“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.

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.

Degenerative Disc Disease, Do you have it? (and Other Ramblings)

As a consequence of sitting for too long at my work writing an urgent report before 1pm, then driving like the wind across town to sit for too long on small school chairs for Winter Boy’s First Ever Harvest Festival Play and Summer Girl’s First Ever Speaking Part in her Harvest Festival Play (they were both amazing and brought tears to my eyes, so proud), then driving like the wind across town again to swimming lessons, then again across town via collecting R at work, and finally back home, I am Really Fucking Sore.

My back is in spasm and my entire spine is locked from lumbar to cervical. I can’t bend well, can’t sit well, can’t stand well. So, I am writing this while waiting for the trusted muscle relaxing ‘Friend‘ to do its magic. I may do the written equivalent of slurring towards the end of my post.

I had some not so great news this week at the pain clinic. The pain that I have been experiencing in my back and sciatica down my legs, and which is getting worse, is, partly the re-prolapsed L5/S1 disc, which I already knew, but mostly coming from Vertebral End Plate oedema at the same level, where there is inflammation and damage, which I believe is Degenerative Disc Disease. And thus we have come around full circle since the beginning of my blog, where I had initially had explained that my condition was DDD, then ruled out.

I have read a bit about Degenerative Disc Disease, and end plate damage, and it’s not the most mood lifting read in the world. The pain clinic answered my questions about what the future will mean due to this end plate inflammation,  with as much of a positive spin as he could, smiley faced while telling me that “yes it will get worse”, “no there is nothing that will fix it, fusion won’t help” and “you may experience increase in pain” “but we can manage this can’t we Wine?!” “stay optimist Wine!” “you are a determined woman Wine, a fighter, keep that going and you’ll be fine!” “don’t feed the pain, don’t fuel it with too much thought” etc, etc.

If anyone has experiences of end-plate oedema and degenerative disc disease, do get in touch with your advice, and links to information, and how you cope with it.

I’ve also had a blood test to rule out a spine infection due to localised large swelling in my spine at L5/S1 level (right between my Venus Dimples), painful blood/flu feeling (which I have blogged a little about before a year or two ago now), increased feeling of unwellness during a flare-up. Don’t think much will come of it, as he took the bloods after the main flare up. Also I read on Dr Google that low-grade infections don’t show in normal blood tests. But we’ll see what happens.

I have been reading some interesting articles on the Spine Health website, get sent links via Twitter and Facebook, and so I thought I you might want to read the most recent one I have been reading called Chronic Pain on the Brain – as the title suggest, it looks at the potential impact of chronic pain on the physical structures of our brains.

Sleeping with Darth Vader and Emmet. It’s Wrong.

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I am writing while sandwiched between two sleeping children, two Lego alarm clocks and a glass of Weak Lemon Squash that I can’t reach. On a Saturday night. The rock and roll lifestyle is to be envied across the world. I am hoping that I don’t need to take a pee anytime soon as the process of clambering over them fills me with dread as my back is not in a great shape today.

We have been watching the Lego Movie in bed. To celebrate their new Lego Alarm Clocks – Winter Boy has Emmet and Summer Girl has Darth Vader. The purchase of said alarm clocks was to install a sense of time in them and not wake me by pretending to be invisible, crawling through the slightly open door and along the bedroom floor, while almost silently giggling. At 6am. On a Saturday.  The message was clear. The alarm clocks will go off at 7:30am tomorrow. They are not to leave their room apart from to use the loo, if they really absolutely have to. They are not to play music, musical instruments, whistles, sing, laugh loudly, go into the kitchen and try to make me breakfast, put the tv on. They can play with their Lego, tidy their bedroom up (they actually laughed at that one), read to themselves, read to each other. And most importantly, in the ‘not to leave the room’ bit they absolutely must not Wake Me Up.

The irony is not lost on me. They have carried these alarm clocks everywhere today. Winter Boy in particular has not let his out of his mitts. Except now, as they snore (not so) gently next to me, their alarms are still set for 7:30am but by my head, one on each side. And I can’t move the sleeping babes as I can barely stand straight. I forgot R was away tonight, so his usual putting of them to bed when he comes home is not happening. They are staying put until 6am. Instead of in their own beds, until 7:30am with me in my kingsized bed All On My Own.

Bollocks.

I might sleep on the sofa.

I Want To Dance.

I’ve recently been to the On Blackheath festival. The line-up for OnBlackheath looked good; Frank Turner and The Sleeping Souls, Imelda May, Athlete, The Levellers and more.  I grew up in SE London and have fond memories of Blackheath so it was exciting to ‘come home’.

This festival is not like other music events I have been to. A Middle Class festival with no camping,  food demonstrations galore and sponsored by Johnnie Lou. Full of middle class, middle aged people, but no-one wearing flowers in their hair or peacock feathers. Except us. R with his festival hat (and those peacock feathers); Summer Girl with that flower garland on her hair; winter boy with a black ribbon-adorned hat. We did see Champagne bars and exclusive areas with fabulous seating and palm trees and no queues for drinks; but only if you were a Johnny Lou member.

For those ticket holders who were not privileged enough to quaff cocktails while laying back on recliners, the floor with a picnic blanket had to suffice. Or standing. Or fighting with other peasants for space on the Rare as Rocking Horse Shit picnic benches, sandwiched between 3 distinctly different, yet equal in noise level, music stages.

I’ll repeat that, in case it passed you by.

Sitting on the floor. No camping chairs allowed. Did they think more damage could be done by drunk Londoners with Go Camping chairs than by a crutch belonging to a pissed off disabled woman? ‘Where did they think people with mobility issues are going sit?

Or standing. Which is mostly what I actually did. I lent on my crutch, walked a bit, sat on a child’s bench watching entertainers do street theatre, but mostly, I stood. Until, during Massive Attack, a large, heavy, drunk man crashed full speed into me. Pain seared down my legs, fear rose, and anger and upset that had been bubbling away all day, along with two tired children, had me hobbling back to the hotel less than halfway through the set.

Surely Disabled Access Platforms are now commonplace at music events? Well, there was one at On Blackheath. It was empty, carefully monitored by two security guards. In case the crutch wielding disabled woman tried to get in. Access denied. We had no wristbands. We were sent on a wild goose chase around the festival site, seeking that person with the Golden Access Wristbands and after missing some excellent bands playing to trying and failing to find someone in the know, I gave up and we stood.

Sunday was different. Frank Turner and The Sleeping Souls were playing. How could it be anything but fabulous? I decided to not stress about disabled access and enjoy my day, so helped by handfuls of opiates and my crutch, we braced ourselves for the crowds. Unlike my Beautiful Days Festival experience, which was amazing for disabled access , and the only time I have tried it since I fucked my back up, I felt like I should not have come to this music event. For, it was not really a festival. I felt unwelcome as a person with a disability.

Then an amazing thing happened. I got a Golden Wristband. We were in! I camped there for the rest of the day, mostly drinking overpriced red wine (medicinal), and R took the children off to have some fun in between some amazing bands playing.

As I watched the security guards continued to send clearly disabled people away from the mostly empty platform to get their very own Golden Tickets, I felt more anger and upset well up. Why was this platform so difficult for people to access? I looked around the festival to see more disabled people among the crowds and wondered if they knew this platform was available to them? Or maybe they already knew what I didn’t.

I spent the afternoon enjoying great bands while trying to not get cross at the noise pollution from other areas that constantly overshadowed the music. It was strange listening to Lindy Hop from a dance floor while Athlete played, and The Levellers were drowned out by dance music. Frank Turner was amazing. I expected no less. He played loudly and swore loudly, but yet still didn’t fully drown out the Big Blue Top in the background. But, bloody hell can that man sing, can that band play?! The children danced for me.

The platform was far from the main stage crowd, we were ostracised and segregated, far from the jumping, singing, amazing atmosphere of the excited crowd. We watched in the distance. We were there, yet not really part of it all.

I was cross and in my anger fired emails to various people. I was given platitudes and had smoke blown up my ass by the On Blackheath events organiser, until I refused to accept her disingenuous offerings and she became rude. I emailed Frank Turner, as he is an advocate of Disabled Access to Music. He replied and was very kind.  And I was reminded of the amazing support for disabled access to music out there that is promoted by Attitude is Everything. 

But, really, it was me that I was most angry with. It was harder than I expected. I’ve buried myself in my little cocoon and pretended things are no different before but they are. They really fucking are. I was cross with myself for thinking it would be the same as it once would have been.

All I wanted to do was Dance to my favourite music, to be in the crowd, not on a platform. I wanted to be dancing with the children on my shoulders, or swing them around to Beautiful Day sung by Imelda May and Four Simple Words by Frank himself. Instead I felt alienated, yet again a burden, a reminder that this fucking problem isn’t going away. It meant I couldn’t enjoy the weekend as I would have once done. I won’t be able to do that again.

I promise though, that for every upset, I will match it with a happy tale on the flip side of shit.

Micro-Discectomy: 6 Weeks After

I am making steady progress recovering from my micro-discectomy, which took place 6 weeks ago now. The scar has healed well, I am mostly standing straighter and the sciatic pain in my left leg has continued to improve significantly. The decision not to decompress the right side of my L5/S1 lumbar disc has not gone unnoticed though; there is pain on my right side. I am at this stage unclear if this pain was always there but not noticeable due to extent of my left sided pain, or if this has increased since having the micro-discectomy. I personally feel like it has increased a little, and there has been the odd day where the progression of pain has followed a similar pattern as that of my left leg, but it’s not continuous so I shan’t complain (much). I have had a couple of frightening days, in particular one evening where my left leg started hurting in exactly the same way as it had on my bad days prior to the micro-disctectomy; my calf became sore, my ankle tightened and my foot went numb and fuzzy, my entire leg became weak, with my hip feeling like it would snap. An odd and altered sensation in my groin area meant I almost went to A&E and I felt scared it had prolapsed again. But, after about 2 hours of panic, and a reasonable sleep, it felt better in the morning. My back still ‘pops’ though. I have had several horrible moments when I have bent over ever so slightly, reaching forward or something similar and found myself stuck, having to hold on to something to get myself straight again. I have had several scary moments when I have bent down using my legs to take the wait as I have been told to do, to find that my back has wobbled on the way down and I am stuck in that position. I have also had some frightening moments where my back has completely given way and I have found my legs having to collapse due to the pain and found myself stuck on the floor. In between these more serious moments (probably once a day) I am getting many times when my back ‘pops’, or grinds, I can feel something moving. I suspect this has always happened, but prior to my micro-discectomy, the movement of my vertebrae would result in my disc being pushed out more and hitting my sciatic nerve, with a cascading effect of inflammation, pain, and a period of bed rest. Now, I am just trying to ignore it. I am disappointed to note that I do not get to see the neurosurgeon for 3 MONTHS! So, someone cuts open my spine, pulls and prods me around near my spinal cord and nerve bundles, closes me up, sends me home and I see no-one for 3 MONTHS! I had been told by the Registrar who discharged me that my neurosurgeon would see me in 6 weeks. My GP thought I would be seen in 6 weeks. Yet, having not received an appointment by 5 weeks, I have been informed by the appointments team and the Neurosurgeon‘s secretary (curtly) that 3 months unless there is a clinical need to see him earlier. My GP also said that he has received no report regarding my surgery and so, had I not shown him my lovely scar he would never have known! It’s a shame as my continued back going means that when I am on my own I have to continue taking my crutch in case I hit an uneven patch. I have to take it anywhere there might be uneven surface as anything other than flat office floors etc have my back collapsing. It’s annoying more than painful; although it is painful too, it’s still nothing compared to how much sciatic pain I had before my micro-discectomy, so won’t complain too much.