I just watched Pixar’s “Up” for the first time, again (since the 1st time was during my ECT, I remembered little more than sobbing through the beginning montage). It can’t help but make me cry – especially after this most recent flare. Let me explain.

The movie is predicated on this Great Love that lasts from childhood through old age and beyond…

When I first saw it, I probably felt two things (1) love for my husband and the hope that it would be that wonderful, and (2) guilt over having been depressed enough to be hospitalized, which I believe hurt him more than he’ll ever say, especially to me.

I still feel that horrible, gnawing guilt over the fact that I thought he, and my other loved ones, but mostly him, would be better off without me in his life, especially if it was deemed an accident, and that they all now know just how selfish I had been.

However, I now feel a second guilt: we aren’t aging together, despite being approximately the same chronological age. At 29.9, my husband is rather healthy, despite untreated allergies, and in relatively good shape while I, at 30.2, I waiver between being a seemingly competent person and a decrepit nearly-bed-ridden crone.

I’ve seen marriages crumble, or at least become very strained, when the age difference suddenly becomes significant and limiting, or one person becomes more disabled than before… The disabled individual, like me, is often humiliated by how much they can’t do (or can’t let themselves do, due to potential consequences) and feels guilty. The younger or non-disabled partner is taking on more and more responsibilities, feeling more pressure at home and work, their recreation is limited as well, and so he or she can be a bit resentful. This leads to tensions and disagreements and miscommunications, or just resentful trudging-through.

So, this time I saw “Up,” I cried because I don’t know if we can have that kind of loving, lasting partnership when I now behave like I’m more than twice his age. I feel as though my only real hope for having a happy, loving, lasting future with the man I love is losing at least 35 lbs over the next year, getting my business running, and personal-training by someone who’s had experience and success with fibromyalgia patients. It may not be true, but it certainly feels that way.

I’m finally feeling better, though. Last weekend, I was basically in bed both days, and was in increasing pain over the course of the week. However, Friday night I slept over 12 hours and then last night I slept 8 hrs and then had two 1-2 hour naps later on today. With this sleep, my skin no longer hurts and I was able to do some cleaning of the kitchen floor, with Peter’s help. Tomorrow, I have my first training appointment, Tuesday, I have a woman from the dachshund rescue coming to do a home visit before approving or denying my application, and then Wednesday, I have a former-tutee-turned-pre-teaching-college-student helping me get my tutoring room together.

This means I’m praying I can get the table down to the rec room and get the first floor and downstairs a little cleaner by the end of this long weekend, with my husband’s help, and still stay relatively low on the pain-scale. We’ll see how that goes.

I’ve been feeling very frustrated over my fibromyalgia-related limitations. This past week, my arms (or, rather, the shoulder-blades/upper-back region) have been hurting horribly and the muscles have swollen. This weekend (Sat & Sun), I did nothing. Quite literally nothing (aside from using the bathroom, brushing my teeth (electric toothbrush), and feeding myself a limited amount).  I lay in bed listening to The Girl With the Dragon Tattoo yesterday and some Neil Gaiman short stories today, sometimes propping myself up in bed and doing Kakuro (cross-sums) puzzles while I listened.

My husband spent the weekend at a “Magic: The Gathering” Grand Prix tournament just outside D.C., coming home only to sleep a few hours Saturday night and finally crash around 5pm on Sunday. He did very well Saturday (top 220 out of 1930, getting him into the 2nd day’s rounds), but the adrenaline high only lasted enough to get him home. So I haven’t seen much of him or gotten to talk to him.

Talking on the phone has been difficult, as has being on the computer, due to the amount I need to use my arms. So I haven’t been able to spend time chatting with my sister or brothers or niece & nephews or grandmother (well, technically, my husband’s grandmother, but she’s adopted me which is a wonderful warm fuzzy feeling).

I couldn’t clean the kitchen floor so local students can be invited to study here. I couldn’t put books on shelves downstairs to get the tutoring room together. Heck, I couldn’t even put dishes away and could barely refill my water bottle with the Brita. The stuff that’s left over from the renovation needs to be returned to Home Depot and Lowes, but my husband has to put it into my car. And the kitty litter, which I’d thought my husband had changed when we went and got litter on Thursday, had not been changed (and it was disgusting then – I am so, so angry)!

Someone’s going to come do a home visit to see if it’s a suitable foster-dog placement. Right now, I’m not ready to let someone into my home.

I feel let down… My husband said I could count on him to do things for me on Thursday and Friday evenings, but that wasn’t completely true, because he really was only willing to do 30 minutes worth of work, max, and if that involved going out and picking up the litter, well, then the litter would have to be changed later. My husband made it sound like I could depend on him to handle the garbage every week, but he will only take 1 trip out on Thursday morning, so if everything can’t be brought on that trip it’ll have to wait. So, when I came down on Thursday, the master bedroom garbage pail was empty (but still in the kitchen) and the cooler from eDiets and the big black garbage bag were gone, the kitchen garbage was still very very full.

It’s a horrible situation: my husband is extremely vehement that he does NOT want people coming in to help me clean even just once in specific rooms, but he is too busy and needs some down time and therefore hasn’t had time to do much cleaning, like scrub the kitchen floor or counters, or wash windows, or do the dishes last week, or just put the Home Depot stuff in my car (I can tip someone for helping me load and bring it into the store), or even go get his own Pepsi out of my car. I understand his point of view: he wakes up early, works all day, needs some time to decompress, needs some time to have fun, and needs to sleep… He’s tired and may feel put upon by all the things that need doing that I can’t share the burden of. He does something for me every day and still that never seems to be enough, I always seem to have more that I’m asking of him.

But carrying my dinner plate and a water bottle to the living room is painful – I can’t do much of anything and just keep hurting myself when I try. We’re running out of clean clothing, but he hasn’t carried any laundry down and may not always be available to carry it back up. Going to Target to get my prescriptions was difficult because I had to pick up shampoo for my husband (which was very heavy, ridiculously enough, but so was pushing a cart) and I got home in so much pain I was dizzy and nauseous.

I guess this is something we can talk about in counseling tomorrow. But I feel helpless and frustrated because I don’t feel like there’s any non-painful way to deal with the situation. No matter what, I’ll be the jerk of a bad guy. Either my husband throws himself into pitching in (maybe he doesn’t see the urgency of the school year ending, of HSA week being this coming week, of me missing important opportunities by waiting) or I’ll need his consent to get someone to come by and clean the kitchen and basement and windows, and perhaps pay a former student to help me get the tutoring room together. But I kind of hit my breaking point this weekend, forcing myself to do nothing while seeing so much to do…

On a more positive note, my husband did say it’s okay for me to buy some personal training sessions with an Elite Personal Trainer at the Columbia Athletic Club, so that someone can help me strengthen my body and arms without exacerbating the injury. So, at least there’s that.

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.