To My Loved Ones Who Watch Me 'Do Too Much' Despite My Pain and Fatigue
Loving somebody with a chronic health condition is hard. Having to watch the person you love struggle day in and out with pain and fatigue and wishing that there was something you could do to take the pain away from them, to help them, and knowing that there is nothing you can do or say that will ease their pain — I get it, it’s tough.
Watching the person you care about run themselves ragged, using up every precious bit of energy that that they have, doing things that you deem unnecessary, you might think, Why can’t they listen? Do less? Pace themselves? That way they will have more energy at the end of the day. More energy to spend with you.
I have spent the past 15 years in varying degrees of pain and fatigue. I have spent the past 15 years trying to fathom it, figure it out, the magic ratio between energy expended versus pain and fatigue experienced. I have gone from working 60-hour weeks to doing nothing at all, and everything else in between. The one thing that has remained constant, is this: It doesn’t matter how much or how little I do, eventually my body is going to fail me. Eventually, I am going to crash. Eventually, I am going go down, go under, into the abyss of pain and fatigue. No matter what.
I know that this may be a difficult concept to comprehend. I know it appears my health is at its worst when I “do too much,” that my pain levels are at their highest when I “do too much,” that I would be better, less tired, in less pain, more able to spend time with my family if I were to take it easier. I know that in a logical world this would be the case. But there isn’t anything logical about illness. There isn’t anything logical about chronic pain and fatigue. It comes when it comes, and it eases (because it never goes) when it eases. Nothing I do or don’t do is going to change that fact. I know this because I have spent the past 15 years living it.
I have spent the past 15 years living at the mercy of a body that hates me. Everything I do is at its will. When it decides it has had enough, it shuts down, often with little to no warning. It has taken me 15 years to accept that I have no control over this. This is my life now.
Accepting this has been difficult and painful, but now that I have, I feel strangely liberated. For the first time in 15 years, I feel free, and this freedom has given me back my passion for living. This acceptance has lit a fire in me that I thought was long dead. I have spent so many years worrying about when the next crash is coming that I haven’t enjoyed the moments between the crashes. I spent my time trying to fend the low times off, by being cautious and trying to conserve my energy, and in doing so I would feel bitter and cheated when the crash arrived because I hadn’t done anything to warrant or deserve a crash. I’ve spent 15 years living in a cycle of fear and bitterness.
I’m done with fear and I am done with bitterness.
Now that I accept that the crashes will come regardless, I am able to live. I am able to do, and I am determined to enjoy.
I know that this sounds nonsensical, but it is what it is.
You, as my loved ones, my support system, have a choice to make. You can choose to disagree with me. You can choose to disapprove of my choices. You can choose to believe that if I were to only slow down, do less, take it easier, that I would be in less pain, less fatigued, and you can choose to be angry with me when I don’t heed your advice, and continue to keep going at full pelt. You can choose to feel strangely vindicated when I go under because you will have been proven right. You can choose to feel guilty for feeling vindicated. You can choose to feel neglected and left behind when I choose to not heed your warnings and continue to “do.” You can tell yourself that your negativity comes from a place of love. That is your choice. Perhaps that is the process you need to go through, the same cycle of fear and bitterness that I struggled with for 15 years.
Or you can choose to take me at my word. Choose to accept that I am the one who lives in this body. I am the one who spends every single second of every single day in various degrees of pain and fatigue no matter what. Accept that I have finally found a way of living with myself and my defective body. Accept that for the first time in 15 years I feel at peace, and that peace has brought me joy, and that joy has brought me a new lease on life.
Accept that I am going to go under, eventually, no matter what I do or don’t do. Accept that I am fully aware of when I am doing too much and trust that there is a reason for me doing so. Accept that I am fully aware that with over exertion the crashes may come sooner, and trust that I know when I have pushed myself too far, but I did so because the joy of the exertion was worth the recovery period. Accept that I will come through the dark times, and enjoy the better health days with me. Live them with me. Cheer me on when I try to fly, instead of worrying about when the fall will come. Because the fall will come, whether I am flying or walking, enjoying or worrying. It is coming. Eventually. No matter what.