This is a great piece on “I Told You I Was Sick” blog by guest writer Molly Garner
Are you living with chronic pain? These 7 practical ways to manage your chronic pain can help you get the comfort you need without synthetic drugs or chemicals.
Source: 7 Practical Ways to Manage Your Chronic Pain
I’ve really struggled to get my act together over the last 10 days and write. You may have noticed a gap in my posts – POTS symptoms in the heat followed by a migraine! This time last year I was mid spinal cord stimulator trial and planning my girl’s birthday, that is I was carefully pottering about with a massive dressing on my back and an electrical flex sticking out my side attached to a magic box of tricks handing out instructions! So this also means I’ve been blogging for a year.
My kids really could not understand why I would feel the urge to write or why anyone would want to read anything that their mum wrote. At first PainPals started out as a means to let friends & family know how I was getting on, to cut down on the number of repeat conversations. I had been really helped by info that I’d found online, particularly on Pain Support UK & by a lady called Tina Worth, when I was first referred to St Thomas’ pain unit, so I figured that if I could help someone else at the same time this would be a bonus. I never dreamt that I would link up with so many people, find so much help and support out there or that so many of you would want to follow me. I am really grateful.
I still remember arriving at Guys hospital at 7 am and being the most scared that I had ever been before surgery. This wasn’t going to be the longest, the most complicated or even the most painful surgery that I had undergone – but it really felt like and still feels like there was the most riding on it. It offered hope and if this trial didn’t work then that hope for relief of the chronic back and leg pain was gone – and to continue living like this was not something I could contemplate.
But life goes on and I want to recap the last year – the difficult bits, the positive bits & well the rest! Has the spinal cord stimulator worked is the question that most people ask. Yes & no. Probably the hardest part of this journey is learning & accepting yourself and then explaining to family & friends that this is not a cure. I have permanent nerve damage & a permanent genetic condition. Would I go down this route again? Absolutely. Whilst the scs is not the be all and end all for me, it has given me relief and some control back. I have to admit that I still have “stim envy” for those who are having 24 hour permanent stimulators, as I have to turn mine off every few hours. A “buzzing” stimulator also has to be switched off to drive – meaning that I can’t drive as I am unable to sit in the car without it on – and should not be left on whilst sleeping. So painsomnia again! I understand that different surgeons use different devices, there is a cost, and that in the UK high frequency devices are only licensed by NICE for one specific diagnosis. But….I still envy my friends who are able to have them on all day!
I have written posts about drugs and chronic pain, and I do feel proud that I’ve managed to come off the high dose of oxycontin that I was on a year ago. It was not easy! In fact I think that my bloody mindedness was what got me off and the biggest benefit must be the kids saying that I am like the old me again. A downside is that the opiate was masking my increasing Ehlers Danlos pain and now the pain in my hips, shoulders, knees etc is much more acute and disabling. I can’t manage without pregabalin(lyrica) and am still on the maximum dose for my nerve pain – St Thomas’ have said that I may never be able to come off it. But I’m about to start a trial of a cannabinoid hemp formula supplement which I will review on here, so watch this space for some (hopefully) good results. My autonomic nervous system has deteriorated and symptoms such as fainting, headaches/migraines, circulatory problems, postural changes do seem to have worsened since I had the electrodes implanted.
No one is able to confirm if the stimulator could be increasing other symptoms, but I do wonder as it is the spinal cord and thus the nervous system that it is acting on.
Positives from this last year have been joining social online communities. I had no idea how anything worked this time last year and my kids would laugh at me -facebook was totally their domain. But the support that I have found from fellow spoonies on wordpress, the amazing Julie Ryan and Chronic Illness Bloggers, Ehlers Danlos Uk & Twitter has been beyond any expectations. The realisation of how many of us there are and how many families who support & are supported is simply staggering. To find the Twitter #SpoonieSpeak set up by Tania from http://www.WhenTaniaTalks.com on a Friday evening to a new EDS chat that I stumbled upon last week, there is so much support & good feeling toward each other.
I still struggle to accept my limitations and am pretty rubbish at pacing, but I have accepted this year that a wheelchair gives me more freedom and that whilst my spinal cord stimulator has helped to manage pain, I am one of the third for whom the disabling factors of EDS get worse with age. I’d rather my boys – young men now – didn’t have to get me out of the shower and dry me on a bad day…..in the humid weather last week I had breathing problems after a shower and the eldest’s main concern was that I didn’t die whilst naked. Charming!! There was an article in a tabloid recently about some ladies who wouldn’t let their partners see them naked because they were worried about saggy breasts post feeding, caesarian scars or stretch marks. They should be so lucky to have the choice – and only one scar – they should see my patchwork. We have to laugh as all too often chronic conditions rob us of dignity & leave us in PJs.
On a brighter note I have managed to join 2 book clubs and reading is certainly easier without the opiate background to enhance my brainfog. The first has been a local group that we found through Google Meet ups and Duncan & I both go along – probably helped to persuade him when he knew that it met in the pub! The second is The Book Club on facebook which has been amazing. 
I feel honoured to be able to read and review the works of authors who are also members – I hope that you have enjoyed some of my reviews that I have published on here. Next month we have tickets for a birthday event for this group in London and I really hope that I am well enough to attend & actually meet some of these lovely people. Think I might have to buy that wheelchair to get me there – we’ve been a bit slow as I’m still not quite sure what to invest in.
At times I feel very aware that other amazing bloggers seem to publish something every day and I just don’t seem to get my act together, or feel that I can write such inspiring pieces (have you read Genevieve at http://www.shipwithnosails.com or Ness at http://www.TheGirlWiththeFiveLads.co.uk ?). But it is through these lovely ladies such as Amy at http://www.SmilesintheTrials.wordpress.com that I have drawn support & understanding and new friendship. A year ago I would never have imagined that there would have still been any interest for what I might post or tweet, but here I am, still writing, making birthday cakes when I can and more importantly still holding my head up high…..well most days!
I’ve just read this piece on Vice.com that will interest all UK chronic pain spoonies! The NHS is trialling a cannabis based vape pen manufactured by MediPen……the journalist who tried it may not have chronic pain and may have enjoyed blowing vapour over his colleague, but the fact that the NHS is doing trials will hopefully be able to give some credence to the benefits of this CBD device. In case you aren’t sure – CBD doesn’t have the psychoactive compounds normally associated with “weed”!
The full article can be found here:
http://www.vice.com/en_uk/read/medipen-trialled-in-nhs-vgtrn
I’m sitting here recharging – yes literally as the scs running a bit low on juice – watching the Olympics and downing Pimms. The divers and then the gymnasts, wow they are fit and so many of them have overcome injuries to be at the top of their game.
Pin for later
This got me thinking about a lady whose work we admired in an art gallery recently and her story. She was an ordinary young housewife who had her family and set about bringing up her children and supporting her husband as a stay at home mum. Life felt pretty dark at times, although it should have been great, and now that wonderful thing hindsight has shown her and her husband that she probably had post natal depression for many years. During these difficult days she developed a painful nerve condition of the face called trigeminal neuralgia – all the same awful nerve pain that is experienced with sciatica down the leg or nerve pain down the arm, but running through the side of the face. I know that I have written at length over the last year about nerve pain and just how hard it is to treat, but it really is the hardest thing to control and the trigeminal nerve is probably the hardest to symptom control. This would have led to a continuous cycle of pain and depression.
She had never painted beforebut with encouragement started to put brush to paper and found a fantastic outlet for her pain and depression. Ov
er a period of years she developed her own very distinctive style – the gallery described it as Marmite, as people either love her work or hate it – and her work started to be noticed by art critics. Today she has exhibited in a top London gallery, her art sells for thousands and she is a leading figure in the Royal Institute of watercolour painters. Just think, this all started with what was effectively art therapy!
http://www.adrianhillfineart.com/ – link for the gallery in Holt for more information
Therapies that complement traditional medicine have long been recognised for their beneficial qualities in mental health, palliative care and cancer care. The use of art and specifically colouring is now becoming a regular therapy for symptom control. Adult colouring books are quite the rage! I have found that when the pain is not settling, sitting quietly with a picture to colour in really changes my mindset and thus my response to the pain. There is something about the different way in which you have to concentrate that slows down the mind and is calming. My girl, who does more than just colour, says that she finds painting and drawing relaxing. With art, it is possible to express thoughts and feelings that can’t be voiced. In the paintings of the artist described, it really is possible to see her battle with depression and pain in the dark outer edges of every painting – and yet the details of the actual pictures are bright and vibrant, depicting people living life to the full. Maybe some these actually picture activities that she would have liked to have done or places to have visited – even the slightly more risque elements to some of her work could be expressing a side to life never experienced. I wonder how many of us bloggers (not just those with an illness) use writing as a similar therapy – whether it is as a distraction from illness, a means to express ourselves in a way that we are unable to voice in everyday life or merely a way to escape from the stresses & strains of modern day life for a few minutes.
So to return to my original thoughts, it is possible to work and strive to overcome physical & emotional difficulties in order to produce a work of art, be that a physical painting, a novel or a perfectly executed high bars programme. 
But we mustn’t feel or be made to feel the lesser for failing to overcome our situations or to
produce wonderful artwork. We can take inspiration from others though and each find our own outlet.
So, I’ve finished charging, my battery is showing full, the Pimms is long gone……nearly forgot, we came away from that art gallery truly inspired, but also with a slightly lighter purse and a girl grinning from ear to ear as she carried oil paints home! I think I know how she plans to express herself over the remainder of the holidays!
Please take a look at Nicole’s review of N:Rem system in helping her manage her chronic pain & related insomnia….whilst being pregnant!
http://mrsjeebyssurvivalkit.co.uk/nrem-sleep-system-review/
Find her on Twitter(https://twitter.com/MrsJeeby) and facebook( https://www.facebook.com/MrsJeeby/)
I started this blog initially to keep a record of my trials and tribulations as I had my spinal cord stimulator implanted, but it has evolved into well, ramblings maybe! Anyway having been reading posts on the support group site, I thought it was time I wrote a 7 month update!
I still feel that I’m learning to live life with my stim. What I’m about to write will probably be repetitive of other posts on this site, but a recap never hurts. Living with pain day in, day out is really hard work – exhausting both physically and mentally. I would love to be able to tell you that having a scs has made everything better, that the pain is gone and that life is back to “normal”. But I would be lying. Sorry to make things sound bleak for anyone waiting for a trial, but it is important to be realistic. Those of us under St Thomas’ know that they pull no punches on their 2 week pre trial course in order to prepare us, but everyone’s pain and experience differs so that it is impossible to predict every eventuality.
For me there have definitely been enough positives that I would do it again. The stimulation that I feel in my leg, foot & back does ease the pain the majority of the time. It gives me a feeling of control back. But a downside of this particular scs (Medtronic) is that in order to continue the pain relief, it must not be left switched on all the time. St Thomas’ recommend several hours on, several off – but I am finding the periods of time when switched off very difficult to cope with, particularly at night. I understand the rationale for turning the device off: if the tingling sensation becomes the body’s new baseline, then there is little room for manoeuvre with further pain relief. But this doesn’t help me when I’m climbing the walls!! Any advice from out there would be gratefully received….
I seem to come back to negatives, but I really don’t intend to. I guess the nature of chronic illness, particularly pain, is that it is always a doubled edged sword.
As you already know, another major achievement has been weaning myself off oxycontin and it hasn’t been easy. I feel proud of myself for being bloody minded enough to stick with the withdrawal and I can report that some of the opiate brain fog has lifted. My memory is better – my kids might dispute this – and I have taken to social media as I feel more able to read blogs and facebook, twitter reports etc – again I’m not sure that the kids see this as a positive. For me this is a sign that my concentration is improved and that there is a glimmer of the old me still lurking. But..again a negative, the pain has increased – I won’t dwell on this although I can relieve it by lying on my back and turning the stimulation up! Not particularly conducive to shopping.
My own post operative recovery was relatively smooth, but one of my pain group did not have such an easy time. We are all warned about possible complications, but I’m not sure that we really think we may be in that odd couple of percent. The post op complication suffered by my pain pal was an infection in the electrode lead site, which of course led to him being very ill. Again I don’t want to frighten anyone, but it is important to be prepared. The hospitals take swabs and St Ts’ are very clear that if said swabs come back growing any organism that the whole implant must be removed as the spinal cord gives a direct route to the brain . In this case all’s well that ends well as he had another implant placed a couple of months ago…….however this did make another decide not to go ahead with the implant trial as he didn’t want to risk the same complications.
Headaches seem to be a common side effect of the stimulator – for some people more than others. I have had them on and off, but another friend did experience them regularly in the first months post implant. Charging the battery has not presented me with any major problems, although I have found that I need to remain sitting as the connection is too intermittent if I move about. But I do find that the actual implant is quite painful at times and I have seen comments on the support group from others saying the same. I am finally losing some of the huge amount of weight that I’d gained and this leaves the implant far more prominent under the skin. I won’t even attempt to write the language that escaped as I caught the implant, but suffice to say that the air was blue!!!
So, 7 months on…..the young engineer turned 20 and passed his driving test (not sure which is more frightening); the A level student turned 17 and visited Parliament with us and attended a Euro debate with Chris Grayling arguing for Brexit – our son’s voice and own opinions are getting louder by the day and Politics may be on the agenda for uni; the lovely girl remains as untidy as ever, as politically correct (we get told off if we tease her brother for not being stereotypically gay enough – you know, tidy, love his mum) and showing great artistic flair. Whilst the kids probably don’t notice whether the stim has made much difference to my pain or not, Duncan would tell you that 7 months on he can see a big difference, even if I can’t always distinguish the good days from the bad. It hasn’t made a difference to my worsening Ehlers Danlos (another blog post!) So no, it hasn’t been a miraculous cure, made me better or all the comments that people say/ask the chronically sick – but yes, I would do it all again in a heartbeat to just be able to experience some relief.
Student engineer’s first lesson
A level student drawn by his sister!
#chronic pain #chronic illness
Easter saw a different pain in our household, with hubbie experiencing the nearest to childbirth that a man can. Initially he blamed back pain on a football club that he runs for 6 and 7 year olds, but as the intensity rapidly increased over a 2 hour period we both knew that something more was going on. So I packed him off with my dad as chauffeur and the 17 year old as escort to A&E, with a strong hunch what was causing the problem. Son was given strict instructions to keep in touch, ask questions and let me know what the doctors said. Do you think he did? Eventually I received a text with one word……MORPHINE! What does that mean, Olly??
My hunch was correct and blood tests came back showing renal colic, or kidney stones in layman speak. Allegedly the most acute pain and akin only to labour. When I finally did speak to my dear son, he informed me that by the time his father arrived at casualty he was in agony and the initial drugs didn’t even dent it. Oliver expressed his concern by reading his book! The symptoms were classic(extreme pain at the edge of the lower ribs radiating to the side), except that there had been no grumbling warning signs, and subsided as the stone dropped into the bladder. A scan the following morning showed clear kidneys, no abnormal blood tests and no predisposing factors – just one of those things!
My news is that I’m a week off the opiates. HURRAY! I’d be lying if I said that the last few weeks have been easy – in fact these lower doses have been harder to adjust to than the huge doses of last year. Restlessness, stomach pains, upset stomach, increased pain, insomnia….need I go on? The sleepless nights are unwelcome and painful, yet already my memory is returning and my desire to read and write. The funny thing is with certain drugs that the brain slowly but surely turns to a cotton wool fog, but at first the benefits seem to outweigh the side effects. But then the opioid shaped holes in the memory, the concentration and the well being start to turn the brain into a Swiss cheese. I can only imagine that this must be a little what the onset of dementia feels like. My inability to think, to remember, to concentrate has stopped me from functioning normally and in certain school governance meetings I have felt just out of my depth. This, combined with faints that may or may not be a type of seizure – hurray! – has left me unable to function as I want to.
My GP was surprised when I told her my news this morning. She is hopeful that I may also see some better bladder function return, but my poor guts don’t know if they are coming or going. It will probably be a good 6 months before I am entirely free of oxycodone, so I have no plans to touch the pregabalin as yet. But I do feel pretty proud to say that I’ve gone from 120mg twice a day to zero in 6 months…….I went to a book club last night and I’m even using Twitter. Good riddance brain fog!
… or at least I hope it will. Yesterday, brought some very exciting news that my last post had been featured on The Mighty – the online disability magazine. Cue several hours of not sleeping because I was excitedly clapping on twitter about this, then rich tea biscuits. Because, well, Twitter. Today, continues in this […]
via It’s Going To Be Thunderous! — The Hippy Geek
My beautiful daughter stood up and gave a talk with this title at the end of last week. Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!). What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog. No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.
But she doesn’t like what the selfie culture is bringing out in her friends. The obsession with posing in crop tops and layers of makeup. So she went away and looked at statistics, including anorexia, suicides and body dysmorphia, and stood up to speak to her friends. She doesn’t find this easy and 
initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened. Hopefully it made them think for just a few minutes.
Years ago as a post reg nurse studying for a Head & Neck cancer qualification, I chose to write my dissertation on body image, or rather the effects of altered body image. There was very little literature – mainly studies by the American Mary Jo Dropkin and the book by Mave Salter. Body image was a touchy feely subject that we didn’t really talk about, and certainly not in relation to ourselves. How times have changed! The impact on my patients undergoing major, disfiguring facial surgery should not have been underestimated – for not only was there the obvious physical changes (removal of voice box, tongue, nose, eye, mandible, sinuses or a combination) but the alteration to voice and speech, the ability to eat and drink, the impact on relationships and social lives.
Today I think about the impact of hidden illness on body image and self esteem. The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted. On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list. Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure. Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often. To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!! But writing seriously, my own self worth has shifted significantly. I no longer feel like the person that I was supposed to be. Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??
Chronic pain and back surgeries have robbed me of my independence. This is probably my most prized possession that I have unwillingly lost. It affects all areas of my life from just throwing on my coat, grabbing the car keys and popping to the shops to needing help to sit up in bed in the morning. The reality is that I constantly have to rely upon other people to take me to places, to remember to ask if I would like a lift because I feel like a nuisance for constantly asking, to wash my hair, blah, blah,blah….I miss my able body. A mixture of drugs and immobility have caused me to pile on the pounds – about 3 and half stone in total. I have never struggled with my weight, even after babies, but this has been so tough. Initially I managed it and only gained a few pounds, but as the pregabalin/lyrica dose increased so the weight did. I always knew that my patients said the dreaded pregabalin piled on the pounds, but you cannot understand until you experience it – the fluid retention, one day being able to wear a watch and the next not – and the fact that the weight may go on very quickly with the drugs, but it doesn’t come off easily when the drugs cease. I know that other people think I’m mad, I’m tall and carry it easier and that this should be the least of my problems. But staring at a wardrobe full of clothes that no longer fit just adds to the decreasing confidence and at times self loathing. I miss my able body. The tiredness, lethargy, feeling like I’ve run a marathon when I’ve actually only been to the cinema – catching a glimpse of myself in a shop front creeping along with a walking stick, albeit a pink, sparkly one! I have turned 80, aging at an ever increasing rate, giving new meaning to the aging process. I miss my able body.
Yet I know I’m still one of the lucky ones. There is always someone worse off than you, isn’t there? So back to my lovely girl’s dilemma and I read in the press that young girls are now taking selfies of their waist sizes…..by measuring them with a piece of A4 paper!! Yes, you read correctly and if this isn’t going to have a negative impact on the body image of healthy youngsters, god help the unhealthy amongst us!!
Busy week last week for all sorts of reasons. Trips to London, organising and attending a careers night, cinema, theatre, school meetings, catching up with old friends and a charity race night. The Careers in Engineering was a great success – I did admit to not being an engineer, but to having some pretty good engineering inside of me! Oh yes, and taking 3 generations of my engineering family with me – I managed to be the most embarrassing mum of all time for our student. Dad came as a roving host and there was never a glass of red far from his side. Dad, Duncan, Matthew and Daniel – couldn’t have done it without you. Check out our pics: Engineering photos kgs friends engineering.
I have been determined to live life as before and I so desperately want to be able to go out every day as when I was working, socialise, do what other people do. But this week it felt like my wretched body let me down physically and mentally – Ehlers Danlos and chronic pain let me down. I feel so frustrated: that I can’t have arrange a full week; that I felt panicked at the thought of a trip to the London theatre; that in the theatre I had to ask to swap seats as the draught from a fire exit door caused excruciating pain; that as the week progressed the exhaustion became more and more extreme; that by Thursday morning my physio was sticking needles into a shoulder muscle so tight from recurrent dislocations and stress; and that I constantly apologised and the tears flowed nightly.
The race night was a charity event in aid of research for Prada Willi syndrome Prada Willi syndrome. It was organised by friends whose third baby was born with this metabolic condition for which there is no cure. The hall was full and our local shops had been very supportive with donations of prizes and sponsoring horses – the support of so many friends and family was quite wonderful. This little known condition and the research & support given by the charity definitely desrve a shout out.
I hate to move the spotlight back to me, but couldn’t help to notice again at said race night, how people don’t know how to react to the chronically ill. (No, I’m afraid that is not me – I don’t look that good at any time!) I don’t usually describe myself as “ill”…….I don’t think of myself as “ill”, and I am acutely aware that “friends” don’t know how to react to my disability now. We know that others socialise without us now, and who can blame them? When a 46 year old woman has to have her mum help her in the
loo – although they were primary school toilets and very close to the ground – no wonder I needed help to sit down and then get up off the blinking thing again!
I equally know that other people can’t get their heads around the fact that I need so much help now – after all I don’t look sick, until I can’t stand up, have no balance and my shoulder dislocates.
Yesterday my week finished or rather was finished off by a dog walk in the cold. I know, I know – I shouldn’t have gone, but it was a beautiful day and I really wanted to get out. Big mistake. The cold permeated every part of me from my joints to my back to my foot. How is it possible for internal titanium to feel cold? I made it home just, then proceeded to 
scare hubbie and daughter by passing out and then stopping breathing – although as middle son would now point out in his very loud, deep voice I had to go and start again. Charming!!
When I started this blog I wasn’t sure where it would take me – a good way to update friends and family after surgery; maybe to be able to offer a glimmer of help to others undergoing scs or experiencing chronic pain; what I hadn’t anticipated was how much I would enjoy writing again, how much I would enjoy & learn from other blogs and that I can vent my frustrations without being lynched by 3 teenagers!!! Thanks if you are still with me.
Turning chronic illness into chronic creativity
Stories about fostering and adoption
Personal experience of living with chronic illness when life is beginning
Living with disability, using personal experience for social change
The greeting card community company
Life With Chronic Illness
Living life with migraine, post-concussion syndrome and mental health
My Experience with Ulcerative Colitis - the good, the bad and the messy
My neuroimmune journey: PANS, ME, and POTS
Genuinity: a philosophical quest to make the world a better place
Thoughts of a twenty-something freelancer navigating her way one blog post at a time
Ramblings from a writer
Author, Poet, Storyteller
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