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?

Support/awareness jewelry

Suzanne is one of our US followers and has RSD/CRPS. She also has a real talent for jewellery making and this is a post about her awareness jewellery, with a link to her web shop. I would highly recommend that our readers have a visit as her jewellery is just gorgeous.   I keep looking and wishing I could buy the lot!

Edited to add:  Suzanne has let me know she ships her gorgeous jewellery internationally, and makes awareness jewellery for all sorts of causes, not just CRPS.  xx

Tears of Truth....

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“Support in Jewelry”..http://www.freewebs.com/jewelrymkr is the website to visit if you wish to find these beautiful pieces of jewelry to help with awareness for the general public, and for patients!

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Complex Regional Pain Syndrome – what it is and how patients can help educate NOW.

Well – who got Easter eggs?  No chocolate eggs for me this year, boo hiss.  Hope you all had a great Easter.

Following my much anticipated trip to the neurosurgeon on Saturday (30th March), I have the relief of having been diagnosed with a pain disorder called Complex Regional Pain Syndrome, or CRPS for short.   Relief?  Yes relief – I have waited so long for an answer to why I have chronic pain.   It’s not all in my head, I told you so!  I’m sure the negativity will hit me soon, but then it’s not like I didn’t have the pain before Saturday!  As CRPS, although not rare, is relatively unheard of, even by many doctors throughout the NHS, I wanted to share with you what I have found out about it so far.  Bear with me on this one as I am new to it too!  If anyone would like me to add to this or amend it, please let me know.  I’ll include a list of links at the end if you’d like to read more.   As a side note, I would also love to hear from other people with CRPS.  

CRPS was previously known as Reflex Sympathetic Dystrophy (RSD) and historically labelled as causalgia (from the Greek words for heat and pain), Sudeck’s Dystrophy and Hand-Shoulder Syndrome.   Not a lot is known about this condition, other than that it often arises after an injury or surgery (most commonly in a limb, but can start anywhere in the body) and causes a variety of symptoms, the main being chronic intractable neuropathic pain (such as burning sensations), often making the gentlest touch incredibly painful.  Other common symptoms include skin, nail and hair changes in the area affected, differences in temperature/colour of the area, and swelling.   Sufferers don’t necessarily have all of these symptoms, and commonly CRPS is progressive.   The psychological result of the chronic day in day out pain and lack of sleep is often depression, understandably.   There are many more symptoms that are associated with CRPS, but I won’t drag it out into a huge list (see links below for more info).

The important thing to mention is that early diagnosis and treatment is absolutely imperative – treatment within the first 3-6 months gives the best chance of recovery, with full recoveries after a longer term being very rare.  CRPS is generally considered a lifelong illness in cases where patients have had long term chronic pain of 2 years+, although in these cases patients can go into remission either spontaneously or through various treatments.   CRPS is most commonly treated with a multi-centred approach, often using drugs or epidural nerve blocks to target neuropathic pain, physiotherapy to aid movement in the effected area and psychotherapy to address psychological and social needs.   This psychotherapy is believed to be very important in longer term cases where acceptance of chronic pain as part of life and pacing skills are considered crucial.

I found this video on a pain forum, which goes into the pathways of neuropathic chronic pain in decent layman’s terms – it’s really well worth watching, and not boring at all.  While it doesn’t mention CRPS by name, that is what Chandler suffers from and the information is pertinent regardless.

I will post more in future about CRPS itself and how it effects people in the future, but in the meantime I think it’s really important to publicise this condition.   Most of the charities and support for CRPS/RSD sufferers is US based and more frighteningly, there is very little knowledge of CRPS within the NHS itself.   It is really important that the message gets out about it.

According to figures published in a May 2012 paper by the Royal College of Physicians, there are potentially 480,000 sufferer of CRPS in the UK alone, and in stark contrast only 20,000 have actually been diagnosed.  Early diagnosis is crucial, as I mentioned before, so it’s important to get the word out.

I spoke to a gentleman on a pain forum recently who has been in touch with his local MP to ask for discussion on CRPS within parliament.   His MP, Ian Stewart, is going to ask for a debate in parliament “after Easter”, and he is asking CRPS sufferers to contact their MP and ask them to get in touch with Mr. Stewart and support him – the more MPs that are aware beforehand, the more likely it is that parliament will sit up and listen.   I’m going to beg you now to please write to your local MP (make sure they cover your constituency or they will not be able to help) and tell them about CRPS, send them some links from the list below, and tell them about the RCP numbers above.  Ask them to support Ian Stewart in his call for a debate.   I and many other people would very much appreciate the support!

In the meantime, if anyone finds a current UK based, CRPS-specific charity or support group, please let me know.   I’ve been looking all week and can’t find any that are still active.   I am very interested in gathering a bit of momentum for CRPS support and education in the UK.

More information on CRPS can be found at the links below:

Patient.co.uk Information on CRPS

American RSD Hope

Reflex Sympathetic Dystrophy Syndrome Association – USA

CRPS Patient Leaflet (aimed at inpatients) – Bath Centre for Pain Services, UK

How I roll – Drive Medical Lightweight Rollator

Last week I was assessed by Occupational Therapy for adaptations in my home, due to my lowered mobility from chronic pain and radiculopathy.  At the time I had a lovely chat with the therapist that came out, chatting away about the family and pets (although she wasn’t keen on the tarantulas!).  As part of this friendly banter, the subject of my falls outside came up.  I told the therapist how at that point I was using two elbow crutches to get around, but that I was falling despite them.  She offered to have a physiotherapist come to the house to assess my mobility needs.  I had known for a while that I wasn’t going to like the next step in mobility aid, the “rollator”.  I was in two minds about accepting the help, one half telling myself I am only 35 not 95 and it isn’t fair (imagine stamping 3 year old), and the other telling myself to get a grip and get over it.  In the end my husband talked me into it by making the valid point that anything that got me out of the house was worth a shot.  My (teenage) son piped up that we could always call “Pimp My Ride”.

The next day the physiotherapist came out.  Putting aside the fact that he was very dishy and looked to have recently qualified if age was anything to go by, he was extremely professional if a bit quiet (a 35 year old woman on sticks swooning at you has that effect I’m sure!).   My husband helped him into the house with the rollator and I got my first look at my new wheels, the Drive Lightweight Rollator:     Lightweight Aluminium Rollator – Drive Medical.

Drive Lightweight Rollator

Drive Lightweight Rollator

Well, I wasn’t expecting anything fashionable, I don’t think there’s such a thing when it comes to rollators, and I was just grateful for the help, especially considering this was covered by the NHS.   That said, my gut did lurch at the idea of using it, but I think many people must go through the same.   I don’t want to be reliant on mobility aids, but then I do want to keep mobile until the doctors work out a way to make my legs function normally.   The physiotherapist urged me to let him show me how to use it in my driveway outside and we had a pootle about for a couple of minutes after he fitted it to my height.   He attempted to show me how to fold it, but it wouldn’t budge, even with my husband’s help.

The Monday after the physiotherapist dropped the rollator off, I was admitted to hospital.  I had to go as an emergency by ambulance and because of the rush I and my husband forgot to bring my crutches with me.  The next morning, I was stuck in the hospital bed, unable to get up and move about.   When my husband came to visit that morning,  he brought the rollator, and we used it around the ward and for my short walk home.   That was my first “proper” go with it and my initial thoughts were that in general it was handy to have a rollator to be able to sit and break a walk up into manageable portions.   However, that wasn’t specific to this model, nearly all rollators have seats.   The hard wheels were skiddy on the smooth floors, which meant the rollator often got ahead of me, or swung from side to side like a trolley, but I expected them to fare better outside.   They did indeed have more traction/grip outside, but the hard wheels and lack of suspension meant that even the smoother outdoor pavements made it vibrate and judder about like an old shopping trolley.   I was quite surprised at how poor it was in this respect as even the cheapest prams and buggies have some sort of system in place to make the ride smoother (whether softer wheels or a bit of suspension), it’s not new technology.

This model has two methods of braking – one is to squeeze the handles to the degree you need to slow down, and the other is to click the lower half of the handles down as a full brake for sitting.   I found that even with the full brakes on, when I sat on the rollator, it sometimes moved a bit, and seemed unsteady.   This was worse on smoother surfaces and I found I couldn’t rely on it to sit on in the ward due to the smooth floors.   That said, the squeeze method of braking came in handy for slowing the rollator if it started to get ahead of itself while I was trundling along.

Another more major downside to this model was having to fully lift it up kerbs and over even small obstacles.   At the entrance to the ward was a slight lip to the floor, this was only a matter of a centimetre or so, and yet the rollator’s small wheels repeatedly “jammed” on this and nearly made me fall.  On larger kerbs (such as outside, crossing the roads), my husband had to help me lift it up over them.  This added time to the crossing, meaning at one point I was stopping traffic (makes a change!) and also meant I wouldn’t be able to use it alone.  Although the rollator is classed as a “lightweight” model (weighing in at “less than 7kg” according to the manufacturer’s website), it’s still a hefty weight for someone to lift when they’re wobbly on their legs.    Many other models from other brands have “kerb climbing” ability or accessories, although in fairness these models are more expensive and were not available to me in my area on the NHS.   That said, I would not feel safe using this model alone, and this would restrict my ability to get out and about, and so if I continue to use a rollator, I would have to buy a model that did not have the pitfalls of this model.

In summary, I hope this review is helpful to those of you considering a mobility aid, and to make things a bit easier, here are the pros and cons of this model:

Pros:

  • Available in my area as a free longterm loan, funded by the NHS (please contact me if you have experience with other areas’ NHS provisions).
  • Cheap to buy – from around £49.99 online.
  • Storage for a small amount of personal items under the seat.

Cons:

  • Can be unstable to sit on when locked if parked on smoother surfaces.
  • Small wheels mean going over even small thresholds is difficult, kerb climbing is impossible without lifting.
  • Hard wheels and lack of decent suspension make a juddery ride, which could be bad for arthritis sufferers in particular.
  • Very difficult to fold and not freestanding when folded.   Would need someone with you to fold it as it can be a two person job, or at best a two handed one.
  • On smoother surfaces, handles like an out of control shopping trolley.

If any manufacturers have a product they would like me to review for them, please get in touch.  I would love this blog to become a tool for those with chronic pain to aid them in finding the right products and services for them.   I will always review fairly and on personal experience.   Many thanks!

Is that a purple unicorn? Side effects of medications.

So today I feel like discussing the side effects of medications I am using, and have used.  Those of you managing our pain with prescription medications, particularly anti-epileptics such as gabapentin or opiates such as morphine, will get where I’m coming from.

At the beginning of the week I spent some time in a delightful hospital ward after being rushed to hospital by ambulance for being totally immobilised by spasms in my back and ribs which, along with my herniated disc, made me lose the feeling in my feet and find it difficult to breathe.

I spent a day on IV morphine and once better was sent home with topped up doses of my current meds (buprenorphine and pregabalin) and a new medication, duloxetine.

Duloxetine (sold under the brand name Cymbalta) is a seritonin-norepinephrine reuptake inhibitor.  Sounds like gibberish?  It mostly is, but what it boils down to is that this is an antidepressant medication that also works on chronic neuropathic pain, such as diabetic peripheral neuropathy or Fibromyalgia pain.

The doctor assured me that not only would this medication help with my weak legs and neuropathic pain, but also it would lift my mood, which understandably after months in uncontrolled chronic pain was low.   He got that right, by the next morning I could feel my thighs, which have had a burning numbness for four years.  I’m not sure whether it was the duloxetine or the newfound feeling in my legs that made me chirpy as hell yesterday, but I don’t care.  That’s one day marked as a good day in the last six months, and I’m a fairly positive person by nature!  I’m taking that and remembering it as fondly as my wedding day, that’s how much I needed it!

That said, I also spent yesterday with a very fuzzy head and slightly elated feeling.  Not that unpleasant, fair enough, but I’m glad I don’t have to drive or work in an office.  God forbid if I had to be in charge of nuclear armaments!  This morning, that fuzziness developed into a stinking headache, and to top things off, I couldn’t go to the loo thanks to the after effects of 36 hours on IV morphine.   Needless to say, my mood was as cloudy as my brain.

These aren’t the only medications I’ve used where I’ve had to ask myself which is more important to me – the positive effects of the meds or the side effects.  When I started pregabalin, that was tested to the hilt by the sudden weight gain of an entire dress size, and that was while eating healthily and actually attempting to lose weight, rather than pandering to my wallowing mood and eating entire big bars of Dairy Milk in bed like before.  It’s a bit of a bummer to say the least when you’re eating spinach salads and still gaining weight!   But, with continued use it did help with my nerve symptoms, so who am I to prioritise how I look over how I function?

And what about the month in 2010 when I was taking Diconal (dipipanone) for the initial herniation pain, and for the first two nights genuinely believed it was snowing outside my bedroom door and I was snowed in.  I remember trying to read a book through these episodes and actually feeling myself diving into an “O” in the text.  These episodes were quite distressing but dissipated quickly.  Of course although these first nights wore off after a few days, the more distressing side effect of an episode of gastritis was the straw that broke the camel’s back.  Diconal worked well for the pain for me, but the mental and physical effects were just too much.

So, what have I done under these circumstances?  For the more serious side effects, I have consulted my GP immediately, and I would still do that with minor symptoms if I wasn’t sure about how dangerous they were.  But for my fuzzy head, I am following the advice to ride it out for a fortnight.  I am assured by my doctor that most minor side effects from the medications I am on will dissipate after 2 weeks of continued treatment.  This is certainly what I found with the nightmares from Gabapentin and the floatiness of the first ever buprenorphine patch I wore.   I would still urge anyone reading to discuss any side effects, big or small, with their GP or primary care physician, it always pays to be careful and no decent doctor would be put out by that.

I do wonder what life would be like without these medications.   I’m certain I wouldn’t cope with the pain, but I do hear of cases where people have come off all their medications (under medical supervision) and found new ways to cope with the pain.   I want to hear more about these cases, as there’s nothing I’d like more than a drug-free life with the ability to cope and function.   At the moment I can only function with the medications I am on, and with the other coping techniques I use, such as breathing exercises, TENS, heat and ice packs, relaxing baths and a cuddle off my husband.

So I am planning ahead, no major life changing decisions ahead for me in the next two weeks….oh wait – I have two hospital appointments to discuss spinal surgery!  Well, I can hope that the side effects wear off in time, or I suppose my husband will have to babysit me……again.  ;o)

Newbie to blogging

Just a quick post to welcome you to my blog.  In the About Me page, you will find more information about me and why I started this blog.  I am really looking forward to writing this, and hope you will share your experiences and thoughts with me as the blog progresses.  I will be writing some product reviews on mobility aids and other items that I have tried in recent years, and would love to publish some of yours too.   If you have a topic you’d like me to cover in one of my posts, please feel free to comment and leave your ideas.  Lovely to have you here!