Sunday, September 12, 2010

Real sleep is over-rated

The saga continues...
In one of my recent posts, I was talking about my body's newest ability to sleepwalk. It started off with me walking around my room and talking when I actually managed to sleep every so often. Then it escalated to me walking around the entire apartment, attempting to make food, looking out the windows, leaving multiple cartons of juice in the middle of the kitchen floor and scaring the shit out of my poor room-mate everyday. I still have no idea how I didn't manage to hurt myself. No new bruises, cuts, dislocations...very strange. I know at the peak of it, I was having horrible anxiety and was working through a bunch of EDS related emotional junk. Realizing that nothing is the same from the previous year; pretty much everything I lived for had to be given up because of EDS, and knowing it will most-likely continue on the same path totally messed me up in the head. The supplements I was taking to help me sleep were no longer working, and I couldn't calm down to save my life. All those coping tools that I have didn't do anything either. Sleep deprivation made the pain worse, and pretty much intolerable. There were a few nights I considered popping an Oxycontin in desperation for some kind of relief. I had them left over from my disaster of a root-canal last year, and didn't take any of them then. When I subluxed my neck in May, I didn't take anything either, WTF? Why did I feel the need to take one now? Have I ever mentioned that I effing hate EDS ?

Thankfully, I somehow managed to ride it out, and be a semi-functioning member of society for two weeks that seemed like a blur. The following day, after I really scared my room-mate (she thought I was a rapist that broke in) I got my ass on it, and booked a bunch of appointments to get myself sorted. Now it wasn't only affecting me, and I refuse to be someone who makes people feel uncomfortable in their own space. That day, the referral for the neurologist finally went through and I scored a consult. This is for the suspected dysautonomia that I've been fighting to get diagnosed. I meet all of the criteria, and have all of the symptoms. Thank-you EDNF conference for confirming all of my suspicions. Anyway, I ended up going to the naturalpath to see if she could find some new supplements and remedies to help. It was so nice being able to say whatever I needed, without being judged and knowing that I wouldn't be leaving her office being told to fend for myself as a solution. Instead, I ended up leaving with a new supplement that helps all of my current issues while she comes up with a new game-plan. The supplement ended up helping with the anxiety but I still wasn't sleeping, however I didn't sleep walk so I was okay with that. I found a new acupuncturist who also does Reiki, reflexology, Tuina Massage and Qigong...Holy awesome Batman! A few days later I had my treatment and left feeling balanced, in control and like a million dollars. That night, I slept for 7 uninterrupted hours. That was the best sleep I'd had in a month and it was wonderful. I'm still able to get to sleep in a reasonable amount of time (considering everything) and I thought I was staying asleep for about 6-7hrs until my room-mate informed me that I'm sleepwalking again. It's not as intense or frequent, so it's a step in the right direction. When I was in high-school, I had a lot of friends pass away, and I slept-walked then. Even now, I sleepwalk when any of my friends go to meet their maker. So it's probably a grief/loss response. If I were to deal with all the emotional junk, I'm sure I'd probably sleep a lot better. So much easier said than done.

I think, wait... I know I just need to have a good cry. I haven't really let myself get upset enough over how much my life has been turned up-side down, and it's all bottled up. It's so much easier in the short-term to push everything back, and avoid dealing with something that is painful and scary. It's also easier to dish out the advise than to take it. My biggest problem with it, is that I can't get started. I get so hung up on pushing it back and moving forward that when I should let myself get upset I can't do it. The only thing that seems to set me off is fighting with doctors and even then, I don't cry in-front of anyone, so I push it back if I'm at an appointment, or will wait until I'm off the phone if I have enough time before work. Considering all of this, it doesn't happen often and is always very short-lived. I can't waste time crying about it, I've gotta get back up and keep at it, with a smile dammit! I sometimes ask my friends to say mean shit to get me started, and that I won't take it personally...I don't know why they all refuse to do it? I did have a friend offer to sit with me and let me just be whatever it is that I need to be. I've also been lucky enough to have another friend offer the same thing. I will say that has got to be one of the most supportive and loving things I think someone can do. Too bad, I can't get the courage to take them up on the offer. Over the years of trying to get a diagnosis, regressing, having everyone question what's happening and being accused of some pretty crazy shit that I'd never even think to do, has resulted in me loosing trust in almost everyone. Barf! Thanks EDS.

So for now, I just ride it out and try to cope the best I can. I know with new supplements, more treatments and making myself deal with things as they happen I'll be in a much better place. I've managed to spend the weekend being super-productive while pain levels were pretty low. Laundry, dishes, cleaning, cooking done. Letter to the City of Toronto to fix my broken wheels sent, more scholarship and funding applications filled out, appointments booked, and school application is coming along. With the exhaustion of the week itself, then getting everything done in one day, left me too tired to go out and do anything. I must say that I have awesome friends who will come over, and chill on my bed with me. We'll throw on a movie, play cards or a board game, and whatever else. I'm going to feel like I live on campus at school forever. That's okay, those were the very best times of my life. With everything that's been going wrong, or not working out the way I'd like I've come to realize that even in the midst of this hell that I have some amazing opportunities sitting right in front of me. I have the option of walking away from a job to go back to school and start something that I'm becoming more passionate about each day. I'm not tied down to a mortgage, car payments or babies which leaves me with a lot more freedom than most people my age. I can essentially do whatever I want, kind of. One thing I learn over and over, is that no matter what's been thrown at me I've still been able to make stuff happen and find ways to make it work for me. If this girl can do it, anyone can.

I've got a follow-up with the GI specialist next week. I need to get another endoscopy and biopsies done soon. I'm going to bring up the g-tube idea, it's becoming too unsafe sometimes to eat. I blocked off my airway 3 times this week, not cool. Throw in the dysautonomia, more muscle weakness in my face and TMJ issues, eating isn't as enjoyable as it once was. I've been loosing weight, and all my clothes are too big. I'm kind of okay with it, but it's not healthy when it was accomplished being really sedentary. I hope I can convince him of something, I'm going for quality of life here.

My brain hurts from writing all of this, so I'm sure your brains are hurting from reading this jumbled mess.

"Good times become good memories. Bad times become good lessons. There's always something good that comes out of every life experience. You can never loose, you can only gain from life."


  1. My brain does not hurt from reading this, my heart goes out to you. I'm 46 with EDS and until recently I thought I was not in denial about the whole EDS is crap stuff. Having a mini meltdown atm on the whole thing so I get strength from reading your blog because if you get up and fight another day so can I. Thank you.

  2. Not a problem, thank you for reading my crazy rants, and letting me know I'm not the only one stuck in this mess. At least, we can all be insane together :)

  3. It's so hard to take the time out to grieve for the life that we wanted and planned for and expected growing up because who would think to warned us that there was a chance that Pain could point us in such a different direction. But you have to take the time, because, at least in my case, your mind will take the time whether it's convenient or not.
    Funny/embarrassing story: My wife and I got some fish today for the tank I got her for her birthday. I have been dealing with the issues we talked about before but I hadn't actually let myself get upset about it yet. She picked out most of the types and there was only one type that I really wanted. We got home and the clerk had grabbed the wrong color fish of the one that I wanted. The rest were fine. And I was inordinately disappointed. It's a fish. But I realized after my odd cry that I was upset more about how many things in my life just don't turn out how I'd like them to be. And this was just one more thing. So it comes out wherever it can. (Sorry for hijacking your thread)

    Take care and I hope all your appointments work out for the best.

  4. Hijacking? No such thing on here. I'm glad other people get it, and that we can keep each other sane.

  5. One of the hardest things to do is to mourn the loss of your own health. I have days like that a lot. It feels like self-pity, but it isn't. You have to give yourself a chance to cry for what you don't have any more before you can be truly greatful for what you do have.

    Good luck.