A Nest. One Viper.

I am in such a bad mood. Frustrated, fed up, cross, angry. GRUMPY. I don’t know if I want to hit something and scream or cry. It’s that kind of grumpiness that makes me want to petulantly shout ‘oh just fuck off’ to anyone who says anything that annoys me. And it’s that type of crossness that means anything annoys me. You see that circle there? It’s vicious alright.

It’s not proportionate to events. It’s actually quite irrational. It’s not PMT, it’s not horrendous chronic pain. It’s pent-up frustration and unspent energy. And little things irritating me that have built up through the day and exploding like a fizzy bottle shaken too much.

I wasn’t in this mood all day. I had spent a lovely morning with my Winter Boy at a softplay centre, where there was a bored looking woman doing music and dancing with the children. And, as it turns out, with me. I have no rhythm any more and I suspect this realisation that I’m no longer able to rock with the toddlers added a teensy bit of Fizz into that bottle.

I had my third Expert Patients Programme session this afternoon. R had initially asked if he could drop me off, I said I needed the car. However, while I was out shaking pompoms and I utilised my fab female skill of multitasking and mentally realised that Summer Girl finished school during this session, unlike for the last 2 sessions over Easter holidays. When I got home I agreed with R that he does in fact need the car. It was not enough that I had bowed down to his greater wisdom. No. He was now cross about having to drive me there, and pick me back up again at 4:30pm. What was he going to do while I was there, with the children? Well, the same thing you had thought of doing when you  first suggested it and it was your idea. For Fuck’s Sake. And that was another dose of fizz added.

I was late. Ok I wasn’t late, I rocked up by the skin of my teeth, but that’s not the point. Because I am on R time, not my time. That means that before we leave, he needs to make himself a cooked lunch. And I am on Winter Boy time, not my time. And this means that before we leave Winter Boy had discarded his trousers and pants never to be seen again. As R drove the car along an alternative route to try it out, which is always great when you are late, another huge dose of fizz was injected into the bottle.

The Expert Patients Programme was good. We finished early at 4:15pm. R was not on his way, he was going to be 20 mins he said. Not sure how he figured he would be picking me up at the normal finish time of 4:30pm and so, with the wind in my hair, and my bones, the fizz started to creep up towards the neck of the clearly small bottle. But as I felt it rising, rising, I made a point of not shaking it, and started to walk. R met me half way.

Now, one thing that had kept me sane all day was the prospect of going swimming. With my new goggles. and my new nose clip. I had even dug out my flip-flops for the poolside and was ultra organised. Everything was packed right down to my razor for the long hot shower afterward, everything apart from my swimming cap. That’s around somewhere right? But, as I walked to meet R, I realised I really fancy some gym time, I need to burn sweat. I have too much energy, it needs to get out. I think about music and yes, that’s what I want! Can’t wait. R has obviously picked up my iPod nano from his locker at work, where it has been living for the last 2 months, as I asked to do so this week, and he went in today for something. The fizz settled a little.

I made tea for the children, and got ready, feeling my unspent frustrations all about to be pounded away at the gym. Couldn’t find socks that match, children had been playing with my goggles and headphones and then I asked The Question. I knew the answer as the words tumbled out of my mouth and I tensed everything up waiting for the bottle to explode as the words ‘oh shit! no sorry’ left R’s lips. I cannot exercise without music. I just can’t. OK, I can, if we are going to be picky about it. But I don’t enjoy it, I can’t pace myself and it goes from being fun to being a huge chore. I spent the next hour trying desperately to download Spotify to my Smartphone, only to find it’s not that fucking smart. So, absolutely devastated, crushed, that my perfect plan fell apart, the fizz quietly spilt out of the bottle as I stopped myself from throwing the phone at the wall.

But, that wasn’t enough to ruin my plans. I would just have to  swim, with my new goggles and new nose clip. But, can I find the FUCKING SWIMMING CAP? And so my evening has actually been ruined. I can’t go swimming now. I’m too cross. The bottle has no more room, and has been shaken violently. I am so fucking cross I am not really sure what to do with myself. And because it’s not entirely rational angst, I can’t deal with it ‘sensibly’.

The best thing to do is quietly take myself off upstairs to engross myself in social media world, but as I am not rude, I tell R I am going upstairs. ‘no you’re not! Dinner is here, if you’re not going out, you got to eat, you didn’t eat lunch’. I’m not hungry, but I might be tempted ‘what is it?’ ‘fish and chips’. FISH AND FUCKING CHIPS? FFS. we had that last night! I don’t want that again. Especially as I made a special tuna with chilli and garlic, home-made chips and salad. I don’t want oven chips, spaghetti and breaded fish. Bleurgh.  And at this point, the only thing that I can do to resolve this situation is to let the fizz outa that goddamm bottle and have a full-blown Proper Strop.

The cork hit the cat, who had tried to nuzzle and suckle and irritate me, after I had stomped up the stairs, and thrown myself onto the bed in a dramatic impression of a teenager not allowed out with her friends past 9pm and so I did petulantly shout ‘oh just fuck off!’ at her.

And I am now nestled in my duvet, fluffed with pillows I still feel poisonous because things didn’t go my way. And I still haven’t got my unspent energy out.

And I’m now fucking hungry.

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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…?

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.