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.

Approximately four weeks have passed since my last post and so very much is milling around my mind to write about that I am writing this post just to recognize all that I will talk about when I can:

• The bathroom is finished. Finally. It’s beautiful and not completely moved into yet, but being fully used. It was completed Friday night, at 11pm on the 23rd, and we began to use it Sunday evening. I will be fully accustomed to it after everything has been put away for a while… so, in a month or so.

  

  

  

  
  

  

  

  

  
  

  

  

  
  
• The front of our home is no longer a jungle. Perhaps over-pruned, but I can plant at my leisure. It was a gift from my mom.
• L.A. was wonderful. We had really needed to get away from life and enjoy ourselves. I enjoyed connecting with my brother and even got to have a heart-to-heart conversation with him and find out just how very much we both have in common (poor guy). It was also wonderful getting to know Grandma Susie better and meeting Grandpa Bernie and their dog, Patsy, for the first time. Since Grandpa Bernie is extremely hard-of-hearing and is not connected to the internet, I have purchased stationery so that I can correspond with him by letter writing. Seeing my in-laws was also nice, although some comments from my husband’s sister went beyond her usual unthinkingly-self-involved zings into personally-cruel territory and I was very proud of myself for neither physically nor verbally attacking her (or even commenting on it to her). The call-her-on-it-and-get-into-a-hysterical-argument gene comes from both sides of my family on X chromosomes (and appears to only get diluted if a Y chromosome is present), as my little brother pointed out, which made me feel even prouder. Someone must have made her more aware of her need to be a little more sensitive, because she didn’t say anything rude at me after that. Overall, it was a wonderful place to visit, and I wish we could fold the globe into the 4th dimension so I could visit my adoptive grandparents and my baby brother far more often, but I would not want to live in a plastic, prop-filled world.
• I’m trying to get my business of the ground. The website is live and it has a facebook page. I have people saying they will send business my way (including the admissions director of a private school for LD students, a parent of two former students, another parent of a summer student, and the head of a local psych group). I have a now-clean rec room with attached powder room that now has matching “powder room” and “laundry room” signs so those doors can stay closed, a soon-to-be-assembled book shelf and computer desk, a printer stand/filing cabinet, a printer/copier/scanner, a soon-to-be-hooked-up computer and soon-to-be-delivered comfy waiting area furniture. A table upstairs will be brought down for tutoring purposes. The kitchen floor is now clear of boxes and junk and soon the surfaces will be too, so that I can advertise to neighbors a low-cost 3pm-5pm homework help time (to drum up business and make nice with them).
• I’m doing eDiets home-delivery to get rid of a chunk of weight. They guarantee 10 lbs in 5 weeks. In addition, I’ve joined the local gyms and pools, which was a package deal that also gives me more access to community events and activities (to shmooze and make friends). Just spending the past week preparing for the diet has had me lose 1.2 lbs.
• I want a dog. Peter does not. The best reason he has is that my health may one day improve greatly, making FT work possible, which is not conducive to dog-ownership. However, I know a dog would get me walking several times a day, every day, and we could get well or be ill together… I am hoping to foster a senior/adult dachshund. Peter thinks bringing anyone new into the household would be hard on the cats. But me being alone all day and dependent on Peter for amusement (as well as every project that I do, which all seem to involve heavy lifting to some degree) is hard on everyone. Also, doing obedience or agility or just a dog park with the dog would be another way to meet people. Since the summer is a slow time for tutors AND I’m limiting myself to 2 hrs/day of work, and I need an interactive project to keep me from obsessing over buying stuff or food or whatever else I could possibly obsess about, and I’m so incredibly lonely, I think this is the perfect solution.  So, I’m filling out long online paperwork, hoping a good match is out there and that Peter will give in if the house is clean enough and he’s getting enough of what he wants. We’ll talk about it seriously during our couple’s-counseling session Monday (along with the fact that we BOTH HATE that I am so dependent on him to do things that will enable my projects, so I don’t push, but it hurts me when he shows such disinterest in helping with getting my business started or clearing out communal space when I’ve already put a lot of work into it, but he needs some down time and relaxation time because he does work a 40-hr week, which is also why I am okay with him spending so very much time out of the house playing Magic: The Gathering with his friends, even though I am desperate for attention), and he’ll see this sometime before then so it won’t blind-side him.

So, that’s about it. A lot going on, all in a tiny span of time and all making laps around the inside of my tiny, youth-hat-sized skull.

Of course, renovations are stressful. Not only is there a lot of money on the line, but there are so many decisions and a great deal of varying levels of skilled labor to deal with. Then, there’s the time demands, the loss of any semblance of a routine, and (in this case) the loss of a bedroom and closet access. It’s enough to tax even the most patient, together, organized person who has plans and subplans and time up the wazoo. However, despite the fact that I am extremely patient when dealing with the disabled (or merely stupid) and I have everything so organized it’s gone ridiculously smoothly even when we’ve hit bumps in the road, I also have fibromyalgia.

FM’s something I’m not good at advocating about; I am more likely to just try to tough things out whenever possible, especially when the only other option is verbally laying into someone repeatedly. Unfortunately, my husband avoids confrontation whenever possible, sees the renovation as My Project and therefore something he just puts up with, does not always see how my FM is being inflamed by what is happening, and has not always been of the “here, let me say or do something so you are as un- uncomfortable as possible” frame of mind. He’s more of the tough-it-out, you-brought-this-on-yourself, if-you-need-to-embarrass-me-by-using-a-cane-you-shouldn’t-go-out mentality. And I can’t have my mommy call his mommy. In fact, I didn’t have the subcontractor’s (I’m sorry, “project manager”) cell number until Wednesday, when he called me at 9:45 to say he was running a little late and would be here by 10:30-11, which wound up being 11:45.

But tonight, as he went home yet again saying “all I have left is…” (which was what he said Tuesday morning, claiming he’d be done by the end of the day), I just lost it and took my carefully organized box of “last details” to innumerate them all with him and made it clear that I expected him to be here during the day. That was as harsh as I got. He left. I’ll see him bright and early (”earlier than the usual time”… so, maybe not long after 9?) tomorrow and make it clear that he needs to physically stay here until the job’s complete because I need to be able to have plenty of time to clean the bedroom while it’s still light out. I’ve also sent an email to his boss to let him know that that’s the expectation.

The issue is really how the stress interacts with my fibromyalgia. I am hypervigilant during the hours they are expected to arrive/return as well as during the time they are here. I wake at 8 and rush to get dressed and ready. I’m lucky if they’re here by 9:30. They often leave for supplies, men, etc. (a lot of etcetera), as well as meals. But after 4 they work until somewhere between 6 and 11pm, with only 1 or 2 trips out. However, that gives me 12 hours of vigilance (unless I collapse into a brief nap that usually just leaves me feeling nauseous). Add to that the fact that I’m not in my own bed and there are no quiet corners to hide in, and I might as well be working for all the pain I’m in. Plus, I don’t feel comfortable leaving the house except for an emergency (out of a vital Rx or a very necessary doctor’s appt) and as we get closer to the end, they need immediate input (and reminders that what he named isn’t close to all that needs to be done, even if it all fits into a small box) often enough that I’m kept on my toes. Also, as the subcontractor/PM said that he’s not coming back once he’s done unless there’s a case of gross negligence, I check up on the project often enough that I caught the mistake of the backwards shower door (so the special water-beads-up coating was on the outside of the shower) today.

If my husband could have played the bad guy or even just hadn’t had a tough-it-out/we-knew-what-we-were-getting-into approach, I might have said something to minimize the effect this is all having on my body. But, then again, I could have mentioned that the longer days (a direct result of their less-than-determined daytime work) was having a negative impact on my pain index, or even that having the distraction of his calm company playing a game or going out for an hour would help, especially given how little I saw him this weekend… But, instead, couple’s therapy Monday night and the Sabres’ playoff game Wednesday night each magnified my stress and pain exponentially, and Peter’s refusal to commiserate with me or even listen to me bitch has really driven me crazy. But, again, I could have said something. Even exploding about it is better for me than holding it in.

But then, even 13.5 years later, I’m still the girl who went down below 95lbs and up to a near-toxic level of medication because I wouldn’t let my weakness discommode anyone by complaining about the lack of effects or the overabundance of side-effects (such as panic attacks, school phobia, and a marked increase in my depression and suicidal thoughts). I just said that yes, I do want to get better and will do my best to try to tolerate a higher dosage.

Tomorrow morning, though, I have a facial I’d rescheduled from Wednesday evening that I refuse to cancel (even if it makes my face look worse, I should heal in a week’s time), and Saturday is my body-glow-and-wrap. These should be relaxing, moisturizing, slough off dead skin, and include at least some scalp massage. And, once we’ve left for Cali, I can relax during the day on Thursday and Friday of our vacation next week (family stress starting Friday night, despite my awareness that it is all in my own head, will negate the relaxation factor of any breaks I take the remainder of the time).

Ahhhhhhhh… I feel better now that I’ve gotten this all down/out. I know I can’t control people and I really don’t want to be a bitch or OCD, but I also have feelings I need to get out and if I dump them on Peter, he feels responsible in some way or somehow I’m not doing the mature adult thing of sucking it up and dealing with the consequences of my choice to renovate the bathroom. Maybe now, I’ll be able to fall asleep

By the way, the bathroom does look gorgeous and luxurious, despite its tiny size.

The way in which people love one another is as interesting and diverse as how they show their love.

Some people love in an abstract sort of way. I’m related to you, so I love you. But when it comes between their own comfort or routine and the more distant needs of that relative, the urgency would have to be great to impel them to do something outside that comfort zone.

Some people love so thoroughly it’s almost smothering, but very comforting. They want to be there for you so much that they practically want to crawl inside your skin and be there with you through the big and little ups and downs of every single day.

Some people love with their whole hearts and it doesn’t matter how long it’s been since you’ve seen or spoken to one another. There’s just always that instant connection of love and togetherness, a bond that just strengthens as you grow. If you need them they will drop everything, and vice versa.

Some people love insecurely, constantly afraid something could happen that would shatter the relationship.

Some people love with small gestures and just sharing their lives each day, being there for the ups and downs and the boring sameness that is most days.

They say animals can give unconditional love. Every day at 4:30 is a special time when the usually-self-contained Leela (who is more attached to Peter than myself) demands loving attention from me. When I sleep in, I also often find Leela curled up next to or on me. Stewie (who attached himself to me as a kitten) has a very needy, but companionable, love. When he gets cuddly, he will look up at me like I’m his world. When he isn’t feeling cuddly, but senses my need for it, he will curl up on the couch just barely within reach or stretch out on the ottoman. When I’m up late, he comes down with me, occasionally yelling at me to get to bed, and then eventually follows me back upstairs.

It’s amazing how many more ways people love that I didn’t even mention. But then, everyone and every interpersonal relationship is different.

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…