As someone who struggles with severe, progressive ME, one of the issues I struggle with most is giving in to new lows as the illness progresses. Over the years, I’ve learned this illness is relentless. It will continue to worsen no matter what I do. Sure, I can speed up or slow down the progression some depending on how much I push myself beyond my limits, but in the end, the illness will be worse this month than last month, and next month than this month. That’s just how it is.
So why do I fight it so hard? For the past several weeks I have become aware that my body is pushing for a noticeably new low. I already spend all of my time in bed (when not using the bedside commode) in a dark, quiet room. I already limit my in person interactions with people as much as possible. I also limit my online interactions to a few minutes several times a day. Already, I have been forced to give up almost all solid foods, living day to day on however many shakes I have the energy to drink and the ability to keep down. I’ve given up so much to this illness already. Yet it demands more.
For weeks I have been living on pure adrenaline every waking moment, because I do not want to give the illness what it wants. I cannot bear the thought of losing more of what little I have left. So I push myself. And I pay the price. And all the while the illness tugs at my consciousness, waiting, knowing it will soon get what it wants because I can’t live on adrenaline forever. I am exhausted, and not just physically. Emotionally. I am tired of playing hide and seek with my ME. But I cannot just give in, because what I give I never get back. I know, I’ve tried the whole “living within your energy limits thing.” It works for some subtypes of ME, but not mine. Mine keeps progressing no matter what.
Soon, I will give in. Soon, there won’t be a choice. Soon, the illness will take another level of freedom from me. And I will adjust, and learn to be okay with what I am allowed. And then I’ll go through the same process again, each time finding a new balance between living and not making my symptoms worse than I can bear. I do not know how many levels are left before this illness takes the final one, but I will fight to get as much living done as possible, until all my living is done. In my mind, it’s the only way I win.
Documenting M.E. 
Good evening, Brooke! Thank you for sharing your thoughts on what has inconceivably become a taboo subject in our culture. I hope this message finds you not too overwhelmed with fear.
From another perspective, none of this is giving in, but letting go, which is possibly the strongest thing a person can do if you ask me. Dying isn’t losing. Dying isn’t losing. Dying isn’t losing. You are never going to lose by reaching your natural end on this earth like all of us will do, and most often we do because of illness. To me, and other people influenced by Buddhism, illness is just another part of life, of nature. I understand feeling like you are being “beat” by disease. For years I fought to subdue the secondary infections I picked up over the years but they are going to “win”…short term, at least. You think they’d try as hard to survive within this withering body if they knew they’d also die the moment I did? (Morbid humor.) But I feel that, just because my attempts to cure the multiple diseases that will most likely bring about my end have failed, and instead they persist, doesn’t mean I’ve done anything wrong or have lost my fight. This is natural and without all the interventions I’ve already had, I’d have already been gone, and I trust it’s the same for you.
You haven’t done anything wrong and you are not losing. You are not losing. You’re doing great. Though I offer my opinions on the subject, there isn’t a right or wrong way of dying, and I’d never want to deny you your own way of looking at things. Whatever happens, whenever it happens, I wish you peace of mind and soul to know that you are going to be okay and will be taken care of.
xo Kit
Hello again Kit! Thank you for the kind words of encouragement. I agree with what you said. I do not see death as losing. I struggled a long time with accepting that I could not “beat” this illness by living (I actually have a post on a similar topic coming up). What I ended up deciding was that the only way to beat this illness was to do as much living as possible and find some level of contentment in my circumstances. I feel that the illness only wins if it defeats a person’s spirit. We don’t always have control over our bodies, but we do have a bit more control over our spirits. So that’s the view I try to live with.
I think where this sometimes gets hard is when I know I’m about to go down another big level, because I have to go through the grief process all over again. I’ve learned that with a progressive illness, you don’t just grieve once. You grieve again and again as the illness progresses in its downward cycle. It gets a bit easier, and the grief process a bit shorter, each time, but it’s still there to go through. Thankfully, over the years I’ve learned that’s okay, though it’s still sometimes difficult to be open about it. Anyway, I’d better stop here before I write my entire next post, lol… Thank you again for the kind, supportive words. Reading them definitely helped. 🙂 Take care!
Hi Brooke, sorry it’s taken this long to respond–I had the words in my head but they’re easier to physically type than put into a phone keyboard! I love what you said and I hope this post will be a reference point to anyone going through similar situations.
You’re completely right that every new stage ignites the stages of acceptance all over again. Anyone who knows the stages don’t necessarily come in order, and will reoccur, is in a good place to process grief. It has been my experience, as well, that each new level requires “additional handling and processing.” 😉 More people could probably benefit from remembering that grief is not a one-time event that you sort through and then are “over it,” and I think even more could benefit from knowing that it’s normal to grieve BEFORE the loss occurs, as well. That’s a bit off-topic, but I hear it often, people adding guilt onto themselves and sometimes loved ones who “shouldn’t be thinking of the future yet.” And to a degree, if that’s ALL someone thinks about, that is true; but it’s also normal to have episodes of anticipatory grief, as it’s called. Again, off topic, but should anyone read our conversations, I think it’s a good extension to what you were saying.
xo Kit
Reblogged this on Linda Williams Stirling and commented:
An amazingly honest and open post about living and slowly losing the battle with ME. My heart goes out to Brooke, but I have great admiration for her desire to document her life with ME, so others can learn from her. Blessings to you, Brooke.
Take care,
Linda Williams Stirling
Thanks for such an open account of your situation. Your documentation of your decline is courageous and of great benefit to others. I agree with Kit above – you are not ‘giving in’ or ‘losing’, but learning to accept life as it unfolds. Acceptance is so alien to our culture of ‘fighting’ illness, but is vital if one is to find any peace and equanimity within it. I like Toni Bernhard’s comment on ‘broken vase practice’ in her book ‘How to Be Sick’ – she contemplates that every vase is broken, in the sense that it will one day break, and so it is with human bodies and illness. We will all be ill at some point, ultimately fatally for most, but it is the level of peace and acceptance we find within our illness and pain that is important. You are not ‘giving in’ but accepting, and none of this is meant to take away from the grief and loss which you feel, as would anyone in your situation.
Thank you for your wise words, as well as your support. I agree with what you said 100%. Our culture is so huge on praising those who “fight” and “beat” their illness by getting better. I sometimes wonder if it wouldn’t be healthier for everyone to take the view of illness and death as simply natural parts of life, rather than evil things to be fought and defeated as long as possible. Your comment makes a lot of sense.