Hello from Montreal!

It's definitely a good thing that I haven't written in here in a while, but I'm clearly not completely cured, as here I am again.

I'm going to try to organize my thoughts around some key words (as inspired by a book on science research that Katgor and I found in a bookstore yesterday).

1. Self-Awareness

I think I've always had a bit of trouble recognizing what's going on with myself as it's happening. It's not that I let things happen around me; rather that I immerse myself so fully in whatever is going on that I forget to check in with what my body is doing. This has shown itself in the past with sometimes accidentally not realizing that I'm hungry or that I need to stop walking or that I need some alone time. All of these things would help me recharge, but I can't do them until I realize that I need to do them. After I really crashed for the first time and every time since, I tell people that I don't know when it's going to happen until it's already happening. However, I'm sure if I tuned in to what my body is doing, I would be better at detecting when I'm crashing. Or, even better, if I can acknowledge that whatever I'm doing at the moment will probably cause me to crash, I should have the insight and self-awareness to determine that I need to stop, even if I'm in the middle of doing something really great (more on this later).

2. Control

When I was in the midst of a period of crashy-type feeling, I tried to pinpoint why I do what I do as a person, including why I put myself into so many new situations, like travelling, meeting new people, and trying new things of all sorts (besides for the merit of the new experiences themselves). Control was the one thing that I kept coming back to. I have always had something wrong with my body in terms of sickness, and it seems like every time I thought I was cured of one thing, another thing came along. I think the way that I escape from my own body is by involving other bodies with me to help me get out of myself for a bit, which is not really the best way of dealing with things, even though it's definitely ingrained in my personality to be an explorer of sorts. I do hope that I can manage to strike a balance between having all of these wonderful adventures and keeping a regard posed inward to figure out what my body is doing.

3. Wants and Needs

Once I had had a couple months to deal with the fatigue, Ceilidh told me something that stuck with me. She said that if I wind up crashing after doing something that was extraordinarily, amazingly something fun and something I very much wanted to do, then I need to recognize that it will be worth the days of recovery that follow. This is excellent advice, but I know I've been following it in the wrong way. Ultimately, I've resigned myself to the fact that I might crash anyway, so I may as well do all of the things that I love and throw caution to the wind. Thinking back on the past couple months, I can only think of a handful of times when I turned down an opportunity to go out or hang out with friends as a precaution and not when I was already crashing. In fact, even during those rare times, I probably was in the midst of crashing downtime anyway and just didn't want to acknowledge it. As a rule, I give myself what I Want and not what I Need (or I confuse them, which is just as bad). My real problem is that not only do I strongly dislike not giving myself what I want, I also strongly dislike having to tell someone that I can't do something that's sure to be extremely fun, only to instead spend that time in bed or reading a book or just generally being immobile because I don't want to let myself get down to my bare essential level of energy. This is something I definitely need to work on.

And so, from that, let me work out what I actually need to do:

1. Check in with myself more often (in practice- stop whomever I'm with so I can reel myself in and figure out where I'm at; or stop whatever I'm doing to feel what my body is doing)

2. Stop feeling down every time I need to spend a couple hours or days of down time, since I know that it will ultimately spare me a bigger crash later.

As I'm sure you've probably worked out by now, I wound up crashing pretty bad today. It was definitely a matter of time, and as much as I felt that I was fending off the crash and that maybe it just wouldn't happen this time, if I had really been honest with myself and Katgor, I definitely would not have let us walk those 5 (or 8...) kilometers to and around the Parc du Mont-Royal. And I probably would not have gone out last night to go dancing after spending a rather full first day in Montreal wandering around, seeing the Parade of Twins as part of the Just For Laughs Festival, walking on the Rue Ste-Catherine to the gay district, and watching the International Fireworks Festival display from the roof of a lesbian bar. However, back to Ceilidh's sound and useful advice, I do feel like doing all of these things was worth my inevitable crash, even though I do feel bad for Katgor for having to deal with me after the fact (travelling with people after my initial crashings last March have led me to perhaps write a User's Guide to Jamie. Maybe that'll be my next post!).

It really doesn't take much for me to recover/preserve my energy, so I think it should be reasonable for me to get better at actually doing it and being honest with myself about what I can do, especially since I really do feel like I haven't been crashing as hard as I had been. Whereas I used to have crashes where I couldn't move without crawling, couldn't talk without heavily stammering, and couldn't be awake without sleepy tears falling from my face, my pre-crashing and crashings have been more like walking sleepily and slowly, talking rarely and enjoying silence (which, after the fact, I realize made for some awkward social interactions), and only crying from frustration when I realize that I've gotten to the point where I really should have stopped hours ago.

I know I'd been frustrated at all of the doctors for not having any answers, but now that I've worked out some answers for myself, fingers crossed that I'll actually learn to be good to myself!

How can I miss you if you won't go away?

Hello! It has been so long since I've updated, and that is such a good thing! Here are all of the things that have happened since I last updated:

- Went to Toronto for a week with Denise, where we enjoyed 7 documentary films as part of a Hot Docs, a documentary film festival. We became champions of public transit, made friends with Canadians, and generally had lots of shenanigans. Oh, and we drove there and back.

- Saw some of my favorite people graduate Smith College! I was able to drive up and sleep on Shanna's floor (thank youuu!), and I couldn't have been prouder to see my loves walk that stage. Also, I got to visit my babies and lovely co-workers from the Baby Farm* where I was a teacher (*not the real name of the school), and it was amazing to see how everyone had grown.

- Made a silly 24-hour trip to Noho and back when I needed to escape.

- Had the best picnic that I have ever had, hands down.

- Partook in a day trip to the beach with Cousin Nicky.

- Survived over a week of my room being a hostel for four of my friends. I absolutely loved getting to see them all, and as much as I worried about playing Tour Guide all week, I managed totally well and rested when I needed to and still love them all immensely.

The best part? I DID NOT HAVE ANY CRASHES.

That's right; I am doing so much better! I can think of two isolated instances since my last post where I really have felt sort of in crashing mode, but whereas my previous crashes peaked around an 8 on a 1 - 10 scale, these were closer to 5's. I like to think that it's due in part to me listening to my body better and knowing when to stop. I have been sleeping 10 hours a night again, which I think will always be what I need to function like a human. However, I do know that I still need to be taking it easy so I don't push myself too much. For as much as I've been doing lately, I'm not working and I don't have any schedule for my days that isn't self-imposed, so I know that there is a possibility that I will have some not-so-good days when I'm in France in the fall. But I'm keeping hopeful that this summer will provide me with all of the opportunities for rest (and fun excursions, too!) that will keep me in a good place for when I uproot and start my new job. Which means that in the meantime, I need to stop looking at all of those tempting craigslist ads and get used to the fact that I can't be making money/contributing to society right now.

I guess that's all for now, and hopefully you won't hear from me again for awhile, since I'll be off having fun little adventures! Love love.

Sorry for the lapse in posting!

Since I last wrote, I spent a week up in Noho, which was absolutely wonderful. I was staying with a dear friend, but I unfortunately got her all worried when she saw how bad I get when I really crash. However, even though I did crash out pretty badly, it was definitely worth it to be able to see all of my friends. I got to visit my old workplace and see all of my co-workers and babies, I saw an AMAZING performance by deaf comedian C.J. Jones, and I got to sit in on lots of Carlie's classes, which made me all excited about ASL and Deaf Studies. Not to mention that I ran into lots of folks that made me feel warm and fuzzy. All in all, it was a wonderful trip.

I had another doctor's appointment yesterday, which offered no concrete answers, to my continued chagrin. Here's what I wrote a friend about the experience:

"I got to see a rheumatologist yesterday, who once again gave me a shrug and a send-off. She mentioned that my symptoms were inconsistent with CFS, but she is also an arthritis specialist, so maybe she isn't the best person to know. She also said that it was a diagnosis of elimination, and she was also the first person to spontaneously mention CFS without my prompting, which may be helpful. In any case, I get to go see a muscle specialist when I get back from Canada, which may lead to a visit to Columbia University to put big needles in my muscles to see why I get more tired after exertion. So, long story short, back to the drawing board, and I'm still just in a place where I want a doctor to give me helpful advice of what I should be doing to build myself up again. Though I know that the answer is probably to just be resting infinitely, since I'm only feeling comfortable at rest. But since that's not the answer I want, I guess I'll be going to doctors until I get any answers at all, even if they're not the ones I want."

Although the doctor/diagnosis scene is still looking bleak, nearly everything else is going pretty great. I am so thankful for everyone I have in my life, especially those who are learning every day with me how to be patient, kind, and at a pace I can handle. I love you all so much.

In the meantime, I'll be visited by three friends starting tomorrow until I leave for Nova Scotia on Thursday, where I'll stay for about 3 weeks! I love being able to have these little adventures.

No diagnosis.

Well, I shouldn't say that I'm surprised. As I walked into the doctor's office yesterday morning, I looked at the business card that said "Gastroenterology" on the top and realized that maybe this guy wouldn't have the answers I was looking for. However, since he was the last person I saw about being completely wiped out in June (when it may well have only been an infection of some sort, because my liver levels were through the roof), I figured at least he would send me for some tests to play the Elimination Game - we're looking to cross out any liver disease and anemia with the bloodwork he sent me for today. I have an appointment with a new endocrinologist next Friday, and if I still don't have any answers, I'll likely be going back to a specialist, hopefully in chronic diseases.

Honestly, the more I think about going to the doctor, the more I wish I could just bypass the Elimination Game and get to the part where they diagnose me with chronic fatigue syndrome. I've always been impatient, though. And maybe it will prove important to go through all of these tests to rule things out because hey, I just may wind up having something that is testable, diagnosable, and curable! However, recent webmd-searchin' and book-learnin' have taught me that not only do my symptoms match with those of CFS, but that doctors don't always know how or when to diagnose it.

Hopefully, a diagnosis is just around the corner, but until then, I'm set to head back up to Noho for a little bit and then onto Canada. I'll be taking it easy as best as I can with the people I want to see most, which, even sans diagnosis, will definitely be the best medicine.

Having a good week!

Seems I don't really write in here unless I'm stuck in bed, and it's a good sign that I haven't written in a while! My week has been great and has included seeing a lot of people that I love, who have helped immensely at keeping my spirits up. I finally have a set doctor's appointment on Monday, where I will hopefully get "official" answers as to what's going on. Seeing as how my last diagnosis was a sinus infection, I know that I have enough evidence to make a good case for CFS, if nothing else shows up in bloodwork.

I've been keeping a daily journal of how I feel day-to-day, and my goal for tomorrow is to make it so I can see things that happened over the course of a week, since it's been over 5 weeks since I first crashed. That should also definitely give me some credibility when it comes to getting a diagnosis on Monday. Not to mention that my daily range of motions still doesn't feasibly rise above being physically alive, awake, alert, enthusiastic for more than two hours a day, tops.

I will keep you posted!

Labour of love

This past week has been crazy. I moved out of Massachusetts and back into my parents' house in New Jersey, part of my car's radiator burst because it didn't like us trying to force it out of the ice hut that had built up around it while I wasn't driving, and my girlfriend officially finished her college career, which ended up quite nicely with us spending a couple lovely days in New Jersey when her flights kept getting cancelled.

Although we kept things pretty low key, I still wound up crashing super hard after she left today. On a scale of one to ten, with ten being fully functional and one being a vegetable, I was at about a two for bits of today.

When I get completely crashed out like that, I feel like my brain can't make the connections that it needs to. Everything takes longer; walking, if I can even get myself to that point, is laborious to the point of needing to rely on walls and other people to keep upright. Talking is more of an interesting display, as I can usually only spurt out several words before my brain cuts off my mouth's ability to keep going. The words are still going in my head, but my lips just won't make the sounds. Sometimes, I turn into a broken record and stammer out the last word a couple times, hoping the rest will follow, but to no avail.

Thanks to Wonderful Girlfriend, who is also known to crash pretty hard and has helped me recognize some of my triggers and how to prevent things from getting worse, noticed that this interesting display of brain-mouth fail often follows extreme hunger. However, when I get that conked out, I can't even sense that I'm hungry.

Luckily, now that I'm home, I don't have to worry about starving to death, since my mother always makes sure that the house is fed. I got up from the couch and got to the dinner table (a feat in and of itself), but facially declared that I wasn't hungry and was mostly confused as to how I was even sitting at the table, let alone with a heap of macaroni casserole in front of me. I didn't yet feel hunger, and even let my mouth try to babble about what I had been watching on TV. When that idea crashed and burned, I tried, slowly but surely, to bring a forkful of food to my lips. It finally reached my mouth, still no hunger, not feeling it... BANG OH MY GOD I HAVEN'T EATEN ALL DAY I CAN'T BELIEVE HOW HUNGRY I AM!!!!!!!!!!!!

Needless to say, I finished dinner with a lot more vigor and even managed to speak coherently about halfway through.

It's super past my bedtime, and this is a propos to nothing, but I just wanted to say thank you to everyone who has shown me kindness, patience, and/or care as I figure out what to do with all of this. It means so much to me to hear how you're all doing and to know that you're thinking of me. I think I'm just going to take a completely stress-free week, which includes not feeling obligated to be social, but know that I'm still around, I'm thinking of you, too, and I'm going to be so happy to have lots of fun, low key things for us to do together when I work up the energy to be able.

One day at a time.

When I first realized that this was unlike the other times that I've crashed, I started writing down what my days were like. In the beginning, it mostly consisted of, "Tried to do x; instead, wound up crawling back into bed, unable to move for two hours."

I managed to streamline my entries as time went by. Now, each day has a section for Sleep, Crashes, and Things I Did. It's gotten so that my "Crashes" section has started to have things like "NONE AT ALL Check me out!" and my "Things I Did" section has big things like "long-ish walk to campus to see a choir concert". I've also learned that I love to put the things that aren't big accomplishments but make me feel good that I was able to do them, like talking to Miriam in Brazil on the phone or making my bed (or showering!). Mainly, I like to make sure I put more focus on "Things I Did" than how often I crashed or how much sleep I got.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My main worry about all of this was finding someone to fill the lease on my apartment while I move back in with my parents in Jersey. Luckily, within 24 hours of posting my ad on craigslist, I got 17 responses. We met with three candidates, and funnily enough, the one we chose didn't find the ad on craigslist at all, and is one of Shanna's and my mutual friends! He seems like a perfect fit for the house, and I'm so grateful that he's able to fill the room.

Two things to do today:

1. Start packing (slowly, but surely)

2. Go see Ceilidh's thesis presentation! (if you'd like to come, it's in Seelye 207 at 4:30!)

Thank you to everyone who's posted comments and reads these posts. I'm thankful to have people in my life who care about me.