LJIdol: Wheel of Chaos Prompt: Quality

[murielle]

LJIdol: Wheel of Chaos
Prompt: Quality
25-06-20


I was diagnosed when I was about thirty-seven/eight years of age with (what is now generally called) ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome.) At that time, I had been ill for eight or nine years (probably much longer) with a long list of symptoms and though the catalog of symptoms has been changed for political reasons a few times since, mine have pretty much stayed the same. Political? Well, funding for research is hard to come by so changing the list of symptoms to align with some other similar disease makes the money flow a little easier. Long-COVID is our most recent companion disease.

ME/CFS is what is termed an invisible disease. That just means most of the time we who have it don’t look that ill, or disabled. I have been accused of malingering, just being lazy, faking it—whatever. Even had a doctor tell me once that while she believed in Fibromyalgia she did not believe in CFS. I really liked her, but did not like that.

So, Fibromyalgia? I also have that and MCS, Multiple Chemical Sensitivity. The trifecta! Sorrows come not single spies but...never mind.

What does that have to do with Quality?

Well, in Canada we have this little thing called MAID: Medical Assistance in Dying. So, there is a lot of talk about the Quality of life in this country. More, I imagine than in other countries where they don’t have MAID. Not too long ago there were two women with MCS who opted for MAID because it was too hard for them to find a safe place to live without exposure to chemicals their bodies couldn’t tolerate. My heart breaks for them.

Quality of life means different things to different people, obviously. Once, when I was facilitating a support group for those of us with any of these diseases there was a couple who came once, one had one of the above and the other didn’t. The other’s main complaint was that they couldn’t go dancing anymore. To someone like myself who has a very restricted life and really doesn’t go out except for medical appointments, once or twice a year to church, or on very rare but special occasions, lunch with a friend and who tries to be open minded, I had a difficult time wrapping said mind around that. But, for that spouse it was a hardship. Something they had shared that they could no longer share.

Recently, my pastor asked me to write an article about what it was like to live with ME/CFS. I said I would think about it but wouldn’t promise anything. Truth be told, I was stumped. Living with this disease takes all my energy, I think about how I’m going to feed myself, what I’m going to feed myself, when I’ll be able to shower and will I be able to wash my hair when I do. Everything I do takes a lot of thought and planning and prioritization. And there are some, I’m sure, who would say I have no quality of life. I disagree.

I can still love, feel joy and laugh, and reach out (by phone) to friends. I can still pray and write and read and knit and do many things that are gentle, slow activities that I enjoy enormously. And as difficult as my life may seem, I’m not interested in the alternative.

Back in the Fall, my doctor put me on a new medication. It was a disaster. I explained to her that it hadn’t just put me back a few weeks, months or even years, it had put me back decades in my journey to recovery. As heartbreaking as that has been, ending my life is just not an option. I suppose it comes down to how we each define the quality of our lives. If I can still comfort a friend going through a hard time, if I can still pray for those who are suffering, if I can still offer a little hope through peanuts and water to a squirrel or two, or kitty-sit the pastor’s cat for a week or so, I have purpose. I have joy. I choose life.

Deut. 30:19.

Comments

[used_songs]

Thank you for this inside view of living with ME/CFS.I guess each individual has to decide what they can live with.

[murielle]

Thank you so much for reading, and your kind words.😊

[bleodswean]

HUGS HUGS HUGS

I'm so glad you wrote this, M. Beautifully done. The prompt was just perfect for this, for your introspective thoughts bravely shared. Really happy you're here (literally and Idol-wise)!

[murielle]

Hugs you back!

Thank you so much, E! As always your comments are balm to my soul. I'm glad to be here, and here in every way. ❤😊❤

[tonithegreat]

I agree that quality of life was such a natural place to take this prompt. And I didn't get any inspiration in the way of fiction, so I also wrote slice of life. Yours is such a well crafted intro post. Glad to be writing here with you again!

[murielle]

Hi Toni!

I had three ideas but ended up going with a fourth. I'm so glad you liked it and I can't wait to read yours. 😊

[fausts_dream]

I can't speak on at what point life becomes too much agony. My brother took his life when it seemed like he had the world if not at his feet then certainly within his grasp.

I do know that the world is a much better place with you in it,and I, perhaps selfishly hope it will remain so for you for a long time.

[murielle]

I am so sorry for your loss. Taking one's life is a profoundly personal choice, I'm not sure anyone else could ever truly understand. ❤

Thank you so much for your kind words. They mean more than I can say. ❤

[hafnia]

I'm familiar with MAID (and the criticisms thereof...), and found this a really interesting take on the subject, given your own illness and how you define your quality of life. It's very raw and very emotionally honest in a way that I don't think many people manage — thank you, and well done. ♥

[murielle]

Thank you SO much. ❤

My position is personal, how could it be anything else. A lot of people who have what I have made an other choice. I guess it comes down to what you can bear. Used to be, children were the highest statistic, because, bless them, they don't have the life experience to know that things can change and even get better over time. This is beyond heartbreaking, it's soul crushing. (Sorry tmi.)

Thank you! ❤❤❤

[erulissedances]

" I have purpose. I have joy. I choose life."

Yes. This!

It isn't always easy, and it isn't always fun, but it really does beat the alternatives - at least most of the time. Thank you for sharing your unique circumstances and life POV. I found it enthralling and enriching, and I'm so very glad you're still with us to be able to share it.

- Erulisse (one L)

[murielle]

Aww! Thank you! Bless you! So am I! ❤❤❤

[muchtooarrogant]

First, thank you for sharing such a personal topic with us. For anyone, no matter how they live, life is what they make of it. In addition to the other things you listed that give your life meaning, please don't leave out your writing. Reading your stories and essays has added to my own life experience and insight, and I would deeply regret that loss.

Dan

[murielle]

Aww, Dan! Thank you! And right back atcha!

I do get so much out of LJIdol. Reading your work has enriched me in so many ways.

Here's to another season of fun and inspiration.

Guess when I got you pun? Middle of the night, drifting off to sleep and it hit me, bam! List! Listing! LOL! Thank you for that too!

[muchtooarrogant]

LOL Of course. Horrible puns that you don't get until midnight are a free service provided by MTA. (grin)

Dan

[murielle]

There is no such thing as a horrible pun. I, however, can attest to the existence of people too slow to get puns. 😊

[marjorica]

I hope that it’s not too annoying to call you brave. Thank you for sharing your experience and insight.

[murielle]

Thank you so much! Not annoying at all. (Blushing) Very kind. Thank you!❤

[halfshellvenus]

The other political aspect to these conditions (and which tends to determine funding) is that they are overwhelmingly experienced by women. And we still haven't got past the sexism of doctors who think patients are either imagining their condition or that, alternatively, they should "suck it up" and get over it.

I'm so sorry for the setback you're experiencing. That's just awful, and SO unhelpful. But I'm glad you still find joy despite how difficult things are, and I hope you'll be with us a good long time. Ideally, better than you're doing right now. *hugs*

[murielle]

Yes! Absolutely! But the prejudice works against men with it, too. They have a much harder time getting financial support because they're men.

Thank you! ((Hugs)) One day at a time, and I take as long as I need to do whatever. I hope I'm around a long time, too. Though it's funny, now that I'm 70, I do view time differently. <3

[legalpad819]

Sending you some big hugs. I'm also an "invisibly diseased" person, and it can be very hard! I'm on a medication now which helps a lot, but there are still good days and bad days, and most people do not understand. Remember- every day is a blessing- even the hard ones.

[murielle]

Thank you!

Gentle hugs back!

I'm so glad to hear you have found some medication that helps. I pray it continues to do so. ❤

And, yes absolutely, every day is a blessing! ❤

[rayaso]

I'm so glad you wrote this. I'm sorry you have all your health problems. You must be very strong to live with them. Invisible diseases must be the worst. The outside world can be so harsh in its judgments. There is no excuse for a doctor who does not believe in CFS. CFS doesn't care if a doctor doesn't believe in it. Your coping skills must be amazing!

[adoptedwriter]

So well explained! Take care. “ Invisible “ are still real.

[murielle]

Thank you so much! ❤❤❤

[roina_arwen]

If you don’t mind me asking—and you don’t have to answer if you’d rather not—but I’m curious how a medication could put you back decades in your recovery?

I’m sorry to hear that you have to deal with this. *gentle hugs*

[murielle]

Thank you.
I don't mind you asking, but do you mind if message you. It's personal and I need time to explain. Thanks.

[roina_arwen]

I’m perfectly fine with messaging. I don’t want to make you uncomfortable. ❤️

[murielle]

Thank you.

[xeena]

Ugh I'm.so sorry you have to deal with this *hugs* I can really relate to some of it and it can all be so overwhelming at times. I think you're such a string person *hugs*

[murielle]

Thank you so much, Xeena!

I'm so glad you're taking part in this chaotic adventure. <3 <3 <3

[alycewilson]

I had no idea that you had this condition. Thank you for opening the door and allowing us a glimpse into your experiences.

[murielle]

Thank you so much, Alyce! You're so kind. <3

[gunwithoutmusic]

I'm reminded of the episode of The Golden Girls where Dorothy had to jump through so many hoops to get a CFS diagnosis, no one believed her. I was just a kid when I saw that episode for the first time, but it really stuck with me and taught me not to discount invisible disabilities. Thank you for sharing this with us. :)

[murielle]

I remember that episode too!
Thank you so much for your very kind words, S. So great to see you here again and to read your words. <3

[static_abyss]

Thank you for sharing your story with us. You have such a lovely attitude towards your life.