So I have learned a lot of painful lessons from pain, the hard way, more than once, because that is how I roll. Here are something I had to figure out.
I know you may not think this but I am an insanely disorganized, cluttered, absentminded person. None of which I have a problem with. However, with brain fog from chronic pain, I started getting flustered when I couldn’t find things or figure something out. So I became organized. Somewhat. I mean I don’t go nutbars but I organized my meds, my clutter in the office, notes I need on things. Reminder systems with backup reminder systems. It takes some stress away having some organization.
Routine sounds boring. But routine is your friend when you are distracted by pain and brain fog. I take my meds at such and such a time. I regulate my sleep cycle (when and if possible). Routines make things less stressful. It is just one thing you don’t have to think about really because you have it down to a habit.
This is a major one. Because it is actually a really tricky lesson. How do you have some semblance of a life and Not over-extend yourself so you are screwed for days or weeks? When the limit always changes from day to day. And you really, really have to listen to the ‘before the red line’ hints in order to know where that limit is and telling you not to exceed it. That first pull of fatigue. That subtle extra ache. Maybe a whirl of dizziness. Any little clue that it is time to stop. To rest. And, I’ll tell you, you will never master pacing. There are times a) you Want to do something and plan and accept the pain consequences or b) your brain keeps telling you it is possible so you ignore any signs or c) you had not even a hint. But also pain flares all on its own. Pacing helps moderate Boom and Bust cycles… but not flares.
I have an immense amount of empathy for all kinds of suffering. And to be human, is to suffer sometimes. We all have struggles. No one is perfect as their Facebook profile. What I struggled with for a long time was having just a little self-compassion because I just never gave myself a break. But I am working on that.
Chronic pain takes an emotional toll. And I know that pain always causes a reaction emotionally and then mentally. And I learned the hard way unmanaged pain can easily bring you into a deep depression due to the toll. So I have learned to be much more aware of my emotional reality and to manage it in such a way that I mentally do not make it worse. Because pain will affect mood. But that doesn’t mean I have to allow the emotion to own me such that I mentally put onto it a lot of negative thoughts compounding the situation. Not that this is easy. I have bad mood days. I just let myself feel them and know it is temporary. But this has taught me my emotional and mental well-being are very important. As much as my physical reality. Perhaps even more so. And I learned to get help when needed to manage the depression. And that I am not weak for needing medication or help for the depression.
Being my own advocate
Educating myself about my chronic pain and illnesses is important. Eventually, you will know more than your doctor about what you have. In the beginning, you just take them at their word…. ‘this thing will make you feel better’ but later you are more discerning with treatment options and you realize you have to stand up for yourself and your rights. Not only that but the workplace can be a brutal place to navigate with chronic pain. I have learned to stand up for myself and asked for accommodations that I need. I know work isn’t a flexible as it could be. I know it should be flexible. I am aware there is still a lot needed for awareness based on my experiences in the workplace.
That coping is a process
Sometimes we do not cope well because we are overburdened by pain. And sometimes we cope great. But it is a process. We are going to deal with frustrations, emotional responses to pain, anger, guilt… and more. Coping is Not an endpoint. It fluctuates. And I can’t feel bad about that. There are just times when it is harder to cope than others and to give myself the emotional space to understand that.
I have learned to accept my limitations and the necessity of pacing but it took some time to reach that point. And when I am not coping well… acceptance falls apart. But when I am coping well I do have a firm acceptance of this pain. That I need to live a life with it… but within limits. And this is difficult when things are severe. You feel like you are missing out on… the world. But we survive severe and eventually cope again and then we can add some life in there.
That things have a price
That when I exceed my limits there is a price for that. And ignoring that is determinantal to my well-being. But also that we have to keep doing things because not doing so is determinantal to our mental and emotional well-being. Seems like a difficult line to walk but I just have to listen to my body and decide when I can do things, what I can do, and how much rest will be needed from it. We are willing to pay the cost if we get something from it. Like socialization. Or productivity of some sort. But we shouldn’t have to exceed our limits all the time because that price is a brutal one. And I just can’t handle that price.
Moments are precious
Because I have limits everything I do with friends and loved ones is precious to me. And maybe most people do not realize because they are busy all the time but when you can do little the little you can do is gold. And we have limited amounts of energy to spend on those golden moments. So we really appreciate them.
I have learned we are stronger than we know and weaker than they think
I know we develop strength from coping and finding ways to endure. I know we have the strength to get through all of it. Because no matter how worse I get I persevere. But I know I am weaker than people think. Because people assume when we can do a thing one day we must always be able to and that just isn’t the case. And I know people think we should be able to just push through but doing so comes with a massive price for us. And I know they never see the bad days, at home, so they never understand how bad things are when they see our fake, presentable, smile as we struggle to function. I am strong for coping with this. But I still have to cope with this. And that just means I am not capable of as many things as a healthy person is. I have to really pace myself.
More than a fraction
I learned I am more than what I do for a living. That that was just a fraction of the person I am. And while I want to work it isn’t possible at the moment. I have dealt with that. And I try to find things I can do without focusing on what I cannot. Even if it isn’t much at the moment. But I no longer define my self-worth on my job.
I guess what I am saying is that this is a rough ride, man. A real rough ride. And it takes a long time to know how to pace without making yourself sicker. And it takes a long time to cope with the emotional consequences to pain. And it takes a long time to understand limits are there to protect us and our well-being. And that well-being is more important than the average person can understand. There are a lot of lessons we learn along the way. Mostly, in my case, what Not to do. Even if we deal with disability it isn’t the end of all living.
Fibromyalgia is more than pain
Chronic pain and emotions
Chronic pain: how we are socially unacceptable