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.

Pain sucks. Yeah, I knew that already. And I’ve spent many nights up awake, in too much pain to sleep until my eyes started to close themselves. However, this is different. It’s horrible, nauseating, and has not gotten better within an hour of a vicodin and a flexeril. Because I have four horrible pains.

1. I have a horrible sinus headache because trees and grass and flowers are blossoming. Every sinus on my head is swollen and hurting.
2. I got my first period in 6 months. How is that possible? I’m on the three-month birth control pill, Seasonique, and three months ago my period came late and barely lasted for 1 day (it was more spotting than anything). Since I have fibromyalgia, my muscles get achy from being contracted/used as they usually are, and hurt a lot if more than usually used. So, since I haven’t used my uterine muscles for 6 months, well, a surge of cramps will cause nauseating pain.
3. My grandmother-by-adoption (and marriage) broke her wrist and a good friend broke his hand. Since everything happens in 3s, I thought “who’s next?” as I was walking on the stairs. And my left foot turned. So my ankle is killing me. The only way I know it’s a normal turn/twist and not broken is the lack of any swelling or discoloration. Stewie is lying on it now, and it’s feeling a little better. But I did something to my left wrist as I tried to break my fall and that’s hurting as  I type.
4. I’m an idiot. That given, after the couch and chair were delivered, I moved and turned them (they were heavy, but on sliding casters) so that they switched sides of the seating area of the tutoring room, and then moved them back 6 hours later. Now, my arms (especially my left arm) feel like someone tried to rip them out of the sockets.  Again. I felt this way shortly before we went to LA, and couldn’t even hang shirts up, only this time my neck kills, too.

I better feel better quickly, because I’d had plans for this weekend involving putting books on shelves and clearing 2 kitchen counters!

Ahhh… it felt good to get that whining out. Thanks for listening.

My mother visited this week. She arrived Sunday, Pi Day, the day after my 30th birthday, and stayed until this evening. Almost exactly 5 full days of being silly, eating delicious food, reminiscing, and – oh yeah – tons and tons of cleaning up my life.

Monday, my mother and I cleaned out my study (and what had spilled into the hall). Even the books that I was planning to bring downstairs, she brought downstairs. It was amazing, the lifting and carrying – and this was only the beginning! The only mess left over is the paperwork and CDs and such on my desk, and the table is still up there but, for now, it’s welcome.

Tuesday, we cleaned all my stuff out of my classroom. It was stressful and sad, and it was so much easier having my mom with me. Then we went to the mall, checked out Nordstrom’s, bought some little things at Sephora and got my birthday gift, and… we purchased new eyeglasses! I know that doesn’t sound huge, but if you wear glasses every day and haven’t gotten a new pair in 4 years, it’s a big deal. I got the same shape I had before, but in blue with some silver accents. My mother got a pair, too: wire-rimmed tortoiseshell glasses that are very round on bottom and somewhat round on top. She says they’re Daniel Jackson from “Stargate: SG1″ glasses, not Harry Potter glasses. My first reaction was that they looked silly, but I got used to them quickly and they look very nice on her oval face.

Daniel Jackson from Stargate: SG1

Wednesday, my mother and I tackled the bathroom renovation. We first visited a high-end tile store and found a perfect tile for the shower and floor and a mosaic tile I really liked, too. They gave us a sample of the tile and we went to Home Depot to look at pre-assembled vanities and linen cabinets, as well as prefabricated counters. Not only did we find them in clearance, but they were just perfect for the tile and the room.

cabinetry

Then, we found tiles that were the same color for 1/5 the price and a similar, but less dark, mosaic tile! It took hours and I was exhausted and just sat down in pain half-way through, but the comparing of similar tiles, selecting the edging tile (which is marble), and just finding what I was hoping for was sooooo worth it, and it would have taken me weeks and left me feeling dissatisfied if I hadn’t had my mother with me.

Due to my pain and flagging energy, I asked my mom to stay an extra day so we could actually spend time enjoying each other and doing things at a more leisurely pace. Luckily, she could stay! So, Thursday, we went sneaker shopping and my mother spent nearly an hour taking every single box and bag and random piece of clothing out of my car and down into the basement, where I will be setting up a room for tutoring and waiting (for parents) / game-playing (for friends who we have over).

I have been driving around with 2 classrooms and 1 cubicle in my car since leaving my PT job tutoring special needs college students in October 2008 for an “amazing” opportunity to head up math curriculum for a national virtual charter school (an alternative to, or version of, homeschooling). I have felt homeless and embarrassed of my situation and it (along with my study) was an albatross I dragged around for years, adding to it, letting it spill into my kitchen to make room for groceries…

I can’t even put into words the freedom and hope my mother has given me, just by helping me with all this. I can totally handle the other projects in my life now that this has been sorted out and dealt with. The bathroom stuff was fun and helpful, but the cleaning up of my – well, of my life, really – was such an incredible weight off my shoulders, I get teary just thinking about it. I feel such hope about being a functioning professional special ed math tutor, with room to have a personal life.

Thursday afternoon and Friday, my mother and I just had fun and watched some episodes of “The Big Bang Theory,” including the newish episode of Sheldon getting stuck trying to solve a problem involving electrons moving through a graphite surface (I believe), the episode in which Penny dislocates her shoulder and Sheldon drives her to the hospital, and the episode in which Leonard’s mom first comes to visit.

I dropped her off at the local Amtrak, but I miss her already. Yes, having a close friend nearby would be nice, but it wouldn’t take the place of the wonderfulness of a visit from my mommy. I wish we could just spend a day together every week, or a weekend each month. However, I still haven’t managed to fold the Earth into the 4th dimension so that travel time would be inconsequential. Unfortunately, we’re both on our best behavior, because visits are rare…We love each other, but we can drive each other bananas. If we lived near each other, tears would be shed, neither of our husbands would be able to put up living with us, and killing sprees might not be an impossibility.

So, thanks to my mother, who cleaned up my study, my classroom, my car, and filled my basement (and my husband, who cleaned up my computer and loves all of me, including my craziness), I now start my 4th decade full of hope and excitement over all the possibilities.

I’ve had the same rheumatologist for 4 years, now. He’s seen me working and in pain and working and using a walker and fresh from the hospital and completely, unexplainedly fine, and working again and slowly getting worse. The past few visits he’s been telling me I’m really not that bad, when I just rest and stay unstressed. However, I surprised him today. He started up with the “So, what hurts?” and really not believing me when I said “I’ve been feeling much worse.” I said I have 3-7 migraines a week, and headaches the other days. He really didn’t seem interested in helping that. But then we got to the specific areas of localized pain and, wouldn’t you know it, the part that was the most painful was the shoulder he just gave an injection to 6 weeks ago. Usually, the injections cause a great improvement, so now I am possibly being honest and undramatic when I say “I’ve been feeling worse and have been unable to exercise properly.”

In the end, all my doctors agreed that I cannot return to full-time classroom teaching, and I have forms filled out by all of them to that effect. Hopefully, I will continue to live off the sick leave bank through June 17th (the 100th day of my Sick Leave Bank leave, 6 days before teachers are off-duty but 2 days after kids leave) and before getting let-go. If not, I can start tutoring kids to prep for finals, but I’m hoping to get as much time to get better as possible.

Here’s the skinny on my pain:

Weight gain does not add padding for my joints, back, or tush; it just adds weight to lug around and a greater amount of skin to be overly sensitive.

I can’t sleep on my side, because of both of my hips hurt and both of my shoulders displace a bit, but the weight of my DDs makes my breastbone hurt when I sleep on my back. If I don’t sleep well, I am achier the next day. And so it goes day after day until I finally sleep for over 12 hrs straight, after which I feel awesome and do too much and then can’t sleep because I’d slept so much and the cycle restarts.

Exercise can help if it’s just enough (so a little more than I feel like at first and a lot less than adrenaline helps me want to do once I’ve started). The next day, I can do the same amount. The third day, I can do a little more…  But once I stop or get hurt or do too much, I’m practically back to square one. It’s very difficult.

Meds are not as spectacular as they sound, but they do help.

• Lyrica causes my nervous system to quiet down; like having the lights off and the blinds closed on a sunny day, it helps keep the lights out, but there still is light, or like making the middle part of a swear word silent for TV, you still get the gist but it’s a little less offensive.
• Nabumetone is an all-day NSAID, so I don’t have to take Advil or Aleve. It means I never know I’m sick, because it also works as a fever reducer, but it does turn the pain dial down a notch.
• Flexeril is a muscle relaxant. I only take it at night to relax enough so I can sleep, or on the very very very rare occasion that I’m having horrible muscle spasm pain, especially in my neck. It’s kind of like removing the sword from the wound: it still hurts, but at least it’s not still slicing you.
• Hydrocodone (a.k.a. Vicodin) is a mixed bag. It’s a well-known opium-derived pain reliever that can totally lower my pain and make me feel human and relaxed and wonderful. It can also lower my horrible-level-9 blocked-out pain just enough that I feel it, causing unspeakable discomfort until the meds wear off. Plus, the more frequently you use it, the more you need. Plus, it is potentially habit-forming.
• I have just discovered Lidocaine pads, which are awesome for my ribs, breastbone, and other bonier places. Not as good for inside joints (like shoulders), for my neck (under my hair doesn’t work, for obvious reasons), or even tight muscles unless it’s a nausea-inducing, swollen, pulled-muscle pain. But I do use them up to 3 at a time either to get through a rough time in public wearing a bra or to get to sleep. (A heating pad also works well for my lower back/hips.)
• Klonipin is actually a psychiatric drug for anxiety, but it also relieves stress-induced muscle tension. I always surprise myself if I take half of a 0.5 mg tablet (that’s 1/4 of a milligram) during the day, before a stressful activity, because I just can relax and enjoy myself much more.
• Cymbalta is an antidepressant that is also FDA-approved for people with fibromyalgia because it works on just the reuptake of norepinepherine and has few side effects. Since the ECT, it is all I’ve needed to manage my depression and depression itself can cause all kinds of sleep disturbance and unnecessary stress.
• Seasonique is a 13-week-long birth control pill. It delivers a steady, low dose of hormone over nearly 3 months. This minimizing of fluctuation helps my mood considerably and reduces the amount of PMDD (which is like the raging stereotype of PMS, only worse) and PMDD-related-stress and PMDD-related-pain that I have had to deal with, even on the cheaper 4-week pill. This last cycle, I had a 1 day long, very light period and barely any PMS.

On another note, I read an article about foods that are good for and bad for fibromyalgia pain. Apparently, sugar, aspertame, and other artifical-sweeteners are reported to make pain worse by approximately the same amounts, so I’ll just go with fruit and ignoring articles in which all the test subjects start out believing certain foods effect their pain.

In addition, I’ve discovered that being home and doing very little means that I use fewer points than Weight Watchers allows on a daily basis (thus my weight gain). So now, I just eat as few points as possible with that daily points level as my “splurge.” We’ll see if it works.

That said, I’m going to make an appointment to see an allergist about possible gluten issues and one with an acupuncturist about my migraines, my sinuses, and my fibromyalgia pain.