9/06/2012

What You Don't See...What You Don't Know

It's weird, I think, but I'm more comfortable revealing my anxiety disorder with OCD issues than I am health issues. Maybe it's that it's possible to take potshots at anxiety and OCD, to find humor at my own expense, to share when I can laugh at it. I'm not ashamed or embarrassed, nor do I feel stigma over these issues. But when it comes time to disclose that I have fibromyalgia, that it often kicks my ass, and that the fairly typical accompanying issues like IBS and migraines can all work together to make my daily life more than challenging, I often stop myself from admitting it. Few people know that each day is a crapshoot, that I drag myself through the motions, often not knowing whether I'll be able to get out the door in the morning, whether I'll be able to walk into class and get through teaching, that I hope and pray and cross my fingers that adrenaline will take over and that being "on" will allow me to forget near constant headaches, nausea, GI issues, pain, and fatigue while I'm in front of my students.

Add in diabetes to that mix, and a medication that's working well to lower my blood sugar, but that leaves me having to be careful to eat regularly and appropriately to avoid low blood sugars, and it provides another thing to have to think about, one that can alter my personality, mood, and functioning in a moment. I'm having a harder time learning to manage this component--the need to stop and eat two hours after each meal--to eat right, so that I get enough carbs, to make sure that the food is good quality, nutritious, than I am in putting one foot in front of the other and doing what needs to be done so that I don't feel worse than I already may.

The last two weeks of classes have been spent moving through each moment, sometimes forcing myself to put that one foot in front of the other so that I can simply get home and collapse in bed with no choice but to sleep. Every single day of the last two weeks has required a nap in order to get through the day, with early bed times, too. Some days there were even two naps and I felt like I was letting everyone down by having to take that time to shut down and recharge. I don't know--still am not sure-whether last week was worse because of side effects from an increase in a fibro med, and then a weekend of dizziness as I reduced the dose back to what it had been for the last four months and whether this week is really any better--no dizziness, but that's the only difference. Having to decide on whether to live with constant dizziness or burning patches on my legs and bone and joint pain throughout my body that strikes like a knife slicing through me is a really crappy choice.

Finally, tomorrow I go see a pain specialist. I don't know that it will fix anything. Fibromyalgia is a tough disorder. I was diagnosed 24 years ago when it was psychosomatic illness and received a medical discharge from the reserves because of it. It's a name I learned to hate every bit as much as I learned to hate doctors' visits where you could see them shake their head and know that they were thinking your pain was all in your head, all because you couldn't handle the stress. I spent four extra months at basic training getting physical therapy every day, so it must have been real enough...right?

I learned, though, to hide that diagnosis in the years after my discharge, to ignore pain, to relegate it to something that was all in my head, not real pain at all, not real damage. Even as rheumatologists and other medical specialties came to recognize and accept fibromyalgia as a real syndrome, with accompanying comorbids that look like a checklist made specially for me, I refused lyrica when it first came out and a military doctor wanted to put me on it. I scoffed at the commercials. I ignored my symptoms, and kept going. I'd already been told it was effectively in my head, all because I wanted to get out of things, after all.

For many years, I was lucky to be home with the kids, where my challenges could be worked around. Can't stand for hours? No problem--at home you can stop and rest, sit or lie down when you need to. Need to sleep but got three autistic kids? Put them in the bed with you and sleep as they jump on you. Or lie on the couch by them as they watch tv. It's a lot easier to work around fatigue, migraines, stomach issues when no one but your family sees you going through it. It's a whole other ballgame when you're in the workplace and you find yourself embarrassed having to explain that the fluorescents make you have migraines, so it's either wear a hat and sunglasses or keep the lights off. For three years I wore the hat and the sunglasses and then I said to hell with that. I avoid the fluorescents when I can and teach in  natural lighting where possible. Hah, and now I wear wigs...hmmmm. I wonder if there's a part of me that recognizes that when we're afraid to stand out we lose our power, and so I push myself to stand out in other ways--ways that I choose-- even when I won't verbalize the reality that my health sucks many days.

If you're family, and close, you already know this stuff, and if you're close friends, you know--I could not have made it through these last three years without the support of my family and two of the closest friends I've ever had (and yet never met!)--their emails and honesty and support let me know it's okay to be me, it's okay to have health issues, and they don't let me wallow. They push me to go to the doctor when I need to--to take breaks when I need to, to slow down--to accept that I'm human. They do tough love really well, and I thank them for that support.

I think that we hide the things that make us the most different--things that shame us, that we think we should be able to overcome. I don't know why anxiety/OCD don't shame me--but maybe it's because I recognize the link between those things and my kids' autism, and no way am I going to project shame onto them--no way no how. It's also just who I am--it's my neurology and that can't be changed--it can be managed, but it is an essential part of who I am.

But being sick is being weak, and having health issues that are exacerbated by stress like migraines, IBS, GERD, and fibromyalgia, well, that stigma still clings to me, even after all these years. It's time, though, to let that go, to not to be embarrassed or ashamed that I have to work hard to get out the door on time because my body doesn't always work well, that I tire out easily and require naps to make it through the day, that I am never pain free. There's no shame here, and therefore, no need to hide. There is, however, a need to keep moving forward, owning that reality, but not allowing it to rule my life--neither by extending effort to hide it or by going the opposite direction and wallowing in it.

It is what it is; it's been there for longer than I've been married. I wasn't the healthiest kid, or teenager, or young adult--this isn't new--and much of it, if not most of it, simply isn't going away. It's a part of my background, like the tinnitus that's been background noise for well over a decade now. There are ways to mask it, like the fans in every room of my house, like the pills I take each day to deal with nausea, to deal with diarrhea, to deal with pain, with GERD, and to regulate my blood sugar, my anxiety, my OCD issues. Spending precious energy pretending it doesn't exist is stupid, and that's certainly a lesson I want my kids to learn well--our energy is precious and we need to use it wisely--on big things that matter.

So you may not see it, may not know it, when you see me walking through the hallways at the college, or forcing myself to get through a night time engagement, and that's okay, but if you do know, if you do see, if my mask slips and you see it, the pain, or a moment of confusion, or if I stop a class for a moment to take pain meds, like I did today, or to eat because my blood sugar's low, that's cool, too. After all, you've seen me with purple hair, with pink hair, with blue hair. If you can accept my zaniness, my issues with anxiety, my need for everything zebra, well, you can probably handle knowing that as soon as I get in my car, I'm going to let the mask drop, as soon as I'm sitting in my office, my demeanor is going to be different--one of the costs of being energetic and lively in the classroom and my encounters with friends and strangers, alike, is that when I'm alone or with family, I can simply let all of it go and sit and be still, and hell, apparently even sleep so deeply crashed across my bed, drooling, that I sleep through my son's efforts to wake me. That, my friends, is worn-out.

Hey, if nothing else, you know I gave the situation my very all. I didn't hold back. And when that nap's over, watch out! Well, after I wipe the drool away and my joints loosen up.

5 comments:

scintor said...

That sounds so much like my day, it's eerie. I salute you and your victories over every day.

melbo said...

Wow ... that's a lot you've got going on. I hope the pain specialist can help in some way. I can only imagine how hard it is to keep going at work. The energy you invest into everything you do is so obvious to me. My guess is though that it doesn't come without some cost to you.

Look after yourself. Best of luck tomorrow. =)

farmwifetwo said...

Hopefully the pain specialist helps.

This getting older thing.... sucks!!!

K Wombles said...

Thanks, Mark--sorry you have the same kinds of issues.

Mel, I appreciate it.

fw2, it does, but it also beats the alternative.


Report from today's visit: no change in medications, but I can try taking my day dose with my night dose of lyrica and see if that keeps me from having dizziness during the day. Also, going to do physical therapy, and I've been told to increase my exercise. So...not much different, but I have a doctor now to unhesitatingly provide the lyrica, which I was having problems with.

Eric said...

Somehow the need for achievement is ingrained in just those people that actually struggle to achieve and perhaps most of the challenges originate within ourselves because of inborn curiosity, that rare requirement for intelligence.
By the way, after nearly two years without,i was hunkering for a ginger cat. Giving the dogs to eat this evening i heard the cry of a kitten in distress.long story short, i hope that "pomme" (she was in the upper branches of the pommegranite hedge) will become a permanent member of the family.