Advance Directives and Treatment Planning, Part 1 of 2: Myalgic encephalomyelitis and Lyme disease

[ estimated reading time: 4 mins 34 sec ]
Updated Feb 12, 2016

There’s every possibility that I could be involved in some unexpected incident–a car crash, ANOTHER tree trying to land on me for a THIRD time, an abrupt, rapidly-progressive infection that takes me out overnight–but those aren’t the most likely situations. The only thing that makes sense for someone in my situation is to plan for some type of gradual decline.

I’ve had a living will for years, but someone’s situation recently made me wonder if what I had written down was specific enough to fully protect me. Living wills only cover you if two or more physicians declare your case terminal. If you want someone to express your wishes in the event you cannot communicate for yourself but aren’t yet deemed terminal, you need to declare someone your medical power of attorney. Not your power of attourney, but your medical power of attourney. You can also include in writing what you want just like a living will, and that’s a very kind thing to do for your family so they can have physical proof of your wishes.

This is especially important to me right now because it hit me that doctors just aren’t used to dealing with cases like mine. I’ve seen that time and time again over the years. Most physicians I’ve seen can’t even understand how I dehydrate so quickly. Too many times, I’ve even been told my symptoms are “impossible,” yet here I am. That doesn’t give me much hope for other situations, so if I want the best help in the event I’m unable to speak for myself–a situation which can and does happen to people with both severe M.E. and Lyme disease–I have to include specific instructions and appoint a Medical Power of Attorney.


In my current condition, where even half a child’s dose of the most basic antibiotic causes me immense suffering, I need to check the “no antibiotics” box, in the event my doctor wanted to try them in some optimistic attempt to save my life. The hospital won’t understand the consequences of someone like me going through something like that, but I do. For instance, I recently had to take ONE olive leaf extract capsule to quell the a relapsing h. pylori flare up, and ever since, my head has felt like it’s going to implode, even more than usual. That’s not even a prescription antibiotic! These extreme inflammatory reactions–herxheimer reactions–actually hospitalized me for five days in 2011, and that’s when I was able to tolerate treatment!

And if I’m unable to communicate, at what point will I think it’s no longer worth it to continuously visit the emergency room for IV fluids? When things got bad in previous years, I was going every two months, via ambulance, because the dehydration was so sudden and so severe. Right now I’m okay with that assistance because I’m still functional and it helps me bounce back. But at what point would I have to say, “This is just too much, it’s only prolonging my suffering; no more fluids, just keep me comfortable“…?

What about breathing assistance? I like the nasal oxygen, but I’m against any ventilators or breathing machines.

And I know I don’t want to live off of a feeding tube, if I’m otherwise completely incapacitated. To me, that is when it’s time to let nature take its course. People with severe M.E. are faced with this particular decision often. Many concede to a feeding tube in hopes of getting better later, or because they’re still able to participate in life in some accommodated way which makes it worth it to them to stay around. But I wouldn’t see a point, if I had so much else going on. Plus you have to add my Lyme disease to this… I think I’ve been through enough.

The only reason myalgic encephalomyelitis doesn’t kill more than it already does is the availability of life support measures. Otherwise, there would be many more people–all or almost all from the 25% severely affected group–dying of wasting syndrome, dehydration, inadequate oxygenation of the major organs, and infection.

And what about a DNR/Do Not Resuscitate? If/When my heart were to go into life-threatening arrhythmia, do I want them to try to “help” me? Right now, I say yes. But later on, I might want to sign forms telling emergency dispatchers to not electrocute me or break my rips trying to “revive” me.


There’s no way I can predict right now when I’ll decide enough is enough–these decisions can’t be made overnight–but I do know when I reach the point of not being able to communicate with my loved ones, that will probably be the breaking point.

I do not want to continue past the point that I cannot communicate, being kept alive only by machines and tubes, and I don’t think it’s even natural to want that, when the body is obviously trying to pass on in a way that would actually limit the suffering involved, if only we’d get out of its way.

We should all think about these things, whether severely ill or not, to help relieve the burden on our families when that time comes.

“The suggestion that modern western medicine can and has made life easier is countered with the fact that sometimes, it can prolong life too far, and then allows more suffering than was necessary. It is up to each person to decide what’s enough.” *

To be continued…

a rainbow at night


* Thank you, Ruth. I haven’t read the book so I can’t comment on it, but this statement was perfect.
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One thought on “Advance Directives and Treatment Planning, Part 1 of 2: Myalgic encephalomyelitis and Lyme disease

  1. Hello, came across your blog about two weeks ago when I was diagnosed with west nile, barbesia, lymes and more!
    I am going to a naturopath. She says by the end of the month the frequency medicine she is giving me will knock those co infections out, including arthritis bacteria.
    Of course I am fighting heavy metals and chelating with zinc for that.
    She wants me to walk after every meal 15 minutes. Well, sorry about that. One walk for ten minutes wipes out two days of feeling decent enough to get out of bed, and the kidney pain is excruciating!
    But I have hope. She has cured others with the same. This is what she says. She is very emphatic about it. We have had to unplug and not use our microwave because we live in a small house, and the microwaves will destroy the frequency rendering the herb useless.
    I hope anything I have said might have helped. I definetely have the same symptoms as you, and my brain and research have taken me all over the place, but now I am on a steady course toward that new goal! She thinks in a year I can be back to normal, brain fog gone, and all.
    My digestive system and my nerves, etc., all shot, as you know. Head feels like I could never describe. All joints swollen, and painful.
    Well, best of wishes for you for now. I don’t go out much. Occassionally I drive if very close by, and sometimes can’t even do that, hubby takes me.
    Sincerely,
    Bootstrap

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