Hello, everyone. It has been eight months since my last update, and I figure it’s high time I post another. My health has significantly deteriorated, and I have spent months, literally, trying to get this written. I hope it makes sense and does the job of explaining what has happened and where I am right now. I also want to take a moment to express my extreme gratitude for all of the support that’s been given – both here on this blog and elsewhere. Those of you reading this are some of the strongest, most amazing people on the planet, and I am blessed to have gotten to know you.
So what’s happened since my last update? The first thing you probably want an update on is the food situation. Due to extreme nausea, gastroparesis, and the inability to keep food down, I went more than 30 days without a single bite of food. I don’t know exactly how many days I went without – I lost count at thirty something. As expected, my nausea levels went down a bit once I was no longer trying to force food into a body that couldn’t process it. In fact, after the thirty- or forty-something days went by, my nausea – while still a constant presence – had improved to the level that I felt perhaps I could keep a bite of food down. There were several foods I wished I’d been able to have one more time, so I began trying a single bite at a time on my better days. Sometimes I kept it down, sometimes not. This pattern has continued, although now I can sometimes keep a small succession of bites down in one go. Even when I do keep the food down initially, because of the gastroparesis, I will sometimes throw it back up later that day, or even the next day. Basically, if I throw up at any point within approximately 48 hours of eating, I lose the food I’ve fought so hard to keep down. The process of eating is also difficult for my body in other ways. Among other things, the work involved causes my heart rate to skyrocket, and often my jaw muscles fatigue so quickly it takes all of my concentration and willpower just to chew enough so that I can swallow. Sometimes my jaw becomes paralyzed. Some days I eat a bit, some days I cannot. It all depends on what my body’s doing that day.
Overall, I am not getting anywhere near the amount of calories the average bedbound person needs to survive. Yes, I’ve tried liquid forms of nourishment, but those are often more difficult to keep down than a plain form of solid food. I have lost weight, but I am still here. I’m not sure how many calories I’m keeping down, but I can remember even as far back as several years ago gaining weight on less than 200 calories a day (some people with ME have this issue, while some have just the opposite). The running theory in my case regarding how I am surviving on so little food each day is that because my digestive issues came about so slowly, progressing over the course of years rather than hitting all at once, my body somehow trained itself to survive on less food than the average person needs. If, as a healthy person, I had suddenly gone from 2,000 calories a day to less than 200, I would likely have starved to death. But the body is amazing in its ability to adapt, given enough time, to survive in even the craziest situations. We (my medical team and myself) believe this is the situation for me.
That said, my condition is still listed as terminal (though not because of the nausea). Due to Medicare changes, many people who would formerly have had hospice care until they died are going without, and I am one of those individuals at this point. I have been in hospice, but right now I am not. I am, however, receiving medical care from home as needed through my primary doctor. He has taken the time to learn about M.E. and has truly gone the extra mile to ensure I am not left without care – even going so far as to give me his personal promise that I will never again be left without access to the medical care I need. This makes me one of the lucky ones. Many severe M.E. patients are left without access to any care at all. I’ve been there, done that, and have no desire to go there again. My doctor and I may not always agree on everything (ie, the best use of the only medication we’ve found to even touch my pain), but he is a rarity and an absolute godsend, and I would be in a world of hurt (okay, much worse hurt) without him!
The same would be true without my husband, who among other things has had to manually deliver shots to me every two hours for the past six months (long story, but it’s our only option right now). He is a hero in every sense of the word. My mom also continues to be heavily involved in my care, staying for hours at a time each week (along with the occasional overnight stay) to give my exhausted husband a chance to rest and/or get out and do some of the things he enjoys. My dad and brother have also been amazing in providing various forms of essential support. I understand not all ME patients’ familes are so understanding, and consider myself truly blessed to have people like this in my life.
I want to write more, but it has taken me far too long just to get this much out. Please know that I appreciate the comments that have continued to come, and I do read each of them personally as I am able. Unfortunately, I cannot respond to all of them, but I do read them. I would like to get a post up on some of the more recent happenings in the ME world, and have been working on one in bits and pieces for several weeks now. Hopefully I will manage to get that up soon. In the meanwhile, feel free to follow me on Twitter – I often find it easier to communicate in the bite sized format found there (plus I can retweet awesome posts from other users that I may not have the ability to write about myself, lol). My username is @aroundwthehound. Also, if you haven’t already, please check out my friend Kit’s posts over at A Rainbow At Night. I’ve gotten to know Kit quite well, and she occasionally includes a one or two sentence update about me in her blog posts (although she also has ME, so please don’t inundate her with requests for info about me). She has also started a new series on ME – its history, etiology, information on the various criteria, etc. – that is highly worth the time it takes to read and share with others.
Last but not least, please continue to help us get the truth out about true, classic ME. There is some terrific, accurate information about this disease on Kit’s blog, as well as in some of my older posts here (including the most important post I’ve ever written). And don’t forget the best resource on the web for ME-related information – hfme.org. Now more than ever we must do all that we can to educate both the public and our fellow patients so that, in moving forward, we can ensure everybody gets properly diagnosed with whatever condition they have, whether that be ME or something else. Thank you.