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!


6 thoughts on “Outside The Illness

  1. Good evening, Brooke. I definitely think it’s worth it to start this blog. I’ve already enjoyed your recent posts. As you say, we are always capable of new things, even to the very end. I hope you don’t find my interest morbid (possibly less so, since I have M.E., also), but I can barely believe you found a doctor to get you hospice care. I don’t suppose you’re in the South? I might could snatch up this doctor! That’s actually a fear of mine, based upon treatment I’ve received in the past, that when this gets worse, no one will take it seriously and I’ll be without any real help to ease my suffering. If the disease has to advance to this, it makes me very happy to know you have somehow found a physician that can get you the care you most certainly deserve. Everyone deserves dignified care at the end of their life.
    Looking forward to whatever you’ll want to share,

    • Hello again, Kit! Thanks for the support. I’ve enjoyed reading your blog comments so far as well.

      My case of ME has taken the progressive/deteriorating route (I’m a firm believer there are subtypes in ME, much like MS, which take slightly varied routes), so while it did have a very definitive (and damaging) start, it has consistently progressed through the years – faster when I pushed harder, slower when I let up, but always worsening week by week, month by month. One of my fears, once we (my medical team and I) figured out what was going on was being left without proper care once I could no longer safely leave the home. Unfortunately, that did happen for about six months. What had happened was that as my disease progressed to limit the frequency of outings more and more, I began having to stop seeing various specialists because my body could not recover quickly enough between all the appointments. Eventually I was down to just one doctor left, whom I saw 3 or 4 times a year. The problem with that was that when I could no longer leave home (after some close brushes with death due to the outings I had made), this doctor was not of a type who is accustomed to working with hospice or homebound patients. He basically washed his hands of me and told me to try other doctors. All the other doctors I called either had never seen me, or hadn’t seen me in so long they also refused to treat me, saying it was the responsibility of the last doctor I’d seen to make sure I received proper care. It was a horrible situation. Traumatic, even – especially because I frequently faced level 10 pain (where getting eaten alive by a tiger literally couldn’t hurt worse) with no hope of future treatment.

      Thankfully, my mom is also in the medical field. She was absolutely broken up and furious that nobody was giving me the care I so desperately needed. She lives across the country from me, so while she was visiting she asked my permission to meet with a well respected local doctor on my behalf and explain my situation to him. She was able to talk to him as a fellow medical professional, and gave him loads of materials on true ME, as well as on my particular case (symptoms, tests that were done, etc). He also got my info from my previous docs. This doctor frequently works with hospice and decided, along with the medical director of hospice, that hospice was the best fit for my needs.

      Hospice is required to do frequent re-evaluations on the suitability of their patients for that care, so when that happens their medical director (a doctor) comes to my home himself to evaluate me. Other than that, the head of nursing does almost all of the in person interactions with me, working together with a whole team (my treating doctor, the hospice medical director, a bunch of hospice nurses, a pharmacist, and a social worker), primarily looking for ways to lower pain.

      I’m not sure if any of that helps you, but it’s what ended up working for me. My biggest fear right now is living too long. We know at this point the ME will kill me, but as usual with this disease, the time line is a bit iffy. Both doctors agree it could happen within six months (the requirement to receive hospice care), but I also know if I live too much longer insurance won’t want to pay for hospice care anymore. I try not to think about that very much. There is in-home health care available locally, but I don’t know if my insurance would cover it.

      Unfortunately, I do not live in the south, so my doctor probably wouldn’t be much help to you. I consider myself *very* blessed to be receiving such wonderful care right now. I know firsthand what it is to be without it, and I know many, if not most, severe ME patients are in just that situation. I hope if the time comes you are unable to go out that you too are able to find good care. And I hope someday the situation changes so all ME patients have access to the care we need!

      • Oh, my! Thank you for such a spoon-intensive reply, I know how much energy it can take to concoct these things.

        I completely agree there must be subtypes, just like other diseases tend to focus their damage on wherever the person is weaker.

        It does help to think that I could focus on a doctor who frequently encounters hospice situations–I never would have thought of that on my own, so thank you! In fact I am, as of January, searching for a new primary physician, as my doctor of THIRTEEN YEARS went to another state without so much as a phone call. (And I only found out the reason by asking around.) Their front office never was too caring, but I never would have thought they’d just shut down without even asking me if I wanted my records, or giving me notice to find a new doctor. THANK GOD I had previously gotten all of my records for another reason several years ago, and subsequently demanded a copy of every additional test up until 2013. I mean, I don’t even know where I’d be if I hadn’t done that, and had lost my entire medical history. Ahhh. This is honestly the first I’m thinking about that and how glad I am it didn’t happen… Ahhhh!

        So I’m trying to find a doctor to take on my case because my disease is also progressing (steadily, though not rapidly) and I will need more help besides pain management, soon. Bless the brave soul who decides to try and manage me…

        And bless the doctor who has decided he wants to help you. I’m sorry you, too, have had such horrendous treatment by others’ ignorant hands. In my eyes, if any of them had any idea how much you needed help, they would have done so, like your current doctor. And again, I’m so happy to hear that you are being taken care of when you most need it. Thank you again for your advice, it did help, and I appreciate your spoons. 🙂

      • Thanks! I’m sorry to hear you, too, have had a rough time with doctors. I think most doctors get into the field for the right reasons, but somewhere along the way they get broken and messed up by the politics of it all (insurance companies, etc). So many become almost uncaring in their actions. It’s really too bad we have a system that can take someone with such good intentions and mess them up so badly. 😦

        In any case, thanks again for the reply! I hope you have a great day today.

  2. Hi. I am also a keen writer who also loves languages, and I used to be really musical too (piano, flute and singing, though I can’t do any of those anymore.) I am housebound with ME, and I think I have the relapsing/remitting, though with every relapse I have found myself more disabled than the last. I hope I’m not just slowly deteriorating…
    I am really sorry to hear how unwell you are (that’s an understatement)…. and of the incredible hassle to get any sort of medical treatment. I think the comment you wrote in reply would be worth a whole post in itself. So few realise how severe ME can be.
    I’m really glad you’re writing. Looking forward to reading more.

    • Hi Tanya – It sounds like we have a lot in common! I’m sorry to hear you’re struggling so much with this illness. The relapsing/remitting type has its own cruelties – giving hope only to take it away again. That must be so frustrating and difficult to live with at times! I’m so glad you found my blog, and look forward to getting to know you better through future conversations! Hang in there!

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