Thursday, May 6, 2010

Baby Steps

The weekend was rough, and well, it totally wiped me out. I forget sometimes just how wiped out I get. Sunday I didn't last terribly long at faire, I hit the bed within an hour of getting home for a nap, then when I went to bed a few hours later, I slept through the night. Monday morning I felt like I'd been run over by a mack truck and a bus both. The same was true of Tuesday and Wednesday as well. Wednesday I managed to stay up all day long without a nap or too much pain. This morning I thought I'd been hit by a car, which, while it still sucks, at least it wasn't a truck or a bus this time around.
I was still slow to get moving and get my brain functioning reasonably, but it did happen, and I did manage to get a bit of work done, and a handful of things posted on Ebay so that I can get some income generated.
This week I am going to endeavor to post 5 items each day, with the exception of Saturday & Sunday. That is in addition to getting resumes submitted and applications done
Tomorrow I am going to sort through more of the Fibro information that is out there and figure out the best plan of attack for me to address it and keep it under some semblence of control without the support of insurance to offset prescription costs, etc.

For now, it's time to snuggle down into bed, hopefully the bedroom will cool reasonably and I'll be able to sleep well.

Monday, May 3, 2010


Today has been pretty much a Downtime day. Last week, after losing my job on Monday, I had a crazy busy week. My roommates had their wedding planned for Saturday, and there was a good bit of sewing to be finished up before we left on Friday afternoon to get to the motel, organize who would be in which rooms, check the reception site, and settle in for the night. Most nights that week, we were up until nearly midnight working on the various projects.
On Friday all of the sewing was done by about 10 a.m., and we loaded up the truck van and moved to Beve Waxahachie around 1. By the time we got all of our stops made and pulled into the parking lot, it was about 3:30. By 4ish we'd sorted out smoking/nonsmoking, first/second floor, and king/double queen rooms and were moved into our homes for the weekend. I had to make a run over to the local Ryan's buffet style restaurant to check the room we'd reserved for the reception, and by the time we returned, the pizza had just arrived, as had the groom's nieces & nephews, and various & sundry other friends/family members. If not for the fact that they are usually about 3/4 full weekends in April & May with crazy Rennies, I woulda felt kinda sorry for the staff...  My weekend roomies and I had lots of giggles into the wee hours, and 2 of us fell asleep, sort of, by about midnightish. The 3rd stayed up until 4 a.m. doing some of her crafty things. Yeah, I didn't get nearly enough sleep that night.
Saturday morning, as Maid of Honor and organizer, I was running around like a headless chicken. 2 hairstyles (Groom & Best Man), 1 guest dressing assistance, getting myself dressed & all packed to go. Then came BITCH mode... too many people in the Bridal Suite, I wasn't particularly nice as I chased everyone out except the Bride, her mother, her daughter, and 2 of her mother's friends, but there was just too much in and out and it was starting to stress her out. When one of the guests who was camping at the faire site called about 20 minutes before we were supposed to leave to find out what room we were in, I just almost lost it, and when she came into the room, I was pretty short with her, which, she told me later she totally understood and wasn't offended by.  When the Bride was ready to leave, I had to go chase EVERYONE out of the parking lot, save for the Groom, Best Man, and the 3 friends who had agreed to go help get the guest table set up in the park.  Fortunately the ceremony went off without a hitch, well, except for the official hitching of the couple, and we had a great turnout.
By noon, we'd made it to faire & were getting settled at our usual spot, except for those who were marching in parade. I was also charged with getting everyone who hadn't been to faire before into the shire and to our home base, then over to where we watch parade every day.  Several of us left early to get to Ryan's and set up the room.  Yeah, that was FUN, lemme tell you... they reserved for us a different, albeit same sized room than we'd been told we would be in the night before. The manager on duty, who was not the one with whom we'd spoken either originally or the night before was rather snarky about how many people we were planning to have, to make sure we were going to use the room to maximum seating capacity.  Umm, sure dude, we are having a WEDDING RECEPTION, INCLUDING 2 CAKES, yeah, we'll just suspend those suckers in mid-air so we can use that table to seat 6 people! We didn't make it down to Waxahachie with the toasting glasses, the gold tablecloth, or the rose petals that were supposed to be used. Fortunately Karma, angels, or the diety of your choice ensured that we would have what we needed to make the whole thing work anyway... We had a large swatch of tartan (who doesn't love having access to an unsewn great kilt, right?) to use as the tablecloth, the blue "pearls" to line the edges of the Bride's cake were more than were necessary so they could be used in place of some of the rose petals (which wouldn't have shown up on the tartan anyway), and somehow the Groom's grandfather's tankard had made its way into the tote that went to the restaurant with us, and the Bride hadn't taken her silver goblet off when she loosened her corset and removed her hoopskirt, so everything was lovely.
On Sunday some of us went back to faire for the second day, while most of the folks at the motel with us headed home.

I was berserk stressed all of Saturday morning, until we actually got to the park, and then from the time we left to go set up Ryan's. I really expected to have set myself up for a flare, despite leaving very early on Sunday as well, but fortunately, I didn't have to do any driving, and my ride was ready to go when I was DONE. 

Things I learned this weekend:
  1. do NOT wear a busked corset with nothing underneath (yeah, I know, I should always have a chemise on under my corset, however my only good corset is NOT an undercorset, and I HAD to have one on, in order to avoid looking preggers) unless being chewed up and bruised by the pinching of the busk hooks is what you want
  2. do NOT wear a steel boned corset for 14 hours without at least loosening it up some, yeah sure, the support is fabulous, but the soreness the following day is totally not worth the look
  3. Maid of Honor OR Organizer is fine, both is a BITCH to handle
  4. Sometimes I HATE being the "strong one"
I have been lucky enough to manage not to have a flare despite the stress and lack of sleep. I'm sore, especially my back and my left hip/butt cheek (which has had an on/off again hitch in my git-along for a couple of years) is a little more tender than usual, and I'm sleepy as all hell, but having taken today as a Downtime Day, I think I've warded off the tingly & painful skin, the need to do nothing but sleep, and the general all over, non-responsive to ibuprofen pain.

Tomorrow I go back through my OTC supplements and try to get my nutrition back on track and my vitamins/minerals back to levels that they need to be.
Now it's off to bed.

Fibromyalgia & The Spoon Theory

I originally posted this over at Raevyn's Nest a couple of weeks ago. Since I'm a dork and haven't quite figured out how to export the post to here, it's in both places.

Wednesday, April 21, 2010

Fibromyalgia & The Spoon Theory

Several years ago, I read this, found it to be a great analogy for my Fibromyalgia, and then somehow lost the link and forgot to go back and find it again.

As much as I would like to print the entire text here, copyright restrictions prevent that. The author suffers from Lupus, which is also a disease whose patients often look perfectly healthy. She came up with this analogy when she was trying to explain her Lupus to a good friend, who did know the medical definition, but had trouble grasping the reality of living with such a disease.

Now, I've never bothered to count my spoons, but I learned long ago to listen very carefully to what my body is telling me, lest I use that last spoon before it is time to crawl into my bed for the night.

I'll start at what I believe is the beginning of my life with Fibromyalgia. In 1997, I had graduated from college with my shiny new Bachelor of Arts in History, and absolutely no job prospects within my field, as I'd already figured out that I am entirely too independent of a thinker to last in a classroom. I was working for a dairy transportation company, in their payroll/HR department. When my insurance kicked in, I made an appointment with a doctor that I knew and trusted, for a complete physical. I was tired all the time, had a constant headache, the back of my neck and between my shoulder blades hurt most of the time, my lower back felt like it was on fire by midafternoon, and my knees had been bothering me more than the usual arthritis that I'd had for several years. I was honest with him and told him that I was taking ibuprofen like candy (as Tylenol, aspirin, and naproxen don't do squat for me), just to keep the pain under control. I realize that I am truly one of the lucky ones. I had a doctor who not only acknowledged the disease, but recognized it without an endless stream of tests and failed attempts to treat other things. He looked at me and said "well, most of these seem unrelated, but when all found together, they are typically a relatively recently recognized disorder called Fibromyalgia" Initial treatment was either Amitrypteline or Nortrypteline, which I took in the evenings before bed, to help me sleep through the night, as his belief was that at least part of the problem was a lack of restful sleep. Those worked for awhile (one stopped working, so we went to the other). I also discovered a year or so later, that I am indeed VERY lucky, because there are a lot of people who are totally disabled by this disease. In the years since my diagnosis, I have been on a variety of therapies, which have included Ambien, Ambien CR, a couple of antidepressants I can't even remember the name of, something for Restless Leg Syndrome, and now I am on a generic form of Wellbutrin SR 150. The Wellbutrin is the only thing that has worked for me long term, and for now, I am able to combine it with OTC sleeping medications to get the rest I need. Ambien worked for less than 6 months, Ambien CR worked for less than a week (yeah, I fell right to sleep, then woke up in about 3 hours, exhausted, but with my brain racing so I couldn't sleep. The RLS drug also woke me up.

Fibro affects everybody differently, and there is no right or wrong therapy, it's a matter of what works best for the patient involved.

My biggest issues are:

Inability to sleep well and STAY asleep—my brain races ninety to nuthin for HOURS unless I have something mindless to settle it down. Currently OTC sleep meds, Claritin D (for my allergies), and a handheld solitaire game work pretty well. I also have a "sleepy" mix on my iPod of some of my favorite tunes and songs by musicians and friends, as well as just simply soothing songs & tunes

Brain fog – this is sometimes due to the lack of restful sleep, and I'm very aware that it is intensified if I don't get sufficient rest. I have to make more notes in order to remember things,

Getting sick more easily – As a child, I was rarely sick, and even after I was grown, until I started suffering from the Fibro, I was generally healthy. I do realize that poor sleep contributes to lowered immunity. I try to avoid people who are sick, and I use a combination of natural products to ward off the multiple respiratory infections that I used to get at least several times a year, and I've not had one turn from a congested nose into an infection in a year and a half

Getting fatigued more easily—Again it goes back to the sleeping disorder part of this, and this is a big part of the Spoon Theory. If I use up all of my spoons, I know I am going to be in trouble. I know just how far I can make my body go before it will turn on me and shut down for days.

Constant aches and pains – Fortunately, I have been managing the disease relatively well, which has greatly reduced the aches and pains I get, and my Fibro related pains have yet to be enough that I need prescription painkillers.

Gastro-intestinal issues – I have always been something of a picky eater, but in the last few years, I have also developed a bit of IBS or something. I've learned which restaurants I can have beef, and which ones I need to stick with chicken, a salad, or an appetizer if I want to finish my meal before I am hitting the ladies' room.

I have learned over the years what my biggest triggers to a flare up are:

Being overtired (DUH, right?). I try to get at least 6.5 hours of sleep as a minimum. Ideally, I like to get about 8-8.5. Unfortunately, in my current situation, that doesn't happen very often, because no matter how early I shut down my room, the rest of the house doesn't shut down until at least an hour later, sometimes more.

Stress. When I get stressed, my brain goes into hyperdrive and thinks weird, insane, or incredibly negative thoughts. It keeps me from concentrating on anything, and it causes me to go through spoons at an alarming rate. Sometimes it's extraordinary stress, like a death in the family. Other times it's what seems like normal, everyday stuff like traffic.

My management techniques:

Take my medication. It helps me to stay awake better during the day, so my brain will shut down and go to sleep at night. The side effect of it is that it's an anti-depressant, which does help keep my moods on an even keel

Downtime. For years I lived by myself, and now I live in a house with 3 other adults and a teenager. Sometimes there is just too much activity for me to deal with. It is never my intent to offend anyone, however I know that I NEED my downtime in order to function effectively and conserve spoons. There are evenings that I come home (after I've been gone for almost 13 hours), and just close myself up in my bedroom. My health MUST come before my tendency to try to be social and nice to everybody

Regular bedtime & bedtime routine, which lets my brain start shutting down before it's time to actually sleep.

Reduce stress, which I can sometimes do, other times I have to just deal with the stress. I've made some great strides in this area in the past couple of years. I've eliminated a couple of people from my world who do nothing but suck energy away from me and drag me down. I have been burned by various people in recent years, and to that end, have decided that it is all about ME. My health and wellbeing are my first priority. I am no longer putting myself second in order to put everybody else first. I realize that it sounds selfish, and for a long time that bothered me. Until I realized that by and large, that's what many other people in my world do, and it's really OK for me to do it too.

I have recently started a new job, which I'm pretty happy with. I like the people, I learn something new at least every week, and I no longer think "well damn, do I REALLY want to get up this morning". I earn a decent wage, and by and large, I don't feel a lot of stress or tension in the office. One of the best things about it is that I work 4 10 hour days, instead of 5 8's. I LOVE having a 3 day weekend every weekend, especially during Scarby season, because it does give me a day to get some stuff done, and get my bag packed for the weekend at faire. This week there are several things on my agenda, and I'm hoping that by getting to bed early tomorrow night, I will wind up with enough spoons to get the majority of it done on Friday.

At any rate, I just wanted to share a bit of information about what it's like to live in my body, with Fibromyalgia. I will get some links posted later, when I'm more awake and functional..By the way, I feared, earlier today that this was going to be a zero spoon day, but I managed to have a small one left by the time I crawled into my bed.

Thanks for reading ya'll