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

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.

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