The morning comes and you open your eyes, the light filters softly in around the curtains. You slowly stretch out your body over an excess of pillows and your nerves fire. The pain strikes with an overwhelming force that makes you grimace. You wriggle to find a comfortable position as the pain assumes it’s daily drone. You realise there are no comfortable positions.
You lie there uncomfortable for a while, wishing to be still in the pain free realm of slumber. Eventually you drag your body out of bed, it aches as though last night you drank a bottle of tequila and then base jumped without a parachute. You feel the familiar growl of your stomach as it turns and complains about being woken. You hurry to the bathroom where you spend the next half an hour trying to un-knot your insides. Frustrated, you stumble into the kitchen to make a cup of coffee, you know it will only aggravate your stomach, but it’s too hard to deal with today if you don’t lift the brain fog.
Caffeine in hand, you settle onto your specially arranged cushions on the couch. It feels like settling into a prison cot. You groan with the effort it takes to go from standing to recumbent. Vaguely, your mind begins to plan your day. Anything that involves moving leaves you frowning with the anticipation of pain and frustration. You can’t remember the last time you were able to leave home alone. Dejectedly, you flick through the channels on TV and realise there is nothing on but infomercials disguised as interest stories. Your eyes scan the room, it’s filled by the same things that were there yesterday.
‘Watch a dvd, perhaps?’, you think, ‘Or straight online? How sore are my hands? (too sore for too much typing) Maybe I’ll read for a while…’
A couple of hours later you have watched all of the episodes that were on the current disc of whatever TV series you are watching on dvd. You feel unproductive and curse the ‘play all’ function. You realise you have gotten far too involved in the fictional world you were watching and try to shake it off, but keep the fantasy close at hand in case things get too hard later in the day and you need to resume your role as Buffy.
Your left foot suddenly burns with fire, like an erupting volcano. Your hopes of being productive are shattered as you elevate your foot and try and protect it from all the elements…even the air. In spite of your cries of protest, the foot swells and throbs, throwing in a few sharp, stabbing pains for good measure. You hope than no other limbs decide to follow its example. You feel disheartened, as soon as you tried to get going for the day, your pain thwarted you, once again. Your mood drops further as you realise your definition of ‘get going for the day’ has devolved to the point that you would have been proud if you could have only washed the dishes…
You reach for the laptop, hoping that some online interaction will distract you from the pain in your foot. You spend the next four hours ensconced in the virtual world, seemingly always having an important link to click but never remembering the page once you have clicked away again. There is a bright, shining light within that computer, however, and you exchange stories and witticisms with friends both known and unknown from all around the world. Some make you feel a little bit better, some slightly worse. Those pictures of an old school friend at the Eiffel Tower can bring you to tears when they remind you that you might never see Paris.
You finally shut down the laptop when your hands start screaming with little bolts of pain lightning. You wish you could have at least been doing something productive online, but you know your brain is feeling far too medicated to actually achieve anything. This reminds you that it’s time to take more tablets and you swallow these down with resigned acceptance. Until the pain is weakened you will have to keep taking them, to stop would be like throwing yourself into live fire.
It’s evening and so the pain flares. “I didn’t even do anything today!”, you yell at it, “What’s your freaking problem?”. The pain only responds with more pain. You long to sit up, to just straighten out your back, but as you try to change position your hip cries out and you sink back into the cushions.
You know you should go to bed, it’s late, it’s really late. You have been watching a 30 minute commercial for an abdominal machine for the last 30 minutes. You spend another half an hour thinking about getting up. You finally pull yourself up off the couch, wincing in pain. It feels like walking on broken ankles. You hobble about, taking as few steps as possible in your quest to get ready for bed. You take more tablets.
You arrange your pillows under your hips and legs just right and settle in to go to sleep. Everything hurts, you want to roll onto your side but know that would be too painful, it’s hard to drift off. Finally you slip back into the darkness that brings relief. You hope things will be different tomorrow, but you know that they won’t be. RSD will be still be there when you wake up, and the day after that, and the day after that, and the day after that…
You dream of running.
This is a piece I wrote to try and explain what it’s like to live with RSD. It’s a choose your own adventure piece, only you don’t get to choose your own adventure because when you live with RSD, you don’t get to choose much of anything at all!
I hope this can help give you an idea of how much of your life is stolen when you are forced to spend every day in excruciating pain. I’m not looking for your sympathy, simply your understanding.
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The Reflex Sympathetic Dystrophy Syndrome Association