Clarification

(Note: if you haven’t read the post prior this one titled “Final Stages,” you will want to do so before reading on. Click here to bring that post up. Thanks!)

Hey guys,

First, let me say a huge thank you to everyone who has liked, commented on, and/or shared my last post. The outpouring of support from the ME community and elsewhere has been nothing short of amazing. Unfortunately, as I am now averaging literally hundreds of responses a day, there is simply no way for me to reply to individual comments. I am trying very hard to get together enough working brain cells for two or three more posts I feel are important right now, so energy conservation is an absolute must. Still, I couldn’t post this without letting you guys know how very much your support has meant to me. Thank you!

Second, I made a bit of an oversight in my last post by forgetting to mention at least some of the history leading up to this decision. I had not expected that single post to go viral the way it did, so had assumed most people reading it would be somewhat familiar with my journey prior to this point. Oops, lol. That said, let me explain. The decision to stop eating is not something I came to easily or quickly, nor is it something I decided on the very first time I found myself unable to get or keep food down. My case of ME is progressive, as opposed to chronic or relapsing/remitting, which are more common forms of this disease. I have had ME for over a decade, during which the disease has made clear and consistent progression regardless of any and all methods tried to slow it down or force it to stabilize.

Yes, I have tried it all. The diets, the supplements, the forced rest, living within the energy envelope, etc. You name it, and if it is a legitimate option to help people living with ME, I’ve tried it. As far as the nausea itself goes, I have tried multiple medications in several forms, including but not limited to: pills, oral liquids, sublingual (under the tongue) medications, creams, and suppositories. I’ve also tried diet and lifestyle changes. Nothing has had any effect whatsoever in helping my nausea. In fact, I had bad reactions to several of the anti-nausea medications that actually forced severe vomiting instead! Ironic, huh? As for liquid diets, while I was able to live on them for awhile, I can no longer keep them down, either.

One of the posts I plan to write very soon will be on what we believe to be the causes of my particular digestive issues, as well as those common in ME. Yes, I said “causes,” plural. I don’t believe at this point there is one single cause behind my digestive issue, but rather two or three, all common in ME, which have combined as the disease progressed to create an entirely untreatable situation. I’m sure the doctors could figure out something via artificial nutrition methods, but my last post explains my reasons for turning away from that particular route.

In any case, I wanted to post this to explain: This is not a decision I or anyone else should rush into. There are many types of treatments which exist for various causes of nausea, and it’s important to try to find a fix before making this type of decision. This has been a long, long process for me, and I wouldn’t have shortened it for the world, because now I know that I know that I know I am making the right decision for my circumstances. I have peace about it – even if I am a little nervous about how it will all play out.

Once again, thank you all so much for the tremendous outpouring of support and understanding I have received over the past few days. It means even more because I know many of you also struggle with each word and sentence you write, yet you chose to spend precious energy writing to me anyway. You guys inspire me every single day. Much love to each of you.

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17 thoughts on “Clarification

  1. You don’t owe anyone an explanation, response, or justification for anything you do. This is your life, your journey. Please don’t let anyone put expectations on you or guilt trips! You have my support 100%. Nobody knows your reality better than you do.

    • Absolutely, I totally agree with Yocheved. This is your journey, Brooke. Don’t waste time and energy on feeling obligated to people. Do what you need and want to do (as far as you are able), and nothing else. Love to you and your family xx

  2. Brooke, as always you inspire me more than any human being I’ve ever met … I knew when you made this decision you must have tried everything that was an option within what you were willing to do and tolerate, and that balancing your quality of life and family’s quality of life were paramount. You rock so much because you’ve got this life thing figured out more than most of us – so when you have it figured out, I sure as hell ain’t gonna argue! ❤ you girl!

  3. I wish you the best with your decision. I hope your experience is as least painful as possible and that you are able to accept the love so many people are sending to you. I know it was a courageous and difficult thing for you to share your experience and I believe doing so is helpful to many. I am grateful that you decided to spend your precious energy to share with us. May the blessings of Love surround you and give you peace.

  4. There’s nothing I can add to what so many others have written. I just want you to know that another being has read what you wrote, and is sad.

  5. Brooke, I notice that out of all the things you say you’ve tried, you mention things suggested by the “conventional” medical fraternity, but not things like kinesiology or homeopathy, which I know from personal experience can be hugely effective with ME. Have you tried anything like this? I hate to think of anyone taking the huge decision that you have when there may be something which could actually make a difference x

    • Yes, I have tried those things too. Trust me when I say I really have tried it all. I know natural therapies, supplements, etc help many people, but not only have they not helped me, I have other unique issues (extreme sensitivity to anything that increases serotonin, which is almost everything) that make many of these things downright dangerous. Thanks for the suggestion, but yes, been there, done that, burned the t-shirt, lol…

    • Jules, would you please tell us more about the things you mention? My daughter has very severe ME, is tube-fed and because of all the stress in hospital (she is there for 9 months now) she cannot tolerate the nutrition and vomits quite badly. It is getting worse day by day. And the doctors keep wondering why she is still not taking proper food! Please help us! I am very keen to learn about kinesiology and homeopathy. Thank you so much!

  6. My Heart goes out to you in you struggle you are so brave. It is criminal that those of us who have M.E. do not have the full support of the medical community and in your case, it is especially bad that you are not able to receive the care that you need and deserve.
    On a personal note I lost my wife to cancer in April, she had progressive M.E. and ended up with aggressive breast cancer that she was too weak to fight. My own M.E. is of the Pacing/crash variety so I do not know how this will play out in future.
    Wishing you love and serenity always.

    Simon

  7. I went through something similar. I went from a size 18 Plus size woman to a child’s size 14. Nothing would stay down and the doctors couldn’t help me. They basically medicated me until I was never awake or aware of anything. I was ready to go, even started giving away my things. Now it’s just the non-stop pain that is destroying me. Again, no answer or cure, just here take this opiate. I hope when my time truly comes, I can be as brave and courageous as you are.

  8. I’ve only just found your blog and read this and your previous post. There’s nothing I can say that hasn’t already been said. It is wonderful that you are sharing your life and illness so candidly with the world. People are slowly awakening to the horror that is ME, and from people like you someone somewhere will not only find the causes but the remedies too. It is a tragedy though that so many, like you have to suffer to make this progress. I was diagnosed with ME six years ago, but this year was re diagnosed with Ehlers Danlos and PoTs. I sympathise with your nausea issues as that was my constant symptom, thankfully, for the time being I have managed it by removing sugar from my diet and just SO much rest. I have always followed the natural route, which thankfully keeps me with a reasonable quality of life, despite loosing my independence and career.
    We are all different though and this is not a disease that treats everyone the same. I still have no idea if I have ME or not, if it will progress or not, I do however still have hope and a tremendously supportive family and friends. Like you I wouldn’t go down the path of too much medical intervention and so again I completely understand what you have decided and admire your bravery. I do not yet have to make such decisions. I hope that your family know that they are not alone with you, but you have a global community of sick but wonderful people taking every step along with you. xxxx

  9. M.E. is like a slow death in so many ways. Am really glad for you to have so much love and support in your amazing life. Am really angry that you are being denied Hospice Care. Keeping you in mind ~ Wishing you Real Peace Experiences during this time Brooke.

    – Sean

  10. M.E. is a cruel illness and I feel helpless to say anything helpful. It is so wrong that you are denied palliative hospice care. Severely affected M.E. sufferers such as yourself are backed into a corner with only one choice that has any dignity. By writing you are helping to get knowledge out to the public which will hopefully lead to changes in the future. You are doing a huge service to other M.E. sufferers. I admire you. God bless you and give you peace
    Judy

  11. Hi, Brooke. I have ME in Tennessee and have lost over 80 pounds over the last couple of years. My time is coming to and it can’t be any worse than living with ME. Like Patrick Swayze in Ghost, I want to scream “I had a LIFE!!!” at my murderer, ME. May God bless you and your decisions. Your courage has helped many people. Love to you from Jocelyn, age 63. Fighting ME for over 30 years.

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