...a little update.

as some of you know, i've been really struggling to get by for some time now. the spiraling out of my health (and poor medical management), coupled with the emotional devastation of the separation from my husband, the financial realities of...living sick without being able to work, and many other factors (stepfather's cancer, no local friends, etc) has really weighed on me this past summer and autumn.

i wanted to post because i'm doing a fraction better -- moving in the right direction, i think. i went to the first-ever meeting of the boston EDNF, where we voted to adopt the charter and become part of the national EDNF, which was helpful. i'm in the process of re-doing my medical team -- on monday morning, i'll have an interventional pain management consult done (since my pain is very poorly controlled) and will perhaps later see a physiatrist on that team who is very good with spinal issues (of which i have many). tuesday i will see my endocrinologist to discuss why i lost more bone mass and am in a more severe category of osteoporosis and fracture risk, and perhaps develop a new plan there. later tuesday i see my GP, and i am going to plead with her about methods to deal with (1) my inability to sleep for more than 90min at a time due to some kind of pain or inherent sleep problem and (2) my inability to have *any* reasonable energy. the fatigue is going to do me in. in a few weeks, i'm seeing a hand specialist at children's hospital -- through some negotiation, they've agreed to take me on as a new patient at 28 -- and hopefully hook into a team of OT and other management for my EDS and its plethora of gifts that keep on giving.

i am not going to be going to my family's house for an extended stay following thanksgiving for several reasons, mostly psychological (to protect myself), but also so that i can try to get more accomplished here, where i live as an adult, a good 10-11 hours from family. it would have been nice to have been taken care of, but the cons outweigh the pros, so to speak.

i am continuing to see my counselor each week -- it is helpful, and i always feel like i have one "team member" who actually cares about me.

things are improving with my husband, at least in terms of friendship and enjoying shared time together. i will not post all of the ups and downs. it is still highly unlikely we will 'get back together', but if that is ever firmed up, i will post with elation. in the meantime, he has given me great company, great fun, and some very practical help around the house and so forth, and continues to support me financially and with health insurance even though he doesn't really have the wherewithal to do so, so i can continue my treatment and not have my entire life upended.

my exhaustion and growing weakness from being sedentary, along with disordered sleep, really need to be addressed, especially because i've now signed up for my spring 2009 courses -- my first term of the (100% online) MLIS degree. wish me luck!

these next few months are going to be very hard -- negotiating the cold winter alone, negotiating some kind of continued connection with my semi-estranged husband, continuing to try to meet new friends when, well, new friends seem to not like me for me -- either i am a curiosity or a sex object (on some level), and i refuse to be either -- but that's okay. i have my home to work on -- selling my old things, organizing, condensing, preparing for whatever move i make next, on my own or with someone else, ridding myself of all the trappings of failed projects, obsolete possessions, and clearing space for, at a minimum, all of my LIS stuff! i have enough to do that's not getting done (medical battles, housework, etc.), so i am just going to try to focus on keeping things simple and spending what time i can with people, even if it's just time on the phone, or whatever.

and i need to learn how to get around better. my mother is bringing up an old hospital discard wheelchair that neither she nor i can lift in and out of the car, but i have one friend and my husband who could use it and push me if needed, and lex will be donating her old chair that is *much* lighter to me as well. i'm going to try to get fitted for forearm crutches that actually fit (and are full cuff) and return the ones i'm using for now to the charity. my mom's hospital also has an extra quad cane, which may be useful in the snow (set to fall for the first time a week from tomorrow, at least in my area). ultimately, i want to be stronger, but i'm not sure how reasonable of a goal that is, or how quickly i could see a meaningful difference, so for now, i'm just trying to be safer.

gee, and there's my longwinded, relatively dull update. but that's that. i try to read and post but am not doing the best job. know that i am thinking of you all, whether it seems like it or not.

*hugs* You've sure had your ups and downs, huh? I'm glad to hear about some of the things that are working out for you now... and I hope things continue to improve for you. Good luck on the cane and crutches and wheelchair... they make such a difference.

Take care.

Thanks, Aurora... It's a tenuous grasp on things, but it's a grasp strong enough that I won't... let go. There have been many times when I've wanted to let go, and much of the day-to-day, moment-to-moment living has been finding ways to keep myself going through those moments when I'm not sure I even want to keep going.

Of course, all of this pre-dates any real end to this relationship -- no one's filed papers, changed finances, changed mailing addresses, anything like that (though he does rent his own small studio and sleep there, with no expressed intent of ever coming back). I think the legal process has the potential to make both of us pretty wretched, and we're holding off there, at least temporarily, because I said having a decent holiday break where we're not turning papers into courts is probably a very healthy thing for both of us. But I have no idea what will happen there.

In the meantime, you're right, I want as many physical tools as possible, I want to be able to use them, and I want to find ways to be strong independently and also to find channels to support me where I am currently not supported. (Tall orders, eh?)

And I'm really trying to cultivate happiness again. I'm not a miserable person. Life has just been... so very hard. I need to find a way to bring joy back into things again, however small. I need to feel like I matter to people, like I can make a difference (even if not in those "socially valued" ways). I'm really working on that.

i am so proud of you for moving forward. am posting on my sisters phone so i will write more later.

thanks, eri.

a long time ago, my dad said something like... i am proud of you no matter what, but as a parent, i can consider things a true success in hard time if i see my child at least holding her ground, because i know at some point she'll move forward. when she backslides, i get worried -- but even keeping your head above water, i know you'll figure out a way to adapt and move forward eventually.

this was in reference to some super-tough battles with depression and anxiety i was having as a teenager, but i think it kind of applies now, in a slightly different way. i don't feel like i'm moving forward, i'm just actively trying to not lose ground and at least look to the future and imagine myself it it. (which is a big deal, because i couldn't do that very well this summer).

when i was told 'you have EDS, there's little we can do for you, you should quit your (already meager) job, there's little hope of going back to the ph.d. or having children' and then that my partner wanted to split up after 8 years, well, it was all too much. i said, "i don't know how to go on -- how can there possibly be a way to go on?"

(counts on fingers) but it's been some five months or so, and i'm still here, so i guess i figured a way to go on. i'm just hoping my hard work and planning helps me reach that plateau i'm craving so i can stabilize a little bit more.

some folks are looking for excitement -- not me. i have all the excitement i need. i'd just like some stability, some peace of mind, some steady love in my life, you know? nothing fancy, and yet maybe the hardest things to pin down for me right about now.

still, moving forward/looking forward is easier in smaller bites, so one little piece at a time... that's the way for me.

Colleen, I'm glad you're moving forward, even in baby steps. Corny as it sounds, time does help. I keep telling you that you're stronger than you think are. Someday soon, I hope you believe me.

DeniseM

I know what it's like to feel like you aren't getting anywhere even though you really are. Like Denise said it's all about the baby steps. Let me summarize your accoplishements:

1. You're getting a new team together. I am quite optomistic about this one because they all seem to be connected and therefore have a better chance of communicating.

2. You've gotten some aids to help you get around even though they aren't ideal...it's just temporary. It was sad hearing you got a rollator that didn't even fit you.

3. You're making friends...You PMed me...you joined EDNF and are talking to people, even if it's here or on the phone it's still better than being a hermit.

4. You're getting things together, even if it's a little bit...for a potential move which is a lot more than I can attest to. I have a lot of things I need to get rid off but I'm a die hard procrastinator.

5: You're still seeing your counselor which is helping you to stay grounded and sort out what you need in life...and even want from life.

6. You've signed up for your MLS.

Do I REALLY need to continue? Thanks so much for being an uber supportive member despite your troubles...and thanks for giving us the update because we've all been wondering how you've been doing and where you are in all this mess etc.

EG -
I'm glad you posted an update. Sometimes we need to just 'check in' every once in a while.
Congrats to you for taking some action towards making things better in your life and to help you cope.
Each one of us has challenges in our life - when it includes doing without our main squeeze and caregiver it's doubly hard.
You're looking ahead and making plans and thinking about how to cope and how to succeed.
It's all good!

Big smile, big hugs! Atta girl!

linda

Denise, this is the most honest way I can put this: I believe you intellectually all of the time, and emotionally some of the time, but I need a kick in the *ss to remember it when I really need to remember it emotionally.

Having you here to remind me is very helpful and very much appreciated, because I do get into those stupid moods where I question my strength and my ability to go on.

Colleen, are you saying you're in need of an a** kicking? Finally, one of the things I'm good at (I have this on the authority of my kids).


You need to remember it emotionally. RIGHT NOW. Consider your butt kicked, girl.

DeniseM

Thanks, Stephanie. Sometimes it helps to list it all out. I'm one of those people who... I can remember being 6 or 7 years old and writing down all the things I wanted to get done (like a to-do), and all the things I had gotten done, and feeling ashamed that the second list was shorter than the first. I think that's the shame cycle that comes with trying to be "really good" (I won't even say "perfectionist"). I think a big part of my problem is that I am really smart (I'm not trying to sound arrogant), and I've been so smart that in so many areas of my life (certain groups of friends, extended family, every job I've worked, every school I've been to), I am "the smart one". And the correlate to this is also that I'm the well-organized, problem-solving, do-an-excellent-job person. Being sick... has thrown all that off track for me, and I'm literally trying to rework my own internal and external identity to reflect my other strengths.

The sick part of me looks at that list and sees every mistake I've made in the process -- but time is a good healer, I don't care if it's trite or if people say it to me 1,000,000 times -- and the more time passes, and the more I age, the easier it is for me to say "well, I tried, and I still did all those things, even if not exactly as I would have liked to have done them".

I think maybe I am going to start keeping my own "accomplishments journal" instead of writing down what I want to do and feeling depressed when things get done. Sure, I'll need to write down a few things to be done to stay organized, but that won't go in the part of the notebook where I write down what I've accomplished, it'll just function to make sure I don't forget dates and can prioritize when there are a billion things to do (and usually alone).

Anyway, thanks.

Denise, you're an awesome mom. I was sitting here with a tissue writing back to Stephanie's post, saw this one, and dropped the tissue because I started laughing. And you know, the tears didn't start back up after I started laughing. Thank you!

Thanks, Linda. Yeah... the separation kind of broke me down in ways I was woefully unprepared for an unexpecting. But... I really do mean it, I am trying and each day, even if I can't get anything "productive" done, I consider it a success if I ate, took care of my cats, and maybe allowed my brain and body the vacation it got from naps and mindless tv/movies if that's what happened instead of whatever "work"/task I would have liked to have gotten done.

A big part of this for me has been self-forgiveness -- adjusting expectations -- and not feeling like I'm "lesser" because my expectations are lesser. I don't have the same resources to draw on that I used to, so I can't line my old self and my current self up side by side and expect the same things to happen. On the other hand, I'm probably a much more understanding, compassionate person now than I was before, so it's not like I totally begrudge the changes.

Would have liked to have done all this with my partner, though. Yesterday we took a mini-road trip and driving back I was out of it, half-dozing, it was dark, and we were listening to Tom Waits, lazily holding hands while he grappled with the freeway...

So put a candle in the window
And a kiss upon his lips
Till the dish outside the window fills with rain
Just like a stranger with the weeds in your heart
And play the fiddler off till I come back again
And it's time, time, time
And it's time, time, time
And it's time, time, time
That you love...
And it's time, time, time

Anyway. Moving along here...

Aw, thanks. And you're welcome. Always remember that while a few tears are okay, there's a lot of truth to the expression that laughter's good medicine. Keep laughing, it will help.

DeniseM

ROFL. Denise will do the butt kicking and I'll be your drill sargent.

Besides the organized part...you are quite like me...even in height!

I always had to be perfect...it was expected of me and later it became my expectation. I would be no less. (cue in my ED here) because if I were perfect, people would love me. I had my whole life planned out by the time I was 13.

Winding up in a mental hospital and getting my ILS degree was NOT in my plans...let alone not being able to walk! But it happened and I can't stop it nor can I wish it away no matter how hard I try.

And, fellow member of the Nerd Coalition of the US, we can still be smart and use it even though our bodies are crap. Hell we're going to be LIBRARIANS!

When I first came here and later in therapy I was told I needed to have a goal every day ...even if it seemed like it was the stupidest goal ever...like if my goal were to say hi to people I don't know...or if it were to wash my dishes etc...and I was to celebrate that goal as if it were the biggest accomplishment because sometimes it IS the biggest accomplishment.

What am I saying lol?