process will happen again. There will be someone waiting for me with a wheelchair when I leave the plane who will help me through customs to the baggage carousel and they will also help me collect my suitcase. Doing this last year helped me conserve a lot of energy and probably went a long way to ensuring that I got off to a relatively good start on my trip.
Knowing that I will have this assistance at the airports goes a long way to help me maintain peace of mind. However, I’m still anxious about the laundry list of things that need to be done before I even get there…
I took a break from writing for what should have been a few weeks. The weeks have ballooned into months. Not because I planned it but because it was becoming difficult to parse through what I need to focus on to keep myself healthy(ish) and sane while living with chronic pain; and what I want to do, to stay engaged with the world while keeping myself above any potential downward spiral into depression.
For the past few weeks, I’ve been trying to restart what had become my daily mindful, creative practice that included writing, but I’m still struggling. I had hoped that eliminating the pressure of scheduled time in front of my laptop keyboard and mound of art supplies would somehow recharge me and reignite my enthusiasm to share what happens in my life involving my illness, treatments, and coping methods. However, it’s possible that the opposite happened. Stepping away for so long might have further rusted my ability to concentrate and coherently string words together; or it could simply be – as it was when I started my break – that it continues to grow more difficult to find a comfortable position to sit in for long enough to engage my creativity and to record my thoughts.
Thankfully, my break did not extend to creating in my art journals/sketchbooks. In the time I’ve been away, while drawing and doodling, I’ve been inspired to handwrite poetry that doesn’t feel forced for the sake of having content for my blog. I’ve also scribbled thoughts about all that has happened in the margins of my art journal/sketchbook pages. My hope is that some of these scribbled thoughts might make their way into or become full posts in the near future.
In the time I’ve been away from writing, I crossed what to me is a significant milestone: the fifth year of living with my illness, its growing list of side effects and continual pain. Since all of this started five years ago, I’ve grown intimately familiar with the struggle of maintaining focus and concentration – on pretty much everything – as I push myself through each day physically and emotionally with some days being monumentally worse than others are. Strangely, most days, I feel numb at the same time that my body is overwhelmed by intense and sometimes unbearable pain. I don’t know if that will make sense to anyone else: Feeling nothing, while feeling everything all at once.
I may not have recharged during this break, but I’ve come to realize that whether I’m engaged with my creative practice or not, I’ve managed to make it this far with my illness; and, I suppose, I’ll continue to move forward whether I write about it daily or not.
Breaking My Unplanned Break Outline – November 2018
Breaking My Unplanned Break Filled – November 2018
My Small Surrenders 