Wednesday, March 23, 2011

On Chronic Pain and Depression - What a Life!

Well, it's official.  The pain and lack of diagnosis finally got me completely down.  I mean down to the point of why bother getting out of bed?

I'm starting to think that there's no way they're going to find out what's wrong with me because maybe what's wrong with me is simply another way that fibromyalgia is making itself known.  A Very. Unpleasant. Way.  Maybe, horror of horrors, I already have my diagnosis.  Since I no longer have any of the female organs that might cause this new type of pain and abdominal swelling, and my symptoms don't seem to have a digestive component, it would appear that there's nothing new under the sun for them to fix.  I have nothing much left to remove down there except my appendix and it, for some reason, doesn't seem to want to bother me.  Very nice of it, since everything else does.

Justin and I went down to Charlottesville last Friday for my penultimate hope...the interventional radiologist.  I had been kind enough to get an MRI of my abdomen for him last December when they first started trying to figure this out - preemptively, since I didn't even know he existed - and he said that he was able to see the veins in my pelvis on the MRI.  I do not have pelvic congestion syndrome.  I asked him a couple of questions and they offered to refer me to a more sympathetic gynecologist than the one I saw here in Winchester that tore out my female parts last April and then blew off my pain.  I said okay and we left.  Justin said the guy looked scared to tell me I didn't have PCS.  I guess he's been yelled at before by people who aren't hearing what they want to hear.  But what the hell.  It's not this guy's fault that I'm in pain and he can't fix it.  If I don't have it, I don't have it.  I'm a realist and can accept that this just wasn't it.  There's no need for yelling. Well, not at him, at least.  Right now, I'd doing a lot of yelling at God or whoever is up there about the unfairness of life.

I'm starting to think that fibromyalgia is a systemic disorder that starts in one place (my right shoulder blade when I was 19 for me) and then spreads throughout your body as you get older.  If this theory is true, I have a lifetime of pain to look forward to (which I kind of already knew and accepted) and it is only going to get worse (which I absolutely had never accepted).  This new pain is absolutely, positively worse than the pain that came before and not only affects me in a "pain" way, but also in a wardrobe way, as I have blogged about ad nauseum.  I'm still wearing pajamas and sweats, people!

Does chronic pain lead to depression or does depression lead to chronic pain?  Well, interestingly, I was checking this out this morning.

Tests Prove Fibromyalgia not the Same as Depression 

Apparently, people with fibromyalgia simply do not produce the chemicals that are needed to relieve pain like normal people.  We have a much lower pain tolerance (Justin could have told you that), but it is not because we are depressed.  I find it an interesting question because, for me, depression and fibro are like the chicken and the egg.  Which came first?  I have no idea.  I've been in pain for as long as I can remember and I've been depressed as long as I can remember.  I'm not sure it really matters, but it's interesting to know that this new study's results say that they are not one and the same thing.

Not getting a diagnosis has been like getting hit by a tire iron.  Repeatedly.  I am simply never going to be out of pain.  And now I'm not going to get to wear the cute clothes that people with normal sized abdomens usually get to wear.  Now that's an interesting fact.  I have been contemplating maternity clothes because normal clothes are just not comfortable anymore and it doesn't seem as if this fact is going to change anytime soon.

I will probably go ahead and see the gynecologist at UVA if I get that referral just to see what she has to say.  But I think she is going to agree with me that there's probably nothing she can tell me that's new or interesting or relevant to getting this pain to go away.  I have to now shift from trying to find a cure to finding a way to living with it.  And that really sucks.

In many ways, I am extremely blessed.  If I have to have this disgusting disorder, then at least I do not have to crawl out of bed every day and face eight hours of a job that I hate.  I can move at my own pace in the morning (for the most part) and my family is very understanding that I have a pain disorder that makes me pretty unhappy a lot of the time.  I know that I am blessed in this area and I am extremely grateful.  I just want that on the record.  I am very happy that I can sit here and write about whatever is going through my head on any given day to my heart's content.  I also have a choice of not writing and just sitting and reading a book (or nine) and nobody is going to get upset with me.  I can even choose to shower at noon and make my doctor's appointments for the afternoon, when I am usually able to get my body moving (if I take it slow).

But...

I have reached the point of despair with this chronic pain thing.  There are things I want to be doing that I just am not doing and that makes me angry and sad.  I have trouble going to sleep because it hurts and now I'm in a very bad pattern of staying up too late and then sleeping too late.  When real life actually inserts itself, it's a rude awakening and I don't handle it very well.  My appointment in Charlottesville last week was at 10:00 in the morning, meaning we had to leave the house right after 7:00 in the morning.  It wasn't pretty and I ended up sleeping for the whole trip.  Thank God for Justin, who is a morning person!

Most mornings, I get up, get the kids off to school as best I can (which means finishing Joey's lunch up for him and feeding him breakfast - I don't have to do much), and then crawl back into bed for a couple of hours.  It then takes a couple more hours to get me into the shower, once the pain meds have kicked in to a decent degree.  Somehow, this doesn't seem like much of a life.  My social network has shrunk almost irreparably and my contact with the outside world is becoming much that of a recluse.  The internet has made this even easier for me, as I can order almost anything I need and what I can't order, Justin will go out and get for me.  There are days on end that I don't even leave the house.  Wow...when I went out yesterday to get my hair done, it was the first time I had been out in four days.  Should that scare me or reassure me?

Yes, in case you're wondering, I have a wonderful therapist and psychiatrist who really care about me and how I'm doing.  I have a great family who also care about me and check in on how I'm doing.  But the fact is that I live with depression and chronic pain and I know that doesn't make me much fun to be around most of the time.  I try not to be too big of a bitch and my family is remarkably tolerant of my moods.  I have developed the ability to fool people not related to me into not realizing I'm depressed and most people can't tell I am in chronic, insipid pain 24 hours a day.  Is this a gift or a curse?  If more people knew what my inner life is like, would more people be getting involved or would it drive them away?

And the pertinent question to me at the moment is:  Does it really matter?

Sometimes, when I go out, I like to pretend that there's nothing wrong with me and it's kind of fun to talk to people I don't know as if I'm normal.  I'm pretty good at it.  But there is a huge relief in coming home and being able to be myself.  After all, I'm probably looking at another 40 years of increasing pain.  And that fact is not something I really want to face, because I wonder how much more pain I can accept and tolerate.  I get to a certain threshold and think I'm handling it well and then something else comes along and adds a whole new layer.  Is this going to be my life until I'm 80 and do my kids the favor of finally kicking off?  I think I'm going to be a pretty bitter person by then, so if they want to put me in a home, I just want them to know that I won't hold it against them.  And hopefully, they will have really good drugs at the home that will keep me complacent and doing jigsaw puzzles or sewing quietly in a corner instead of screaming that I am Sick. Of. Being. In. Pain!

2 comments:

  1. Well, right now you're discouraged and resigned. The truth of the matter is this: In today's day and age, people are not expected to endlessly suffer massive amounts of pain. As exhausting as it is, you have to keep searching through doctors, testing, whatever until you find someone who can help you get relief of symptoms. To just sit back and anticipate another four decades of agony isn't a concept that any human being would or could willingly accept. Keep going... you have to.

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  2. Thank you for the encouragement. I'm not sure where else to turn for help at this point, but will keep looking. Hopefully, there will be some kind of breakthrough in the near future for fibromyalgia!

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