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?

Still Here. Still Love Wine. The Sea. Music. Still Disabled.

I have been absent. I have been in a bad place. A roller coaster ride of attempting recovery from chronic back pain and sliding back into the darkness of chronic back pain. I am not going to talk about details now, although I will at some point.

But, I have had a particularly negative experience at a music festival, which happened as I attempted to live a life that is not really my own, while trying desperately to forget that despite surgery, and rehabilitation, and time, I am probably not going to ‘recover’ from this chronic back pain. As the enormity of how hard it is to do things that ‘normal’ people do hit me like a brick, I was right up close to the appalling discrimination of people with disabilities a way I have not been before. I now know that the reason for this lack of experience has been because I have shut myself away from the real world and not participated in it any more than has been essential to survive, because that world doesn’t really belong to me any more. Except, it does now. I am reclaiming it.

I am going to relive some of this experience with you in my next post, and I will share some of my future experiences as I come across disability discrimination on a daily basis, and yet also find amazing people who try to be our advocates. I will use my time blathering on to do my little bit to help make access, treatment and attitudes to people with disabilities better, nicer, kinder. So that it is not so hard, it’s not so embarrassing and it’s not so fucking difficult to do the things that we used to do. Like go to a music festival.

I am dedicating the future of this blog to my Chronic Back Pain Suffering Mumsnetters who have been my rock in the last couple of years, in the last year in particular. They have picked me up when I’ve been on the floor. They have cheered me up when I have been unhappy. They understand when no-one else does. They have shared their own experiences. They have held my hand when I have been unable to cope. with the relentlessness of this fucking chronic back pain.

They also love Frank Turner, internet shopping and Fly London boots.

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…?

Having a Disability at Work. I Refuse to Give In.

It was a very cold crisp day, a Wednesday, at Dartmouth Zoo. As R dropped me off in the disabled parking area, I was met with the sound of African Beats. It was very early for such loud music but welcomed the entrancing sounds as I shuffled into the visitors area and stood in the long queue waiting for coffee.

I felt out of place. I felt like I didn’t know anyone, felt exposed and my (what I am now recognising as a) disability advertised as if I was shouting it out through a megaphone, people glancing in my direction as I stood in discomfort for what seemed like hours.

This was my work conference. I had been back at work for two days after a 6 week absence. I already felt alienated as I had been off so long, but I had been determined to return. 6 weeks is too long and the lack of enthusiasm, excitement or pleasure to see me demonstrated that my relationship with colleagues had shifted from me being an equal member of the team to a resource burden. And, as I stood there sandwiched between two managers and the Big Boss from out of area, I felt more alien to the group of people than I had ever felt.

I wanted to cry. I wanted to ask R to come back and take me home. I knew then that I was not ready to be back at work. Every step I took continued to shout out that I was in pain and I was met with looks of pity and sympathy, but very little actual words. People have stopped knowing what to say.

I stupidly didn’t take my crutch and regretted that almost immediately. I am not sure I know fully know why yet, but it is more than a physical crutch. It gives me a silent explanation of the pain pain on my face, it makes my hobbling and ginger steps less obvious.

Later, as I sat to eat a hastily warmed through chilli as my colleagues didn’t expect me to turn up so didn’t book me any lunch, a colleague who was sat at the front of the conference noted that he saw me walking very carefully and painfully to the toilet halfway through the conference, and what that told me was – if he saw, then everyone else saw – and not for the first time I felt like crying.

As the conference ended, I found myself walking downhill towards the work bus that would be taking me back home, my lift from the morning not available. I found myself walking slowly, alone down that hill as people rushed past me, in twos or threes. I moved to one side as more than one car full of my colleagues drove past me down the long uneven walk, not stopping to offer me a lift to the bus. And I realised that things won’t ever be the same at work again. I sat next to a colleague in silence on the way home for 20 minutes as for the final time that day I held back tears realising yet again that Equality Acts cannot make people treat others fairly.

I didn’t go to work this week. Following that horrendous experience of pain, ignorance, alienation and hostility as the Resource Burden, I realised that I simply cannot cope with being in that much pain and yet still show I am worth the wage I am being paid. I realised I cannot work while my pain is so obvious people literally cross the road from me at work.

It was with trepidation that I made the call to the GP to ask for my Drop In The Ocean dose of pregabalin, which I started weeks ago but have been to afraid to increase, be raised from 25mg to 50mg. I have kicked against the ‘zombie drug’ for such a long time as I cannot bear the feeling of sleepiness, of tongue tie and head clouds, of my eyes drooping, my appetite dropping and my energy being zapped.

But, nor can I work under the circumstances that I found myself in last week, where I felt embarrassed every time I stood up and had to walk, where my role has been pretty much decimated. Quitting work is not an option, not least because I need the money, but also because I have worked so hard to have a career which has already been thwarted and slowed down by becoming a mother. I am not prepared to allow the ignorance and resentments of others to stop me from doing my job. So I have to make sure I can do my job as well as I possibly can, and be at work for as much as I possibly can.

And that means losing a little bit of me to medication.

Thankful Thursday: At Least I Can Walk

I can walk, despite my pain being quite high today. My left leg, from buttock to hip to calf, ankle and foot is a combination of ‘on fire’ a cracking snapping pain, a deep hard pain, pins and needles, numbness and tingling. All at once. My back, which has improved is now hurting again, and I have upped my tramadol dose despite having cut down to 50mg per day. It’s not doing a huge amount for the pain.

I have been to town with my friend, and tried to walk the pain off. And although it made it worse,  I have seen people in wheelchairs, and a person with a leg missing, several people struggling on crutches. I am reminding myself today that despite my pain and feeling sorry for myself, it is all relative and there are so many people worse off than me.

I am lucky that I am able to walk, that I can move independently, even if it is slow and laborious it is still movement that is my own. I have all my limbs and they are all working, even if not all correctly. I need to stop looking back at what I did have, and concentrate on what I have right now.

So today I am thankful that I can walk. As this is more than many people can do.

Too Much Information

I was going to write an informative post about what I am learning relating to employment and back problems – being recognised as having a disability at work, employment rights and the Equality Act. Seeing as I am returning to work tomorrow I felt it was an apt topic.

However, this evening, as I rocked out to Ozzfest on Guitar Hero, I felt hot and sweaty and not because I Rock. The indigestion that has plagued me all day finally got the better of me – almost immediately after I chewed two generic brand chalky tablets to alleviate it, I threw up that and the chocolate I ate after our woodland walk.

Yesterday morning I also threw up, after eating two small delicious Rachel’s Organic Yoghurt pots. Again, indigestion, followed quite quickly by me saying hello to God through the great white telephone and that time I had a lot to say to him.

Now the next bit is Too Much Information. On both occasions there were lots and lots of very small dark brown/black spots in my vomit, and I suspect it is blood. It is often described as looking like coffee grounds, but this is not entirely accurate – mine looked rather like toast flakes. And actually I have been sick a few times over the last few weeks and I always have had dark bits of toast in it, which did make me raise my eyes slightly, but as I had actually eaten toast, it seemed logical that if it looked like toast, maybe it was in fact toast. Which would be a great explanation for these flakes, except I have not eaten toast all weekend.

R is not too concerned, took it as an excuse to tell me I am not eating properly, I checked on the NHS direct online and their survey said ‘straight to A&E’. Sod That. They say that to everything. ‘The Witches’ as R refers to them, they said call Out of Hours but they also said it could also be the Omeprazol turning brown in my stomach. So that is what I have decided it is, as I don’t want to go to hospital tonight only to be sent home, nor do I want to call OOH who will tell me to go see them at the hospital, and then send me home. I am seeing me good friend the GP tomorrow anyway and discuss it then.

It is what I have been half expecting having taken the NSAID Diclofenac daily since christmas, and only being put on the acid reducing Omeprazol in the last couple of months. In theory I am aware of the potential risks of taking long-term Diclofenac as it increases the production of acid in the stomach and therefore increases the risk of burning through the stomach lining, causing a stomach bleed or an ulcer. But in practice it slips my mind and I have to be honest and say I sometimes forget to take the Omeprazol. Also, due to my reduced appetite I sometimes skip breakfast which I know is a Bad Habit and makes this entire thing my Own Stupid Fault.

I know I should be more concerned than I appear to be. But, I guess there has been so much going on and so much ignored I am sceptical about putting my health in the hands of the professionals just to be sent packing yet again. And, if this is blood and if it is caused by the Diclofenac, I will probably have to come off all NSAIDS for good. Then I will be Actually Screwed. I threw up all my meds yesterday morning, and by the afternoon I started to get a stiff back and pain in my back and legs. I tried coming of Diclofenac a while ago as I don’t want to take them due to all the long-term risks, and clearly whatever is Going On Inside has not gone away as without them I cannot stand straight due to the inflammation causing back pain and sciatic pain in abundance. I guess my enthusiasm for the anti-inflammatory diet might be re-ignited very soon.

Right now I am in much less pain with my prolapsed and torn lumbar disc than I have been for a long time, yet unfortunately the side affects bring their own issues such as this, me walking into things, constant tiredness, loss of appetite. I would like to just go back to normal now please. No drugs. No pain. Just me. Thanks.