!( - )

!( - )

May 15, 2014

My New Every Day: How I Am Now

Last week, on Thursday, May 8, to be exact, I posted about it being exactly 4 years since I graduated college. That is just crazy, you guys--the time span of a whole college education has passed since mine.

I remember pretty well the feeling of being finally done with college. I moved back home with my parents, and set out to find a job asap. I fairly quickly made connections with a publishing house and began editing for them. At that point, the only problems I had in life were being long-distance from my brand new boyfriend and the rather insane projects I was handed and expected to make perfect. (Like I've said, "Behind every great book..." ;)

I mentioned on Monday that a few months into that job my health started going south, really out of nowhere it seemed, and by January of 2011 I was diagnosed with fibromyalgia. Despite new drugs over the two and a half years that followed, I really just got worse. And knowing that I would never get better, never be normal and healthy and free of worries like pretty much everyone around me seemed to be only put a darker weight on the daily multitude of symptoms that became my norm. I had to stop my freelance editing because of my lack of ability to concentrate and think as clearly as I once could. I did start making jewelry the fall of 2011 just for kicks, and the flexibility of such an endeavor gave me the freedom to do something with myself in those moments when I could, and have a happy escape. Otherwise, I literally would do nothing.

By the fall of 2013, this was just some of my sad every day:

1) Daily pain of every kind: stabbing pain that will take your breath away, tight and sore limbs, that indescribable, sensitive, don't-touch-it-pleeeease pain, all at any given time anywhere on my body.
2) Headaches and eye pain, which always encompassed my whole face and teeth and left me in tears.
3) Light and sound sensitivites that rendered any trip to a restaurant such an ordeal I was afraid the sensory overload might actually bring on a panic attack.
4) Depression--not quite as bad as it was back in 2011, but still not normal.
5) Stomach pain after every meal and such horrendous IBS and digestion issues that I would nearly pass out from the intense pain every so often caused by my very sluggish system. That is the absolute worst symptom I've dealt with--you literally want to die while it's happening since the pain is so bad. Bad is not a deep enough word. Let's just say if having a baby feels like that, we may be rethinking ever doing that...
6) Fibro fog--daily, with little breaks in the clouds for a couple of minutes every couple months--so obvious to the point that my husband could see it on my face when I was "awake" suddenly.
7) Hair loss and terrible hair health--my cosmetologist sister-in-law saw my hair for the first time in about a year and confirmed what I had noticed: it was in terrible shape. Basically it was as sick as I was, and I do very little to it and never color it. I also developed terribly itchy bumps on my scalp that would drive me insane, diagnosed by a "dermatologist" (I don't wish to talk about that appointment) as seborrheic folliculitis. Whatever.
8) Completely reversed sleep cycle, meaning I go to bed anywhere from 4 am to 10 am and get up approximately 12 hours later. I literally would not get sleepy enough to go to bed, no matter how tired I was, and if I would lay down to try, my thoughts would have 12 windows open at once and just rotate between all the different things I needed and wanted and forgot to do. I even tried staying up for 24 hours to "reset my clock" more than once. Useless.
9) Energy? Nonexistent. I was just always a various level of exhausted. Taking a shower was my accomplishment (an every other day accomplishment at that), as was taking pictures of my jewelry to list on Etsy. Making dinner and cleaning were out of the question.
10) I was unable to ever get over a cold or similar sickness without the help of antibiotics and steroids, ever since about 2009.

I shared yesterday the amazing treatment that I found last fall, so I want to contrast the above with how I am now. Please keep in mind the multitude of problems I was found to have and the incredible sensitivities we've had to deal with and work around in my treatment, so I am not as far along yet as most people are by the six month mark of treatment, but I am gradually getting there.

Literally the weekend after my first treatments, I was feeling better than I had in a long time--I'm not saying all better by any stretch, but just slightly improved. While it's not out of the realm of possibility for brand new treatments to actually make you feel a tiny bit better after the first visit, I honestly think it was that the unbearable weight of knowing I had no hope had been removed and replaced by a hope I never knew was possible. Like I had a second chance at life again. That first weekend, I actually, helplessly, began dreaming again. Thoughts of what I wanted to do with improved health welled up in me, and it felt like I would be able to do anything. Can you imagine the feeling?

So here's a brief summary of where I am now (please note that my improvements have been very, very gradual, so this is how I am now and not by month two or month four):

1) My hourly pain is now down to a few times a day at most, and not nearly as widespread and severe as it was. Yes, I still have pain, but much, much less often than I did.
2) My headaches are incredibly improved. I've maybe had four or less of the headaches I described above since treatment, and have much fewer less severe ones than I used to too.
3) I am still sensitive to lights and sound, but not as much as I was.
4) I'm not nearly as depressed as I once was, maybe not even at all--and a lot of that could be the fact of knowing I am being helped and there is hope for me.
5) I do still deal with stomach issues, but my stomach does not hurt after every meal, and my IBS is greatly improved. It is still most definitely a work in progress.
6) I do still have fibro fog, but I feel slightly more awake than I used to, and the clouds aren't as thick. I can't wait until they've disappeared.
7) The hair loss did stop once I began treatment, and I got my hair cut recently and the cosmetologist, without knowing anything about me, proceeded to tell the girl near us, "Look at her hair!" and pointed out how healthy it was. Well, that made my day. I hadn't even begun hair and nail supplements yet. And my scalp problem is not all gone but improving, and I can actually make it without my prescription shampoo.
8) My sleep continues to be one of my biggest issues (I'm writing this at 3:15 am), but I do get sleepy at these hours that I would normally be wired during--and that alone is a huge step in the right direction and means my cortisol levels are beginning to listen to us.
9) I still don't get what this "energy" is that people talk about, but I find myself actually doing things nowadays. Like making my own meals a lot of the time. That alone is a big indicator--if I make my own dinner, I'm doing better than I was.
10) I got over a cold without prescriptions this past winter for the first time in years. It came back some a couple weeks later, and I still kicked it.
Six months ago, all I could do was make jewelry and attempt to run a very small business from my bed really. Getting a job outside of the home was out of the question, and every day was misery.

Now, I've added a full-time blog (hey, you bloggers know it's true) to my days, which includes taking pictures outside, something I'd never do, might be about to launch yet another business (whoops--sneak peak, guys!), am actually considering a "real job" (though part-time--I ain't Superwoman! :P), and continue to discover new things I want to do--and am actually attempting to do--that my creativity can't help dragging me into.

No, I'm not all better, and I'll never really be all better, but if my health was level 10 awful when I began treatment, we're at least down to a 6.82. The goal is 1, but able to dream and do some things is a whole heck of a lot better than my. life. is. over.

I'll keep you all updated on my health journey (that's part of the reason I'm here!), because this is definitely not over. This is not at all where I thought I'd be at this point of my life this time four years ago, but I am not where I thought I'd be at this point just over six months ago either. Life is hard, health problems suck, but there is hope. And I'm thankful for it every day.

No comments:

Post a Comment

Thank you so much for taking the time to comment! Comments make me happy, and I strive to reply to every one. I almost always reply by email so I can be sure you see my reply, so please make sure you're not a no-reply blogger!