It’s starting to really get to me, this pain thing. I keep upping the gabapentin (slowly, of course, per the guidance…) and yet the pain still wants to say hi all too often. Codeine is becoming my friend, but the pain seems to circumvent that all too often too. I am not a fan of pain.
My body is trolling me. I used to be a fan of pain. That chapter I wrote for Identity, the Eroticon anthology about how my relationship to masochism was changing with my recovery from rape needs a further update. I’ll always be kinky but no, this pain is not that. And I would like for there to be no pain please. Even masochists cry out (or cry) when they stub their toe. Crying seems to be my default norm these days.
Because I haven’t recorded it yet here, this is the journey so far of my magical MyStery tour…
It started, or I’d thought it started, a couple of days before Christmas, with pins and needles in both my feet that just wouldn’t go away. The neurologist thinks that the extremely odd swelling of the feet and collapse with a fatigue I’m now becoming more familiar with, but had never felt anything like, not even in all the years of fighting off chronic fatigue in my PTSD hypo crashes, that I experienced the week before when visiting my friend in France, was actually the first manifestation of this bout. And of course, since they’re saying it’s relapsing remitting, they’re putting the odd numbness I had in my left arm & hand back in 2010 that the chiropractor said was a trapped nerve, down to being a previous batch. And according to the brain MRI I’ve had quite a few lesions in the past. I always did fall over a lot.
Anyhow, it started with the pins and needles. The doctors was open again after Christmas on 27th and I made an appointment for the next day. I thought the doctor would laugh me out of the office, but he ordered some blood tests and told me to come back if anything changed. By the next week, the pins and needles, and numbness, and strange tingling was going up my calves. The #freakyfeet hashtag I’d been using on Facebook and Twitter needed updating to #freakylegs (but #freakyfeet stuck). I started finding it difficult to go to the toilet. I went back to the doctor, cried, he asked me what I thought it might be, I said MS, he said no because it doesn’t show up bilaterally. The blood tests weren’t showing anything except a vitamin D deficiency. He wrote me a prescription for 6 months supply (at the dose I was advised to take, they lasted two months).
But the spreading of the sensations, and I think the bladder issues, meant he pulled out all the stops and got me an appointment at the rapid access clinic. By this time I’d been to two different osteopaths, and the emergency surgery the other side of town. I was worried (read: panicked & petrified). When I walked, it felt like I was walking on loofahs. When I bent my knees it felt like they were squelching through treacle. My limbs felt heavy and ached. And let’s just say, my bladder was being extremely shy.
Our NHS was amazing. At the rapid access clinic, the neurologist diagnosed me with transverse myelitis. A million to one shot. Lucky. (Note: sarcasm). He ordered MRIs. There was supposed to be a long waiting list, I was seen within ten days. The MRI itself was full of adventure – the first hospital (the Churchill) had a broken machine, and since I needed both spine and head they couldn’t do it. So, with whatever it’s called still in my arm where they’d put the saline in readiness, I had to get a taxi across to the other hospital (the John Radcliffe) and have my MRI done there. The way the staff went out of their way to ensure I could get seen, at both hospitals, was amazing. Our NHS is amazing. Then, for the actual MRI, I of course felt nauseous just as soon as they’d injected me inbetween the two MRIs. It happens a lot, apparently. So, wait a few moments to check before putting us back in there!! I thought I was going to retch lying down, with my head in the thing (technical term) unable to move…
Anyway, I got the call, and it was MS. And the neurologist came in on his Sunday to take me through the results. Six weeks from the pins and needles to the diagnosis. Our NHS is amazing.
I know that I’m lucky, that for most people it takes years and years and years. I think the other side of that is that if you’ve had a long time knowing you’re unwell and waiting for a diagnosis to make it all make sense, you’ve had some chance to get used to the idea that things are really quite wrong. Certainly, that’s how it felt for me when I finally had the official PTSD diagnosis, back when I had it. I’m still getting used to the idea now, that things are really quite wrong.
I’m reminded all the time of course.
This is how my magical MyStery tour has been manifesting, so far:
- pins and needles
- the sensation of ants and spiders crawling over my skin
- feet so cold they feel like they’re burning
- walking on loofahs
- squelching knees
- electric shock zaps of differing strengths
- pin pricks
- acute pain in my toes
- acute pain in my legs
- heavy legs
- a feeling of a muscle spasm under my rib cage
- my breasts feeling like they’ve been punched
- tingling in my face
- tingling on my chest
- stiffness in my left arm
- tingling in my left hand (I am left-handed, this is so not good)
- intense fatigue
- brain fog
- memory loss
- feeling like there is bruising where there isn’t
- eyes going blurry
- shy bladder
- insistent bladder
- MS hug around the middle
- difficulty swallowing
- and more, I’ll have forgotten some…
The way I characterise it, it’s like there’s a gang of kids in my body having a team talk and then running riot, sometimes together, sometimes individually. I picture it like that boy the Keifer Sutherland character brought back from the other side in Flatliners, just a gang of them. They’re just misunderstood kids, they’re having fun. Just in my body. And that’s not OK.
It’s like Chinese water torture. Drip. Drip. Drip. Sometimes it’s a whole waterfall of cold ice. Sometimes it’s a waterboarding. But even the drip, drip, drip gets to be too much.
It’s supposed to remit. It might not. That’s hard to cope with. The not knowing.
My symptoms are very mild right now. And that’s hard to handle in itself too. Because if they’re mild now, that means they can get a lot worse. I’m on 1200mg of gabapentin/day. I could be on 3600mg before anyone starts to question what to do next with the pain management. I started on 300mg/day. I’ve had to increase quite quickly really. Plus the codeine. It was sometimes one 30mg tablet to help with the pain at night. Now, it’s three times a day. The bladder stuff seems to be under control on the oxybutynin. Which is a relief because I made the mistake of looking up self-catheterisation online… And, note to self, don’t flick through the pages of MS Life at the hospital, the first page is adverts for catheters…
I don’t know how to handle the idea that this is going to get worse, what it is now feels too much already. It’s a degenerative illness with no known cure, this could be as good as it gets. If it remits, at some point it’ll come back. I’ll have no warning of when, or where, or how, or how much.
With PTSD I felt there would be a way out. I knew there would be, somehow. With this, I’m not so sure. I mean, I know some people swear by changing the diet. Maybe one day I’ll do that. Today, I’m still processing, I’m reeling, I’m trying not to let go. And so I’m coping the way I know works best for me when I’m in shock, and that’s with pasta and cheese. And codeine. It’s my birthday tomorrow. Maybe I’ll start adulting and apply all the things I learned during the rape recovery to this. Now I’m ill again though, I recognise why so many in my community don’t apply the things. Self-comfort is the only control we have. #solidarity (I still believe #itgetsbetter though. It will get better, when I get my head around the fact this is going to hurt).
Thank you for reading xx
(Another messed up mixed up thing. One day I’ll be able to write less mixed up messed up things again).