The Story about when I'm going to have a Nervous Breakdown...

*Warning, this was written & published without time for me to change my mind, as I usually do with posts that are this emotionally raw. I said I wanted to give a more honest look at how it was to live with a chronic illness & chronic pain, so here it is: painfully, honestly, raw. I'm not suicidal & not even close to being so, except for about 15 minutes every time the situation below happens :-) which I hope will be somewhat re-assuring to you.

It's late at night, the time when the anxiety I really want my brain to forget about comes to the forefront & won't let go. It's the time when I know if I don't stop thinking about this crap now then I should forget going to bed because the memory of the bad dreams & even more debilitating anxiety I'll feel in the morning won't be worth it.

Before I became really sick I really could control any bad or worrisome thoughts & always move into a happy place before going to sleep. Sometimes I'm almost 100% positive that this current lack of control is part of the disease that's taken over my body. That scares me even more, if this can happen so can many of the other psychological issues they say can happen. My brain has already been affected in ways both Eric & I have been aware of for quite some time. I'm aware of some other, newer things that are hard to convince him or anyone else is happening now although I can feel it.

So my question becomes, at what point does what I know & can feel matter the most? When is it this expertise that grants me the right to determine certain options for my health care, when I not only feel how I feel but have come to know more about my illnesses than most of my Dr.'s do?

And what I think "mattering" is at the heart of what torments me right now. You see, getting sick goes something like this:

1. You start to realize you're sick & seek a Dr.'s help
2. What's wrong doesn't immediately jump out so the Dr starts ordering tests & referring you to specialists
3. You start getting placed on meds for long term & short term issues
4. You have to start seeing certain Dr.s & specialists on a regular basis because of all of the meds you are now on
5. You find yourself sobbing on the bathroom floor because you've just realized you've given away certain rights & parts of your life to people who don't care about you after 4pm on a Friday or when they decide to take a few days off without updating your meds first. This is also the time you realize you're sick & you'll spend the REST OF YOUR LIFE relying on other people and that means that your plans are no longer dictated by how you feel but also whether or not the Dr took care of the meds you needed to get by. And then there's the worst part of it all, this is also the time you find out that your Dr will make decisions about your plan for treatment without your input or even telling you him/herself. Instead the Dr will make a decision & write it in your note which some office person will read to you & there is not anyone but the Dr who will be able to change that decision!

Number 5 is for me, the worst place I have ever been in my life & the problem is, I've been there more times than I can count. Every time I've been at number 5 another chunk of pride, sanity, optimism & sense of well being has been ripped from me. Every time I've become more depressed, anxious, hopeless and scared. Every time I've lost more of my will to fight them & even to live.

This past Thursday & Friday I went through another ordeal of the "they have control over you" with an added bonus of the Office Manager treating me with disdain, disrespect & outright lying to me from one sentence to the next like I couldn't possibly be intelligent enough to realize it. Eric had to take over & finally got the Dr on the phone after over an hour of us trying. By then I had run away & was trying to breathe & come up with a plan to get MY LIFE BACK! This was another example of the Dr making a decision without talking with me but made worse by a staff that was hellbent on preventing me from talking to him & getting an opportunity to share in decisions about my plan of care.

So here I am, knowing I should go to bed but filled with the anxiety of being treated so insignificantly when I already feel so insignificant. I'm not who I was a few years ago when I could've said, "now just what do you think you're doing." to the Office Manager & then promptly put her in her place & made her realize how out of line she was. No, I'm filled with anxiety because I am running out of Dr.s to work with since so many operate this way & running out of time to find the ones I need that will truly help me. Filled with pain that never ceases, wondering how I'm going to keep going on when it seems like so many of the problems I face come from the very people I have to rely on to help me.

Those are my two MUSTS & honestly, I won't live without them.  It's rather pathetic really, with my quality of life already so low, that I have to fight for anything to survive. It's so stupid I'd laugh if I could stop crying.

So, since I have to be here for my family the fight for those things continues & I'll keep doing my homework on patient's rights & accessing help where I can. But in the meantime I need to find a funny joke or some diversion so I can go to sleep tonight instead of twist in a relentless stream of dreams that remind me I'm sick, I'm at someone else's mercy, someone who doesn't know what my life is like nor has he apparently listened to much of what I've said in the past two months, and that I'm of such low value the Manager of the Dr.'s office can actually get away with demeaning me & scolding me like a child.

It'll be hard (I write as tears stream down my cheeks) but I'll look for a way because for now I can't stop fighting. The single hardest thing about a chronic illness with pain, besides the pain, is this. I'll do my best to get through tonight but I know eventually, it's this treatment from Dr.s that will send me spiraling into a nervous breakdown. It nearly has already, a few times. I guess I should admit that I hope that I spiral into a nervous breakdown, because as the chunks of my soul are ripped away, so are my reasons for fighting to live with this shoddy quality of life at all and a breakdown is actually the better choice for my family.

A Resolution to Resolve in 2011

Each year I say my resolution is not to resolve. This year I plan to resolve A LOT! I'm starting a new blog, planning to do some advocacy around chronic pain and most importantly, find my reason for living and begin to enjoy life again.

First off, here's the NEW BLOG! I decided to completely start over because when I started my first blog it really was mostly about knitting and times have really changed since then. I miss the time when what I was knitting was one of the the most important things in my life, but I can't go back. Rather than continue with that blog I decided to completely start over, as I've been doing in life. This new blog has been a work in progress for a while now but I finally needed to just simplify things and get it started. The start of a new year seemed like a good time to just bust it out. It'll look more polished as time goes on and eventually will include video.

It was exactly this week a year ago (the week between Christmas and New Year's) when after taking quite a bit of time off from work I returned to see if I could make it work. I was out of FMLA and it was do or die time. I knew some people thought I was crazy to even attempt it but I was determined that I had to make one last ditch effort before I was finally willing to accept my illness just wouldn't allow me to work. I tried for a couple of weeks but clearly wasn't making it. Even so, I remember how happy I was to go back to work and how I was singing at night when I'd get home, well for the first 2 days anyway :)

When I left my job, I was thrust into a different role that I really knew was coming for a long time but that I didn't know how to handle. Most of my identity was tied up into who I was professionally and I couldn't even imagine telling people I didn't work! It took a very long time for me to realize that part of my new life included a job, to be a stay at home mom and with that came some responsibilities I could feel proud of. For the most part however, I felt and still feel like I don't add much of an impact on the world and more importantly, in my family. Much of this feeling in addition to a dependency on Doctors for help when I was used to being independent is what caused a deep depression to slowly sneak its way in deeper and deeper so that I am where I am today, very fragile.

Over the past year I've seen the progression of my pain and had more and more difficulty getting help for it. My vision of being jobless for a couple of months, regaining some strength and then establishing a bit of a routine that included housework and cooking never came to light. Instead, my days are spent in the hot tub, going to appointments and napping. I can't even say off the top of my head how many doctors I have. I just know there were times I'd average 3-4 appts a week when I was doing physical therapy too. Also, not one to usually look for pity, I realized that without a recognizable horrible disease attached to my illness, it's been difficult to get much support and understanding. If nothing else, Eric (hubby) and I have learned how to reach out for help in ways we aren't used to. It's difficult for people to imagine pain so extreme that you cannot use the stairs or walk without a cane, I guess, unless they've been there themselves or watched a loved one go through it.

So, to be upfront about why a new blog, in addition to the above mentioned ones. I'm using this blog as a voice to help people understand chronic illness and pain, I'm also sharing my experiences so that other people going through similar experiences can find a similar voice and know they aren't alone. There are times this blog will be tough to read, the videos even harder to watch. That's the reality that up until now I've been able to hide behind closed doors. Yes, I have a great sense of humor, I love sarcasm, and I think laughing is the best therapy. However, I can and have been in such great physical and/or emotional pain that humor and lightness were impossible for me to see. The truth is, the past 2 weeks have been the worst, but the really troubling time started around the beginning of November. I've almost gone to the hospital several times for help with an emotional breakdown I was having. I did go to the ER a few days ago after I fell and was out of pain meds. I've found that unless I'm going to harm myself there is nothing they'll do, not even try to sedate me enough to be calm. Instead I've been told that I can't get hurt falling off a couch and was offered a bed in a detox facility (Remind me to tell that story later, wish I had taken pics of my swollen arm...). There is so much stigma that comes with using pain meds and it's even worse when you say they aren't working.

It's dealing with these types of issues that have left me lying on the bathroom floor bawling because I have nowhere else to go and it's amazing how little some Doctors can care. Pain has a way of breaking you down. I know the tools and tricks of the trade that are supposed to make it easier. There's meditation, mindfulness, taking life day by day, focusing on the positive things, the list goes on and on. I've done that, bought CD's to listen to, done physical therapy, cut my hair to help lessen the weight on my neck, sat in the hot tub for hours, sat under a heated blanket when I'm not in the hot tub...but still pain has a way of overriding all of that and taking over your consciousness. This is where I am, on the verge. Yesterday and today were better days. I have lots of hope for tomorrow and after that I'll take it day by day. Thank you for taking the time to read this and I hope you'll keep reading!