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…and then there are the days like this.

Most days, I can get up and function pretty well around 11am.

This is, of course, after not being able to fall asleep until well after 2am.

Last night, I wasn’t able to fall asleep until after 3am.

I woke up around 9am because the postman knocked on the door (Avon calling…), and got up to get the packages(!!) and try on some of the things I bought.

I took my blood pressure medicine because I figured I was up for the day.

Shortly after, I got dizzy and had to lay down.

I woke up around noon.

I tried to drink and eat some more to try to get my body to wake up, but my stomach wasn’t really havin’ it.

I got dizzy and laid down again.

I just woke up about 20 minutes ago.

I feel like my head is pumped full of air, my eyeballs feel dry and swollen, my muscles all feel weird and sore, and my feet are numb.

This is a “middle of the road” day.

On a “bad” day, I wouldn’t have gotten up to answer the door.

So let me ask you a question:  Do you think my disease is fake?

I don’t think I could ever be more pissed off at hypochondriacs and drug-seekers…but I am.  Because of them, my doctor gives me Aleve for pain that stopped responding to OTC meds two years ago…that’s why I went to the doctor in the first place.

Because of them, I’ve been treated like a bag of complaints with limbs.

Because I’m educated about my disorder, doctors think I’m researching to see what kind of drugs I can get.

Because I’m female, it must be all in my head.

Because I’m uninsured, I must be trying to take advantage of “the system.”  “Taking advantage” costs me at least $150 per visit, kthx.

Because I’m fat, I must be lazy…I’m “just not trying” to be healthy.

Man, fuck all that noise.

I keep holding myself back from talking about the bare bones of fibromyalgia on this blog, because I know there are a LOT of people who think it’s a scam.

Whatever it is I have, fibro fits the bill better than anything else.  I’m actually in pain 24/7 – can you imagine what that’s like?  To do nothing out of the ordinary, and feel like you’ve been pulled through the wringer?  It sucks so hard, y’all.

My quality of life (and thus, the quality of life for my entire household, because I can’t keep up with the messes that two people, two cats, a cockatiel, and a rat create) has fallen dramatically since I got sick.  I used to be able to go somewhere at the drop of a hat.  Now I have to assess how I feel, what I have to do the next day, and whether one action will affect the other.  Cleaning my rat’s cage can give me long-lasting forearm pain.  Sometimes it doesn’t affect me at all.

It’s called the Spoon Theory, and it’s so true that it feels silly.  I think of it more like measuring spoons/cups.  The first tasks of the day are the tablespoons…but if I do them to quickly, or try to do too many in a row without stopping to rest, I forfeit those and move down to the teaspoons.  Smaller bits of energy to work with, see?  After that, I move down to 1/4 tsp.  Sometimes, as today, this depletion happens with one action.  Other days, I have spoons left over.

If I use up all of my “spoons” before the end of the day, I have to “borrow” tomorrow’s spoons to be able to do anything else.  The reason that metaphor is there is to account for the fact that running out of energy and overdoing it can make you completely worthless the next day.

When you do this too often, as I have been, you have “flares” – then, your spoons are lying out of reach, and you’re absolutely stuck in bed.  On these days, it helps to have an understanding husband/wife/friend around to help you do things like walk to the toilet and even bathe.

I’ve been stuck in a somewhat-constant flare for over a month.

So…you tell me:  Is it real?  Or am I faking?

 

5 comments to …and then there are the days like this.

  • This is what worries me about fibro:

    It’s not that I think it’s fake. It’s that I think it might be a catch-all diagnosis used by doctors who don’t want to dig deeply enough to find the underlying condition(s).

    When I was a preteen, my mother was diagnosed with Chronic Fatigue Syndrome, basically the fibromyalgia of the late ’80s/early ’90s. Because of this diagnosis, doctors quit looking further and she kept getting worse and was never offered effective treatment. Eventually–after more than a decade of BS–she was diagnosed with Rheumatoid Arthritis. She is now on heavy drugs but has a much better quality of life.

    It’s really not an uncommon thing. Take the classic baby illness: colic. All that diagnosis means is “we don’t know why your baby’s crying and we’re not going to try to find out.” For some colicky babies the problem is acid reflux. For others it’s gluten sensitivity (especially with breastfed babies, who can be affected by their mother’s milk), and for others there are other explanations…but doctors are more than happy to tell a stressed parent “It’s colic; they’ll grow out of it” and offer no treatment.

    I worry you may be getting put through something similar. (This is my worry for the few women I know who’ve been told they have fibro–and more than one has been found to have something completely different later on, like lupus). Certainly the weight issue reminds me strongly of the PCOS I am dealing with, and the pain/stamina issues sound a lot like the RA my mother has.

    I’m not saying I think that fibro is fake, or that I think you’re faking it. I’m saying I hope you continue to be a strong advocate for yourself and your health and don’t let doctors shunt you aside with a pat explanation.

  • I am the Gold Standard for not accepting the easy answer. You are smart enough to be your own advocate, but I do worry that the system can beat you down to the point where you just don’t feel like doing it anymore.

    In my journey through the medical system I went through a ton of doctors (which labeled me as “doctor shopping”) and felt free to disregard medical advice (non-compliant patient). It got me to remain not-dead, but now I am sort of stuck in the same boat you are: I have intolerable symptoms that no doctor is willing to treat. (see above)Sometimes I wonder if surviving was the best outcome. It makes me want to just go to med school and fucking do it myself.

    I, too, think that most “fibro” cases are catch-all diagnosis for underlying, incorrectly diagnosed conditions (Mycoplasma is a likely suspect), which helps you not at all, I know. Do know that there are people out in the world who are willing to help you when you need it, even if it is taking you to a movie, bringing pizza when you don’t feel like getting out of bed.

  • After some of the bullshit my daughter’s been through over the last year with doctors, and some other people I know of, I’m about ready to tell most of the medical profession “We’re going to start a list: “Doctors Who Don’t Listen And Don’t Care”, and pass it around the whole damn country. And a prime note on the list will be ‘calls patients uncooperative when they demand actual answers’.”

    And a lot of it does seem to be “I want to make a fast diagnosis and get you out of the office. So stop asking questions I can’t answer.”

  • I don’t think it is fake and I mirror what others have said here. I have a few “issues”.. visible issues and some not-so-visible issues, but the doctors have not been helpful in most of them.

    Unfortunately, I don’t have any real answers for you as I am trying to find my own. The frustration is incredible. So what do you do when you find a doctor who knows you have a problem because they can see it, but doesn’t know what is causing it? Everything they have done is inconclusive.

  • You are in no way faking. Chronic pain conditions are hard to diagnose, and getting adequate treatment and pain management is even harder sometimes. My mother was diagnosed with Lupus in 1979 after over two years of going from doctor to doctor and being told that it was all in her head. Luckily when it was time for my siblings and me to play the Auto-Immune Roulette Wheel, we had doctors who actively tried to find a correct diagnosis and treatment regimen.

    Thank you for verbalizing how I feel sometimes with my own arthritis, that some days you feel like you could climb mountains, followed by days where you barely have enough energy to get through the days, followed by days where getting out of bed is difficult.