Taking Control Back: The Expert Patients Programme – First Day

You might, or might not have read my post about my interest in the Expert Patients Programme. I won’t go into lots of detail about the Programme here as it’s well documented in my other post.

After a frought week due to having a sick  husband, children who needed entertaining, work and preparing for Mother In Law to visit – which of course entails making the house look beautifully tidy and pretending we live that way all the time instead of the shitpit we actually live in – I almost, almost, cancelled. “I don’t have the time” I said. “I have too much to do” I made excuses. They were all true. But also, my back pain has been under control for a few weeks, and so, well it’s not a disability any more is it? I can walk relatively normally – apart from apparently I still limp a little, have a slightly odd gait, but can’t notice myself – and so I am taking up a valuable space that other’s can use. But, none of that’s true is it? I had to remind myself that if I didn’t do this, I would relapse at some point and be devastated that I have not moved myself forward. I HAVE to recognise that a month at most without pain so bad it makes me cry does not constitute a cure.

And so I went. At 9:30am on the dot. Without my paperwork as I lost it and having confirmed so late in the day I was not sure if I was expected. I was not expected. There was no course at 9:30am. Or 10am. It was at 2pm! I just laughed it off as typical of my chaotic and unorganized week.

I went to Session One of the Expert Patients Programme with probably far less trepidation than most of the other participants as I am used to being on the other side of the desks. I could feel the fear in the room from some when there was the prospect of talking, and I could sense the keenness of others to have people listen to their conditions, to hear what they have been experiencing, and later found that some of those people hardly see anyone socially due to their conditions making them housebound.

The Expert Patients Programme is, I have learned, an accredited programme which is run across the world, and was developed as the Chronic Disease Self Management Programme at Stanford University, California, who now hold the licence which allow it to be run, and is facilitated the same way throughout the country. I like that, as it gives focus and structure to the group, where it can be possible to run away with talking about our ailments for 2.5 hours, it hones us in on the purpose of the sessions, to learn the skills to be expert managers in our own health. Now, some people prefer to have free-flowing groups, but I guess that is where my own experiences of facilitation come in. Where it originates and how it developed interests me so sorry if you have glazed over.

Any fears or anxieties were immediately quashed at the sight of the full Tupperware container full of Bourbon Biscuits. Now I am a great fan of Posh Biscuits, but there is nothing better than bourbons. I felt at ease.

I won’t bore you with the full details of the first session, and of course we all entered into agreements of confidentiality so I shan’t divulge details of the participants, but, my over-riding feeling initially was that I was somehow a fraud, that my condition did not warrant me being there. There were participants there who have to suffer with multiple conditions at once, some as a consequence of other conditions, some with  multiple un-connected ailments and my life felt like a breeze – I have periods of wellness, I can still socialise (although I do that less and less), I am managing to hang on to my job.  But, I had to once again remind myself that this was a Good Day. And on a Bad Day I would possibly not even be there. Re-enforcing that was the fact that not one person saw my condition as minor and lots of what I shared with the group about the challenges I face as a result of my condition were equally shared with other group members and I realised that it was not about who had the most serious condition to contend with, there was no competition in the room – we were all there as we all had a condition or more than one that affected our lives to the point of disability and we were all there to find ways to manage. We were all in this together and the group gelled quickly as this became clear.

We all shared some of our personal challenges as a result of our condition, as much as we felt comfortable doing so, and it became clear that, despite the individual challenges that were unique to us alone, there were common ones that affected ALL of us in the room – I expected pain to be a shared challenge, and it was, and mobility for a large group of people, again it was, and not being able to do the things we used to be able to do, but I was quite surprised that fatigue came up time and time again. Every Single Person in the room struggled with fatigue as a result of the differing reasons for bringing us into that room together and it helped me a lot to realise that the continuous and horrendous and often debilitating tiredness I experience now is not unique to me, does not mean something more sinister is wrong, but goes hand in hand with chronic illness. And, as a result some of the course is designated to managing fatigue as it is recognised as a symptom of chronic illness.

The other challenge that we all faced, despite our wide ranging disabilities that have brought us to the same place, was that we are all struggling to come to terms with our conditions, with accepting that our lives have changed forever and that we won’t wake up tomorrow with a magic cure – it won’t go back to how it was before and no-one in the room had fully grasped that yet but we have already all made big life-altering changes and today was the start of another big change – acceptance.

And all 12 of us in the room had taken a huge step in acceptance by coming to this first session.  Even if I don’t find the strategies for coping new to me, just consolidating what I know, I have already come a little bit closer to accepting I have a disability by attending this first session.

Although, I am feeling so much better, it might have all been a misdiagnosis and I am on the mend right…?

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Taking Control Back: The Expert Patients Programme

This week I have been pointed in the direction of the Expert Patients Programme which is a free self-management course run by volunteers who all have a chronic condition of some kind, for patients who have a chronic condition of any kind. It is a 6 week course of 2.5 hours per week in a group setting and provides structured support and real strategies for coping with the impact of chronic conditions, increasing confidence, learning coping strategies, dealing with relationships as well as meeting other people with chronic conditions.

The first person to tell me about the Expert Patients Programme was a friend via Facebook as I moaned about the length of wait for my various hospital appointments. Because I have moaned to everyone about it. A friend who has a chronic condition and said despite not completing the whole course, he found the sessions he attended useful in managing how he coped with coming to terms with his condition.

Almost immediately after, and completely separately, a very close friend of mine emailed me to say she had actually spoken to the manager of the local Expert Patients Programme which is run from the local voluntary guild (of which my friend is the ACO), about my condition and also that I am a trained group facilitator myself. The coordinator has lent me the workbook so I could take a look at the course structure before deciding whether to do it or not and it looks well structured, thorough, and informative.

One of the things that appeals to me about the course is that it is run by fully trained volunteers with their own chronic conditions, and thus able to support from a personal understanding as well as being trained to facilitate learning in a group setting. I also like that it is in a group setting. There is going to be a wealth of knowledge, experience, information and support from this type of group, with people who know, who are there, who understand what it is like to never take a break from pain and who want to take control of their lives once again. I am already, ironically, a group facilitator in a cognitive psychology based area, which in essence is what self-management is but I work with people who are largely not ready to take control of their lives, and so know how important it is to be ready to do courses like this for them to succeed and the idea of being able to use my own experiences to share with others and help others has piqued my interest.

I am quite a thorough person when finding out about informative aspects of my condition – ways of coping, medical information about what is going on in my back, practical techniques, and medicines, but, what I am not so great at right now is emotionally coming to terms with the impact of chronic back pain so the support that a group like this can bring, and that I can bring to others appeals to me.

It’s funny because when I was first struggling with the pain and devastating impact of this condition, namely being told by an osteopath that I should not kayak again, he suggested cognitive therapy. But, he talked it up (or down) as being that much of my pain was psychological and that I needed to get to grips with it emotionally. My instant reaction was ‘fuck you I am not struggling emotionally’ and I walked about, did not return to see him again. To be fair, he was a tosser of the first order and did nothing practical after his initial correct diagnosis other than delay my treatment and make me feel like I should Just Get On with It.

I am not sure if it is me that has changed my own perspective in the last year, or that this course has been presented in a much better way, but, I like the idea of seeing myself as an Expert of my own condition, of taking control back, and so I am not seeing this like some counselling session to ‘come to terms’ with my condition, but one where I become myself again. Unlike those I work with, I am now ready to take control of my own destiny.

I have also read about being a volunteer myself, and yes I know, got to do the course first and learn to be that Expert myself before teaching others, but, I already want to be a volunteer. My friend clearly knows me well as she has already told the manager to expect me to end up as a volunteer!

So, I am going to find out when and where the next Expert Patients Programme is, sign myself up for it and I will post my progress on the course and any useful tips I learn on the way.

If you are interested in finding out about an Expert Patients Programme in your local area, you can either contact them via telephone or email, details on their website, or you can read more about it on the NHS website detailing specialist services available. 

It’s worth mentioning that there is also a specific Back Pain Management course run by the NHS, which I may be offered through the NHS hospital lead Pain Clinic, which will teaches specific skills relating to my back condition, but to use this as a tool alongside other treatment, and when I have more information about that I will post details. In addition to these courses there are other courses available for specific chronic conditions such as diabetes and arthritis.

Back From a Blog Break

I needed some time out. I have had a really hard few weeks. In many ways, but not least due to a major relapse. And yes I know the whole point of my blog is to moan and whine (wine) about my back problems, but it has been so all encompassing I needed to step back from it a little. As it happened, I didn’t do that, but was thrown full force into my back problems swallowing me whole and eating the identity that was once Me.

But that must change. So this blog may take a new direction. I don’t know how, but, I cannot just be, as my daughter stated last week when I put some make-up on for the first time in a while, as I was so sick of being asked how I was, people commenting on how bad I look, how much weight I had lost etc etc, I wanted to be seen as someone who looked well again – that I was ‘wearing make-up to show that I have beauty and not just a bad back.

I have bought some new clothes (I really have lost a lot of weight – my new ‘butt-lift’ jeans have nothing to lift up, so just hangs there baggy), some new make-up (got some free with No.7 voucher and a little spend, just my colour, sparkly black eye shadow!), had a child-free day today. Rock and Roll me!

Ode to Kicking This Shit

I wish I did not have back pain

I wish it went away

But it’s not going anywhere

It’s certainly here to stay

I think I’m finding ways to cope

and then it all goes wrong

I get respite but spend that time

waiting for it to all go wrong

I’ve had the most amazing christmas

despite enduring pain

but each morning I wake and fear

what that day will bring again

my days are getting harder

my world has changed and so

my life is never again going to be

the one I used to know

I have never had a year

with so many tears to fight

but I will keep going, I have no choice

but to fight this with all my might.

Why My Winter Boy Can’t Hug Me Right Now

My back has ‘gone’ for the millionth time. I am moving, but it is painful. R has just gone to do the rest of the Christmas shopping. My Summer Girl is happily colouring.

My Just 3 Winter Boy is in a happy, lovely, cuddly mood. But, he is not in a still, quiet, calm, cuddly mood, but the type that has him climbing all over me being a cat – he is twisting over my back, hanging off my neck and laying across me – normally it would be wonderful. But, right now I am having to keep asking him to stop and be still, and as he can’t, to sit next to me. He simply won’t stop.

I remind myself that this will not affect him negatively in the long term, but how can it not? How can he possibly understand that sometimes mummy loves snuggles and a little rough and tumble love, but sometimes not? It’s inconsistent. And yes I tell him it is because my back is feeling poorly, but he just does not understand that, or rather, yes he understands I have a painful back, but does not make the connection between that and jumping on me.

And it hurts me so much.

Spinal Surgery Update

That is an exceptionally boring title isn’t it? I will change it when I think of something dazzling.

I had my Spinal Pathway appointment yesterday. This is an assessment appointment to determine if spinal surgery is an option. I saw this same man, Mr P (he is a senior practitioner physio something or other)  in early August this year, and at that appointment he was clear that surgery was not an option based on my MRI results from May 2012. His view was that a discectomy (where the offending bit of disc is removed to free the nerve) would not help as the prolapsed disc didn’t appear to be touching a nerve, and that spinal fusion is a last resort, end game situation, where I am nowhere near yet. However, he also agreed things were not right, which suggested that the MRI is now out of date and things have moved on somewhat since May, and he would review this decision in two months (yeah right!). The deal was I did aggressive physio first to get me standing upright. So, I completed physio which indeed saw me standing straight again after much pain, but the result was also an sharp increase in sciatic pain and numbness and transferred largely from my right to my left leg.

After much drama with nerve blocking painkillers, getting past a GP who felt I should be able to continue as a Zombie for the rest of my life over spinal surgery, and over 4 months later, I was back where he promised I would be, in his Office, discussing my continued and worsened condition. And this time he had a completely different opinion, following intense examination and concluding I have calf muscle wastage and significant leg weakness due to what appears to be nerve damage. No Shit Sherlock! He is not exactly telling me something I didn’t know. But, I didn’t realise I had such issues with standing on tiptoes using my left leg – that explains I fall flat on my face when doing aeroplane pose after wobbling all over the studio first in Body Balance.

A full and frank conversation ensued, and some tears from me, him telling me that if sometimes peoplg go through a few years of debiliating pain and the good news is that by the time they 50, the disc will be so disintegrated there is no more pain and the vertebrae will (sort of) fuse on their own (I have heard differently but hey ho). But, Hang On a Minute I said. My daughter will not need to be taught how to ride her bike when I am 50. My son won’t need comforting with cuddles in the middle of the night when I am 50. If I carry on like this I won’t have a career left when I am 50, and maybe not even my lover to please.  I don’t want to wait until I am 50. I want to live my life NOW. Cue more tears.

So after dangling the carrot there and baiting me with my potential fate, he finally informed me that I am now a suitable candidate for spinal surgery, and following a new MRI, I should expect several different surgical options to be discussed, as there are two different factors to my back problem, one is neurological (nerve related) and the other is orthopaedic (bone related, or ‘mechanical’ as they refer to it):

1. Discectomy – to remove the prolapsed (sticking out bit) part of the L5/S1 lumbar disc, if it is indeed prolapsed (it could still be ‘chemical pain’ causing the sciatic pain and back spasms, but chemical pain is less likely to cause numbness).

2. Spinal fusion – to stabilise the vertebrae which keeps ‘popping’ in a similar way that a knee with damaged cruciate ligament gives way. He admits he cannot see another alternative to spinal fusion to fix this problem. Except. Oh Hang on! There is! After I questioned why we can get a man on the moon but cannot replace a vertebral lumbar disc, he announces that this can be done, and is being done, and on the NHS. But not at that hospital. He was extraordinarily reluctant to discuss this in detail, only saying it is as risky as spinal fusion in terms of success and complications. But, this is a whole other blog post that will be written.

3. Possibly (probably) both the discectomy and spinal fusion. As the problems with my back are two fold, one is unlikely to fix the other.

So I now need to wait for another MRI, sometime after Christmas, probably 5-6 weeks away, followed by 10 days for the results, plus another 2 weeks for the results to be discussed with neurosurgeon and orthopaedic surgeon. So, despite this progress, it will be another few months before I can even discuss spinal surgery, let alone be put on any kind of waiting list.

And the advice on how to manage my condition until then? Don’t Give Up. This man is wise.

Lost. Series 1 Million.

I have been lost with the direction of my blog for a little while. Coinciding with the whole ‘why do you blog?’ discussion which has generated a lot of thought-provoking posts, and the revelation of how my lumbar disc came to be in such poor shape, I saw myself plummet into a vicious cycle of back pain and puking which I struggled to break. Hovering on the brink of hospitalisation and continued dilemma about whether to take yet more nerve blocking, brain numbing medicine, I have gone through turmoil mentally and physically and found myself with so much I wanted to talk about on my blog, yet struggled with words to write it all down. I think this may a classic case of Writer’s Block, although possibly Writer’s Overload is more accurate. So, I said nothing. I could not even find the words to respond to the great Blog Hops and Memes I have been asked to contribute to.  I have broken the cycle and am back on track, but my blog has been neglected.

What is the point of my blog? Honestly, I am no longer sure. I had wanted it to be an outlet for my thoughts, fears, pain, struggles with parenting. But also to maybe be a place of sanctuary for others who suffer with chronic pain, to reach out and know I am not alone, and to tell others they are not alone. To provide useful information that may help others who are starting to bang their heads against the colossal brick wall that is the medical world, the brick wall of ignorance and confusion that is spinal care. To drink wine and vent my frustrations with this horrendous place I continue to find myself locked within.

Have I achieved any of it? My first response is ‘No’.  But then, thinking about some of the things I want to achieve, actually, yes. I have met with some fabulous people, some who have never experienced chronic pain yet place themselves in my shoes and offer support and encouragement. I have met some brave, courageous people who have been in my shoes and are coming out the other side, and have been willing to share their stories with me and give me hope for my own future. I have gained a huge amount from it.  However, I am not sure that I have offered anything back, I have taken, but not given. And that feels very one-sided. It is not what my purpose was, I know that much.

The purpose now? I need to think. I am Lost. Once I find some order to my thoughts, maybe I can start to write them down again. I am going to write less, and read more.