Final Stages

Dear Friends and Family,

This is a post I’ve been putting off for quite awhile. But I no longer have the luxury of putting it off anymore – not if I want it to get written. My personal journey with ME is near its end. A long time ago, after months of deliberation, I made the decision that if my digestive issues ever got to the point where I could no longer get or keep food down naturally, I would not seek life sustaining measures, but would allow the illness to play itself out naturally. I am at that point, and have been for awhile now.

Let me preface this by saying that none of this is a judgment on those severe ME patients who choose to take advantage of technology like nasogastric tubes, hydration IVs, etc in order to remain alive as long as possible. I believe this is a highly personal decision, and what’s right for me may not be right for the next person (and vice versa). For me, this decision was made based on the knowledge of what ME often turns into for those who accept life sustaining measures. As bad as things are in my current situation, they could get even worse. ME truly can become a living death – except with much, much more suffering – a large portion of which is untreatable. This is difficult not only for the patient, but for loved ones who have to stand back and watch the process, longing to reach out and help but knowing their very presence only increases their loved one’s suffering a hundred fold. I have already experienced much of this. I cannot personally justify enabling it to continue and worsen via medical technology – not in my specific case. That said, each person must decide for him/herself when enough is enough, and where their individual priorities lie in terms of life and the quality it holds for themselves and those around them.

Right now, my body is literally starving itself to death. Even my best efforts to get food down have been met with frequent vomiting, rapid weight loss, and clear disease progression. The fight to get food down is exhausting. It involves closely monitoring nausea levels every single waking moment, waiting for the one minute window I may receive each day where my nausea subsides just enough that I think getting two or three bites down might be feasible. Even then, I nearly always lose the food anyway. The excess weight ME once placed on my body is coming off extremely fast. Just one example: I have dropped over an entire ring size just since the end of May. You don’t lose a whole ring size just from dropping a few pounds. It takes a significant amount of weight loss to make that happen. Everything I own is loose on me. In fact, the other night I was shocked when able to pull my wedding ring off for the first time in years!

Because the food battle has become so exhausting and completely pointless, the decision has been made to stop trying to force feed a stomach that clearly can’t handle it anymore. Ironically enough, stopping all food has actually lessened my nausea significantly. Still, all it takes is one bite for things to skyrocket again and my food to come flying out, totally undigested, either the same day or the one following. So no food for me. At this point, I have already begun experiencing some hypoglycemic symptoms. Also, my resting heart rate has shot up to 120 bpm. Several other new symptoms have also developed. Needless to say, it won’t be long now.

The biggest issue I am currently facing in all of this is a complete lack of medical care. My most recent post explains some of how this happened. Much more has happened since then, and I fully intend to write a post specifically about that as soon as I’m able, but for now, the basic situation is the same. No care. I am in the process of trying hard to get back into hospice care for this last leg of my journey, and will let you guys know how that turns out. My biggest fear at this point is that my husband and I will be forced to go through this completely alone. Among other things, a hypoglycemic coma is almost certain (assuming my heart holds out that long), and it terrifies me to think of my husband having to deal with that alone, with no doctor or nurses overseeing the situation. This should not be happening in today’s society! But it is. And people need to know it happens, often to the very sickest among us. But more on that in a later post.

For now, I simply felt the need to update everyone on how this disease has progressed, where I’m at with it, and how it is most likely to play out in the near future. Should something happen before I get a chance to write future posts, my mom (who works in the medical field) has promised to take over this blog for me. She will write a post updating everyone on the situation, and has my full confidence in being capable of answering any comments or questions left on posts in the future. I appreciate her taking on this responsibility.

My deepest love and gratitude goes out to everyone who has been so supportive of this blog. Several of you have become good friends, and writing this blog has given me a sense of purpose – something we all need in life. I hope and pray this post finds everyone doing as well as possible. I’ll keep working at adding new posts as long as I’m able, so keep your eyes peeled!

Edited to add: Please check out my subsequent post, Clarification, for a bit more explanation of the history behind my digestive issues and various treatments tried and failed. Thank you!

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51 thoughts on “Final Stages

  1. To say I am sorry you are going through this is just inadequate. The strength and determination you have shown through all of this has been nothing short of amazing and I pray you get Hospice help as soon as possible. You and your family deserve the help they give-the people who work for Hospice are the most selfless humans I have ever met. I don’t know how they do it, but the love, care and respect they show for their patient, and the patient’s family – they are angels.

    All my love – you are special.
    Fern

  2. I can’t say nothing, but am finding it hard to find the right words. Hoping you get the necessary support to be cared for with dignity – and that your family also are supported. Thinking of you. xx

  3. It’s difficult to find the words for this situation…. I’m proud of your courage to write your own difficult words, and to share them with us. I’m proud of you for starting this blog at all, when you weren’t sure if it’d even work. Thank you for allowing your mother to update everyone when you become unable to do it personally–I’d been wondering how I’d know of your eventual passing, or even the stages before it…

    As you can probably guess, I stand behind you fully in your decision not to persue additional measures to keep your body.. exisiting. In the past I’ve blogged about encouraging people to think of this stage of their own life, and to draw up advance directives to have their wishes known. I’m so glad to hear your wishes are being respected. Everyone deserves to go how THEY want and not have anything like a feeding tube forced on them… I know you’ve been through enough, and I hope everyone in your life can understand your decision to die with as much grace and diginity as is possible for this situation.

    “Nature is perfect in herself. Every season is beautiful.”

    This is such a personal thing, so I’ll e-mail you the rest…

    Kit

  4. Hi Brooke,

    I’ve not visited your site before, and, now I find myself here, stunned by your, so very brave and stirring, words, I am house-bound with ME myself, and thought I had heard it all, but I am very moved by what you have found the strength to say. Wherever your journey may be leading I wish you all the strength in the world.

    Steve

  5. I wish you peace on your journey, and that you know no more pain or sorrow. You have my love, prayers, and bright light.

  6. I am thinking of you and am outraged you and your family may have to go through this without the support of medical professionals. This is the sort of thing that should be making headlines. You are doing such a wonderful job at raising awareness and I appreciate and will pass on what you have taught me!

  7. Each time I’ve read your posts, I felt a great sadness, even though, at times, you appeared to have somewhat of a positive attitude. Your suffering and your posting about your condition, has resonated very strongly with me and, I’m sure, with all who have had the grace to read them. You have touched many people to their core. I applaud your decision – I believe a decision with such finality is not attained easily. But, sometimes, it’s the best one. Love you. Carol (Fern’s mother)

  8. It comes as no surprise to read of your plight. It is of course heartbreaking. I have myself been through a relapse when I got the same symptoms as you and I understand your struggle. I also understand your decision. I would/will make the same one if/when the time comes. To me what is the most heartbreaking thing beyond even having M.E. is the callous disregard of your suffering. It is difficult to deal with the rage I feel as there is no one person to hold accountable for this lack of support as it is systemic and purposive in my opinion. You deserve more. If you did not have to deal with the stress of being thrown on the scrap heap you may have not gone down this road. You need to be lovingly cared for and valued by the community.
    I love you though we have never met. I would hold you in my arms to comfort you. And I send loving best wishes to your husband and mother. I am sure I am not alone in understanding, from experience, and there are many holding you in their hearts.
    Brightest Blessings with the deepest empathy, Willo༺♥༻

  9. Hi Brook, I’m so blessed to share your journey with you. My wife has had the illness 20 years and is experiencing brain damage symptoms. She has had “stroke like” episodes where she doesn’t know where she is at or who I am. A 5 hour visit to the ER resulted in no diagnosis, etc.
    I’ve had M.E. for 4 years and no doctor has even questioned how the heck I got the illness.
    My wife has already made it clear, with a living will, that there will be no life saving efforts now. No tubes, no CPR, Nada. No more ER visits.
    We have begun a trip from Florida to Provo, Utah, to see Dr Bateman. There is an immunologist in Salt Lake City that deals with Primary and Secondary Immune Dysfunction.
    My wife said she doesn’t want to die in Florida and wants to see her family in Arizona, Utah, Wyoming and Colorado. We have a little camper we’re pulling behind a little truck. We only got 18 miles from home and that took extraordinary effort. We’re in an RV park trying to adjust to staying in the camper.
    You’ll be in our prayers as we make our journey and you make yours. I sincerely hope you get into hospice care. You and your husband are not alone. Everyone reading your blog is with you in spirit and shares your grief. You are such a strong spirit and we are inspired by your strength and courage.
    Everyone is worthy of dignity and respect.

  10. We have never met but your words have moved me. I have been with both my parents in their final months and for me it is essential that the support is there. I hope that the medical issues that prevent that are resolved. You are extremely courageous and you are leaving a lasting imprint on those that read your words. I wish you a peaceful end to your journey surrounded by those that love you.

  11. Thank you for having the courage to share such a difficult and personal decision with us. I am awestruck by every post you manage to write having a small idea how much it must cost you. I wish every medical professional could read your words and see the reality of this illness. It is hard to believe that in one of the richest and most medically advanced countries in the world you have been left without proper end of life care. I hope stories like yours will help to change that. Praying for you and your family through whatever lies ahead.

  12. Oh Fern, I’m so sorry to hear this, but totally understand your thoughts and decision.
    I hope you get the care you deserve and your actions will help sort your issues naturally and help you become better.
    Keep in touch, thinking of you
    Gentle hugs
    Stacey

  13. Just found you.

    Thankyou so much for being so open with us. It is so good to have these internet links to feel less alone.

    Very gentle hugs and thoughts winging across the miles.

  14. I found it hard not to cry when I read your post, you are a very brave and ultimately classy lady. I realise my opinion makes no difference but I support your choice. There are no words that can ease your pain or make your situation any less difficult but know you have people who have never met you but who are thinking of you. Your blog is very special because it is honest and actually says how hard ME is to cope with, thank you.
    The medical profession should hang their heads in shame at the way ME patients are treated and I can only hope your family gets some support in the hard days ahead.
    You are blessed to have a family who loves you enough to support your wishes at this time and I send my best wishes to them, they are special people.

  15. My thoughts are with you and the people surrounding you during this time. I don’t know you or your family but sending many blessings. Thank you for sharing these moments with us.

  16. I am incredibly moved and saddened by your post. Thank you for sharing your life and this courageous decision with us. I, too, am enraged that you may be going through what should ideally be a peaceful time without medical supervision. I pray you are pain-free and surrounded by loved ones and that your family gets the support they need. You are brave beyond words.

  17. Brooke ,
    Thank you for your recent update.While I was talking with a nurse today , I heard my internal voices screaming and shouting in silence. “Please help me, please care, please understand ,I don’t want to do this alone…… I beg you to listen.I hurt so much and my body and mind are broken.Rescue me and save me, I am so very tired of fighting my struggles emotionally and physically…….will I ever truly get a break.No one, no one seems to understand”. Another voice,”Please don’t let anyone notice my suffering . PLEASE enable my to keep it hidden. Kelly, I beg you not to be obvious or odd.Do not ask for help, do not share your needs. Hope that people just think you are lazy and not good for much. Don’t rest or recuperate ……absolutely don’t educate anyone on all that you deal with every moment of the day!! KEEP PUSHING to hide it all. Keep running on empty…be brave and strong. Fight back those tears. Unconditional help and care and love and understanding is for other people. Kelly, you will be just fine, you always manage to appear that most all is well” . Another voice, “Help others.There are so so very many deserving people who have things much worse.Give, Give, GIVE GIVE. KELLY, YOU are one of the lucky ones”.
    Brooke, these were some of what I heard as I simultaneously carried on a conversation outside my mind with Geri, a nurse…….and a fine nurse at that.
    Brooke, THANK YOU!! for not staying silent. Thank you for educating. Thank you for being out there in the open to be seen. Thank you for your ability to share when you ,along the way , have been losing you abilities. Thank you for accepting kindness even when we did not know how to help, but dearly still want to.Thank you for your purpose. YOU are one of a handful of people I have known that have held so many kind and gentle passions and purpose from such a very young age ( before age 20 !).Also, these were not fleeting phases. You have , during the spaces that I have known you, POURED yourself into what you believed was right and humane and decent. You have fought for your needs and rights since “forever” AND fought for those who did not have a voice or had not found one………for all life in God’s Kingdom. Thank you for accepting and sharing your limitations , acknowledging them along with your gifts in life. Thank you for the grace and bravery and other virtues you display while taking ownership of your trials in life. Thank you Brooke, for sharing humor, good news, excitement, pride and joys in your life. BROOKE, THANK YOU for speaking back to my internal voices, and speaking up to them.Thank you for your acceptance of differences and avoiding judgment. There is not a perfect way to live, nor a perfect way to die. They are both important, which is why you will always be real……you will not cease to exist as many of the decisions you have made in your life will continue on and be REAL and authentic.
    Also, I want to add that you are skilled at composing and writing and knowing how to say what you want to be heard. You make it easy for us to love you and for me to have been with you face to face and heart to heart sharing our support and love together with laughter and tears.
    There really are not any words to express how I feel………..actually I Compose music and paint as a way to express as I cannot always find words. KNOW that you are in my music Brooke and you already know you are in my painting. You will continue to stay in my heart.I will continue to work on me too. If I have even been the slightest ray of hope in any of your life , great. You are a giant inspirational ray of hope to myself and so many others to be sure.💝💖🙏

  18. Brooke,
    I’ve learnt so much from you and appreciate everything you share. I have a lot of admiration for you, as well as your husband.
    Thinking of you and sending love,
    Sasha

  19. Dear Brooke,

    Thank you so much for sharing yourself so intimately with all of us through your blog. I read all of them today. Your courage and strength is an inspiration and I respect your decision.
    Like you I have chosen the hummingbird as an homage to Jodi Bassett and her excellent website, and also now to show my honor and respect for you. May you find peace on your journey from this life to the next one.

    All my love,
    Jere

  20. I’ve not visited your site before. As another ME sufferer, I’m so sorry to read how bad your illness has become.
    Here is a hand to hold, and much love for you.

  21. Dear Brook

    I’ve only just come across your blog via a post on Facebook. I’m so moved by your writing, I’m struggling to find words that’ll adequately express what I want to say. My heart goes out to you and your husband. Your story and others like it need to be told and I’m in awe at your honesty and courage to tell it. I pray you can both find peace at this stage, and I also pray for a miracle that will save you. God bless you both.

    Alison (in the Scottish Highlands, 14.5 years with moderate ME)

  22. Dear Brooke: Altho’ I do not know you I am touched by your blog post today. I saw it on KraftyCreations & had to read your entire post. You are a brave & courageous woman. I will pray that you & your husband will find medical assistance & that you can go into the Hopice & have dignity, care & the peace of mind you so totally deserve.
    Thank you for sharing your story; your history…you have touched another person today.
    With love & respect,
    Sherri-Ellen & Nylablue
    P.S.: My husband Paul was a c3-C4 Quadriplegic who had so many health problems he had a DNR order put into place. I remember the Doctors trying to go against the order & I would not allow it. I loved that man with every fibre of my being but his wishes were ALL THAT MATTERED! I know I did the correct thing to uphold his DNR order…In Love we have to be willing to Let Go…..

  23. I just read your latest blog post and I just wanted to say that I have experienced the same severity of symptoms where I could not hold any food down and where I would constantly vomit anything I put in my mouth and this happened after being pushed so far beyond what I was capable of doing because at the time I didn’t realize that exercise or pushing yourself was a very bad idea when it come to this illness and that it makes it 100 times worse. I was able to still just about hold some drink down and had to take vitamin drinks slowly throughout the day through a straw but I would even vomit those up a lot. Luckily my GP prescribed me some anti-sickness medication called Metoclopramide and I rested without moving for a few weeks and also had carers to help me with preparing food, as I am bedbound. I was very lucky that the anti-sickness pills helped me to be able to start eating again but I think you should try to get hold of some, just incase this is a neurological symptom that can be altered and turned around with meds. Another thing I started taking was very high dose probiotics. I think you would need to speak to a GP but I would suggest trying everything before giving up. Another huge issue with ME is severe adrenal fatigue, which a lot of people with ME suffer from, the more they push themselves and this may be another reason for the severe vomiting and your digestive system not moving. I started taking a supplement called Nutri Adrenal and this helped me to feel so much better, at a point in time where I thought I was going to die I was in so much pain. I am still ill but I can now tolerate looking at the computer and listening to music or watching TV whereas I could never do this before for years. I just wanted to give you some hope, as I feel terrible for the situation you’re in and if you ever want to talk about any of this or ask me any questions my email address is talidennerstein@hotmail.com

  24. Hi, this page has been making the rounds. I really hate to say this because I know how it feels when people say, “have you thought about…” and then the say whatever it is I’ve probably heard of a zillion.

    But, I’ve had ME for 21 years and this past year I’ve had a slate of new symptoms including tachycardia, agitation, and yes, nausea and weight loss. Mine comes and goes but I’ve dropped 12 pounds in two weeks recently.

    So, I’ve been diagnosed with POTS, but they think it’s part of a larger autonomic nervous system dysregulation and suspect something called gastroparesis. That’s when the food doesn’t move through the digestive tract in a timely manner. It can be the stomach isn’t emptying after a few hours like it should and which causes an immediate feeling of fullness and nausea, or that the food is sitting in the small intestine for too long which can cause malabsorption and malnutrition.

    I’m just posting this on the off chance that you might read it and hadn’t heard of this or considered it. It’s treatable to some extent.

    I’m sorry you’ve been through so much and everyone in the community is very saddened by your pain.

  25. I came went to read your entry ‘Big Changes,’ after reading this entry in order to find out why you are without Hospice care when you want it and, obviously, need it. Your story is heartbreaking and infuriating. I am an ME patient fighting for disability now and unlikely to get it. I’ve been sick since the early ’90’s but was able to, by the hardest, continue working as an RN until 2007. I was mostly a hospice nurse for most of the last decade I practiced. I am so sad to know you are being caught in Medicare’s crackdown on hospice. Like most of their crackdowns, a few cases that get overblown result in more and more odious criteria that mostly endangers legitimate beneficiaries like yourself. If I had any way, I would come there myself and take care of you but I know that is only part of the problem as you’ve lost the coverage for medications needed to control your symptoms. I became a hospice nurse after years in oncology because I never wanted patients who were coming to the end of their journey to suffer the pain and indignites you are going through and am heartbroken to know these changes to Medicare’s hospice benefit will mean you and others will now be left at this important time without the help they need and with a lot of worry and expense that will take time from them and their families. There are no words to do justice to the sorrow I feel at your situation. I, too, will be trusting your doctor to find an answer and my thoughts will be with you. May you be comforted in your suffering by angels. There are surely some around who can find the answers to allow you to be cared for as you need and most decidedly deserve.

  26. Dear Brooke,
    As painful as it was to read your post, you spoke to my heart. As a family member of a sister who is suffering from ME, you helped speak to me on her behalf. You helped me understand her daily struggle and pain. You helped me know that my struggle daily with what to do to “help” her and how to be there for her is nothing in comparison to her struggle every hour of the day. Hearing that all she is able to eat is an avocado and her tea terrifies me an yet you explain how ME affects EVERY aspect of one’s well being. My sister is a former GP, but ME has stolen her life. And as you explain, the medical community (which she spent so many years giving her life to) has turned their back on her. Thank your for your courage of sharing your story. My heart is with you and your family, and for all those suffering through this nightmare of a disease.

  27. As you have already noticed, this post is popular on facebook.
    I have reached the same conclusion you have, and a couple of months ago I also had this exact problem. Now I know you say you have tried almost everything, but just in case there are some thing you haven’t tried yet, I will mention what worked for me.
    It is a prescrioption-free medicine called Omaprezol, and may be overlooked by doctors simply because it is prescription-free. It took me some days to find out exactly what worked though, and i had to be very precise once I found it. 2 minutes exactly before a meal, any longer and I would throw the omaprezol up, any shorted and the food would come up.

    Now that it’s said, I will apoligise for making a suggestion you probably have already tried, and are tired of hearing about.
    And be careful about probiotics as others have suggested, they made me worse.

  28. Oh dearest Brooke … So soon, so quick 😦
    I’m filled with sorrow and at the same time I’m livid. I’m livid that none of the ‘patient organizations’ is doing anything to improve the horrible inhumane situation we as severe ME’rs face. They should be deeply ashamed of themselves. Knowing fully how dire the situation for many severe patients is, no lobbying for home care, hospice care, home help, takes places. My anger together with my sorrow knows no bounds every time we loose another one of our own.

    Rest assured I will use some precious energy to write emails to those responsible. No one should have to go through where you are going through.

    Know that I am with you in spirit and will hold your hand all the way. I pray that the Universe will set your soul peacefully free surrounded by our spirits and those who love you.

  29. Brooke this is the first time i have come across your blog and ive just read some of posts x iam full of admiration for you for your candour and bravery during your hellish journey living with m.e x i can appreciate just how much writing takes out of you x im so sorry you arent getting the care you so badly need and deserve it is a situation i have heard of many times and affects several of my fellow m.e friends so im aware of just how bad it can and often does get x i can only hope your doctor comes through for you and puts some kind of care plan into place for you x my thoughts are with you and i will pray for you x sending love and hugs xx

  30. I am also an ME sufferer. I was saddened and moved to read this, and I am struck by how full of dignity and grace you sound. Blessings.

  31. I have only just come across your page but from a fellow sufferer I am sending lots of love. If you can listen to music put india arie on her music makes everything better. Remember too that we are not our bodies we are souls and your soul will be set free, and your soul will be one of the strongest and bravest souls out there! I’m so sorry you have had to suffer….. I wish I could put an end to this for everyone.

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