Tag Archive | terminal

An Update For Those Interested

Hello again! In my last several posts, I promised a more personal update was in the works. In fact, this update is far overdue, and I want to apologize for that. I especially apologize – deeply – to the individuals who mentioned their concern about whether I was still alive or not. I absolutely do not want to worry anyone unnecessarily, so the end of this post will list a few surefire ways to get an update should concerns arise.

In my last update I spoke of one of my biggest challenges being the matter of keeping solid food down. I had recently gone through a 30+ day period being unable to keep anything down before finally managing a bite or two at a time. This is still very much an issue for me. I still routinely go days or weeks without solid food, often throwing up anything I try to eat. Sometimes I am able to keep portions of a meal replacement shake down, sometimes not. This is related to the issue of gastroparesis which is common amongst ME sufferers. Some patients choose to accept either tube feeding or TPN as a medically assisted means of getting the nutrients they need. I made up my mind long ago not to accept any life prolonging measures, and in my case I feel that includes being tube fed. This sort of thing is a very personal decision, and not something anybody decides lightly. I respect those who choose to utilize tube feeding just as I respect those whose choices mirror my own. In my case, knowing that medical technology is nowhere near being able to repair the type and extent of damage caused by ME, I choose to let this illness play itself out on its own timetable. I have no desire to rush things, but also no desire to prolong the suffering this disease brings every day to me as well as to those who love me.

That said, my family has been amazing throughout everything this illness has caused. As many of you may already know, my husband was forced to quit his job years ago in order to care for me full time. In addition to all the usual tasks a carer would perform for a bedbound family member, for the past three and a half years my husband has been tasked with delivering subcutaneous shots every two hours, around the clock. That means he never sleeps more than two hours at a time. While this has caused him unspeakable exhaustion, he never complains about anything I need. If I ring the bell half an hour after he lays back down in the middle of the night because I start to vomit, he comes and holds my hand, then deals with cleanup – without complaint. If my bowels decide to do their thing at the worst possible time, he takes care of that too – without complaint. When my pain spikes or my nausea is right on the edge or I’m faced with a two day migraine, he says things like, “I’m here for you. Tell me what you need. I’ll do whatever I can. Let me know what I can do.” And he always tells me that he loves me. 

I worry about the toll caring for me the way he does must take on my husband. If nothing else, getting up every two hours for three years straight can’t be good for him. But those shots are the only thing keeping me away from level ten pain, which for me is a level of pain where being eaten alive – not just attacked, but literally eaten alive – by bears would actually hurt *less.* And while I do have a subcutaneous port to avoid getting stuck with needles twelve times a day and risking added seizures and infection, we cannot have an automated pump in my current situation because we have no access to in home nurses to maintain it, and insurance wouldn’t cover it anyway. My doctor is amazing for offering me the most helpful treatment he can and being willing to do home visits – no other doctors in my area offer that to any of their patients – but he cannot find a way to get in home nursing covered by my insurance, and we can’t afford the exorbitant cost of hiring them on our own. So my husband does what he has to do. Spouses don’t come much better than him.

Others in my family have also been hugely helpful. My mom stays with me approximately ten hours a week so that my husband can run errands and help teach martial arts in town – a passion of his I’m glad he can continue. My mom does this *on top* of working eighty hours a week to earn enough money to help us make ends meet. My dad also helps us in huge ways every month, especially financially. I know he has sacrificed things to help us out, even though he tries not to let knowledge of those sacrifices slip. My brother has been a tremendous source of love and support for me, and he also has sacrificed to help ensure my needs are met. I also have an aunt and uncle who live in a separate apartment two floors up that not only offer emotional support to myself and my husband, but help in many other ways as well, including filling in (sometimes on very short notice) when hubby needs to slip out and my mom is working. Believe it or not, there are still others I haven’t mentioned here who also help in tremendous ways. I cannot say enough how incredibly grateful I am for all of these individuals. I know from hearing other ME patients’ stories just how lucky I am to have this level of unconditional support from so many different loved ones. While I wish with all my heart this level of support from them wasn’t necessary, I’m grateful beyond words that they’ve offered it as needed.

I’m also incredibly grateful for the support I’ve received online. The sheer number of tweets, comments, etc welcoming me back after my absence was amazing and extremely heartwarming to experience. I wish I could say I’ll be posting more regularly, but these past couple of posts have taken a *lot* out of me. Each one takes a long time to write, and then there is the energy involved in trying to respond to the inevitable questions I receive after each post. I do have a few more posts I’d like to make, but time will tell if they’ll actually appear. I’ll do my best.

I know this update doesn’t contain a lot of new information about me, but that’s severe M.E. This disease takes us to a horrible place – often to the very brink of death – and keeps us there for years. Many M.E. patients have repeated brushes with death, only to return to further months or years of living on the brink. I am no exception. While most of my symptoms have worsened since several years ago, they’re still basically the same symptoms. I wish I could write more, but I’m honestly not sure what to say.

Before I close, I’ll mention the methods promised at the start of this post for getting updates should concerns arise that I’m silent too long. I’ve made several genuine friends through this site, and I hate to leave people hanging. First, let me re-state an important fact I’ve mentioned once before: my mom has all of the login information for this site and has promised to post here when the time comes I’m no longer around. If you haven’t seen a post from her, chances are I’m simply not well enough to post. Also, for those of you on Twitter, I can be found there. My handle is @aroundwthehound. I often go long periods between posts there as well, but I may be able to respond with a brief tweet during times when I’m not up to posting here. Finally, there is my brother, with whom I’m very close. He recently agreed to act as a point of contact for inquiries during times I’m unable to respond myself. His Twitter handle is @filterthesnow. Please don’t overwhelm him with messages (he does have a life of his own), but if you get concerned and I’m not up to responding on Twitter, my brother will certainly know the latest news.

That said, I think it’s time to wrap up here. While I’ve enjoyed getting back in touch with everyone, both here and on Twitter, the past few months working on posts have taken a toll, especially the past week or so of responding to all the responses. You guys are amazing, and I always feel better seeing others who are continuing the important work of educating about this disease – both what it is and what it isn’t. It’s good to know that the neurological disease that’s slowly taking not only my life, but the lives of many others, hasn’t yet been totally forgotten or buried by the erroneous, medically prohibited combination of ME with the variety of yet-undiagnosed conditions known as CFS. There are people out there with shovels – a few even have bulldozers – who work every day to keep awareness of this disease alive, even as more and more who have it die. To them I am incredibly grateful. Keep up the amazing work.

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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.

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!