“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

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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.

Dr Google Says I am Probably Dead Already.

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How many people with chronic back pain also have generalised  systemic pain? I do. How many of you have diagnosis for those aches and pains that has a different cause than injury or Degenerative Disc Disease? I don’t yet.

I have many aches and pains that appear to come hand in hand with chronic pain. I’ve diagnosed myself with so many conditions I Dr Google even suggests I should probably be dead by now. I don’t want to be ‘sick’. That’s not the reason for my searching.  I want a reason for being in all-over pain. I don’t want to think it’s just back pain causing it all. Because, if that’s true, it really does fucking suck.It goes without saying that my back pain is ever present. To greater and lesser degrees of intensity but a constant nevertheless.  Sometimes though, I also have whole body pain. When this happens my hands hurt; my feet hurt; my blood hurts; I feel nauseous, often I vomit. I am exhausted. Like the flu but without getting the flu. I have flare-ups of skin problems: little blister-like spots on my face; bigger ones on my ears, and on my feet. Often, a ‘flare-up’ of these symptoms would indicate a massive flare-up of back pain. In fact, in the first couple of years I could predict a flare-up of back pain by my blood hurting in my hands, feeling sick and throwing up. Now often I get these symptoms without an increase in back pain, possibly as back pain is already quite high.

Needless to say I have spent a long time trying to figure out what this might mean and how it links with my lower back problems. I have some theories, of course I do! So does my GP, and others around me.

  1. It’s intervertebral disc leakage from a tear in the disc; leaking into my bloodstream and nerves, my body reacting to the toxic gunk that comes out. The problem with this theory is that since my discectomy in June 2013, as far as I know any tears are no longer there. I personally loved this theory of mine (no evidence to back it up!). healthcare professionals didn’t have much to say about it.
  2. These flare-ups are bugs: a common cold, a virus, etc. This is my GP’s favourite theory. It goes like this:  ‘Normal’ people get colds. But Degenerative Disc Disease means I have chronic inflammation in my lumbar spine, so for example it’s at ’50’ where people without chronic inflammation have markers at 0. When people/I get a common cold, normal inflammation rises to 50, but my spinal inflammation rises to 100. Thus increasing the already present inflammation and causing even more pain. And all the other symptoms are what other people with bugs would get, but i don’t feel it as quickly/quite the same until I am proper sick, due to it all being masked by pain medication and anti inflammatory medication. It also means that I don’t respond as ‘normal’ people do when I am sick, i.e. resting, more fluids, etc, because I don’t realise I am unwell.  Then I get rundown and this causes skin infections etc. Possible. It’s probably the most plausible. But, I get these ‘bugs’ an awful lot.
  3. I have Ankylosing Spondylitis or some other Inflammatory Arthritis. I return to this one occasionally as I keep going ‘oh! I have that!’ to various symptoms etc. I’ve not specifically mentioned it to my GP but have asked if I could have inflammatory issues of some kind and he pretty much laughed. No. He doesn’t think I have any of the symptoms, but did a CRP test to shut me up. And it was ‘normal’. Although, I was not mid flare when blood was taken and he didn’t do an ESR test. Strangely though, this week, I saw a locum GP and the first thing she said was ‘have you been tested for Ankylosing Spondylitis? Do you have a family history of this?’. Then she ruled it out, saying that the surgeons would have looked for and ruled it out before surgery. Not sure if she means they would specifically rule it out or if it would have been visible on MRI. Either way,  this theory is certainly not taken seriously by my GP. Research suggests that trauma or other environmental factors can ‘trigger’ Inflammatory arthritis in those who may be pre-disposed to it, so it’s still a reserve theory.
  4. I have something wrong that is nothing to do with my back pain (like a thyroid problem), and it’s a red herring, because it’s easier, and cheaper to blame one thing and treat that, than try to find another piece of the puzzle among thousands of possible pieces.
  5. It’s a reaction to my medication. This is the overall healthcare professional’s favourite! Despite having no correlation to the dose or type of medication being changed, and flare-ups occurring when not on medication. It is, in my honest opinion, Bullshit. And as above, easy and cheap.
  6. There is nothing actually wrong with me. It’s all in my head, and I am what is medically termed a Hypochondriac. I would like to think not, as I ignore most things until I have to mention them to the GP when too much to bear. But, this does mean I go with lists as I wait, wait, wait, and then take all my (individually minor to him) problems there at once. So, I may either be one, or the GP thinks I am one.

If you have any theories to add, or any ideas on the theories I have aired about what might cause my chronic pain other than back pain, drop me a line, or link me to more blogs/websites. I’ll try to revisit these theories from time to time.

Chronic Pain Makes Me Tired: A Weekend in the Countryside.

I could write so much about my weekend, which was spent mostly outdoors. Yesterday on Porthcothan Beach in Cornwall (didn’t even make it to paddle in the sea, it was a loooong way off) and today at a Mary Budding Trust charity country manor walk. But I’m so tired, from the relentless pain that only increases by doing things I love, that I threw up this evening waiting for dinner.

Now I am in bed waaaaay past my bedtime, hurting too much to sleep, and too tired to write; needing more painkillers but with no energy to get back up to fetch them, or to locate my mobile phone – that I had thrown somewhere on the end of the bed some other time when i had no energy to put it on my bedside table – to call R and ask if he can get some for me. It’s is why I have abandoned this blog for so long; I just cannot get as far as opening it let alone posting the million thoughts that race through my brain, waking me at 4am.

That’s what chronic pain does; it wipes my energy levels so that there’s nothing left. Everything I do has to be planned. And everything I do has payback, physically and mentally. As I write this, I’m happy that I have managed to have an active weekend, with the enormous help from close friends and R to enable me to do so, and worried about the consequences of having a life this weekend affecting my week at work.

My eyes are drooping. My head hurts. I am going to make that call to R so that might actually get some sleep…

It’s Been a While: Had a Laminectomy!

Wow. A long time. But, still many people reading since I have abandoned you. Sorry about that.

You see. I had big plans when I last posted. I was going to be an advocate for music festivals as a disabled person. I was going to out those who made it harder for disabled people to access music, and highlight those who helped and supported them. I was going to continue camping, endlessly, tirelessly refusing to give in to the pain and discomfort.

But, it didn’t happen. It was too ambitious. Because actually, as much as i loved it, my back pain and mobility deteriorated and I sort of stopped living. For a little while. I buried my head in the sand, again, about the longevity of what I know for sure now is degenerative disc disease and arthritis of the facet joints in my lumbar spine. And really, I am just not brave enough or strong enough or able to pretend my back pain is not there enough to be able to go to festivals as I would like no matter how fabulous the event organisers are. I attempted camping once this year, but due to a combination of shocking weather, mobility issues and air mattresses that keep deflating on me, it’s on the back burner. We might try once again. Hmm.

I think during my last rant or two I might have mentioned that I was waiting for an appointment to see a highly reputable Neurosurgeon at the National Hospital of Neurology and Neurosurgery. Well it did. I saw him, he was direct, honest, kind, and if I might say so, rather handsome to boot. He informed me that I have lumbar spinal stenosis due to the facet joints being little fuckers at TWO levels (it’s getting higher) – L4/L5 vertebra and L5/S1 vertebra. If you remember, my original problem was L5/S1 vertebra and was told I had a perfect spine if not for that injury. Well, that was bollocks! So, basically, along with a broad based disc bulge at L4/L5, and a thickened Ligamentum Flavem, which was helpfully pressing on the spinal cord, I had bone spurs growing into the channel where the sciatic nerve exits the spinal cord.

I had a laminectomy and decompression on the right side of L4/L5 and L5/S1 vertebra in January 2015 at NHNN, with the expectation of up to 50% overall pain relief, i.e. attempting to completely free the nerve and ease my sciatic pain, but not really being able to do much for the back pain without fusing my spine, which was given a 60/40 success rate so was dismissed for now. Initially the results were fabulous after the minor blip of a CSF leak; I could stand straighter, I could walk without a stumbling shuffling gait, I was able to walk without my lovely orange and black crutch for short walks on flat surfaces, and I felt I had, finally, turned a corner.

But no! Of course not! My pain levels went up, up up. My mood levels went down, down, down. I struggled with leg pain, back lock, constant muscle spasms from the base of my spine to my neck. I had trigger point injections which helped a lot (and four months later I am waiting for my 8 weeks review to see how these went) but wore off too quickly, I had acupuncture, which worked wonders for several days then back to epic spasms. Pain Clnic doctor and physiotherapist have both said I am impatient, have lots of muscle wastage, and to give it time, much, much more time, patience, effort. All of which I have been doing. I have slowed down as asked, but not stopped, and tried hard to be positive.

But it’s been 8 months since my laminectomy and decompression. 8 months of moving, walking (trying to get some distance but not happening), physio and i continue to struggle with standing for too long, walking, pretty much at all, and sitting for more than a few minutes. And now I am mostly back at the stuck bent over stage. I’ll take a photo of the  ‘old woman hunched over with a walking stick’ sign at Wembury Beach toilets to show you what I look like.

Books are for People, Not for Genders.

Winter Boy is just learning to read. He loves Thomas the Tank Engine. I thought he would have grown out of this almost 4 year long phase by now, but he loves is as much now as he did when he got his first Take and Play train. When it comes to books, he’s pretty clear about his interests. If it’s about Thomas the Tank Engine he will try to read it, stick it, colour it, press buttons on it. Although, i will give him his due, he is just starting to read actual words in books, and he eagerly reads whatever books he has from school, and he will attempt to read the words on anything that happens to be lying around.

Even bedtime is Thomas related if he has his own way. We try to break it up, for our sake as much as anything, as reading about a Really Useful Smug Engine can get quite annoying. Outside of the Land of Sodor, Winter Boy has no preference for ‘boy’ stories or ‘girl’ stories, whatever is easily reachable tends to suffice.

Summer Girl has gone through a (big) phase of insisting on ‘girl’ books. Glittery, princesses, fairies in tutus and pink sparkle everywhere; it has adorned her bookshelves since she has been able to read herself and be in charge of the book choosing. She has insisted on having the Rainbow Magic books, which are, in my opinion, dull, badly written and without imagination. However, in the spirit of wanting to encourage her to read, read, read, and not restrict or discourage her, I bought her a box set of 15 from the Book People, to place along with the classics on her bookshelf – Enid Blyton’s through to the complete Roald Dahl collection, and my absolute Favourite Book ever as a child – The Secret Garden by Frances Hodgson Burnett.

I am unashamedly delighted that she has tried and failed to get to the end of a single one of the Rainbow Magic books, which are deliberately targeted at ‘girls’; the covers are marketed for girls – pink and sparkle and fairies, the fairies in all books are girls, the main characters are girls and beyond the lure of maybe finding your own name it has very little substance. Not surprisingly, she has quickly become bored and has even forgotten which ones she’s started reading.

Summer Girl has on occasions been drawn into the ‘boy/girl’ advertising, struggling to have the courage and strength to choose what she would like. She is only 8 so I wouldn’t expect her to have those skills yet. Instead she has been guided by the glittery lights and pinkness of the bookshops, posters and book covers around her, and by what her friends are reading. She once stopped in her tracks when I suggested she bought a dinosaur sicker book, (having watched her delightfully help her brother do his) and hesitate, before reaching for the Fashion Dressing Up sticker book, again.

I have tried to not dictate to her what she can and can’t read, stick, colour, draw. But R and I have encouraged her to think about what she likes, have the confidence to look beyond the dazzle of pink and flowery, and to read all the things around her that might interest her. Conversations about it being ok to enjoy science, have ribbons in her hair, play with her dolls and playing football have included book reading and it’s starting to sink in.

Last month we all went to London. She dragged me, literally, into an antique bookshop and browsed the dusty old books, and marvelled at them with wonder, while Winter Boy sat himself on the floor, flicking through the solitary small ‘new book’ box tucked in a corner, reading (you guessed it) Thomas. Bella picked a book; 105 years and one day old, from the day it had been inscribed with a message to its first owner. The cover is dark green, with no pictures, with real typed pages. No sparkle, no pink. ‘please? can I have it?’ So i bought her Tom Brown’s School Days. It’s her prized possession, although she is waiting for the Secret Garden to be finished so we can read it together.

If she didn’t have the courage to ignore the mass advertising and inevitable impact on her peers, she would have been denied this experience of choosing a book that has inspired people for years. She wouldn’t be able to enjoy all books to escape on the many journeys they can take us; she would miss out on so much.

Luckily, she is learning that its ok to read what she wants. which, at the moment is everything she can get hold of. But this hasn’t happened with the help of bookshops and publishers, who continually thrust in her face that she, as a girl, shouldn’t be reading Star Wars magazines, but should be reading magazines about make-up and jewellery; she can do those things, but as well as, not instead of. Although if you asked her directly she would probably still chose the make-up magazines if I didn’t heavily encourage her to get something (anything) else.

I will continue to encourage her to push through the constant barriers set around her to define her femininity as one-dimensional. I will continue to encourage her to be anything, and everything she wants to be; to read anything and everything she wants to read.

I shall also encourage Winter Boy to do the same, But, I won’t be encouraging him to read the Rainbow Magic books; not because i don’t want him to read ‘girl’ books, but because they are shit.