“12 Ways to Cope with Chronic Pain and Depression”

I often assert, when the question of depression and chronic pain come up, that I am not depressed; that if my pain was to disappear tomorrow I would be happy and all would be good in the world again. Perhaps a year or two ago that might have been true (or perhaps not). But as time has gone on and the effects of chronic pain on my entire life, including my emotional wellbeing, has taken its toll, I am slowly considering that perhaps it’s no longer just chronic pain and the direct effects it has on my ability to live my life how I want that gets me down. Maybe, my psychological state has been actually altered as a result of pain and lack of movement, medication side effects, and huge drops in taking part in those things that have historically provided me with the chemicals and hormones that make us feel happy and content; that if my pain did go away tomorrow I may still need to work on my emotional health a bit longer.

Now, I am still not saying that I am depressed. That’s a hard thing to admit to. But, I will admit that my emotional health needs some TLC. Ploughing through pretending it’s all going to sort itself out someone is not an answer any more, and my emotional health has taken some battering. I do reach for ways to improve my mood and help me feel better about myself.  I will tentatively do things to try to help, then throw my toys out of the pram reminding myself this is all down to pain and if I sort that out, I won’t be depressed, so I need to work on getting better. 

I’ve just read a great blog from Arthritis Health, called “12 Ways to Cope with Chronic Pain and Depression”. I guess I like it because, whether I am, or am not depressed as a result of my chronic pain, whether I accept I am depressed or don’t accept it, it has helped to remind me that changing holistic aspects of my life for the better will only benefit me. It will benefit anyone else suffering from chronic pain who might, or might not be depressed as a result, or for other reasons. 

We need to take care of our emotional health, whether or not we suffer from chronic pain; more if we have chronic pain, as our psychological self has a continual pounding as well as our physical self. I am going to work a little more on addressing my mental health needs, so that if I am depressed, I can move out of that space. And if I am not depressed, it will till help me to build my feel-good vibes, which will in turn help me manage my chronic pain.

For those that don’t like hovering – here’s the link to the article:

http://www.arthritis-health.com/living-arthritis/managing-depression/12-ways-cope-chronic-pain-and-depression

A Nice Story about The National Trust and Disability.

For a while, back pain and poor mobility meant I almost become a recluse, venturing out when I had to. Then I decided that back pain and disability was not going to win; I am not going to stop living, I would just have to do things a bit differently. Some experiences have been shockingly negative. But some experiences while reclaiming my life as a person with chronic pain and disability have been uplifting.

I’m a member of the National Trust, have been for a while, ever since they put their Wembury Beach car-park fees up to £4.50; a single membership was cheaper than paying each time I kayaked and bodyboarded there. Then I had children and it was an invaluable way of getting out for fresh air in lovely locations. And now, my membership gets me out with family and friends when I might otherwise hide at home avoiding crowd and difficult situations.

There are some fabulous National Trust properties and gardens around the South West – Saltram House in Plymouth, Cotehele, just into Cornwall off the River Tamar, and my favourite Lanhydrock, further into Cornwall near St Austell.  National Trust have an inclusive attitude to disability – where possible, bearing in mind many of their properties are in old houses where lifts can’t be installed, or with rocky steps leading to hidden gardens that would be ruined with ramps put in. Although some places within their properties remain out of bounds, every location has as much access as they can put in without destroying the historic places themselves.

At Lanhydrock particularly, I hold the staff in high regard after one key visit. I couldn’t walk more than a few feet without stopping, had two children, two crutches and my mother-in-law with me. Immediately, the door to the little octagonal admissions hut was opened for me (possibly also for Mother-in-Law before she charged off; a spritely 80 something year old with a healthier back than me).  Carers go in free, so I have single adult family membership and R or a friend comes with me.  Without having to provide evidence of my disability, we were guided to the Golf Buggy that was to drive us the long walk to the house and gardens. This discretion was refreshing, having experienced other places where not much short of providing a full medical examination outlining the nature and extent of disability will allow a carer to freely accompany you watching your family go on rides that you can only look longingly at (Legoland – click on the link and view the section ‘Accepted Forms of Proof’ if you think I’m joking there).

The driver carefully helped me onto the Buggy and let Summer Girl sit in the front seat; took the bags from my mother-in-law, and told me to call from the restaurant when I was ready to come back. He would collect me before the main stop outside the grounds. Impressed so far? There’s more.

The house has a few floors, some of which are not accessible for disabled people (to be honest, I can’t say I missed much, I am not a huge history fan, love the gardens but it occupies the children for an hour). There’s a lift available (if you’re not afraid of small confined spaces) to some of the floors, hidden away and powered by what felt like small children and only available for disabled people. I was shown this with a smile, told how best to see the house with a disability, and a volunteer offered to help me up the stairs of the last section if I wanted to view it. I told you there was more, but keep going!

The children tried on top hats, searched the house for wooden mice so they could get a badge with a hedgehog on it, and pretended to cook in the vast kitchen. Halfway through, i crashed on the comfy sofas and rested while mother-in-law finished the rest of the house with the children, before heading back out for ice-cream and coffee and a hobble around the gardens. Plenty of benches to sit on and take in the beauty.

On the way back on the driver picked me up first as promised, dropped everyone else at the admissions hut and told me and another person to stay put. He then drove us a further 5-10 minute walk straight to our cars. I was so, so grateful, I hurt so much and literally couldn’t walk another step. I was dreading that walk and he must have read my mind. Amazing huh?!

I love that most of the National Trust staff seem genuinely family and disability friendly, not just because they have to be, but because they care about their work, their countryside and want everyone to share it. Ok, let’s not lie, there is always going to be the odd person having a bad day right? I can cope with that.

I’ve spent three days in the last two weeks at Saltram House; Winter Boy and Summer Girl playing croquet and badminton on the lawn with friends while I sat on a deck chair and drank coffee from a fancy tea-cup. Not a bad way to reclaim my life back.

Camping is Good for The Soul.

IMG_6563I’m not always moaning and complaining about back pain. Sometimes. I have fun. This summer I had fun camping. Lots actually. CAMPING?! yep, that’s right. It’s potentially the worst thing to do if you have a bad back. But, it’s absolutely the best thing to do if you live in the South West, if you have children, and if you have friends with children.

I love camping and I will never give it up. I have lost so much of the fun in my life over the last few years; can’t bodyboard, kayak (well I can, but it means so much more hassle than I can bear), run, dance (ok, I never could do that), just living and being the person I used to be, but I won’t stop doing this.

I don’t feel so disabled when I am camping, and this is why: Friends. And R. And the children. But mostly R and friends. When we go camping, we all muck in, everyone helps each other. Someone has normally forgotten something, another normally has a spare. We work things out, we lend a hand without being asked. We share beer, burgers, music and laughter.

R and I have a Golden Rule. We must, absolutely always have a bottle or two of Good Beer while we pitch our SoulPad Bell tent. My job nowadays is a supervisory role, directing where the doorway needs to go, barking orders about the distance of the pegs from the groundsheet, reminding R for the umpteenth time that the front guy ropes need to be placed first to get it hanging right, getting more beer.

We often get to our pitch first, closely followed by another of our party, one of whom grabs a beer, the other grabs a mallet, job done and we move on to the next tent.IMG_1804

This leaves me to do what I do best. I pretty it up. I have swathes, bunting, fairy lights, hippy throws, lanterns, tea lights, hanging hearts. At the last camp we had chinese style lanterns, a coffee table and rug, and a large plant at the entrance to our ‘front room’. Ok, so that was not a planned piece of decor, a friend, M, got it from the plant sale at the site we stayed in, but what a magnificent touch! That’s going to be a new feature for camping. Plants. It hurts to do the prettifying you know, bending, kneeling, twisting, but so worth it, to look at the finished effects with a beer in hand, then tweaking, and moving. There are no shoes in the tent. There is no bouncing, no swinging on the middle pole like pole dancers; not R, he’s never been good at pole dancing. There is also no food, no fizzy drinks, no pens. And, as you can probably guess when there are 8 children ranging from 3 to 11, that these rules absolutely get obeyed. Never. We used the puncture repair kit on our last trip, when typically, my side deflated.

IMG_7027While the tent is going up, the children are gone. To the nearest park, tree, flat ground for scooting/bike riding, popping back for snacks and drinks; And once the tents are in situ, the adults drink tea, or beer, cook food, play guitar, sing songs. We see the children occasionally for snacks, drinks, the odd minor scrape, but rarely until it’s time to eat.

I take lots of painkillers when I camp, I ramp them up. Because, while its fabulous, it does still hurt, but it’s manageable with opiates, naproxen and diazepam. And lots of preparation. and a good mattress.

I help however I am able, which tends to involve removing rubbish from around the place, sorting out recycling and keeping the place looking tidy. But, there is no pressure to be or do anything particular, I am not messing anyone’s fun if I sit down or go and lay down in the tent. I am not getting in the way, and I am not being ‘looked after’ if I need some help doing something. Except I am, I just appreciate the subtlety.

Trewan Hall Campsite in Cornwall is beautiful, and is disabled friendly. They kept a pitch free for me when we visited, near facilities, shops, on flat ground, and their site is largely wheelchair accessible for those who need this. I celebrated my birthday there this year and we returned for our last camp of the summer. It’s peaceful, with magnificent grounds, walks if you can manage them, a fabulous pool with a diving board, much to Summer Girl’s delight (a Lido with a removable dome for bad weather).  It’s close to Padstow for spectacular fish and chips, and some of the best beaches in Cornwall.

So, as you see. People with back pain can have fun camping, as long as you have the essential ingredients of friends, beer, music and good food. And did I mention a good mattress?

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.

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…?

How Do You Burn Energy When You Are in Pain? A Sharing Blog

I know what my problem is. Why I am not settled with this back pain business. I am not using any energy. No running. No swimming. No kayaking. No jumping up and down with the children, dancing around the front room. I have TOO MUCH ENERGY!

What the hell am I meant to do with it all? I really, really want to burn some calories, I want to exercise until it hurts, to sweat with expelled energy. I want to run in the rain, through the industrial estate near where I live and to the harbour, across the lock and to the sea while listening to Bruce Springsteen’s Born To Run.

People keep telling me that I have to learn to do ‘hew hobbies’, find things I can do from an armchair, and yes, I do. But, what about my energy?! what do I do with it?

It’s just dawned on me like a huge smack in the face that much of my emotional wellbeing issues are lack of physical exertion. Normally I do nothing slowly, I get up late for work, run around like a headless chicken and at work on time. I run up and down stairs (we have a lot of them) in and out of the house, I bounce and charge everywhere, every second of the day. I clean my teeth while brushing my hair and pulling on my socks, I talk fast, think fast, DO fast.

And now. Stopped. Dead. In it’s tracks. Everything is so Slow now. Getting dressed, moving up and down stairs, getting up and down from my sofa. And yes I am trying to do reverse crunches (reverse sit-ups, fab for 6-pack!) but they are not exactly calorie crunching are they?

So, Tell me, what do you with your unspent energy when you are in pain, or unable to do the things you normally do for other reasons? Give me your top tips for getting rid of this overwhelming desire to just take shit ton of drugs and run, and I will write a blog with all your suggestions.

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.