Today, I woke up feeling like I had been a sidekick character in an action movie. Everything hurt. As though I’d been running, dodging random rubble, ducking during explosions and gunfire, hiding in an odd crouched position, hanging from ledges 10 stories up…

How do you explain suddenly getting hit by pain one day but feeling only slightly achy but relatively fine the day before ?

How can you cope with needing more than 12 hours of sleep a day because those 12 hours are so interrupted and light?

How can you get anything done if you have a full-blown migraine 4-7 days a week?

How can you work to strengthen muscle if pushing just a little too far for that particular day means major setbacks?

How can you have a daily or weekly routine and plan things around this, or have anyone depend on you?

I want to be a tutor that can be relied upon, which means I’ll have to suck it up and push through a migraine for 2 hrs a day, and even 3 or 4 hrs some days.

I want to be a wife or relative you can count on, but I can’t promise to be able to do a necessary task “tomorrow” or be up to an outing or get-together on a set date.

But the more frustrated or stressed-out I get, worrying about being “up to” this or that, the worse I feel…

Basically, I’m sick and tired of being sick and tired.

Equality in a marriage can be difficult to achieve. When children are part of the equation, it’s much easier to set aside the generally selfish desire for procrastination and good-enough for the greater good. However, when children are not part of the equation, both parties avoid confrontation like an overdue-but-still-acceptable-within-the-next-week term paper, and one party has fibromyalgia, it can be much more difficult.

For years, my husband and I have found ways to avoid sucking it up and doing chores that we didn’t feel a pressing need for, like dusting or cleaning the toilet. It can also be very difficult to accept the onus of responsibility for certain chores, since it tends to become Your Job if you do it more than once.

In January 2007, I had my first major, super-duper flare of  fibromyalgia and Peter took up the slack (or, rather, all the chores) while I wore myself out commuting for an hour or two each day and teaching & planning for 10 more hours. Three years later, I go on leave, unable to work due to my fibromyalgia and migraines, but slowly strengthening and rebuilding my body and, as a part of that, taking my life and home back. Our living room is liveable and mostly clutter-free. I have sorted through all the mail from the past 9 months in the kitchen. We cleaned our bedroom, I have cleaned bathrooms, I am organizing “my” room, and I have done many, many, many loads of laundry. In addition, whenever possible, I do all the grocery shopping and errands. So, basically, I do 3 gym visits and 2 home workouts each week and do an errand or chore each day.

Unfortunately, the snow storm has done a great deal to mess up my life. I know, I know, that sounds very dramatic, but I have done yoga nearly every weekday with a DVD (”Healing Yoga for Aches and Pains”), had migraines nearly every day, and gained 4 lbs. To make this worse, although Peter was snowed-in with me most of last week, he spent two hours unburying his car on Tuesday, helped me with cleaning the bedroom Thursday, went to the supermarket with me for one and a half trips (Tuesday and Friday), and went off to play Magic with his friends on Friday evening and all day Sunday (he worked Saturday). He left the dishwasher unloaded many, many times (as though testing me to see if I will take care of it). I was forbidden from trying to unbury my car and Peter did not touch it after his car was free. His newest reason (as of yesterday) was that he wants to use his own shovel, not borrow one (so I searched online, discovered Lowes, Sears, Home Depot, and Target were all out, and ordered one on Amazon to get here by Friday). Monday, I borrowed Peter’s car, did 25 minutes (2.5 miles) on the recumbent elliptical cardio machine at the gym, got the now-crunchy oil and 3 cracking belts changed on Peter’s car, stopped off at Target and picked up some essentials (unfortunately, they refilled the wrong Rx), filled the tank up with gas, came home to unpack and eat lunch, then injured my neck and started a slow leak on Peter’s car trying to get out of his spot (the last burst of snow, he just backed over, but I didn’t enter the spot straight, so…), went to the doctor, worked myself up to talking to Peter about him giving me freedom to use my car or allow me to find and pay someone to dig me out, and then picked up Peter.

By the time Peter came out and got behind the wheel, he had little air in his passenger-side rear tire. After much drama, we were towed and it was patched, it was obvious I didn’t drive on it while it was flat (else it would have been ruined), but I went from feeling empowered to having to apologize over and over for doing nothing but try to work with what I was given (and saving his car from near-engine-failure due to having less than 50% of its required oil and that which was there was not liquid, but when I told him that during the day, he didn’t see why I was hassling him). I refused to drive his car since then and mine is still behind a 4 ft-high, 2-ft-deep wall of snow. This means I didn’t do the Aqua Aerobics I was so looking forward to since the last time I did it, 2 weeks ago, and I didn’t get to visit a church for Ash Wednesday and get a dirty forehead. I am in desperate need for Rx from Target and we need groceries and I should go to my semi-personal training…

But I don’t want to drive his car. The roads are bad enough without the pressure I feel under to keep his car pristine and, although I want groceries, a part of me feels resentful and frustrated by my limitations, the set-back, and the loss of freedom and feeling safe in my car. So maybe I’m projecting, but I also know that Peter didn’t care enough to make himself uncomfortable in order to give me freedom in a timely fashion. I understand not going out for Valentine’s Day, and not getting a card or flowers… I understand receiving just a good time together for our anniversary. Money’s tight, we’ve been spending plenty of time together… But… Well, sex isn’t the only way you can show affection, and I feel like he’s not trying. (As for that, I’ve been trying to send out signals, but -based on his responses during my impending and then very very short period- it appears that he is only interested if intercourse is possible.) So what was I hoping for? He could have done some of the unsanitary laundry (Stewie was using old laundry as a litterbox). He could have done a little to make my car easier to access, if not drive. He could have shoveled behind and around where he parks, so it’s less tricky. He could have given me a foot massage or given me time to mess with my RockBand avatar and practice before we started playing together. I had a card for him (a general I-Love-You, not specifically V-Day), but I never bothered to fill it out when I saw his attitude Saturday night and Sunday morning.

I know my being home puts additional pressure on Peter to stay employed. However, I continue to receive a paycheck, and I have a very specific set of plans for the future in order to make money and receive disability benefits if possible. Maybe he can help me do the laundry, or clean the area around the kitchen sink, or give me some cash (I have none right now) so I can either pay someone to dig out my car or get a taxi ride. Or maybe he can call the psych group and have them give him an appointment for individual counselling so he might start to be content.

I know that what I really want is to ***POOF*** get my body back to a reasonable weight (sub-140) and have the physical ability to work out the way I want to. I want to teach and then come home and do very little in order to make the house gorgeous and then sit back in my organized, gorgeous, comfy room. I want to be able to enjoy my husband and have him enjoy me. I want to be able to get pregnant and enjoy that pregnancy and then that baby and then, a year or two later, get pregnant again. I want a family and a life. But between migraines, fibro pain, and transport issues, I’m currently living the life of a shut-in (but without the perks of the occasional visitor). 

But right now, just asking for a balance of household responsibilities, and the occasional ”Thank you, I know X was a pain in the butt, so I really appreciate you taking the time and energy to do it,”  is what I need to do…

My doctors all suggest exercise as a necessary part of fibromyalgia pain relief. A good article to read regarding fibromyalgia and exercise is from Web MD. Basically, all studies suggest that lack of exercise leads to more pain and degenerated muscles. The goal is low-impact, low-stress exercise.

My family is oddly insisting that I sit and do NOTHING, which is also what my body keeps asking me to do. My older brother’s wife had Chronic Fatigue Syndrome. Later, she developed Fibromyalgia as well. The pain she had due to muscle degeneration was off the charts. Also, it took something like 10 years for her to get better, and I am not willing to wait that long. So my goal is to not have that happen. Losing weight and improving muscle strength and flexibility will all lessen my pain. If nothing else, it will also make me more in tune with my body.

So I have been working on the Wii for at least 15 minutes each day, unless I do significant exercise that day (a big outing with a lot of walking, such as grocery shopping, would count). But I’m finding Yoga on the Wii to be less than relaxing, regardless of the program. However, tomorrow I will try the regular exercises from Your Shape, and that may be better. Regardless, Wii will be my fitness backup. My primary fitness source will be a local program that gives residents of my town a 60-day membership, complete with two 30-minute personal training sessions each week, freedom to sign up for any of their classes (such as beginner’s yoga, water aerobics) and use their facilities (pools, hot water therapy, fitness equipment, etc.) at any time. I’m hoping to do yoga and water aerobics on the two days that I’m not with a personal trainer, and then I will do Wii’s Your Shape or Wii Fit Plus for 15-30 minutes on the other three days (although any sexual activity may shorten that time, I’ve decided that I will not count it toward my exercise).

I don’t know what will happen in the near or distant future if I’m let go from my job, but I do know that this will help my situation no matter what, and hopefully I can use it in conjunction with CBT to improve my stress and pain management skills, and who can beat such personalized treatment for $60!? As you may know by now, I’m a planner, so at least this is one part of my life that I can control and will get me out of bed and out of the house in the morning.

Eleven years ago, in January of 1999, I was in a car accident. It happened just before spring semester of my freshman year of college, and I wound up having to take the semester off. However, I was alive and relatively well despite the mangled wreckage of the little red Mazda coupe I walked away from, and I was fervently grateful (compared to two years earlier, when I was deeply depressed and actually cursed having lived to see my 17th birthday).

This was the beginning of a great deal of introspection. Although I didn’t rediscover religion and (my version of) God until taking Chaos Theory two years later, I did begin to truly etch into being my understanding of my reason for being. I was no longer just living because my death would hurt others, but deciding what my life is. Then again, this is what all college students do after their first semester, when a teenager realizes she is now an adult and is living and learning toward the molding of her own future. In any event, that semester off is when I etched into the stoniest part of my mind my reason for living:

I am here to enrich the lives of others.

In other words, I’m not out to change the world, but if I can make the lives of those whose paths I cross a little bit sunnier, or at least suck a little less… well, that is what I’m here for.

So I became less interested in the diagnosis as in the prognosis. I became less overwhelmed by trying to solve my own problems as I became obsessed with trying to find solutions so other people I meet with similar problems might not have to flounder, or at least not feel alone. I became the person you know now. I became a math teacher for special needs students. I became a disability rights advocate. I became a better daughter and sister and friend. 

Fast-forward to a year ago. I was in severe pain constantly. I was struggling with attendance and performance at my cubicle-based curriculum job but could no longer be a classroom teacher. Just knowing me and my situation made friends and family sad. But worse was my home life: because of me, both my husband and my cat were losing hair and I had completely derailed the future we had set out for ourselves. By May, I had worked in physical therapy for over 6 months with little-to-no progress and all my prescriptions were refilled simultaneously. I recognized I was depressed but I was out of new medications to try. I had determined that everyone’s  life would be better if I was just removed from the equation, and that could only be done by a horrible accident. I stopped wearing my seatbelt, started driving less safely, and had started to research dosages each of my medications that would be safe if taken alone, but fatal in combination.

So I checked myself into Sheppard-Pratt, got 10 sessions of uni-lateral ECT (electro-convulsive therapy of a single hemisphere), and now find myself in the same place with a completely different mindset.

I have come to realize that it wasn’t my physical situation that made me a drain on people’s lives a year ago, it was my absolute, soul-deep despair.

Right now, I see options. I see being on disability an opportunity to be a better me, to better fulfill my other roles in life, as well as a chance to feel better. I have accepted the fact that I can’t be everything I want to be and that trying to just hurts the students I want to help and keeps me from being a good wife or being there for friends and family.

So once again, I look at why I was put on this Earth and remind myself that I am here to make others’ lives sunnier, happier, easier, or at least less sucky. I am here to be a good wife, cat-mommy, sister, daughter, aunt, friend, and more… and if I have to put the role of educator on the back-burner and put off the role of mother, well, I should focus on what I can do with the energy I have and be happy that I can afford to be so many things to so many wonderful people, and I will cherish and enjoy the time I can spend with them.

It is nearly 2010 and I am preparing myself for the coming year. As must have become evident, I am a planner. Unfortunately, my body is one giant variable, far more so than the Buffalo job market or the Maryland real estate market. 

While visiting Peter’s family, my time sleeping on the rock-hard futon really did a number on me and I haven’t been able to recover since, no matter how much I sleep, how much time is spent relaxing, or how little I do. I’m beginning to seriously doubt that I can return to work this school year. If I get approved by the sick leave bank, we have some time. If not, we’ll have to step it up. I can’t move until I am no longer part of the “sick leave bank”, but we should move very soon after because our income will be significantly limited. So this is my plan.

• Peter will need to get his resume together ASAP and begin applying to jobs in Buffalo. He can work toward a teaching job, but it will probably take a year.
• I will discuss changing our mortgage to interest-only to lower the payments.
• I will work on getting the house cleared out and cleaned up and talk to a real estate agent so it can go on the market.
• I will send my resume to a school in Buffalo for kids with LD, to the local BOCES, post it on a few websites, etc, and work to get my Students with Disabilities certifications updated. I will also contact two local temp agency (one for health care, one for administrative jobs).
• When we move, we will either live with Peter’s parents until the house sells or move into a rental. Either way, our new rent/mortgage must be under $800, since my disability insurance will be paying $750 until I can return to work.

Oh, and throughout, I’ll:

• exercise 15 minutes to an hour each day with my new Wii Yoga and Wii Your Shape
• work harder to maintain my diet by eating healthily and snacking far less. (My goal is to lose 40 lbs over the year (I lost 20 this past year) and feel healthier, even if I’m in pain.)
• self-advocate more
• be a more active participant in my relationships with siblings and friends
• help out around the house more and work with my husband on our relationship.

Hopefully, I can manage all this, and I hope to have help and support from my husband, family, and friends.