I suffer from fibromyalgia, a disease that affects the central nervous system and causes severe pain. And while I suffer from this pain every day, I am being treated for the pain by a combination of medications that includes the drug gabapentin, which addresses nerve pain.
Recently, due to a combination of factors – a new aide sent by the agency that helps me with household tasks I cannot accomplish because of disability, not realizing my rheumatologist hadn’t given me refills on my prescription and the weekend hitting just as I discovered the aide had moved my empty bottles meant to remind me to call the pharmacy and get more pills – I ended up without gabapentin to ease my nerve pain for two days. The first day wasn’t terrible, because I still had some of the drug in my system. The second day, however, was like a horror film, where the woman keeps going directly into the path of the murderous intruder and yet another wound is inflicted around each corner she turns. The longer the day went on, the more pain I was in. The more pain I was in, the less I could move. The less I could move, the less I ate and drank, the more dehydrated I became. The more dehydrated I became, the less energy I had. The less energy I had, the less I could move. The less I could move, the more pain I was in.
It became a vicious circle where I just kept getting worse, and nothing seemed to ease the suffering. I couldn’t get comfortable. I couldn’t think straight. If I could
think, I thought about how much I was suffering, so I tried not to think – distracting myself with whatever I could binge on Netflix. I stuffed my face with carbs that were easy to access. A chunk of crusty bread ripped from the loaf, a piece of chocolate, a peach that a friend had brought over a day or two before – I couldn’t remember when, exactly, because I couldn’t think straight, and a day seemed like an eternity – were the only sustenance I had. They were the only things that needed no preparations.
I started attempting to use my “as needed” medications to mask the pain that wasn’t being treated by the gabapentin. It was barely taking the edge off. NSAIDs aren’t made for stopping nerve pain. They are made for stopping inflammatory pain, like sprains and arthritis. They don’t do what gabapentin does. But they were all I had, so I downed them four or five times that day, hoping to eliminate any pain that I could.
One long Sunday. That is all it was. One full day without medication was all that I suffered.
And yet, that isn’t the way it works with fibro. Because I am still suffering the effects of that day without my drug. The pain and the strain on my body, and the stress of that day have thrown me into a flare that is causing increased pain and decreased productivity and all sorts of symptoms that I haven’t suffered in a long time. It totally sucks. I’m doing whatever I can to rest, get proper nutrition, reduce my stress and utilize therapies to get back to my previous state and get my symptoms under control. I primarily use mindfulness techniques, acupuncture, yoga, light resistance training, psychotherapy, swimming, supplements, stretching and art therapy as ways to manage my illness – alongside my long list of medications, of course. A combination of traditional medicine and alternative therapies has been the most effective for me. But the medication is definitely essential.
Now, this is starting to sound a bit like a tragic tale of misery, but it isn’t meant to be. As I mentioned, psychotherapy is one of the many therapies that I find essential to my care. And while I was without medication on Sunday, and Monday morning my script for more gabapentin came in and I started taking my pills while standing at the pharmacy counter, not even waiting until I left the building, the effects of being without the medication were still very strong on Monday, so I cancelled my appointment with my therapist for Monday afternoon.
I left a rambling message on her voicemail, and told her I could barely think, much less process anything with the amount of pain I was in. When she called back later, she said something along the lines of, “you never know what opportunity there might have been” because my mind might have let out in that state things it doesn’t in my “together” conscious state. I hadn’t considered that. I was only considering the pain of the bus ride and the challenges of using my brain when I cancelled. But I did tell her that the day had offered me a great opportunity I had not anticipated.
That day reminded me of how much pain I used to feel all of the time.
That day let me glimpse what life, untreated, had been like.
That day made me extremely grateful.
When I ended up without my medication, I knew it was going to be a challenging thing to endure the missed doses. I had no idea how challenging. I had forgotten how much pain there is when I am not being treated – when I am not doing well, using the methods that help manage my pain, and in a good place. I had no recollection of how much suffering there is when the suffering is at its worst.
These days, when I am asked what number my pain is on the pain scale, from one to 10, I generally answer that I am a six or a seven. And that number is still valid
when you consider that such a number means that the pain is always present and
interferes with your daily function, causing you to be unable to perform tasks
normally. But when I felt that other pain, untamed by the gabapentin that has been a part of my daily life for almost five years now, I remembered that I didn’t call that pain 10. For some reason, I still assumed there was worse pain out there than what I was feeling, and I reserved that number for something more terrible.
Today I am not certain that there is a pain more terrible. Today I stand by my six or seven of daily pain, and I call what I experienced on Sunday a 10. And that is why I am grateful. Because I was given a little look back at what I used to feel all of the time and understood how much worse that was than today.
It is easy, when we are in the middle of something challenging, to consider it the worst and most difficult challenge. We often forget – and rightly so, I believe – the pain of the challenges that came before. I think it is something akin to childbirth. The pain is terrible, but the moment the child is in your arms, the pain is forgotten, and you are awash with joy and wonder and love. Or maybe it is like climbing a mountain, with shaking, aching muscles clinging to rock and fighting for survival, and then being flooded with joy, accomplishment and awe when you reach the top and look out over the valley.
Challenges are like this for us, I think, on purpose. Were we to hold fast to the pain, the terror, the struggle and the horror, we would not survive. We are meant to – even made to, I believe – focus on the moment that we overcome and find all of the good feelings that accompany that mastery, and to let go of the pain of getting to that moment.
In some ways, I let go of what it felt like to be in the worst pain of my life once we found ways to dull that pain, and to give me an option to live a better and more productive life. But, like many of us do in forgetting that prior state, I forgot how
lucky I am to be in the better space.
A day without my drugs was a day of remembrance. It was a reminder of how much good my doctors are doing, and how much my treatments are working, and how well I am feeling in comparison with four years ago. I am so grateful for that glimpse of what it was like before to remind me of how far I have come, and to reiterate the importance of being vigilant with my therapies.
I may suffer for awhile with this fibro flare, or I may be able to quickly recover with the help of the tools that I have assembled to manage my disease. I don’t know for certain.
What I do know is that I already feel much better today than I did yesterday, or the day before. The treatments are offering me tremendous relief. I am extremely lucky that my body and mind respond so well to these medications and other therapies, and that I can be as well as I am.
It is so easy to get weighed down by the fact that I am disabled, low-income and less than I wish that I were in this life, having had my dreams shattered by chronic illness. But there is reason to be grateful, and there is reason to hope, because things are better than they once were, and there is always the potential for things to become even better.
My day without gabapentin sucked. But it also taught me to be more grateful for
the gains I have experienced, and to be more hopeful about the future of medicine, and the ways I might be helped in the future.
As long as we keep fighting, we have more and better chances at finding even more for which we can be grateful. And that definitely applies to those of us who are fighting chronic illness, but I think it also applies to humankind.
If you keep up the fight, you keep discovering opportunities.
So, keep up the fight, friends! Don’t forget any ways that life has improved, and trust that there are more ways coming just around the corner. Remember to be grateful for what is good and to hope for what will be good in the future.
And make sure you refill your prescriptions on time!