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. http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf
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:
  1. 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
  2. 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,
  3. 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
  4. 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.
  5. 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.
  6. 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:
  1. 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.
  2. 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:
  1. 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
  2. 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
  3. Regular bedtime & bedtime routine, which lets my brain start shutting down before it's time to actually sleep.
  4. 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

1 comment:

Lisa Hefron said...

Thank you for this post. I am one of those people who are disabled by the pain of Fibro and it is so hard to explain to people who say "but you don't look sick".