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An update on Kathy’s journey – there are 3 A’s in pain

So last time I updated you, I was talking about the big A, acceptance.  That’s still something I am monitoring, as you know I have mixed feelings on it.  I do think acceptance is bandied around a bit as an excuse not to bother trying by doctors who don’t or don’t want to understand CRPS and chronic pain in general.  Scary when it’s your pain clinic consultant!  That said, I’ve had to broach my CRPS in various circumstances recently and on reflection I do think acceptance is something I can hack, well a bit.

One example is my eye test this week – I lost my glasses a while ago and at my last test had been told I “MUST WEAR THEM AT ALL TIMES!!!”, so avoiding the situation wasn’t an option.  Part of the eye test involves the optician asking about current medications and health concerns, and I couldn’t really get around this without having to mention the opiates and CRPS.  On sharing this, with a cringe, I got the overt sympathy response from the optician.  “Oh you poor thing, I could never cope with that, it must have ruined your life”.  I don’t know whether it’s my aversion to any kind of pity or being a Brit, but my usual go to response of a bit of self-deprecating humour came out.  I don’t want to be a “big deal”, I don’t want CRPS to be getting all the attention when I have gorgeous big brown eyes that need checking out.  I played it down, “It’s no biggy, everyone’s got problems and at least mine get me the good stuff!”   Is this another step in acceptance?  Possibly.  I do think I am becoming obsessed with that word now and not in a good way.  *spits*

Now ACKNOWLEDGEMENT is an issue I can sink my teeth into.  That’s empowering, but can be the polar opposite of my stiff upper lip when I focus on why others aren’t acknowledging my pain, symptoms, story, right to be listened to.  I think this was a greater issue that came out of that recent pain clinic appointment.  I wasn’t acknowledged.  Noone wants a fuss made over them (although it’s my birthday today, so you can go for it this once lol), but how do we balance avoiding the pity trip (whether from ourselves or others) with enough acknowledgement of our issues and what is important to us?  Too few doctors acknowledge CRPS as an illness, I’ve already met a couple in person who see it as “just a label”, and I’ve met more who think life is better without a diagnosis or label at all.  Perhaps that’s the case, but how does our pain get acknowledged for services such as benefits without that?  We get seen as moaners, people who “just have a bit of a bad back”, that kind of thing.  We need that acknowledgement to open doors that help us through in life.  It’s a fine line, I know, but it can make all the difference.  It’s all very well saying we don’t need a diagnosis psychologically, but people are different, what they need is individual, and socially/support-wise many of us do really need a label just to get the help we need.

The last A is advocacy – who has our back?  Not the government at the moment, who are stripping the weakest in society of their benefits.  Some of us have great doctors who are tuned into what they need, and others of us feel left out to dry.  I’ve been struggling with my pain clinic this month.  As some of you will have read, my consultant got me out of the door by promising me a place on a pain management programme “within a month”.  This consultant runs the PMP, and is well aware of any waiting lists.  I was stunned and my husband was cynical of the promise but got direct answers that left no uncertainty – I would have a letter within a fortnight, and a place to start within a month.  Nothing there to be misunderstood.  When I didn’t receive a letter, I rang the secretary – and I might be paranoid in pointing out at this point that she has told me previously that she has called ID on her phone.  Four calls over a week were answered by another doctor’s secretary who shares the office but not the phone line.  Each time I was promised a call back within the day, not one time did I get one.  I caved and rang back, to be scoffed at by my doctor’s secretary and told it will be “months and months” before I even heard about the PMP, never mind get a place.  When I explained what had happened in the appointment I was told I must be mistaken, but she would speak with my consultant and ring me straight back.  Did I get a call back?  Did I heck as like.  Another call for help regarding severe new symptoms and possible rapid spread of the CRPS has also been ignored despite the other secretary passing the message on that in her view I needed urgent help.  Still waiting, a week on.  On a side note, my consultant’s secretary is not the only one with caller ID and I have not missed any calls, never mind one from her office.  So advocacy is not something I have there.

I have however used the Patient Advice and Liaison Service (PALS) in the past and intend to do so again on Monday.  I also finally have the acknowledgement of my GP now my diagnosis is in writing and he is finally working with me in getting things sorted.  This has involved the GP going over the pain clinic’s head by referring me directly to the Spinal Chord Stimulator neurosurgeon that the pain clinic refused to do.  It may well also involve a referral to a new pain clinic as I believe the relationship with my current one has irrevocably broken down due to their continuing lack of communication, acknowledgement and support.

Another part of the advocacy issue is that I have received a response from the Secretary of State for Care and Support to my letter to my MP.  I will get it scanned and uploaded at some point when I work out how best to do that.  Check out previous posts on how you can get the government to listen to us.  The Rise Above Pain blog will be moving to a new level in advocacy for CRPS and chronic pain sufferers, I intend to get the ball rolling with a support network and advice packages, and also get some education on CRPS out there to those who can genuinely make a difference.

So that’s where we’re at.  I’m going to keep pushing for support while not giving in to self pity, which is something I really cannot stand in myself.  CRPS can take my nerves but it can not take my often ridiculous sense of humour or determination not to “give up”.  If there are people like me in the UK who want to get this moving forward, please pipe up!

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Acceptance part 1 – achievable peace or the Holy Grail of pain?

acceptance

I’ve been thinking a lot about acceptance.   I’ve held off writing this as I really hate coming from a doom and gloom standpoint and so wanted to be a bit more balanced (?!) before approaching this subject.   It’s not very fair to you lot if I am sat unwashed and unmotivated, cramming chocolate into my cakehole while moping in my ‘jamas about just how terrible my life is, ha ha.

Over the last few weeks, I’ve had a lot of people advise me about acceptance and its role in coping with chronic illness/pain.  Having had chronic pain for over 4 years now, I’m surprised that I’ve never come across this trend before – maybe my brain shut it out.    ‘Trend’ is probably the wrong word, but you follow me.   It seems commonly believed that the key to coping with chronic pain in particular is the acceptance of the hand we’ve been dealt.   You’ll see the idea discussed a lot on web forums and Facebook pages related to chronic pain and specific conditions thereof.   I’d be surprised if you could scroll through a page without it being mentioned at least once, but that alone is no judgement by me on the concept.

Now I’m a skeptical creature by nature, some might argue a bit cynical although they’d be wrong as if anything I tend to be a bit too optimistic and rose-tinted about life, which my family have a good laugh about.    Many a time I’d be gutted as a child when my Dad would point out the obvious mistakes in movies, I always wanted to believe.    I’ll admit that at first I read about this elusive acceptance and wrote it off as Dr. Phil/Oprah school of thought which I don’t much go in for (no offence intended to die hard Dr. Phil fans!).   I can just see either of them telling Americans to “Just OWN your pain”.   You know exactly what I mean so don’t pretend you don’t!  Perhaps I just struggle with abstract notions such as “owning” – as soon as I think of it I wonder how much I could sell what I’m meant to “own” for on eBay.

There does seem to be some clout to this acceptance malarkey though – I found (among others) a 1997 study by Lance McCracken for the University of Chicago that suggests greater acceptance of pain leads to less depression, less disability and even lower intensity pain scores.   Indeed many pain clinics are focusing their pain management programmes on aiding people to accept and therefore cope with their pain better.   That said, the idea of accepting anything bad just seemed inherently alien to me, sure that would be giving up?   Not so, say those who advocate it, acceptance is not about accepting defeat, but is about continuing to live life and be happy, instead of letting pain put life and happiness on hold.   Well, once it was put that way it made a bit more sense although it did sound suspiciously like an end goal that was more of a pot of gold at the end of the rainbow than anything tangible.   At this point I was convinced I’d turned into my Dad, looking for the strings in the special effects.

A little while ago, I got what I thought was an end to the search for a diagnosis and with this came a sense of relief – not at having CRPS, which I wouldn’t wish on anyone, but for an end to wondering and worrying why I was so unwell and losing my ability to walk, and what the future held.   At the time a couple of doctors, independently of each other, suggested an operation which they felt could offer me substantial pain relief and even my legs back to normal.   One even wrote to my pain consultant suggesting he referred me to the surgeon.   Now this was an outcome I could accept, finally I could understand what I’d been advised about accepting my pain and getting on with life.   I revisited the idea and decided, yes, I’d finally got there – things were going to be fine as I had ACCEPTANCE.    At long last I could stop being a miserable git and start living life to the max – like I was finally living the old Bodyform adverts or something.   I mean, come on, those girls could rollerskate in circles AND rock-climb and they only had an intimate disposable product on their side – can you imagine what they could do if they had ACCEPTANCE too?

On Saturday I had my pain clinic appointment.   Now there was no negativity from the consultant, he was great, which was more than I was expecting from our first meeting after having moaned to him in a letter previously.   However, I came out of there and broke down on the roll home.   I moped for 48 hours solidly and completely ignored the good that came out of that appointment, like the place on the Pain Management Programme I’d wanted, and the go ahead to come off two drugs that have given me pretty significant side effects.   What had me moping?  All it took was the advice not to get my hopes up for the operation I was pinning my hopes on, and the advice that medicine wise there’s nothing left to try.   There was also the knowledge that all they could do for the loss of sensation in a rather delicate area was offer me counselling to learn to, yes you’ve guessed it, accept my problems.

Now in hindsight it’s clear to me that my acceptance was a fair-weather friend – there while the future was looking rosier and *poof!* gone at the first sign of hurdles.   It’s certainly true that while I thought I had that acceptance, I was coping with my pain better.   However, accepting and embracing are two different concepts and my God I can embrace pain when I’m miserable, but I can’t accept it.   I spent nearly two days positively relishing my higher levels of pain as it reinforced my miserable attitude that life was again, totally pants.   Acceptance and I were on a break.

I can hear you thinking that I wasn’t going to be miserable and down in this post – well that’s the miserable bit over and I’m only being honest.   I am not posting this for sympathy or for anyone else to give up trying to feel better.   The last thing I want is for anyone to feel like I felt on Saturday afternoon, but I do wonder if it’s better to be prepared than to be blindsided by believing we’ve got there only to have it crumble?   I haven’t given up the hope of accepting and managing to feel okay about things more regularly, and I’m going to keep posting back, honestly, about how that’s going.   What I hope for out of this post is that anyone else struggling to accept their pain reads it and thinks to themselves that others are out there struggling to accept too, and that’s okay – hell maybe it’s even normal.   There’s no point in us adding to the list of things we already beat ourselves up about by worrying we’ll be seen as pessimistic or revelling in being a victim, and perhaps, just perhaps, there are more practical ways to improve our situations at least in the short term while we get our heads round things or wait for a clearer picture of the future?  Maybe acceptance will creep up on us when we least expect it.   In the meantime maybe it’s just as good to accept that we don’t accept……yet?