I too am sick of the body.
I too am sick of being a body,
am sick of being sick about my body,
The moment I got the appointment for my next round of nerve block injections for my SUNA syndrome, I knew I wanted to write about it here. I’ve tried illness blogging before, and it didn’t quite work out for me since I was in such a difficult place mentally that I was mostly cannibalising my own pain to make it hurt more. That is not where I am now. Earlier this month an interview I did for work about living with long term conditions and the transformation I made through therapy was released, and having said out loud how far I have come and how much I have coped with and conquered was rather eye-opening. (The interview can be read here, for the curious, compiled by my lovely friend and colleague Tamsin. I’m honoured to have been asked, and proud of the result – also my niece picked it up in a doctor’s surgery, so I’m basically famous now.)
Having spoken in something of a public way about my body again (see: Disabled, Sexy and Broke), I felt more determined to talk about this openly and frankly, because I find it somewhat empowering to say: I’m fractured, but still whole, here is how I’m handling it (or not.) So I decided: here, the world can have my pain for today, blow-by-blow, as it happens. I have enough to share.
**
The morning sings with my nervousness – a night of coiled sleep so all my muscles ache and the nerves writhing around the outside of my stomach. This is usual for injection day, but of course, it can never be one thing, it has to be a hundred. My final module essay is due tomorrow, and despite trying to get it deferred, having steroids injected into the back of your head just isn’t severe enough for a final exam.
Listen, I get it. There have to be limits. This does not require a medical certificate, fair enough. But the thing about long term illness is that between treatments you can’t help but degrade over time. As I am, here, today, on the edge of my seat waiting for the treatment, things are basically as severe as they get. Last night I clutched my head and screamed for a solid ten minutes because they pain refused to subside, and after I felt all the breath leave my body in an intangible leak of energy, my body left panting and exhausted. It’s hard to write a competent essay – hell, it’s hard to read the content in order to write a competent essay when you are battling waves of searing pain without pattern, only malice.
The injections are hard. Worth it, but hard See, the anaesthetic lasts for a few hours, dulling the nerve to sensation. I can go for breakfast and handle upbeat conversation with my usual semi-sarcasm. But by the train ride home the numbness abates, and the steroid infects the misfiring nerve and I am often left twitching and teary-eyed whilst I adapt to the pain for the rest of the day. Oh, and the anaesthetic makes it feel like my neck is in a brace. It doesn’t hurt, it’s just, y’know, a bit strange.
So in the waiting room, where I am now, I can admit to being scared. It’s always worse when I’m already nervous. My heart skipping beats just to remind me my body is a mess. Last time I was so worked up I passed out for about five minutes and spent the next half an hour trying to come back to my body beyond the nausea and numbness battling my body. Then I needed the second injection.
The clinic is never on time. After fainting, and the care they took to get me stable I understand why, but it’s like a sugar rush to the anxiety. A green-tinged tank of tropical fish buzzes away in the corner, swishing with bright yellows and cool blues. There might be a metaphor in that but I am too frazzled to find it.
I’ve written more about my stomach than my head. It’s so much easier to write about the tangible, about the vomit, about the surgical scars, about the squish. The brain is harder to capture. Phantom pain, electric shock, the bruising feeling – it’s so much harder to articulate the severity. There’s nothing poetic about needles in the back of your skull.
**
The room is what you’d expect, clinical, slightly blue. I’ve never had it done in the same room – the NHS is the definition of freefall right now, so everyone is bustling for space. The nurse is very talkative, and she takes her time. I don’t want to talk about politics today (it’s the European Parliament election, which seems a bit like a fruitless endeavour); I don’t want to talk about Theresa May or Donald Trump.
The survey asks: in the last four weeks has the pain made you want to lie down? Made it difficult to focus on work? Been severe enough to disrupt your day to day activities?
I can’t help but wonder why the fuck anyone would want to have the procedure if the answer to any of those is no.
I lie face down on the gurney, my pacemaker pillowed by the understuffed pillow, my forehead pillowed by my hands. She finds the point on the back of your head that hurts to press down on and presses it hard – here is the bastard nerve, glutton for punishment. Breathe in as the needle enters and breathe out slowly as it is depressed. (Aside – there is a special surreality to hearing treatment entering your body, a squeaking, liquid sound that has the nails on chalkboard effect, but I am too tense to allow myself to shudder.) Honestly, the suspense is worse than the actual injection. It hurts the same way a blood test hurts, at least initially. Until, of course, the nurse begins to rub it in. Right on the tender spot, more inflamed than ever now that an inch of needle has penetrated it, and she massages deeply the worst of the hurt. My teeth are thoroughly gritted. I try to reply to her conversation, a casual chat about the bank holiday, a stark contrast to the pain blooming at the back of my skull.
She asks if I’m okay, I assure her I am – and maybe I’m just used to the subtle brutality of the treatment, but I really am fine once her fingers leave the nerve. The left side then, rinse and repeat. The tender point hurts more, and my face is starting to ache from its pillow on my forearms. I always was a bag of bones, no room for any give or softness.
It’s over quickly, after all the apprehension, and the stress and the queasiness, and I sit for a while, waiting for gravity to return. The pain is abated, for now, anaesthetic doing its job for once, and the next two hours are a dream just shy of blissful. My mother and I have brunch nearby, a treat for surviving the initial hurt, and I buy a bunch of face masks to pamper myself on Saturday once the essay is sent off and the injection pain has worn off. I have become an expert in preparing future pleasure against present pain – it applies to depression as much as chronic pain, and it’s a damn fine system.
Still, by the train ride home, like clockwork, the aching starts to set in.
**
It’s 7pm, nine hours since the treatment, and I’m handling it better than usual. My body feels somewhat depleted. Still, by now the pain is usually unbearable, and I’ve curled up pathetically like a wounded cat and gone to sleep. I know my body well enough to understand why – I have gone into hyper-competence. There’s not much propelling me forward now than misplaced anxiety, but I’m 1.2K into a 2000 word essay and climbing ever further towards the end. My brain is so fixated on this essay it does not have time to truly feel the pain yet, it simply acknowledges its existence and subtly aches. Something almost like a hunger pang, but not quite.
I will get there. I am getting there. The Oracle of me can see in two hours I will be bent over double with the icepack from the freezer quivering in my hands and tears pricking my eyes once I truly relax, but right now I am simply walking from the middle to the end.
**
The morning sings with my nervousness – a night of coiled sleep so all my muscles ache and the nerves writhing around the outside of my stomach. This is usual for injection day, but of course, it can never be one thing, it has to be a hundred. My final module essay is due tomorrow, and despite trying to get it deferred, having steroids injected into the back of your head just isn’t severe enough for a final exam.
Listen, I get it. There have to be limits. This does not require a medical certificate, fair enough. But the thing about long term illness is that between treatments you can’t help but degrade over time. As I am, here, today, on the edge of my seat waiting for the treatment, things are basically as severe as they get. Last night I clutched my head and screamed for a solid ten minutes because they pain refused to subside, and after I felt all the breath leave my body in an intangible leak of energy, my body left panting and exhausted. It’s hard to write a competent essay – hell, it’s hard to read the content in order to write a competent essay when you are battling waves of searing pain without pattern, only malice.
The injections are hard. Worth it, but hard See, the anaesthetic lasts for a few hours, dulling the nerve to sensation. I can go for breakfast and handle upbeat conversation with my usual semi-sarcasm. But by the train ride home the numbness abates, and the steroid infects the misfiring nerve and I am often left twitching and teary-eyed whilst I adapt to the pain for the rest of the day. Oh, and the anaesthetic makes it feel like my neck is in a brace. It doesn’t hurt, it’s just, y’know, a bit strange.
So in the waiting room, where I am now, I can admit to being scared. It’s always worse when I’m already nervous. My heart skipping beats just to remind me my body is a mess. Last time I was so worked up I passed out for about five minutes and spent the next half an hour trying to come back to my body beyond the nausea and numbness battling my body. Then I needed the second injection.
The clinic is never on time. After fainting, and the care they took to get me stable I understand why, but it’s like a sugar rush to the anxiety. A green-tinged tank of tropical fish buzzes away in the corner, swishing with bright yellows and cool blues. There might be a metaphor in that but I am too frazzled to find it.
I’ve written more about my stomach than my head. It’s so much easier to write about the tangible, about the vomit, about the surgical scars, about the squish. The brain is harder to capture. Phantom pain, electric shock, the bruising feeling – it’s so much harder to articulate the severity. There’s nothing poetic about needles in the back of your skull.
**
The room is what you’d expect, clinical, slightly blue. I’ve never had it done in the same room – the NHS is the definition of freefall right now, so everyone is bustling for space. The nurse is very talkative, and she takes her time. I don’t want to talk about politics today (it’s the European Parliament election, which seems a bit like a fruitless endeavour); I don’t want to talk about Theresa May or Donald Trump.
The survey asks: in the last four weeks has the pain made you want to lie down? Made it difficult to focus on work? Been severe enough to disrupt your day to day activities?
I can’t help but wonder why the fuck anyone would want to have the procedure if the answer to any of those is no.
I lie face down on the gurney, my pacemaker pillowed by the understuffed pillow, my forehead pillowed by my hands. She finds the point on the back of your head that hurts to press down on and presses it hard – here is the bastard nerve, glutton for punishment. Breathe in as the needle enters and breathe out slowly as it is depressed. (Aside – there is a special surreality to hearing treatment entering your body, a squeaking, liquid sound that has the nails on chalkboard effect, but I am too tense to allow myself to shudder.) Honestly, the suspense is worse than the actual injection. It hurts the same way a blood test hurts, at least initially. Until, of course, the nurse begins to rub it in. Right on the tender spot, more inflamed than ever now that an inch of needle has penetrated it, and she massages deeply the worst of the hurt. My teeth are thoroughly gritted. I try to reply to her conversation, a casual chat about the bank holiday, a stark contrast to the pain blooming at the back of my skull.
She asks if I’m okay, I assure her I am – and maybe I’m just used to the subtle brutality of the treatment, but I really am fine once her fingers leave the nerve. The left side then, rinse and repeat. The tender point hurts more, and my face is starting to ache from its pillow on my forearms. I always was a bag of bones, no room for any give or softness.
It’s over quickly, after all the apprehension, and the stress and the queasiness, and I sit for a while, waiting for gravity to return. The pain is abated, for now, anaesthetic doing its job for once, and the next two hours are a dream just shy of blissful. My mother and I have brunch nearby, a treat for surviving the initial hurt, and I buy a bunch of face masks to pamper myself on Saturday once the essay is sent off and the injection pain has worn off. I have become an expert in preparing future pleasure against present pain – it applies to depression as much as chronic pain, and it’s a damn fine system.
Still, by the train ride home, like clockwork, the aching starts to set in.
**
It’s 7pm, nine hours since the treatment, and I’m handling it better than usual. My body feels somewhat depleted. Still, by now the pain is usually unbearable, and I’ve curled up pathetically like a wounded cat and gone to sleep. I know my body well enough to understand why – I have gone into hyper-competence. There’s not much propelling me forward now than misplaced anxiety, but I’m 1.2K into a 2000 word essay and climbing ever further towards the end. My brain is so fixated on this essay it does not have time to truly feel the pain yet, it simply acknowledges its existence and subtly aches. Something almost like a hunger pang, but not quite.
I will get there. I am getting there. The Oracle of me can see in two hours I will be bent over double with the icepack from the freezer quivering in my hands and tears pricking my eyes once I truly relax, but right now I am simply walking from the middle to the end.
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