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Post Exertional Fear

I had to go to the hospital on Thursday (5/4) to have my Jtube changed. It’s recommended that I change it every 3 months but going to the hospital is such an ordeal and my health has been so unsteady and often precarious lately that I kept postponing it until it had been over a year since it had been changed, so I had to just schedule it and make the arrangements.

I have done this trip to the hospital at least 10 times in the last 4 years. I take Ativan when the ambulance shows up to take me there on a gurney and during the procedure they give me fentanyl. Then I take a second dose of Ativan when the Fentanyl starts wearing off. This combination lowers my stress response and has always protected me and kept me from getting worse from the huge amount of energy required and stimulation I’m exposed to.

It’s always incredible getting out of my room and experiencing the real word first hand after being in my room for months or years. Seeing the sky, and the trees, feeling the weather and the seasons, and breathing real air, but also seeing a world of people filled with lives; Jobs, career paths, plans for their future, relationships or marriage, kids, outings and activities and hobbies of all kinds; full, healthy lives. This is probably the most awe inspiring thing for me but simultaneously devastating.

I survive, as I have explained in blog posts like these:

 Making Your World Smaller

 The World Is There But It’s Not There

by what i call "making my world smaller". I don’t let myself even think about any of the things I cannot do. I remove them from my world and my reality, and shrink my world to just the things i am able to do. And then I fill that world with as much of those things as I can. This way I am not longing for that which I cannot do, and the things I can do take on new meaning, acting as small versions of the much larger activities I would be doing in real life to fulfill those needs and desires. Like instead of writing a book, I write a blog. Instead of working as a photojournalist or documentary photographer all over the world, I photograph my life with ME/CFS in bed. It’s not what I wanted or planned for my life, but these things fulfill me when I don’t let myself think about what they could be, what my life could be or what I do not have. I am actually happy a lot of the time here in bed when I am able to work on things.

But seeing people living full lives and the beauty and freedom and ease of the outside world completely blows open my tiny walled in world of safety and manufactured meaning (getting excited by things I would not even be working on if I was healthy, like making headphones which I am completely obsessed with right now). Suddenly I am exposed to the vastness and openness of the real world and it puts my tiny little life that is normally full of meaning and purpose into stark perspective. I suddenly feel desperate to speak, to make meaningful, deep friendships and relationships, to move freely and eat and drink and drive and do whatever I want to do, letting any thought lead to action without hesitation, reflection or consequence. At the hospital it’s right there, all around me. And I can feel real life flowing through everything.

And then I have to come home and I get wheeled into my room and watch the sky disappear as the doorframe slowly slides over it and covers it with my very familiar ceiling and I am back in my little world again, only with a head full of the whole world. It has always been a painful, sad and confusing time getting back to my routines and walling off my world and forgetting about all that I am missing again.

But this time it had been over a year and the exposure to the world was more intense than it has ever been. Maybe it is my age, or the time I have spent in bed, I don’t really know, but it created a desperate, immediate need to be healthy and be a person full of a life again. I just needed it now, I suddenly felt I could not keep living the way I have been. When I came back into my room afterwards I went a bit mad, more aware of the loss my life has sustained than I have been in a long time. Or at least thinking about it more. I was stuck here in bed, but had this urgent need to talk to people and have friends and cook and eat and bathe and just be free. I can’t remember ever feeling such desperation for a healthy life, I have always slowly shrunk my world, kept a militant control over my mind and focussed only on what I was capable of and just did not let my mind go to all the things I could not do or all of the things I had lost.

I have also felt more sensitive to things I was not sensitive to before going to the hospital. I have been hitting a sudden limit where i just have to stop doing something like typing a simple message or I can feel I will crash. Often tines this mental wall goes up in the middle of writing a short message and even just hitting the send button would make me crash. I am honestly terrified of loosing capabilities I have had since I started taking Abilify. I cant loose the ability to write again, I just can’t, everything I do now depends on it.

I have no idea how I am able to write this post right now, I have been unable to send more than a few sentences to the people I know online since getting back from the hospital. For whatever reason, my whacky stress response is letting me do it, so I am doing it! ;)

But the fear combined with the desperate need to have that world out there that is completely unreachable to me has brought me to tears many times in the last few days.

I am sure all of this sounds very familiar to all of you. If we are able to do the miraculous work of making peace with our small, limited world in bed, in a room, in a house, or with a limited life out in the world, we always have to leave these safe boundaries at some point and are exposed to everything we have been missing for years or decades. And then we have to go back to our limited life again. And it is devastating no matter how severe your illness is.

And we all often have to push ourselves outside of our limits sometimes for medical needs like doctor visits or medical problems related or unrelated to ME/CFS. And in the days following this necessary overexertion we have to face the terrifying unknkown about where our health will wind up landing once we have settled again. Will we get worse? If so, by how much? What things that we have been able to do will we now be unable to do? How much more isolated and confined will we become?

This state of unknown is honestly terrifying for me and I am sure all of you as well.

The only thing I am sure of is the importance of doing as little as possible after an overexertion, then it’s a matter of letting time pass and hoping for the best. Part of the horror is the fact that what’s done is done, and there is no going back and changing any of it or doing less. But it also comes from the helplessness caused by a lack of any medications or treatments to lessen the impact it has on our health. There’s nothing we can do but wait and see what ME/CFS does to us. Whether we settle back into the same place we were at before, or if we have to give up sacred, beautiful parts of already painfully limited lives.

Will I be able to keep writing? Will I be able to keep in contact with people I care about? Will I be able to write enough to keep working on my projects? Will I still be able to keep brushing my teeth and getting up to go to the bathroom? You all have your own terrifying set of questions like this.

All we can do is wait and see, knowing that even if we get worse, our bodies are constantly changing even if they feel static and stagnant, they are not. They are always fighting to find balance and keep us going and we won’t stay in any condition or state of severity forever. Even in our most dire moments, we can keep going. If we keep breathing through the pain, keep breathing through the isolation, keep breathing through loss, the loneliness, the complete lack of life; If we keep breathing, soon we will have survived another day.

And research is evolving at an incredible rate with new ideas for treatments coming soon from all over the world - and then a cure.

The most we can do is our best, if we have done that, we cannot do anymore. Sometimes the best we can do means getting worse, and ME/CFS is to blame, not you. And you are not alone, I’m here with you. Getting worse with you. Scared with you. And desperate with you. And sometimes having beautiful days and feeling alive and free. We are all in this together and in that we can find the strength, courage and wisdom to fight anything ME/CFS has to give.

Keep breathing. Know that nothing is forever. And together we can rise above the fear.



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