Tag Archives for Invisible Illness

No Fire In My Legs

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…

 

Alicia Keys – Girl On Fire

 

Breaking My Unplanned Break

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

 

I Have To Come Clean

Yesterday, I asked my friend U for a rain check on plans we made to go see a movie. It was the second time in the space of a month; but I had to. This time it was because my feet were swollen to the point of not being able to wear shoes – not even flip-flops – again. The previous opt-out was a few weeks earlier after I committed, with the best intentions, to attend one of her art exhibits. I had an appointment earlier that same day and experience has taught me that my body can’t handle more than one event or activity for a few hours in a day; any more than that will be followed by days, if not weeks, of increased pain.

Sadly, in the nearly five years since my illness started, I’ve lost count of how many times I’ve asked U to reschedule or canceled our plans altogether. Similarly, I’ve lost count of how many times I’ve rescheduled or canceled plans with other friends and family members; some of whom no longer bother making the effort to do things with me. Mind you, the arrival of my illness alone was enough to cause some people to disappear from my life early on. As I got ready to take a shower late last night, it dawned on me as I sat naked in my bathroom, that at the rate I’m going, I won’t have many friends left to reschedule or cancel plans with if I don’t come clean about the state of my life. So here I am, writing what amounts to an open letter to all my friends and my family members about what my version of living with a chronic illness looks like.

I know I talk about feeling pain, but maybe I still haven’t explained it clearly: This illness causes me to feel high levels of pain every minute of every day in almost every part of my body below my belly button. To cope with this pain I take large quantities of high-dose opioid-based pain medications (narcotics) six times each day. Even in these large doses, these opioid-based medications don’t come close to stopping the pain. However, without them, moving around or walking upright would be near impossible feats for me to accomplish. Unfortunately, because of these pain medications, I also have added medical complications from expected side effects and other symptoms – like the swelling in my legs and feet – that continue to defy explanation.

The truth is: nothing I’ve been prescribed controls my pain. In fact, my doctors can’t explain why – after multiple surgeries and many treatments that failed – I still have such high levels of pain nearly five years after this all started. Lucky for me, these doctors are all still invested in trying to figure it out. Although, that’s little comfort to me at times; especially when the pain flares up beyond a level where anyone should be expected to cope.

As a result, all I can do is manage my life in a way that minimizes pain flare-ups and the worsening of any of the side effects. That’s what I’ve been trying to do – and learn how to do better – with the different programs and treatments I’ve been participating in these last couple of years. The problem, I’m only now realizing, is that I haven’t been communicating with all of you what I need to do to manage things and take better care of myself or how much help I need to do it. The latter part of that statement is probably the most important: I haven’t told you that I need help taking care of myself.

Since my focus has been on trying not to be a bother or not making you worry about me, I haven’t been telling you the truth. Most days – even when I sound upbeat during phone calls or I add smiley-face emojis to text messages – I’M IN AGONY. Because of the pain I may not have slept more than a few hours in the previous 24 hours; I may not have taken a shower that day or the day before. I may not have cooked a proper meal in days, I may have a pile of dirty dishes in my kitchen sink or piles of clothes on my bed that I need to put away, and I may have put off doing my laundry again so the baskets continue to fill.

With all of this, and probably more, going undone because I’m in pain, when I ask for a rain check or cancel plans, it’s for the same reason: The pain or other symptoms are at levels I can’t cope with. Or I’m trying to manage them so they don’t reach levels where I won’t be able to move for days, or worse case land me in the hospital Emergency Room where all they can do for me is add extra doses to the pain medications I’m already taking.

Rescheduling or canceling is never because I don’t share the same desire to spend time with each of you. It’s never because I don’t respect your time or value the effort you go to when you plan something for us to do together. The relationships I have with each of you is unique, but that doesn’t mean I don’t owe each of you the same degree of respect and honesty. I don’t know if I’ve shared too much or not enough, but I do know that this is the truth about what I’m living with and I hope each of you will continue to stick around, so we can make more plans I might need rain checks for…