Tag Archive | health

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.

Outside The Illness

While this blog is primarily focused on my life with Myalgic Encephalomyelitis, I’d like to start things out by saying, “I am not my illness.” It would be easy to get lost in an overwhelmingly controlling, isolating illness such as this. To allow it to define me, to become all that I think and talk about. However, allowing this to happen would only steal further from an already greatly diminished quality of life. It is important to spend time thinking about other things, even if I cannot physically participate in them anymore. I thought I’d do a post on some of these things, allowing readers to get to know me a bit more fully.

So what are my interests? The first thing that comes to mind is dogs. I love dogs. I love working with dogs. As a teen, I spent hours each week at the local shelter working with “problem” dogs to make them more adoptable, chasing down strays to earn their trust and capture them, and training my own dog to do cool stuff. As an adult, as soon as we could afford one, my husband and I adopted a beautiful greyhound, DeeDee. I selected her with the intent of training her to do pet therapy, and soon we were visiting nursing homes, physical rehab centers, and a local hospice center, bringing smiles to people’s faces. When my health began to sharply decline, I trained DeeDee to help me around the house. Eventually, I trained her to become a full service dog. She went everywhere with me, giving me at least a full year more of leaving the home than I would have had without her. During that last year, so many memorable things happened: my grandpa’s 90th birthday party, my brother’s college graduation, holiday celebrations with family, my mom’s wedding, and much much more. DeeDee was by my side through it all, enabling me to safely create memories I cherish to this day. Having DeeDee by my side continues to help me even now that I’m bedbound. I’ll write more about service dog tasks for ME later, but for now, my point is I adore dogs.

Also, I enjoy all things language. I did freelance writing for a few years, spent three years teaching English as a Second Language, became moderately fluent in Mandarin Chinese, enjoy writing poetry from time to time, and love to read or listen to audio books when my illness allows. I used to read a lot of the classics, but nowadays my brain has difficulty processing complex thoughts and theories, so I tend to stick to more popular fiction, YA romance, easy science fiction, etc.

Third, I enjoy the outdoors. Nature is relaxing, so even though I cannot go outdoors myself anymore, I enjoy nature based imagery, nature videos on YouTube, etc. When that is too much for my eyes to process, I sometimes close them and imagine myself in some of my favorite outdoor locations. Nature is absolutely stunning to me.

Fourth, I grew up in a very musical home. I used to play multiple musical instruments – piano, flute, and my favorite, the viola. I almost went pro on viola, but eventually stopped playing instead. I still enjoy listening to music when it’s not too difficult to process physically. My favorite genres are easy rock, some pop, classical, some oldies (80s and 90s mostly), and movie soundtrack type stuff. I absolutely adore Peter Hollens on YouTube. If you’ve never heard him, check him out!

Fifth, I used to be smarter than I am. My IQ dropped over 20 points overnight when I developed ME. I have multiple official tests to prove it. Thankfully, I had those 20 points to spare, so I still get by okay with careful planning and a bit of assistance, but I sure do miss my brain and what it used to be capable of. Everything is much more difficult now. But I suppose it all builds character or something of that nature, so I really shouldn’t complain.

And finally, I should probably mention that I am in hospice. In the US, in order to receive hospice care, a doctor must sign a form stating you could die within six months. And I could, thanks to the serious, progressive nature of my illness. Based on that, I debated whether it was even worth it to start this blog. I decided it’s never too late to start anything. Even if I only get a few posts in, at least it’s something. And if I get more than that, that’s something too. We’ll see how things play out.

Thank you for joining me on this journey. It won’t be boring, I can guarantee that!

A Fresh Start

Hello! Welcome to my blog. I recently decided to create a fresh start here. I had initially planned to post primarily video logs (vlogs) here in order to show the progression of my illness. However, I have found that the energy required to record a video, upload that video, and post it here is more than I can muster. Sooo text it is.

If you’re not yet familiar with the illness Myalgic Encephalomyelitis, I strongly encourage you to view the “About Me” page by clicking the link near the top of this page. Please note that ME is not the same diagnosis as CFS (Chronic Fatigue Syndrome), despite the hundreds of websites which claim otherwise. There is a plethora of misinformation about this disease out there, and accurate information can be difficult to come by. I will write more about this in a later post, but for a basic summary of the differences between ME and CFS, I highly recommend visiting this page: The Misdiagnosis of CFS.

Thank you very much for reading here. Be sure to come back often or subscribe for future updates!