All of the Terms at St Thomas’s

Around eight months ago I attended a unique course that I came to call St Thomas’s School of Pain. I remember distinctly deciding beforehand that I’d write about it, and multiple posts at that. Through writing this blog and sharing my experiences, I’ve learned that there are people in my life who have gone and are daily going through similar struggles, including some with chronic pain. I’ve received touching messages and had conversations both moving and inspiring off the back of things I’ve written, and have even been told that others have found my writing comforting and helpful. This is so far beyond any expectations I had when I first set fingertips to keyboard on the topics of guns and cake, believe you me. About to embark on a four week residential course to help me cope with chronic pain, I felt I would try to share anything I could; the off-chance that some small snippet would help someone for even one hour of their entire life seemed to make it more worthy of writing about than most of my subject matter. It still does. Thus I resolutely decided I would share my experiences. Given we had a selection of teachers who ran classes according to a weekly timetable, and at various times even used the white boards, with breaks morning and afternoon, and lunch dished up to us by a lovely, warm lady in an apron as we queued in a chatty line with our trays, my ‘school’ analogy felt pretty solid overall. I had even decided on the somewhat twee titles I would use for the posts I had yet to write, an homage to Enid Blyton: ‘First Term/Second Form/In the Third/Last Term at St Thomas’s’.

Eight months later, on the day my final follow up session, and I’ve still not written a word.

Those four weeks living on the South Bank, just over the river from Big Ben, barking at you every fifteen minutes (which I actually loved, incidentally), changed my life irrevocably – and fortunately for the better. As a direct result of St T’s SoP, I moved house, setting those wheels in motion before the fourth ‘term’ had even finished. With my teachers’ support, I’ve reduced my reliance on the NHS to almost nil – the single appointment I’ve had with my GP since October would have seemed unthinkable to the Me of the last couple of years, when I’ve averaged at absolute minimum one appointment a month, an MRI a year, and countless other tests, the two involving tuning forks and electric currents making my hands move among the most bizarre. And now? I haven’t yet been to see a GP in 2016. 
Not unconnected to this, almost (but not quite) the most significant change to my life, as I know those close to me will agree, is that with my teachers’ guiding words ringing in my ears (and letter for the GP in hand), I’ve gradually taken myself off absolutely all my medication. It took over four months, but these last eighteen weeks (and damn right I’m counting!) I have taken absolutely zero prescription medicines. This is the first time in years I’ve not been popping pills daily; three years ago today I was a walking maraca, popping 37 tablets a day including doses I had to take at work. Right now I feel so liberated to have shed my maraca status that I take any multi vitamins and supplements on a distinctly sporadic basis, simply so I am taking absolutely nothing ‘daily’. No antidepressants, no anticonvulsants, no pain meds of any kind. Nada. Zilch. Zero. 

As the dose of meds reduced, the fog in my head started to lift. This has in turn had all manner of catalytic effects. That fog had crept in so stealthily, with such patience and persistence over months and years, that I didn’t even know it was there. The change was so subtle and occurred so gradually that I hadn’t noticed. Yet a week into my new ‘no-meds’ state, and without any knowledge of the changes I’d been making, my old boss commented that my focus had visibly improved, my drive had picked up, my clarity of communication sharpened, and overall I was more on form than he’d ever known me. I smiled and laughed and said thank you. Inside I wept. I was overwhelmed with despair, self-pity and grief that I had been so masked for so long, and with relief, and gratitude and sheer pleasure that ‘I’ was back. The cherry on top; I was unbelievably moved that he’d noticed. I don’t think he had any idea that his passing comments that lunchtime will stay with me forever. 

Forgive the cloying metaphor but in this newly rediscovered, fog-free, crystal clear blue sky, I have found and stretched my wings, and started to fly. Since I ‘graduated’ from St T’s, I was approached about a new job, went for it, and got it. I now find myself happily succeeding (so far) in the most senior role I’ve held to date, in a company I’ve long-admired, with a not inconsequential pay rise, actively looking forward to my upcoming three-month review. I can’t say for sure it wouldn’t all have happened had I not attended the School of Pain, but I sure as hell know where I’d have put my money. 

Finally and by far of most significance to me, I have reclaimed my sense of identity.* Not only has the lifting of the brain fog enabled me to be Me in the truest sense (mostly for better but at a few times for worse) right to the core, I also no longer think of myself as someone with a problem, an illness, or an affliction. This could not be demonstrated more clearly to me than by the fact that no one at my current job** knows I suffer from either HNPP or chronic pain. One of the sales team, currently suffering with a wrist problem, knows I had issues with my wrists that caused me to wear splints on them day and night for a few months, a couple of years ago, but he doesn’t know why. And that’s genuinely the extent of it. I have no need to share it; it’s not who I am when it comes to introductions or getting to know me, and it is simply not relevant to my current job or my ability to do it and do it well. That doesn’t mean there won’t ever be a period where I may need to share the information with them or a future employer – and it won’t be a problem or a failure if or when I get to that point. But the difference in me through even just the interviewing process for this role vs. my previous one was night and day. Interviewing for my last role – during my redundancy if you’re a longer term reader – I felt wracked with guilt that I wasn’t declaring upfront that I had Something Wrong With Me. When I did come to tell them, post-confirmation and commencement of employment, I felt ashamed, as though I’d let them offer me the job and accept my acceptance on the basis of some deceit. This time round, it simply didn’t come up. C’est tout. I’m damned good at my job. If I hurt a bit while I’m being damned good at my job, what does it matter to them?

I didn’t realise until St T’s how much I’d come to think of myself as less of a person as my struggle had worsened, and frankly I’m ashamed of myself for it. I would never think of a friend or colleague who struggled with a similar affliction of being worth any less because of it, so why the hell did I treat myself any differently? The answer I sadly feel lies in us as a society as much as in me as an individual. While very few people would consciously say someone with a medical affliction is worth less/is more hassle, etc. (or so I sincerely hope), there were unconscious, unspoken messages that reinforced my negative self-perception. I remember an employer running their hands through their hair in exasperation when trying to talk about struggling with my workload. Another colleague rolling their eyes in the background as I clutched my head in pain trying not to cry out. An occupational health professional saying “the company probably won’t like that” about things I could do absolutely nothing about, and “you should be very grateful” as though a) I were demanding preferential treatment rather than asking for a small amount of support to enable me to get through a working week, and b) that I weren’t already inordinately thankful I worked for a company abiding by the spirit of the law as well as the letter. I remember someone stepping directly over my twitching body as I screamed silently in pain into the carpet of our office, mascara streaming down my face, struggling to breathe – incidentally a scenario already much more humiliating than those dreams where you appear naked in a crowd, even without someone stepping over you like an inconvenient log. In my case there was also the even less subtle message from Mr #6 and his ‘I don’t want to date you in case we end up together, I don’t want my kids inheriting what you’ve got’***. For the record I stand by my previous post on that: he can fuck right off. 

Personally I’ve found taking fewer tablets and attending fewer appointments to have had a big impact here. It’s easier than I thought it would be to let much of the pain tick along in the background, like a ticking clock on a mantlepiece. Without the pills, I don’t have a daily (or thrice-daily) reminder of my condition. Going to the GP no longer interrupts my life on a monthly basis. I’ve found it easier to focus on the good stuff without these reminders of the struggles. But I wish I could go back to Old Me and tell her to focus on the pub lunch planned for after an appointment as much as possible, or the pleasant taste of the coffee with which I’m taking my pills, more than the appointment or tablets themselves. Focus on the good stuff, and let the rest become background noise as much as possible. This is also something I’m determined to hold on to, as it’s highly unlikely I’ll stay off the meds for good. Still, never say never. 

I realise that even in writing this post, I haven’t shared an iota of what we actually did during the four weeks, and I may be guilty of misleading you, as I’m afraid I’m not going to. It was intensely challenging, personal, emotional and at times made me feel incredibly, uncomfortably vulnerable. I’ve no desire to repeat that experience here for all the Internet to read. But if you know me and want to know more about the course, please feel free to get in touch and I’ll happily tell you much, much more on a one-to-one basis. If you struggle with chronic pain in the UK and feel that you have run out of options within the NHS, I couldn’t recommend strongly enough that you speak to your specialist about the INPUT Pain Management course (as they’re unlikely to know what St Thomas’s School of Pain is) as an option. It may not be right for you, and even if you complete it, for all I know may not work for you, but it has changed my life and I will never stop being grateful to the team there. Their work has a positive impact on me every single day of my life, and has had since I entered their care. It isn’t possible for me to thank them enough. 
If you don’t suffer from chronic pain (or if you do and are bored of it infiltrating every aspect of your life), never fear: normal service here should resume in the not too distant future, starting with more tales of cringeworthy dates… Let the Tinder Tales recommence! 


*As an ex-philosophy student, I feel I should state that I’m absolutely ignoring the ponderings of David Hume et al. on whether such a thing as identity even exists. The man also wrote on mitigated scepticism; if an epistemological sceptic can accept his own refusal to put his hand in an Alsatian or Rottweiler or whatevertypeofdogitwas’s mouth, I’m sure Hume would forgive my commentary on the change in what I perceive as my sense of identity, whether or not it exists. Though even if he wouldn’t, I don’t think I honestly care that much. 
** I love the fact that I blur lines between colleague and friend; if you’re reading this and work with me, that’s fine and this is all stuff I’m happy to chat about it; but please know & respect that it’s not something I particularly want to draw attention to at work, so maybe wait until we’re in the pub rather than the office. Offering to buy a round never hurts either. 

*** for the record I’ve got: brains, wit, practical skills, musical talent, confidence, a good eye for a target, reasonable physical strength, a good palate, sex appeal, good looks and a so-far decent metabolism… And I’d keep that lot over a second PMP-22 gene any day of the week. 

The Mean Reds

Hello, and welcome back! I said the Tinder Tales would continue, and I did not lie…

Tinder Tales #4

With number four, the awkward moment actually came on our second date. The first date went well; we chatted about ourselves, had a couple of drinks, and there was even a bit of chemistry. He walked me back to my car and – for the first time ever on a first date – we kissed. It was quite a good kiss, and I headed home with a spring in my step.

In fact, Mr #4 threw a spanner in the works that I had never even contemplated. We met for our second date at a restaurant local to me, a chain I believe, called Cleaver. He arrived a little flustered, but kissed me as he sat down – hello butterflies. But from there things got a bit awkward. There was chemistry, oh yes, but conversation was reluctant to flow. I turned to that old fail safe, the menu, and asked if there was anything he didn’t eat. I was contemplating various sharing platters – chicken wings, chilli nachos and the like – or a proper, hefty steak. Decisions, decisions. I knew he had a sweet tooth so was confident that a warm chocolate brownie would be appearing in front of me before we left the restaurant. He paused, menu in hand, and then uttered words I never expected to pass the lips of the 6ft something blonde ice hockey player next to me.

“I’m a vegetarian.”

Such simple words. Such a small thing – no meat. I have friends who are veggie, who eat kosher, and I can go for days inadvertently meat-free, simply because I like vegetarian food. The problem is, I also love meat. Suddenly a potential future together flashed before my eyes; nut roasts at Christmas, steak-free 14th March, no hearty beef stews in winter, or Moroccan pulled lamb shoulder with friends, slow-cooked pork sizzling on a BBQ… I’m salivating just thinking about it. Add in that that I have both shot and manually dispatched game birds, and I’m possibly not his type.

He went to Florida for a while. He may even have got back by now – I know he was due to be away for a few weeks – and while a part of me would like to see him again, I know I care too much about food and cooking. It’s not about what he does or doesn’t eat, nor is it about the reasoning behind it. It is about the opportunities and experiences it would close off to us were we a couple. I want to be with someone who actively enjoys food and cooking, and will be adventurous in what they try, both to eat and to prepare. Vegetarianism had never entered my mind as a possibility.

Sigh. Maybe I’m just too fussy.

 

Tinder Tales #5

First date easily 9/10, absolutely swept off my feet. I’d had some bad news the night before, and wasn’t fully feeling in the mood, but decided to go along anyway. We met by the flower stall outside Liberty’s, and he explained he’d booked a table at a bar nearby – number eight somethingorother road. We found the road. I saw a building with a number 8 on it. Eat. The sandwich chain. I looked next door. Agent Provocateur. Wasn’t sure either of these were really suitable first date material, but I swallowed my bad mood and went with it. What I’d failed to notice was an unmarked doorway between the two. With some irritation, trepidation and hyperbolic visions of underground muggings, gang rape, and murder, I followed him down the dark stairway. Far from the perilous site of a fatal attack, I was presented with a beautiful bar full of nooks and crannies in which one could curl up and sup on nought but exquisite cocktails and mouth-watering desserts. We whiled away hour upon hour – and cocktail upon cocktail – with conversation ranging from school (we went to secondary school fairly close to each other) to Plato (he was reading The Republic, or something like that). We shared a couple of desserts and sipped on cocktails containing liqueurs I’d never heard of, amontillado sherry, peat, and all sorts of other surprising things that tasted incredible. He offered me the chance to play a ‘Get Out Of Jail Free’ card and leave, and I declined. At that, he kissed me, mid-date. Chemistry? Yes, so very yes. We carried on, dotting our constant conversation with kisses here and there, for hours more. Rather than nearly missing my train á la numéro deux, I actually missed it this time[i], and he hosted me for the night – accepting that I wouldn’t sleep with him on the first date, and not once trying to twist my arm. The second date was less than a week later and involved homemade chilli (cue text to a friend: “He eats meat!”) and a bottle of red with philosophical debates on the sofa. Third date lasted over 36 hours.

Over the next few weeks, we danced, we brunched, we drank wine, debated politics and philosophy, he tried – adorably – to make me breakfast and I subsequently taught him how to poach an egg, we dunked giant Bourbon biscuits into mugs of Earl Grey over a game of Scrabble, we watched Audrey Hepburn eat her breakfast at Tiffany’s while we ate brunch. He seemed funny, respectful, ambitious, hard-working, good fun. Possibly an over-thinker, but let’s face it I am the blackest of pots where that kettle is concerned.

But. But. There’s always a ‘but’. The last of this series of wonderful dates, I had a particularly painful arm on a day we had brunch at Seven Dials. The next evening, he called me to explain that he’d been thinking about the future and wasn’t sure he wanted any potential children we may one day have to inherit my genetic condition. We did talk over it all, but really truly, what it all boils down to is one simple answer: “Fuck You!”

***

I’ve been on one other date since that fiasco, and I hope to see him again so I shan’t jinx it by giving you details here. But Mr #5 has left me with some scars; I’d never before perceived my genetic condition, painful as it may be, to be a barrier to a relationship. Most of the time I have a strong enough perception of my self-worth to realise that it’s his loss, and if he’s flaky enough to turn me down because of the 1 in 20+ chance that any future kids – if we ever got that far ­– would inherit the more painful version of this condition from me, then he’s probably not the best person with whom to entertain the idea of a relationship. I mean, imagine something actually went wrong – not just a ‘maybe one-day’, but an ‘actually now’. What if a pipe burst, or the car broke down, or one of the kids got measles? It’d be a veritable Armageddon! I want to meet someone with whom I can face the challenges life brings hand in hand, all the stronger for having each other. But still, it stung, and on those days when I’m cursed with H. Golightly’s patented Mean Reds, it’s a new, looming spectre in the back of my mind.

“Every cloud has a silver lining” and this cloud was no exception. “Dickface”, as he’s affectionately known by some of my friends, has provided me with a lovely segue to bring me to the next, short but exciting chapter of my life: today was my first day at the INPUT Pain Management course at St Thomas’ Hospital in London. I have fondly nicknamed it St Thomas’ School of Pain, a name that brings with it images of a slightly twisted, Tim Burton-esque version of Mallory Towers. I might even have to get some ginger beer for a midnight feast. My goal is to try and expand the parameters of my life again, to re-encompass into it things I used to love but may have let go, and to do this independently, not having to rely on anyone else to help me cope with the pain. I’ve written before about depression, and I’ve written about the emotional reactions I have to parts of my body when they cause me pain. Those are just two of the experiences that will be covered on this course, and much more, in much more depth. It’s going to be a tough four weeks, but we’ve been told to approach it as an experiment, and in that spirit I shall be documenting some parts of it here. In addition, the philosopher in me is intrigued to see how others with chronic pain refer to themselves and their bodies: as one unit, or as two distinct entities?

Anyway, I digress. Today was Day 1, and in all honesty not much happened: a lot of introductions, to each other as well as to the staff; an outline of what to expect; initial assessments (I had to walk up and down a corridor for five minutes); and not forgetting lunch. Tomorrow is when the fun really begins. That said, it has  already got emotional a couple of times, and I predict that will only increase as we all start to realise we have four weeks ahead of us of facing up to that which we normally try to sweep under the rug. I might buy shares in Kleenex this evening.

And my love life? Well, I intend to see Mr #6 again – and soon if I can – but unless it goes tits up I’m unlikely to write about it for a while. All I hope for is some fun experiences, more intriguing conversation, someone to eat meat with, to feel a few fireworks, and to get through it all without being cast aside as damaged goods. Because I am one hell of a catch – I mean, even as I wrote the first draft of this in Leeds station, the cute barista in Starbucks came over to where I was sitting for a brief natter, then made me a free drink to make up for my train being cancelled.

If only I lived in Leeds…

IMG_1793    IMG_1795    IMG_1870

[i] Note to self: ask for watch for Christmas.

Dear Leg,

Dear Leg,

You’re hurting me. I know many parts of my body hurt me, but recently you’ve been doing it better at it than the others, more so even than Right Leg, Back or Head. And if the pain wasn’t enough on its own, it and therefore you make me limp sometimes. Like this morning for example. Limping even though I am a fit and (relatively) healthy 26 year old woman. That attracts attention, and even pitying glances, from absolute strangers. I don’t like that. It upsets me. If I’m going to attract attention from passers-by I want it to be because I am happy, confident, smiling, polite, friendly. I don’t mind being sad – it’s natural – but I don’t want to be pitied. It, and therefore you, also make me feel like a fraud, because in five minutes or five hours or tomorrow, I won’t be limping. There are so many people more worthy of pity and absolutely any ensuing empathy. I know I also probably attract at best some incredulity and at worst ridicule; despite your best efforts I’m still wearing heeled boots today. But I can’t really blame my choice of inappropriate footwear on you, even if I wanted to.

I resent you. I resent you for so many reasons. I resent the pain. I resent that even though I exercise, and make extra effort to eat what you supposedly need to recover and cool down and stretch, you still choose to hurt me. I eat within the stupidly small timeframe you give me to do so; it takes me longer than that to shower and dry my hair, meaning I’m often found awkwardly with struggling to get my damp body back into my underwear with a recovery bar clamped between my teeth, or trying to dry my hair with already aching arms and my mouth full. I resent that even though I stretch, and my flexibility is good, you choose to spite me there too. Because while if I don’t do it you hurt more than you have any right to, if I overdo it even slightly, I can’t feel bits of you sometimes for weeks. It’s a very fine line you’re making me tread. I also resent that even when I can’t feel you properly because you’ve gone numb in places, about the only thing I can still feel is the undercurrent of pain flowing up the pathways of my nerves. Nerves that I’m learning to identify by tracing the route pain takes up and down my limbs.

I resent that you make me tired. Yes, this is in conjunction with the rest of Body, but in hurting me worst you are currently therefore you are the most culpable of the despicable lot of you. Even than Face, who has also developed a knack of making me feel stupid (how many people have you heard complain of ‘face ache’?) I resent that even when I let you rest up to, sometimes even more than, ten hours a night, or sit inside on a beautiful bank holiday Monday afternoon so that you can be propped up with no weight on you, you pick and choose whether to feel better depending on whether it suits you. I resent that if I don’t sleep enough, I lose the resilience I’ve learned and still work on and strived to achieve and still strive to improve. And I resent, so very much, that you sometimes you use pain to deny me the sleep I need to cope with that pain you’re so cruelly inflicting.

I resent that you made me sit down all night at my friend’s hen party a few years ago, when I should have been up dancing with her, celebrating how much she was loved by everyone present, her upcoming marriage to her lovely fiancee, their future lives together, and in short celebrating life. I won’t be modest; I know I was an excellent bag-watcher and provided a port in the storm of fun whenever someone needed a five minute breather. But you should have let me dance, even just for a little bit. I even wore flats all weekend, just for you. But you still chose to spite me.

I resent that in the last two years you’ve scuppered me repeatedly, at times so much I’ve had to be helped out of my car into the house in phases, pausing for moments to recover and regather my wits in the garage, then the tack room, then the kitchen before making it to my bed. That you caused me to have to be carried upstairs like an invalid because I couldn’t stand, helped into a bath like a patient in the hope that the heat would ease the torment. You’ve hurt me so much I’ve bitten pillows and screamed into mattresses. I got my own back a few times by digging my fingernails into you, once so hard you bled. But let’s face it; I’m losing out there too. You inflict pain on me; I feel it. I inflict pain on you; I still feel it. It’s a two headed coin when I’ve called tails.

And if I’m shallowly honest, I resent that you force me to go through all of this, and still you cling on to those bloody stretch marks, and hold on to scars like a miser. And of course the hair you grow just has to be dark and noticeable, making regular shaving a necessity. You have dry skin that seems to drink any moisturiser I give you in huge gulps. You are just that bit too long for a Topshop long-leg length and yet also that bit too short for Long Tall Sally trousers – two pairs of which I’ve taken to be shortened, just to try and get trousers that fit me. Being more accommodating would be no fun for you, would it? To be fair, I’d accept all this without a grumble if you’d knock off the whole inflicting pain bit you’ve become so accomplished at, but given that you won’t stop that bit, can you really not drop even just the orange peel patches? Have you not heard of compromise?

But, even as I write this letter to you, while I’m sure that my resentment will cause rifts and barriers between us for many years to come and that you will continue your very best efforts to make life difficult for me, you should know that I still love you. I don’t think – though I’m always not certain – that you do it on purpose. In fact, I am actually proud of you. After all, you are one of just two who carry me around all day long, often in stilettos because though I know they make life harder for you, they make me feel good and smart and the turquoise ones especially are fun.

Last year you proved to me just how much you can do, when I agreed to go on a 5k run with a friend on the proviso that she let me walk whenever we needed to. And you didn’t need to. Not after three kilometres when we got to the viaduct, or after five or even eight kilometres, as we ran through fields and down to the reservoir, over stiles and up hills to breath-taking views, through muddy fields of cows. You got stronger, and faster, and carried me on a hilly 10k race around Petworth Park. Your endurance improved and you carried me, smiling can you believe, over the finish line of the 2014 New Forest 10mile run. And just three weeks ago, you carried me 13miles around the beautiful town of Hastings, making the extra effort to take me across the route to high five small children cheering everyone on from the side lines with their little hands held up on outstretched arms. You kept going while Chest decided to stab me with every breath like it did two summers ago, making me hold my breath for as long as I could before silently screaming through a single inhalation, pain white hot in my chest. Deprived of oxygen when you needed it most, after over two hours and 12miles into the run, you still kept going. And you sped up towards the finish line. Do you realise just how incredible that is?

I choose to make you my friend. I will continue to try and make you stronger, and balance the tightrope of post-exercise non-numbness-inducing stretching, and juggle protein bars and hair driers simultaneously in the gym changing room. I will keep smiling on days you make me hobble around the office, in the hope that people notice the smile instead of or at least before the limp, and as a result I might resent you that fraction less. Being really honest, I’m going to keep wearing stilettos, but I will make sure I stretch Calf of an evening as well as that of your twin Right Leg, even if I haven’t been to the gym. That way you won’t suffer unnecessarily in the way you make me suffer (two headed coin, remember?) And if you’re really, really hurting me I’ll give in and wear the ugly-but-comfy shoes with mattress soles, just in case it softens you up a little. I will try not to mark you with my fingernails when you hurt me. I will try to rest you when I think you need it, even if you don’t hurt me less as a result. I will try to keep sleeping, to let you rest and recover and repair, and I will use everything from chamomile tea and lavender oil to medication to help me sleep through whatever levels of pain you choose to play with at night, so you can rest and recover and repair even if you don’t choose to give me the night off. You won’t play ball; it won’t be quid pro quo, and I accept that. But nonetheless I’m going to keep looking after you, stretching you, moisturising and shaving you, trying to accept the orange peel bits of you as best I can, even if you keep hurting me. I’ll try to forgive you when my trousers are that bit too short or drag on the floor slightly, and try to remember that you keep me up on Feet all day, even if you hurt me while doing so. And in return, I hope you will keep me on Feet for as long as you can, and pain or no pain; that you don’t give up. Together, we’ll keep going and keep running and keep looking good in turquoise stilettos and we will keep living. Not only that but we will enjoying it in spite of the pain.

Yours, always,

Emily

Memento from Hastings Half 2015