I’ve discovered that getting “BETTER” with fibromyalgia is more relative than I had ever realized. Not in the day-to-day sense, but in the comparison of a set of months (e.g., “Summer”) with a similar time span a year or two or three ago.

I thought I was cured last summer. Other than the migraine headaches and lingering ECT side-effects, I thought I was completely cured. It didn’t take long to realize that, as short-term memory began to solidify and stress sharply increased that I was no longer cured. I just was feeling improved because I was getting plenty of sleep and had very little to stress about (primarily because I couldn’t remember one new stressor from one hour to the next).

I thought I was on the road to recovery this past May and would be all better within a year. I’m suddenly realizing something I’ve tried to explain to parents, teachers, administrators, and students for years: accommodations can make a world of difference, but there are still unpleasant parts of having a disability that you have to cope with and, if possible, work to remediate.

More to the point, I discovered and implemented accommodations for my disability and they have been successful in helping me to live with fibromyalgia, but I still have fibromyalgia:

• I found a way to work in short bursts on my own unique schedule through specialized tutoring (math for kids with special needs).
• I also work to get enough sleep.
• I rest between activities and stay hydrated.
• I pace myself and limit my activities, no matter how “up to it” I may feel in the moment (exercise triggers endorphins and adrenaline that make me feel more energetic and less pained than I truly am).
• I found a personal trainer that is able to work with me, slowly building up ways for me to exercise fully without straining the more tender areas and adjusting depending on how I’m feeling, which strengthens my muscles and increases flexibility, which gives me a greater margin of “okay-ness” before my body begins to feel strained.

But, still, I have pain in my tendons and muscles, as well as paresthesia, allodynia, and hypersensitivity to sound or light. I need at least 10 hrs to sleep a night so that I might have gotten a full 4-consecutive-hrs sleep cycle, as well as rest those other 6 hrs. I take at least one [7.5/300 mg] hydrocodone nearly every day and, when on vacation, possibly more (or other things) to keep me functional and pleasant when I find myself in pain and getting very crabby.

But, worst of all, I have not yet managed to have a full week (a week in which I am scheduled to do something every day) in which I do not miss one appointment or another.

It’s taken me a very long time to be able to say aloud that I my fibromyalgia isn’t better, I’m just getting better at having fibromyalgia. I still hope that, one day, it will get significantly better. But I’m also considering amending my “fibromyalgia is all better” barometer to be one full year of:

• Mild sensitivity to sound or light.
• Functioning on 8-10 hrs of sleep a night and sleeping at night (rather than the vampire-style 2am-to-noon)
• Using lidocaine patches as a first recourse in areas of pain/tenderness and taking one [7.5/300 mg] hydrocodone only during significant pain, at most six in a month, and using lesser drugs like tramadol.
• Missing only one appointment (or day) each month due to pain or migraines.

Which will LEAD TO being able to schedule 3 to 5 students in a day and reducing my fibro-related medications, Lyrica and Flexeril.

So, basically, I’m using a combination of accommodation and remediation, and I’m going to consider myself “ALL BETTER” once I am able to lead a relatively regular (as in regulated or predictable, not as in average) life.

Now, it’s just up to working and resting and hoping…

cross my fingers

knock on wood / klepat na dřevo / χτύπα ξύλο

Loving someone means so many things; some of it is simple and straight-forward, but much of it is complicated. Loving your obnoxious teenager, for example, can be hard (e.g., me, from 12-19 wasn’t a cakewalk for my parents). Loving your parents or siblings despite the random things they do/say or have done/said is just a soul-deep thing and I’ve realized that I can only accept who they are and love that real person and try to understand them. But there’s that you’re-a-part-of-me love deeply embedded. However, sharing your life with someone you love, a partner, a helpmate, is much harder.

When it comes to spouses, most likely, you were not raised together and you do not share ALL the same values, likes, dislikes, hopes, and dreams. Hopefully, you share most of those things, but it’s nigh impossible to share all of them. But you suck it up and compromise. It’s all about deciding how much it’s worth enduring x, y, and z to make your spouse happy, and trying to see your own benefits.

For example, my husband is not a fan of the beach, shopping, or carnivals… but that’s what our visit to Cape May (wonderfully arranged and paid for by my very loving older sister, who also paid for a hotel room so I, with my fibromyalgia, could have sanctuary from the 24-hr-a-day craziness that is two 6-yr-olds and an 8-yr-old) essentially was filled with, along with lots of time with my older siblings (my sister-in-law I count as a sibling, since she’s been in my life since I was in preschool) and niece and nephews, as well as my father. In addition to enduring something that is not his idea of a fun vacation, he paid for it with a vicious sunburn on his feet and ankles, in addition to all the driving, seasickness on the ferry, and mild sunburn on the front of his upper body. It was my idea of a spectacular vacation, but it wouldn’t have happened if it was just the two of us. However, we both love the kids, and I adore my siblings as well, and we see them so rarely that my husband agreed to come along (I told him I’d be okay going alone if he didn’t want to or feel comfortable with missing work) and partake in the family fun.

In the past week or two, I’ve discovered that a lot of our life together is compromising and making the most of it (as well as thoroughly enjoying what we do share). I’ve also come to realize that a few of the things I assumed I’d do in my life just aren’t going to happen, which makes me sad.

For example, I like to travel even to local places, sit at an outdoor restaurant or cafe and take in the local color. Just people-watch. Peter really isn’t into that. He likes activities. Our honeymoon in Athens was the kind of thing that did both, we’d visit places, go on tours, but we also had to eat and it was off-season, so I could take in the local color at a taverna. However, future vacations aren’t as easy a compromise when it’s just the two of us. But we’ll see.

One thing that won’t change is that I’m a dog person and really want the option of one day having a dog (for example, if we have a yard and our kid(s) are of an age to help out and take that responsibility on). But my husband is decidedly not a dog person and does not want a dog in our home, did not want “a dog yard” at our home back when we lived in Western NY, and just thinks cats are less bother and kids have more of a pay-off, so why get a dog (which is like a life-long 18-month-old)?

I also really want to help kids more than I have been able to do as a teacher – I always wanted to adopt or foster a set of siblings (2 or 3, most likely one of which has special needs) that found their way into “the system” and are not young enough (<2) to be instantly picked up. Or just foster/adopt a few local kids over the age of 4. Give them a life they couldn’t otherwise have had. This would have been in addition to kids I gave birth to. But my husband doesn’t like the idea of adopting, especially if we have our own kids but even if we couldn’t…

But the one thing that really, truly bothers me now is getting pregnant and raising kids of our own. I want 4 (well, at least 3 and up to 5) kids, but he wants 2 (maybe 3). In addition to that, my husband is a born child-wrangler. He just knows how to take care of them, how to be firm, how to be silly, how to engage them in a self-perpetuating game without anything interesting around to use… And he loves kids. (I also love kids and feel that we’re better equipped than most to be good parents to kids whether they’re smart or average or have special needs or have special gifts.)

I felt I was depriving him of having children of his own while he’s still young, but he told me a couple of days ago that he does not have the patience yet and has growing-up to do. He’s not yet up to the 24-hour parental lifestyle, with its unending paraphernalia, the planning that surrounds even the simplest trips, and the noise and commotion that can randomly occur when he’s just not in the mood to cope with it…  That’s his compromise to deal with my situation (I need to be well from fibromyalgia for at least a year before we’ll start trying, and closer to a healthy weight).

Meanwhile, I’ve been thinking: I’m 30. Let’s say I’m magically better enough in 6 months to start counting down a year and go off all my meds but 1 tricyclic antidepressant and the occasional 0.25mg klonipin (which frightens me and even just the hormones alone would put me under significant psychiatric watch) so we can start trying to conceive. This would make me 32 years old at the birth of baby #1. My husband wants them to be far apart, but I’m thinking they should be as close together as possible, considering the whole insufficient-and-uncomfortable-depression-meds issue (if I manage to not have to worry about postpartum depression or complications, etc.). But let’s say we wait a year, then start trying again…  baby #2 will come around my 35th birthday. That’s if we’re cutting it close and under ideal circumstances. I thought of “rushing” it, decreasing the amount of time I’m on low meds, but my OB/GYN told me she would strongly recommend against using any hormonal “instigator” (such as Clomid) to make conception faster, since hormone levels are higher (which would amplify my depression, anxiety, etc) and drastically increase the possibility of twins. She said that conceiving and carrying multiples, such as twins, exponentially increases developmental risks to the fetuses, risks to my own body, amplifies the hormone craziness, and makes post-partum depression far more likely and more severe.

So I won’t have 5 kids. I might not even have a 3rd child. And the thing with siblings is, the more you have, the more likely you are to be really close to at least 1 of them, which is what helps families stick together during the hard times. My husband may not be close to his sister, but I bet if he had 1 or 2 more siblings, there’d have been 1 he’d identified with. I have 4 living siblings and I am now close to them all, but have a different and interesting bond with each of them. I want my children to have that, too. Maybe, once I’m over 35, they’ll give me Clomid and I’ll carry twins. Or maybe, if I’ve been trying and charting for 6 cycles without success, they’ll do that. Or we’ll shell out the money for IVF if the first time or two required more than one cycle of hormones, and then I might carry twins or triplets. Or maybe we’ll have 2 kids, each of which is a handful for whatever reason, and the idea of a third would just be too much and we’ll be content being able to make do with being seated easily at restaurants and only needing one stroller. Who knows?

All I know is that I love my husband dearly and want a happy life with him, regardless of what compromises we make in order for that to happen.

I’ve been feeling moody lately. It’s hard to explain to someone that loves me that I’m not depressed, because they’re too used to my varying levels of depression, but I’m truly not depressed.

I don’t feel hopeless and I don’t feel (completely) helpless.

I just feel frustrated because my progress in everything has slowed as though I’m trying to swim in caramel, and lonely because I have little contact with anyone other than my cats, husband, parents, and siblings (in order of amount of contact).

It will take time before people will want a tutor/advocate again; that’s just how the summer is.

It will take time to get the house the way I want it (because I can’t do much myself and I can’t ask my husband to do much more than help clean or move specified things and even then, it’s rarely on my timetable) and then, once the house is all tidy, it will take time and energy to keep it that way.

It will take time before I’m a weight I find at all acceptable.

It will take time before I can do exercises on my own, without a personal trainer, and even then it will take a while before I build up any normal level of strength or endurance.

It will take time before I’ll even have the option of fostering a dog, or before I meet anyone new.

As my favorite psychiatrist once told me, “Sometimes life just sucks.” So, if it gets you down, that doesn’t mean you’re depressed, it just means you’ve properly evaluated the situation and will just have to endure through the suckitude.

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.

Yes, life is frustration, and most people are dealing with frustration of some sort 24/7/365.25. But the life of someone who wants to, but doesn’t want to, and who can, but also cannot, can be especially frustrating. Especially when the whole “wanting to” part is relatively new.

I want to be a productive member of society. I want to actively be a teacher. I want to be a wife. I want to be able to get pregnant and be a mommy. Heck, I want to be able to say definitively that I will be able to do a specific activity or be at some place on a particular day and time. I want to look at the future and not see a thick grey mist of uncertain possibility, of plans that -however tenuous, or however many counter-balances are put into effect- could easily fall apart. When I was a child, the future was a bright glaring white light of potential realities all vying for my preference. As a teenager, the future a dark murky thing I wasn’t sure I was up to dealing with. In my 20s, I thought that determination and fortitude and focus could make anything happen. I’m hitting a point where I don’t believe that. I’m seeing resources as finite; my energy, my patience, my mental clarity, my physical stamina, my time, my money, all have a limit and I can see those limits.

The old me would just type in those given parameters and calculate my life and plans. The new me, the one that actually sees all the life I want to be (and look forward to one day) experiencing, keeps getting frustrated by the fluctuating nature of my limits and the consequences that I don’t foresee. For example, after helping Peter carry in some boxes two weeks ago, I still have too much pain in my fingers to be willing to frustrate myself by attempting to play my lovely, dusty, out-of-tune piano. Another example is the fact that if I go to Lowe’s and Food Lion for short-ish trips, I may be okay and it may even raise my activity tolerance if I keep it up, but if I go one extra aisle or carry one extra bag or then try to do the dishes that night… well, I’m done for a couple of days.

The trick is keeping up a very consistent, ever-so-slightly-increasing amount of activity. I see that, I understand that, but I don’t see how it is possible.

Life-activities, for example, are not exactly things that occur on a daily basis. The laundry can be done one or two loads a day, I suppose… especially the not-so-sanitary cat-enhanced laundry from months ago. I don’t go grocery shopping every single day, and I can’t go walk around stores pushing a cart and NOT buy things every other day of the week. If I drive more on one day than usual, especially in traffic, my right leg will get cramps. If I’m stressed, my neck will be stiff and possibly help trigger a migraine. Doing the dishes is very difficult, especially if there are many dishes, due to the height of the sink, my height, and the relative height of the dishwasher.

And what about weekends? The fact alone that I am intending to share my time and energy with another person changes everything…What about the fact that my IBS/meds cause me to not poo for weeks and then spend a full 24-48 hours first getting the blockage out of the way and then eventually running to the bathroom 5 minutes after I ingest anything, which causes significant muscle cramping from simple use?

And then there’s cleaning, cat-care (yes, petting my cats requires a certain amount of physical endurance), typing (less frustrating because there is a delete key and no set rhythm, yet still taxing on my fingers), keeping up with the bills, making sure that my school district and I are on the same page (although I’m certainly fine now with whatever that page winds up being), taking care of whatever my husband may need from me, keeping my mind active…

I guess I’m just thrown off by how sick my husband is and the fact that I know I’ll be trapped in the house all day for 2 weeks, once the bathroom renovation gets underway. I still have some things that need doing before that happens. I’m also leaving myself projects to do while it happens, as well.  I had plans for this weekend – very small plans, yes, but plans nonetheless – to de-junk and clean the guest room this weekend. Monday, I’d contact the contractor and set things up to start the following Monday and ask what I need to do to be ready for demolition (so clothing in the closets and the rest of the master bathroom isn’t in ruins), make an appointment at the salon(s) for mega-waxing, a facial, a partial-highlight & trim, a pedicure, and possibly a spray-tan in 2 weeks or so (it will probably take several visits to get all that done), and visit Target to get 2 new comforters for the guest room and white sheets. Instead, I’ll be gutting tomorrow and Monday and buying what bedding I can online (at least there’s a teacher discount). I may even do some dishes if my husband isn’t up to it, because we’re out of spoons and I need my yogurt.

In addition, on Monday, I’m starting a very basic, light workout program using my exercise ball (which I’ll have to inflate). I’ll start with 10 reps a day for each exercise and increase that by 5 reps every two or three days. I’ll also wear a pedometer all day every day and do either 2 loads of regular laundry or 1 load of icky laundry each day. My goal is to lose over 5 lbs in 4 weeks (starting Wednesday, March 31, when I put my diet into firm action), and be able to comfortably, easily fit into my pretty new dresses when I go a-visiting:

My New Dresses from Heartbreaker Fashions