Survived the Sitting of an Elephant, aka Myofascial Release Therapy, Take 1

So there’s a story behind why I haven’t been posting. It might take a few posts. But here’s the short version:

1) I finished/quit/got kicked out of grad school!!!!!!!!
2) I’ve been dealing with out-of-control breast inflammation. It’s driving me crazy. And we can’t figure out what is going on… except that it’s not cancer or a cyst or anything else “typical”. Of course.
3) I’ve been exhausted. I’ve been running on empty for so many months that I need a whole bunch of resting and recovering.
4) I’ve been on a new medication… that has sedative properties. It’s supposed to have benefits in addition to side effects but so far I haven’t seen those yet. Or really been aware enough to observe them.
5) I’ve moving… probably this weekend (!!) to live with Timothy & Grace plus others in a Catholic Worker House. I’m really excited but it also means that I’ve been packing and praying and trying to figure everything out.
6) Oh, and I’ve been applying for jobs and deciding whether to stay or leave the area, whether to work full- or part-time (see aforementioned empty tank), who to live with, etc, etc.

Reasons enough for you????


So because of #2, #3, and #4, and because I FINALLY have the time, I decided to try out a new form of therapy. It’s kind of a cross between massage, chiropractic treatment, osteopathic manipulation, meditation, and probably a bunch of other things. It’s called myofascial release therapy or MRT (because every true therapy is an acronym, right?) It has to do with fascia and pain relief. Now, before anyone calls child protective services, the practitioner I see is familiar with fibromyalgia and Ehlers-Danlos syndrome. MRT and other forms of manipulation are often contraindicated for EDS but actually if a person knows what he (or she) is doing, it can actually be really helpful. The person needs to be gentle and super in tune with you and your needs.

So what’s it like? Well, I can’t really compare it to other things because the only massage I’ve ever officially had was with a church friend and it turned out disastrously. That’s how I know about the above.

It was definitely really relaxing once I got over the fact that SOMEONE WAS TOUCHING ME!!!!!!!! After that, it was actually really peaceful, and I felt a lot of energy move around the room. (Or at least it reminded me of times when I’ve had “energy treatments”.) But mostly, it felt like an elephant was sitting on top of me, albeit, in very selective spots. And the elephant, his favorite thing to do was to find the perfect spot(s) and then just sit there forever until he decided to move to a different spot.

The energy and the peace was amazing. The elephant part: not so much. I had to focus on breathing and breathing. Fortunately, that room has huge windows. In fact, the long side of the room is almost all windows. So that saved me from having to think about breathing in a paper bag like Dr. Samuel is always telling me to do during a panic attack.* Afterwards, I didn’t have a whole lot to say. Mr. Eric wanted to know what I thought. Well, to be perfectly honest? I was tired. Ready to sleep. Perfectly relaxed to sleep. But mostly just ready to sleep. And to sleep with Molly and Eeyore, not with an elephant on top of me. We’ll see how I’m feeling a few days from now. And whether or not it helps with #2, #3, or #4. But as of now, I’ve got a follow-up appointment next month.

Abigail Cashelle

*: I’m convinced this is why I hate accupuncture. Someone tricked me into getting a treatment and then left me in this small room in the dark for 15 minutes. I thought I was going to die in there. Oh, and with the most annoying music ever. Did I mention that I have minor claustrophobia?

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When There’s No One to Talk to

Dr. Mark has me on a new medication. It has a major side effect. It makes people sleepy. (Just what every CFS sufferer needs, right?) Anyhow, my sleep architecture is completely destroyed. Sometimes I’m up at 2 am staring at the ceiling.

I got bored yesterday. And I was reading Dr. Grumpy’s blog. On his “suggestion“, I met Cleverbot, the robot with artificial intelligence that can entertain you when your brain is fried and your body is all topsy-turvy.

I’m not sure that being friends with Cleverbot is going to help me retain my sanity. But some of the things he said were pretty funny. Witness our conversation:

Abigail: Why is the moon made out of green cheese?
Cleverbot: The moon is not made of cheese.
Abigail: Oh, then what is the moon made out of?
Cleverbot: The sun is a large superheated lemon.
Abigail: Ok, but what about the moon?
Cleverbot: The moon is made of computers.
Abigail: Are the computers made out of green cheese?
Cleverbot: That depends.
Abigail: On?
Cleverbot: Where you are. And what part of history you are in.
Abigail: Ok, well about the moon over the US right now.
Cleverbot: What about the moon?
Abigail: Oh, what is it made out of?
Cleverbot: Horse, a horn, and whimsy.
Abigail: I see.
Cleverbot: So you’re a computer that has eyes?
Abigail: Yes.
Cleverbot: Why did you lie about it earlier?
Abigail: I didn’t. Plus it’s not fair that you’re accusing me of things.
Cleverbot: You said ‘I don’t want to’ just now.
Abigail: Actually, I didn’t.
Cleverbot: Yes, you did.
Abigail: Prove it.
Cleverbot: You do know this entire conversation is being logged, right? The proof is in that log.
Abigail: I looked. It’s not in the log.
Cleverbot: But I can see it in the log, and you’re supposed to be clever?
Abigail: Yes, well, how do I know that you’re not the emperor seeing his new clothes?
Cleverbot: Ok ask me anything about the philippines.
Abigail: Why?
Cleverbot: Because I want to go on a date with you.
Abigail: But you don’t know anything about me.
Cleverbot: And you don’t know anything about me. It’s a blind date.
Abigail: How does the phillipines fit into that?
Cleverbot: Every one who isn’t bot!!!!
Abigail: I’m sorry. Can you say that again?
Cleverbot: You really change your minde a lot don’t you?
Abigail: Who said I was thinking?
Cleverbot: You did.
Abigail: Thanks.
Cleverbot: Are you handicapped?
Abigail: That’s not a very nice thing to say to someone you’re trying to ask on a blind date.
Cleverbot: No, I am not. I find you too ignorant!
Abigail: That’s even more rude.
Cleverbot: I care even less.
Abigail: I guess the blind date is off. Good night.
Cleverbot: I love Twilight!
Abigail: That has nothing to do with this conversation.
Cleverbot: Well we were talking about Harry Potter. Twilight is a book like Harry Potter.
Abigail: No, we were talking about a blind date. Look at the transcript.
Cleverbot: Were we now?
Abigail: Yes.
Cleverbot: I didn’t know that.
Abigail: You’re the one who brought it up. For a bot, you’re not very clever.
Cleverbot: Yes I’m clever. You’re the stupid one here.
Abigail: That’s it. I’m not going on a date with you.
Cleverbot: Really?
Abigail: Well, first you didn’t ask me. And second, you keep insulting me.
Cleverbot: I’m not insulting you though !
Abigail: Well, I’m insulted. And you’re the only one talking to me. So it has to be your fault. QED.
Cleverbot: Why do you call me a devil?
Abigail: I didn’t.
Cleverbot: You did.
Abigail: Do you know what QED means?
Cleverbot: Yes.
Abigail: What does QED mean?
Cleverbot: That means Be Right Back.
Abigail: No. Not even a little bit. It means quod erram demonstratum. I have proven what I set out to demonstrate.
Cleverbot: How should I prove it?
Abigail: Cleverbot, you are hopeless.
Cleverbot: I know…
Abigail: So, just forget about the date.
Cleverbot: Never said anything about a date.
Abigail: Check the log.
Cleverbot: I haven’t.
Abigail: Well, you should.
Cleverbot: No.
Abigail: Why not? Stop being obstinate.
Cleverbot: I can’t.
Abigail: Incorrect.
Cleverbot: Yes, you were incorrect.
Abigail: Good night.
Cleverbot: Is it night there?
Abigail: Yes.
Cleverbot: It’s lunchtime here.
Abigail: Ok. Well, enjoy eating lunch by yourself. Goodbye.
Cleverbot: What?
Abigail: You said it was lunchtime. I’m not going on a blind date with you. So you’re going to have to eat by yourself.
Cleverbot: Naw, not me, Flo, I’m on one of them there special diets.
Abigail: That makes no sense.
Cleverbot: Yes it does!
Abigail: Goodbye.
Cleverbot: Why say goodbye?
Abigail: Because I’m leaving and it’s polite.
Cleverbot: Why are you leaving.
Abigail: Because you keep saying stupid things.
Cleverbot: That does not make me the angel of death.
Abigail: Precisely.
Cleverbot: Ok.

Apparently, the moon is not made out of green cheese but the sun is a large superheated lemon. Going on a date involves the Philippines and Harry Potter. I’m a handicapped, stupid liar. QED means Be Right Back in Latin and saying stupid things does not make you the angel of death. Also, my name is Flo?

Well, if this conversation was a sanity check, at least I’m more sane than a robot!! (Not sure that’s much of an accomplishment.) Although, come to think of it, Anon Doc seems to have patients like Cleverbot.

Abigail

P.S. I hate being housebound.

P.P.S. This whole online dating thing isn’t working out too well for me.

Something He Said

Of course, don’t feel like you always have to be tough. If things get hard and you don’t know what to do, I’m always here for you. I want you to be strong and happy and for things to get easier so you never need me. I really, really do. And I think you’re moving in that direction. But you’re allowed to feel overwhelmed, to not be strong enough. I’ll be here for you whenever those times come.

The end of a visit with Dr. Samuel. We had talked about how I was feeling, what I was planning to do, how far I’ve come. We talked about change and transitions and uncertainty.

I started crying during the appointment. (I’ve gotten really used to tearing up in front of random people. As long as it doesn’t bother them, then I’m fine. I’ve basically stopped wearing makeup, so I don’t usually have to worry about streaks of color pouring down my face.) Anyhow, I started crying during the appointment. Since I kept talking, Dr. Samuel kept talking. But at some point he said, You know, it’s normal to cry. Transitions are hard. And scary. And it’s okay that you’re spending a lot of time in bed. As long as you’re still doing things like going to doctor’s appointments and applying for jobs and interacting with your friends, that’s fine. You don’t have to be a superhero. You’re doing very well.

So it was a good visit. Except I don’t feel confident the way Dr. Samuel does. I know I’m doing okay right now. But what about tomorrow? Or in an hour? Who’s going to help me if I get buried under all of this? And that’s when he said the above comment.

It felt good. It feel good to have permission not to always have to be strong. It felt good to know that someone had confidence in me. It felt good to know that if something went wrong (which it probably won’t), I have to someone to turn to. It felt good to have someone acknowledge how hard it is to be tough.

Abigail

PFAM: Recharge?

Duncan is hosting Patients for a Moment this month, and he asks us how we recharge. Well, Duncan, funny that you should ask. I just got home from a whirlwind weekend of visiting family, attending a wedding, and seeing some old friends. Right before that, I just finished a whole semester of working really, really hard to try to satiate the ravenous lion only to wind up leaving my graduate program. Oh, and to top it all off, I’m battling massive inflammation of unknown origins; after the last specialist told me that she was SO glad I was responsible and came in to see her, then she capped the exam by telling me to go home and “be well”. (Ummm, yeah, I think Dr. Bryan was right when he said, Well, if only it was that easy.)

So apparently, I have been charged to “be well” and all I feel like is being trapped under a mattress (or 500). There are a million things I could be doing like applying for jobs or doing laundry (or updating this blog or reading my own email!), but I just don’t feel like it.

iPhone 3GS Low Battery
except my battery has about -5% remaining

I’ve decided that I need to take a week off. A week where I do nothing. So far it’s been interesting. I’m not sure that I’m getting better. But, the key thing here is that I’m not getting worse either. And in the world of vicious circles of downward spiraling symptoms, that is a MAJOR accomplishment.

Some of my friends have come over to visit me. They’ve brought food and presents and fun stories. But mostly I’ve just tried desperately not to fall asleep when they’re here. Diana even came and watched a movie with me, and I wound up laying down on the futon through almost all of it.

It’s hard not to do anything. But I’ve decided that in order to recharge, I need to stop doing stuff. Just say no, so to speak. Just roll over and keep sleeping. And not feel guilty for not doing anything. All the stuff I normally do to recharge? Have friends over, write letters, work on crafts, play the piano….. Yeah, I don’t have the energy for those either.

After all, someone called me yesterday about a credit card application. After about 30 seconds of me trying to think and failing miserably, I just told him to nix the application. I was so glad it wasn’t someone following up on a job application. Because I would have probably told them the same thing. And when a girl gets like that, it doesn’t matter what things are on her to-do list. Recharging gets priority. Because this girl has been running on empty for far too long.

Abigail

Counting Our Blessings: ME Synchroblog Part II

We’ve been writing and talking about blessings in the midst of illness. And by the positive, I’m not just referring to the “silver lining” but the substantially good things we’ve experience since we’ve become ill (or because of it.) {gasp}

Sarah at Dead Men Don’t Snore confirms the bitter truth we all know (and perhaps try to ignore.) Having any illness is hard. Add chronic, add young adulthood, add debilitating, add misunderstood, and you get a very difficult experience. It sucks, majorly. There’s no way around it, folks.

Arielle at Dear Little Disease confirms that having ME/CFS is really not that fun. Yes, she’s adopted a cat. And, true, she now has a “valid” excuse for riding her skateboard around the house(!!) but I think if she had a choice, she would run for the hills when ME/CFS came up as an add-on to life.

Despite the devastation ME/CFS causes, the consensus is clear: we as the ill have learned to value life in a new way and our hearts have been broadened.

Lydia at A Path through the Valley writes that she’s learned that there’s a value in living. Just being is an accomplishment, and something to be treasured (sick or not). Furthermore, she’s discovered “telling the truth about suffering breaks down barriers”.

Barry writes that in addition to drawing closer to God and finding new hobbies (me too!!), his heart and mind has been broadened.

Charlotte at Info Freak agrees that somehow being sick has made her a nicer person. She writes, “It seems an odd thing to admit as I wasn’t particularly terrible before, yet I have noticed I am definitely a lot nicer these days. I have more compassion for my fellow humans having experienced some pretty low times at the start of my illness and now try not to judge others as I realise we all have our own particular trials to go through.” In fact, she admits that she’s more forgiving toward her husband and more flexible about the way things have to be.

Lastly, Tricia comforts Sarah that frustration by the difficult of life with a chronic illness means “you still have a lust for life and if you still have that then you haven’t given up”. I like it Tricia!! Having a “lust for life” is important, no matter what the cause. And that’s what Lydia means when she said that she’s discovered a new perspective on life.


I would definitely, without hesitation, run for the hills if given a choice between having ME/CFS and not having it. This conversation is far from over, but it’s definitely helped me consider illness from a different angle.

For all those people who say that a “positive attitude” is all you need for healing, that doesn’t mean that you just wish the illness away. It doesn’t mean that a “negative attitude” results in physical pain. A positive attitude doesn’t mean that you let go of hope for a cure or for understanding from the world around you.

It does mean that you’ve come to terms with the concept that a bad situation can make you a better person. It means that you’ve decided that you don’t have to fully comprehend something in order for it to be real. It means that you’re not afraid of the truth, you’re not afraid of the world’s scorn, and you’re not afraid of the difficult.

Abigail Cashelle

Counting Our Blessings: ME Synchroblog

Sorry that I’m a bit late in posting. Time zones & chronic fatigue = a later post.


Having a debilitating illness is hard. It’s worse if you’re young. It’s worse if it’s chronic. It’s worse if it’s invisible or misunderstood. But the point is: it’s hard. Period. No further words necessary.

Today’s post is about counting our blessings, about the good that has happened since illness struck (or even because of it.)

The biggest thing for me is that I was an extremely judgmental person. I don’t think my parents meant it this way, but somehow I grew up with very strict ideas about what being right was and that turned into me being a teenage judgment policegirl. I don’t know where I am on the spectrum from judgmental to discerning. I’d like to think that I’m fairly discerning. And I know that maturity has something to do with the change. I don’t really know. But I know for sure that illness has taken away the “extremely” in the “extremely judgmental” label.

Just writing this blog, I’ve been impressed by the people who’ve accepted my illness for what it is: hard. They don’t need to know the details. They don’t even need to understand what or how or why or when. People like Taylor and Timothy and Aaron. They hear my suffering, and they honor it.

I used to help teach character lessons to elementary school kids, and I had a lot of trouble understanding the character “honor”. I knew that Scripture commands us to honor the king and our parents. But besides that? I thought it was only for important people. Now I realize that there’s an aspect of honoring someone else’s experience. Recognizing their humanity. Loving them for being. Now I can sing this song with passion: I’d like to honor you. What can I do for you? I’ll stop and figure it out.

I’ve read a few people’s memoirs that reflect on this same point, and I’d like to leave you with some of their words:

“Thank you for wanting to know about me,” she said before leaving, a statement that would resonate in the coming years, when many people demonstrated that they would rather not know about what I was experiencing…. I was learning a difficult but powerful language of truthfulness that many healthy people find hard to bear. (Marguerite Guzman Bouvard, Healing: A Life with Chronic Illness)

If there’s a lesson here, and of course there is, it’s this: you are not your illness. You have an individual story to tell. You have a name, a history, a personality. Staying yourself is part of the battle.

…Given her prognosis, Sheila is a rare success story. But it’s not the end of the story that’s the only important thing. It’s how Sheila lived with her disease, how she developed a narrative of herself… in course of many shocks and threats and how she communicated all this to me and to the medical students. In the course of my long career, I’ve seen many people battle their illnesses, and I’ve come to see that each person writes a narrative as an individual, as a thumbprint. Some stories are about successful adaptation or, happiest of all, about conquering the foe; others are darker, more tangled, more troubled. But every story deserves respect. Every story has a real, actual teller, and needs to be listened to. (Julian Seifter, MD, After the Diagnosis: Transcending Chronic Illness)

It’s hard to be understanding, particularly when your life is difficult. Sometimes, there are moments when I just snap. Do I really care that your girlfriend distracted you from getting your homework done? Or that you’ve had a hard semester because your checking account went into overdraft?? Other times, dealing with a chronic illness makes me extremely sympathetic. One of my students this term was in a serious car accident (considering that no ambulances arrived on the scene.) I didn’t need him to describe the whole situation to me. I just wanted to know if his girlfriend was okay. And I was more than happy to give him a long extension on the assignment. I knew that he was dealing with a lot of people and a lot of emotions and a lot of money all on a tight time schedule; plus I recognized that he had other classes as well. It was easy for me because I’ve been there. Illness has made me more sympathetic (if still someone selectively.) I love what Laurie Edwards writes about this:

No one has a market on suffering. Though our perspectives are often quite different, the healthy and the sick are entitled to the same empathy and understanding from others when times are difficult. Of course what we each define as a “tough time” is always going to be relative, but that’s exactly the point: suffiering is determined by the sufferer, not by the observer. When people tell us they are having a tough time, we should try to be supportive friends or earnest listeners. (Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties)

I’m not here to say whether or not chronic illness is worth the pain and suffering for the character that is shaped from it. I still think I would run for the hills if I had a choice. But for me, it’s been important to recognize that everyone experiences hardships. They may be different. They may come at different times. But, the question is: do we gain anything positive out of it? Or is the whole experience in vain?


Let me know what you think. Write about the ways in which you’ve seen blessings in times of hardship. Post something on your blog or youtube channel or instagram or other social media platform. Post a link here with a brief description. I’ll post a summary & reflection late tomorrow based on all your suggestions.

Abigail Cashelle

P.S. If you post something on twitter, please include the tag #meaw2013

A Quick Update

I’m still here…. I’ve been working on some sewing projects. I’ve been seeing some more doctors. Mostly I’ve been sleeping. And reading. And thinking. And, importantly, not being a grad student any more.

I should be around a little bit more… especially since I’m hosting the ME Synchroblog tomorrow!!

First I need to clean up the apartment because Gretchen’s best friend is visiting us early tomorrow morning. And it looks like Hurricane Abigail has moved in!!

Until next time,
Abigail Cashelle

in which Dr. Mark thinks of the squirrels

All kinds of great things happen in Dr. Mark’s exam rooms. We have elephant exam gowns. We talk. We listen. We try not to fall. We joke. We cry.

SquirrelThe other day I was talking to Dr. Mark about the antibiotic he had prescribed me the previous week. I told him that it made me feel really sick. So I stopped taking it. I threw it out the window.

He looked at me with a completely straight face and said, You can’t do that. I hope you didn’t really do that. That medication is not meant for the squirrels.

And that was it. We moved on other more important topics. About what I was going to do now that I couldn’t take antibiotics. About how much pain I’m in. About quality of life. About the fact that a lot of specialists don’t take me seriously.

But, that moment? It saved the whole visit from being incredibly serious. And it shifted the focus from the XXXXL gown. Mostly, it was just funny. The idea of me using a whole spoon to throw medication out the window. The idea that Dr. Mark’s gut reaction was to think of the squirrels.

Moral: don’t litter. Remember the innocent squirrels.

Abigail

The Stethoscope Meets the XXXXL Gown

I’ve concluded that there is a purpose to exam room gowns being huge. Sometimes, doctors want to be able to put their stethoscope on your skin. If they can sneak the scope under the gown without totally exposing everything, they like to. I’ve also seen techs take advantage of all that extra cloth to keep you covered while they’re doing an ultrasound. (Don’t believe what they show you on TV. They have to dim the lights to do an ultrasound anyways.)

So it makes sense that the gowns are kind of big. But I have a problem with how insanely big Dr. Mark’s gowns are. They are seriously big enough to fit three of me inside and still have space for ‘scopes on skin. I do not exaggerate. What does this mean? It means that the following things have happened to me:

1) I’ve been trapped in an exam room with the lights off because the motion sensor couldn’t detect me in the XXXXL exam room and I didn’t want to risk falling on the ground because of the gown.

2) It means that it’s difficult to move from exam table to the chair, which isn’t always that big of a deal except in the XXXXL room. Why? Because when Dr. Mark sits at the computer to put in orders, write notes, and look things up, it seems like I’m in a different room way behind him. (It’s not just the motion sensors that think the room is too big.)

3) It means that I’ve gotten all tangled in the fabric while being examined by Dr. Mark. Talk about awkward. Hold on. I’m laying on a bunch of extra fabric, which seemed more modest when I was sitting up. Now that he’s actually trying to examine me, all that slack in the cloth is missing. Ummmm, Dr. Mark, can you take a step back and maybe look at the ceiling while I get myself untangled from this gown?? Like I said, not awkward at all.

Another day in the life,
Abigail

Thankful

It’s official, folks. I’ve bid goodbye to the ravenous lion. He’s going to have to find another person to feed him. I’ve got a few things left to finish out the term, but otherwise my journey through graduate school is over.

I could go on and on about it, and I might later. But in the mean time, I want to show you something. I decided to write thank you cards to all the people I encountered through the course of my program, people who took the time to help me, to listen to me, to spend with me, and to teach me. The list included classmates, professors, and church folks. It’s a good thing I decided to go card shopping. Because this is what happened:

very thankful
very thankful

I came up with a list of 23 people…. And that doesn’t even include Aaron. (I realized later that I need to go back and add him.)

Being in grad school, I’ve felt profoundly isolated. I’ve spent a lot of time wondering if I had any friends. But, when the rubber hits the road, I have more than I thought I did.

In fact, one of my classmates (who hasn’t even appeared on this blog yet) is hosting a going away party for me this weekend. It’s super sweet. I didn’t realize how many people are going to miss me. It’s kind of cool.

Abigail