Spoon Theory
I tweeted the other day saying I’d run out of spoons, this probably confused a few people. So this is by way of explanation, and also to explain a few things about me to those that don’t know me very well.
The spoons thing comes from here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
The “spoon theory” being a way of explaining chronic illness to people who are perfectly healthy, and don’t understand. The idea being that you start each day with a limited supply of spoons, and each action during the day uses a spoon. What happens when all these spoons are gone depends largely on your particular illness, but generally involves being physically incapable of doing anything else other than perhaps collapsing into a bed or other suitable passing-out place.
I am unfortunate enough to suffer from multiple chronic illnesses: * chronic migraine * chronic daily headaches (cdh) * ankylosing spondylitis * fibromyalgia
Those last two are probable diagnoses, because although I have all the symptoms, AS is only diagnosable by X-ray five to ten years after onset, and fibromyalgia is a syndrome, not a disease, and has no diagnostic test.
So, let’s explain what each one is. Chronic daily headaches is basically what it sounds like, headaches all day, every day. My CDH is technically a low-level status migraine. I have mostly got used to these, and although the pain is still there, I can generally endure them without too many problems.
The chronic migraines are a different matter though, excruciating pain and disablement is generally the result of these. Unmedicated, I’ll end up in bed for anything between six hours or so, to a few days. They have occasionally lasted a week or longer (which requires medical attention, as the increased intracranial pressure can cause a stroke, in my case this is a course of steroids and various other “rescue” medications). When medicated the results vary, occasionally the medication will have no effect at all, and the results will be the same as above. When it works, it usually nullifies the majority of the pain, and essentially leaves you with an intense hangover. So even medicated, I’m unable to concentrate on anything.
So, that’s my head, onto ankylosing spondylitis. AS is essentially a form of arthritis (which, funnily enough, I also have). It primarily affects the spine, although in later stages it can move on to other parts of the body. It causes bony growths to form on the vertebrae of the spine, which rub together, and eventually fuse to form a bridge, preventing the individual vertebrae from moving. Eventually it will cause the entire spine to fuse into a solid rod, preventing you from bending or twisting, and causing intense pain.
My AS is currently limited to my lower spine, around the lumbar region. It seems to come and go in periods of a few months. Sometimes I’ll be able to move freely with little or no pain. Other times I have constant, intense pain in my lower back. It prevents me from doing things, not because I can’t physically move - my bones have not fused yet - but simply because the pain is so intense I can’t think of anything else, and is unaffected by any painkiller I’ve come across so far (and I’ve tried some pretty powerful ones).
Next is fibromyalgia. A muscle and connective tissue disorder, who’s symptoms include widespread pain and sensitivity to pressure, with no apparent cause, debilitating fatigue, sleep disturbance, joint stiffness, numbness, tingling, and cognitive disfunction. Fibromyalgia is a bit of a problem, because quite a few doctors refuse to believe it exists , and think it’s all in your head. It’s not a disease, it’s a collection of apparently connected symptoms, which occur together too often for it to be coincidence, and yet have no apparent cause.
In my case, it causes a condition known as fibrofog (the cognitive dysfunction) which includes diminished attention span, impaired concentration, and long and short term memory problems. Intense tiredness (quite often while I’m driving - I have to keep glucose tablets in the car, and stop and rest frequently), and yet I have trouble sleeping. I frequently get numbness and tingling, usually in my left hand/arm, and of course the widespread pain with no apparent cause. I often feel like I’ve been hit, and yet nothing has hit me, there’s no bruising or swelling. The area affected is often quite small, for example, in the car the other day, I thought I had something small and hard behind my back, that I’d sat on by accident - there was nothing there. I had the pain, but nothing was causing it.
Having so many things wrong with you causes problems. Quite apart from the phrase “sick and tired of being sick and tired”, I’m often faced with a dilemma when people ask me how I am. What do I say? Do I say fine, and give them the impression that there’s often nothing wrong with me and I’m okay, do I mention one of the things that’s wrong - the one that’s bothering me most at the time? Or do I list them all and risk sounding like a hypochondriac? At the moment, I’ve settled for a mix of the first and the last, I usually say fine, but mention when something is particularly bad and is clearly hurting me, but that’s so often I still feel like a hypochondriac.
I have the same problem with doctors, when I go, I usually only mention the one or two things that are bothering me most at the time. If I mentioned everything, I’d be there all day. And even with my regular GP, who knows what’s wrong with me, and my family history (most of my problems are genetic, going back at least two generations), I still hesitate to list everything thats hurting, because I feel like I’m complaining and whining. I feel like if I list everything, every time, it’ll become commonplace, and he’ll cease to care.
Getting something for the pain is a problem too, I once made the mistake of going to a different GP instead of waiting for my own, and he looked at me like a druggie when I asked for stronger painkillers. The pain killers I’ve got are low-level opiates, and still, they don’t help. And I haven’t mentioned it again since, even with my own GP, for fear of getting that look.
There are people much worse off than me. My boss is reasonably understanding of my condition as I was told I had AS during work hours, and so she and my other colleagues know how that news affected me, and what the condition is. She’s also quite understanding of my migraines, and knows I’m seeing a specialist for them. Some people are not so lucky. All four of the conditions listed above are incurable. And yet some people are under the impression that it’s either all in your head, or that you should just go back to the doctor and have it fixed.
So heres a message for those managers, colleagues, or so called “friends”: Our incurable, chronic conditions are more real than your imaginary medical degree. They are not in our heads, they hurt, and we have to deal with them everyday. They are invariably worsened, especially in the case of headaches and migraines, by stress. This stress is bad enough already without you making it worse my making unreasonable demands, and expecting incurable conditions to suddenly resolve because you said they should. Do you think we don’t want them to? Please stop being irrational, and stop providing ridiculous miracle cures that we’ve either already tried, or are so absurd as to be amusing.
Go and read that link to the spoon theory. She explains it better than I do, and it might help you realise what we deal with every day.
