Note: This was a difficult post for me to write but one I needed to write. I apologize upfront if I unintentionally offend anyone. That is not my heart. Just to create a deeper understanding.
This post is to those who do not have Myalgic Encephalomyelitis (ME). It is from me, but I’m guessing it is something that many who suffer with this illness would also like to say.
So, in essence I guess you could say this is a letter from a ME survivor to Everyone Else.
Several years ago, I chose to take responsibility for my health, for my life, and for the illness that I have unwittingly had the burden of carrying for two decades now. I made this decision (after listening to doctors and many others to little or no avail) because I began to realize that no one but me truly knows what is occurring every day within my body.
It is a decision I have never regretted making. However, since my relapse in January, I have slowly been noticing that I am struggling to make that change in every aspect of my life. There are areas that I still allow the influence of others to determine whether or not I will do something I know I shouldn’t do.
Worse, I am having to face the truth that I am wavering on not pushing beyond what my body can safely endure because … I’m afraid.
Since Dekker’s death and this relapse, I am once again confronted with the ease in which I suddenly find myself alone, isolated, disconnected. However, unlike the crashes I have endured for the past 2 decades, this relapse is just not easing. Any expenditure of energy that my body deems too much causes me to crash instantly, and I find myself back in bed and starting this journey over, yet again.
In addition, the constant difficulty I am experiencing with my eyes and my vocal chords as the result of too little energy and neurological impairment is starting to cause me to wonder if this relapse might not be my new norm. And if not my new norm, than the probability that this may be a long road back to above 50%.
So I have made the decision to make drastic changes in order to get ahead of this crash and allow my body the time it needs to recuperate. These decisions are choices that I make in order to try to avoid repeated crashing, as well as, to try to find a sense of stability and normality in my life.
When I tell you I can’t do something, it is not because I don’t want to. I want to in the worse way. You cannot imagine how much I want to go for a walk. Or take a long run. You cannot imagine how I yearn to have long conversations for hours without being concerned about tiring or my voice leaving me or my lymph nodes becoming so painful that I have to resort to constant ibuprofen.
When I say I can’t, I’m not trying to get out of doing something. I’m not trying to be sicker than I really am. I’m making a choice not to do that thing because my body is struggling and I have a long history of experience that tells me if I do that I will pay dearly.
When I tell someone I can’t do something, instead of suggesting ways I can do something, I ask that you think about what happens if I do it. When we are done with our activity, we part our ways, and you continue on to do everything else you have lined up for the day. Your day is full and eventful and fulfilling.
I return home and spend the next days and weeks recovering. I experience an energy deficit in my body so severe that everything becomes a monumental task. Eating wipes me out. Bathing wipes me out. Getting a cup of coffee wipes me out. Sometimes, I have to lie in bed for hours upon hours in order to get enough energy, or sheer determination, to do the smallest thing like getting dressed or taking the garbage out.
I get to spend the aftermath of our time out and about, in isolation, in agony and in fear, wondering if this time will be the time that I pushed too far; will it be the time that I collapse permanently?
Those may seem like silly thoughts to you, but for me they are constant companions because I have many friends with this illness who did less and have permanently relapsed.
I need you to understand that having Myalgic Encephalomyelitis (ME) is like playing Russian roulette. I never (really) know where that imaginary line is that is one step too far; the boundary line, that once I cross it, there is no return.
I never know if I push through beyond my body’s capabilities, if this relapse might not be my last.
In many ways, even though I am diligently listening to the signals my body is sending, living with ME is often nothing but a guessing game. My only hope is to try to stay one step ahead of it by stepping back and doing less.
These choices are extremely difficult to make and to keep because I want to DO. I want to GO. I want to be involved with friends, family, etc. But I have an illness inside of me that refuses to let go.
This is not an illness that allows me to exceed the boundaries that it has set on me on any given day. In order for me to accomplish, what others deem to be small feats, I must rest, pace, plan and prepare for days, months and sometimes even longer. My only hope for doing more is to reduce now.
This brings me to my dilemma. By doing what I need to do – doing less – I am afraid that I will lose my friends and family. The assumption will be that I don’t want to do it, or I’m being lazy, or on those days that I can do something, that it will be seen with, ‘see she can when it’s something she wants to do.’
Nothing could be further from the truth. I want to be well. But I am confronted with a different reality.
Thus, that brings me to this time and place and I now have to ask you a favor. Instead of telling me what I can do or questioning that I can’t do something, I ask instead that you try to remember the price I have to pay in order to do that event with you.
Remember when you get to go home, I get to go to bed, utterly exhausted and wiped out. And remember, I get to stay in bed, or in my home, until my body recuperates, no matter how long that may take.
Instead of questioning my motives, or adding what you think would be better for me, I ask that you think about how you might be able to bring the activities and fun we used to have outside, here within my 4Walls and AView.
In return, I offer a couple of suggestions that would allow us to continue hanging out while also allowing me to reserve as much energy as possible.
Instead of calling me, perhaps you might text me because you understand it takes up less energy.
Instead of just showing up, you check to see what kind of day I’m having first.
Instead of asking me to lunch, you pick it up and bring it here.
Instead of asking me to do an activity, you send me flowers to show you are thinking of me even though you are not able to drop by.
Instead of making suggestions, you ask what thing I think I might be able to do.
Instead of assuming what you think is best for me, you assume that I know what is right for me at this moment.
Instead of assuming I can or can’t do something, you ask me how I feel about doing that activity.
Instead of assuming on those days that I am able, and then on the next when I am not, that something is wrong with my mental state or my motivies, remember I made a choice to spend it with you and now I am paying the price. I thought that highly of you.
Enjoy the time we have together, whatever it looks like and rejoice with me whenever it can be outside my 4Walls and AView but don’t hold it against me when I can’t participate.
I guess what I am asking is simply this. I ask that you remember that I never asked to have ME. In addition, I ask that you remember that this is a counter-intuitive illness. What may work in other illness does not in this one. I ask that you assume that I am able to make the best decisions for me because I spend 24 hours a day living in and with this body that is no longer functioning correctly.
But mostly, I ask that you trust me enough to tell you the truth on any given day and to know –innately – what is best for me today. If I say I can’t do something, I really can’t. There is no hidden agenda, no hidden self-pity, no hidden anything. I just can’t.
Whether I am running on empty or whether I am choosing to reduce because my body is struggling, that really is all it is. The best way you can help me, is to help me help my body on any given day.