It has been one of those weeks where nothing has quite turned out as we thought it would – the culmination of some tricky events that have escalated over the summer. I can’t write about them yet – they aren’t just mine to tell. But the impact on the family is great and a dash up the motorway has left this body feeling more decrepit than ever. Chronic pain is flaring and spiralling. Emotions are flipping between tears of worry and screams of anger; a lack of sleep and a definite lack of concentration is overwhelming.
I am sorry to have missed Monday Magic yesterday. This poem that I found by Patricia Grantham seems appropriate!
The weather has turned – my joints and dodgy bits of body are telling me it is colder, even if the sun has been shining. Last night we went to a posh do at The Oval cricket ground and there was a drinks reception on the roof terrace before the meal. On arrival it was suggested to guests that they left their coats on the second floor before ascending to the fourth floor. It was lovely looking over the stunning cricket green (it really was very green) as the sun went down – but it was freezing!! There was a blustery breeze that left many of the ladies’ bare shoulders blue and goose pimpled in their strappy evening gowns. I had kept my outer layers on – a cape that looks a bit posh due to a fur collar – but my spinal cord stimulator and chronic nerve pain were doing battle with each other as to which could out do the cold air!
Earlier this week hubby and I were out shopping and again I was caught out by the sunshine! Something that you don’t realise when you are up, mobile, walking and running is just how cold it can get sitting in a wheelchair. My legs and feet were freezing and the cape (not the one from last night – one that Dad calls my “old lady blanket”) I usually tuck around me was safely in the car. It is time to change the clothes, pack the summer shoes away and accept a different set of symptoms as the POTS faints decline as the temperature drops, and the chronic pain flares.
This is the autumn term now and when I saw Lorna’s writing prompt (Autumnal food memories) on Gin & Lemonade it got me thinking to times in the past when I could go out without constant chronic pain. I’m not moaning, looking for sympathy, just merely reminiscing! My memories of autumnal food takes me back to the Halloween/Guy Fawkes nights of my primary school days and the bonfire celebration that we would attend as a family held by my brother’s school. It was in the rugby field and the big treat would be toffee apples – hard, crunchy, golden toffee casing over soft red apples. Dreadful for our teeth Mum would tell us every year! But then as the evening temperature dropped and feet started to go numb inside wellie boots, there would be polystyrene cups of hot tomato soup – Heinz in those days of course! – and never has soup tasted so good.
Thinking back there were aches and pains in some of my joints even then, but all put down to me being bendy (correct!) or growing pains (wrong!). But the memories of that tomato soup, sticky toffee apples and not forgetting the fireworks and bonfire, will always makes me smile.
Make your own toffee apples with this simple recipe from the BBC Good Food site
There should be a Saturday on that title, but I am a day late which just about sums it up!! But I had to join in this week, no matter how late, as the prompt was clearly written just for me. I spotted Linda’s Friday prompt and it seemed to call out to me…..”Claire, Claire this is for you”, but the very thing relating to the prompt has been the same thing stopping me from typing, from letting my brain and my body work together, cohesively.
The prompt “Your Friday prompt for Stream of Consciousness Saturday is “-ic or -ical.” Find a word that uses the suffix “-ic” or “-ical.” Bonus points if you use both. Have fun!”
How many times do I use the suffix “ic” in the course of my blogging? Just about every post. Let me see – chronIC pain, chronIC illness, chronIC fatigue, chronIC bloggers, chronIC community. But when does pain or illness become CHRONIC? In fact what is it before this?
The definition of chronic is “persisting for a long time or constantly recurring” – so how long is a long time? When does pain cease to be acute and cross into the chronic stage? How does a chronic illness earn that tag?
In a previous life, I was taught that a general rule is that when an illness has persisted constantly for 3 months or more, it can be thought to be chronic. The illness may have slowly crept up on the individual, or gradually worsened increasing symptoms and disability. With chronic pain, the pain itself often takes over and actually becomes the “illness” as the individual lives with it day in and day out. Acute illness and pain is sudden and dramatic, but usually short lived in contrast to the never ending spiral of chronic conditions.
My own chronic dislocations, chronic pain and chronic brain fog have seen what can only be described as some comical situations over the last 48 hours (yes got the ical in too!!)……having literally gone down a rabbit hole in true Alice style, I shot out of my wheelchair and dislocated the shoulder(again…groan) and the opposite ankle. In my bedroom that evening my ever helpful kids were taking a long time coming, so yours truly decided that hopping on the good leg was the obvious solution to get to the top of the stairs. One failure of knee joint later had the young engineer, lovely girl and yours truly all collapsed in a rather strange heap……but why was I crying with laughter??? Strange things happen with these chronic problems!! Got to laugh though….
But did you know that Chronic can mean something else entirely? I discovered quite by chance that it is the name given to a particular strain of cannabis……ironic or fitting I wonder, with the increased debate over the use of cannabis and CBD (cannabidiol – THC psychoactive element removed) for chronic pain and illness?
When a person loses their “raison d’etre”, what do they become? Blood and bone and tissues.
I have just watched a young athlete win her heat in the European championships with an enormous Personal Best and the delight on her face, in her body language, in her voice were infectious and special. The training and the hard work that she has put her body and mind through over weeks, months and years is paying off today.
The thing that drives each and every one of us to get out of bed in the morning will be individual and change at different times of our lives. Dreams and aspirations aged 20 will alter, expectations change with life experience and maturity. But what happens when that reason for being feels like it is “stolen’ away by chronic health issues?
Personally I found that something that affected me greatly was medication. The combination of strong anti convulsant drugs combined with opiates used for nerve pain combined with a night time drug usually used in severe depressive disorders, at times created side effects that were as difficult to cope with as the chronic pain for which they had been prescribed. The combination of pain, sleep deprivation, brain fog and inability to concentrate just felt like a recurring cycle – a domino effect as one thing caused another caused another in ever decreasing circles. I didn’t know whether I was coming or going and the antidepressant drug, mirtazepine, left me unable to function in the mornings – my kids, the younger two at primary school then, would have to physically get me out of bed and then I would drift off into semiconsciousness sitting on the loo. I could hear them talking to me but I just couldn’t open my eyes.
Slowly but surely it felt as if the ordinary things in life were being stripped away, including my lifelong passion for reading. I have always had a book or two on the go, and no matter how late is is, I always have to read at least a couple of pages before turning the light out to sleep. Over a period of a couple of years I found my ability to read a book diminished – despite being awake until the early hours night in, night out, I was unable to complete a book as I read the same page over and over. What the heck was happening to my brain? A friend bought me a magazine subscription for my birthday and I couldn’t even manage to read a whole article. But my pain was so severe and uncontrolled that my inability to read was the least of my problems, as some days I couldn’t imagine living another week like this let alone another 40 year years.
When joining the pain programme at St Thomas’s hospital (London), before I had my spinal cord stimulator trial, I had to agree to reduce my oxycontin (oxycodone – double strength synthetic morphine) with a view to coming off it entirely. I have written about the current opinions re use of opiates and chronic nerve pain before and about my “withdrawal” – that is not what I want to concentrate on here. My opiate dose reduced over a period of time and gradually my sleep improved along with my concentration. How is it possible that my sleep got better with no pain relief (I cannot have my scs turned on at night)? I had not realised just how huge an effect the drugs were having on my sleep and general well being – and not a good one!
Gradually my brain has allowed me to start reading again and to finish a book or an article. I found a local book club that meets monthly in the pub and we read any genre as long as it is a recent publication, so that no one has already read it – no issues to be had with discussing someone’s all time favourite! I love the fact that we don’t take our discussions too seriously and I have met some lovely new friends. My love of books led me to some social media book groups and it was here that I discovered the world of reviewing.
The fact that authors and publishers are generous enough to share their new pieces of work with an amateur reviewer like me feels amazing. I have discovered the joy of receiving an advanced copy (ARC) of a new piece of writing and being one of the first people to read it. Books have always been a part of my home and as a bit of a puritan, I would only ever read an actual book – I like the feel of a book in my hands, the smell of new paper and the beauty of a new cover and uncracked spine. But……becoming a book reviewer has converted me to a Kindle user. Don’t get me wrong – nothing competes with a brand new book or a well thumbed favourite classic – but I do appreciate having so many books available in one place and as my ability to hold a book has worsened, the ease and weight of a Kindle is perfect, particularly when lying down!
I know that authors are grateful to the band of book reviewers that are out here in the blogosphere, on goodreads and Amazon. We help to get their titles out in the public domain. For me though, I have so many reasons to feel grateful to these wonderful authors, publishers and social groups as becoming a reviewer has given me back a role and with it a sense of worth. The first time that I saw my name on a banner for a blog tour, I knew that I could still make a difference. I might not be able to hold down a job due to my chronic conditions and the unpredictability of my symptoms – but this is something I can do!
There still are days when I am unable to read, and others when I might have read the book but brain fog stops me from getting a review from my head onto paper. I have had times when I will know that a deadline is looming and the stress of being unable to write will increase my symptoms, thus starting a vicious circle. But I appreciate that I have been gifted someone’s work, something precious to them that they have poured their heart and soul into. I am entrusted to care for it and I will always do this. There may be times when I struggle to get a review written, literally when I have dislocations, but I will always read a book sent to me and give a fair, honest review. In school many years ago, I was taught how to write a book review and I have never quite been able to shake off my old teacher’s instructions – some of you will know that this means my book reviews can be a bit long. But if I have been given an author’s “baby” the very least that I can do is spend the time to give it due care in my review.
Reading and writing has given me a new purpose. It can never take the place of my lost life, but it can sit alongside it and over time reviewing has become an important motivator for me. I am reading a huge variety of genres, some that I would never have chosen myself and thoroughly enjoying expanding my horizons. I have discovered audio books and use these to help motivate me when doing physio and exercise plans – I can be often be found pacing my neighbours’ treadmill whilst listening to a thriller! It isn’t easy to do the necessary exercise to keep conditioned when everything hurts, but a good drama or mystery certainly helps to distract from pain and dodgy joints.
At times living with a chronic illness can roll one day into another into another, but amidst the fatigue, pain and failing body, I believe that it is important to have a reason to get out of bed and keep the brain “moving”. For me reading and reviewing has given me a new “raison d’etre” – something to keep my brain working, to feel some pride in and to appreciate my self worth.
This week I have been surprised and a little overwhelmed to find that I have been nominated in 2 categories for the WEGO Health Awards!
These awards are particularly special as nominees are described as a “Patient Leader” and “Advocate” – and I find myself mentioned alongside some Health blogging royalty. A huge honour and very exciting.
“WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network. The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.”
When I was first medically retired, I found the amazing world of bloggers and completely unexpected online support from those who had been through similar health experiences. Strangers who understood – I was bowled over that so many were happy to share experiences & lend an ear, but also to how many are living everyday with a variety of health conditions. This is what inspired me to start PainPals – if I can offer some support as well as take it, give friendship as well as make it and offer some words (I stop short of saying wisdom) and humour about living with a family and chronic illness – then I am happy!
So here I am, nearly 3 years on from my spinal cord stimulator implant and so nearly 3 years on from starting this blog. I find writing therapeutic on so many levels and find myself nominated for “Best Kept Secret” and “Best in Show:Blog” – thank you so much!
If….you would be happy to have a look at my Nominee Profile and endorse me, that would be fantastic. Take a look at some of the other great nominees too!
For the next fortnight the focus for the Scope online community forum is “Chronic Pain”.
To kick the discussion off, I am delighted to have my own poem “Today You Beat Me” featured and as the Chronic Pain Advisor hope to be “chatting” online with lots of you – visit the forum here Scope.
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Next week two of my favourite pain bloggers will be featured – Ali from Notebooks and Glasses and Barbara at Back Pain Blog UK– so it would be great if you would drop by, give them some support and check the community out! Please pass the details on to anyone who might benefit!
What is Scope?
Scope is a charity that exists to make this country (UK) a place where disabled people have the same opportunities as everyone else. Until then, we’ll be here.
Scope has recently reviewed research to produce a document called the Disability Perception Gap. The resulting report examines the attitudes and prejudices that disabled people face and also the perception that the public has of disability.
More specifically the pain from nerve root damage in my back is uncontrolled. Driving me insane! Those of you who have been Pals for some time will know that this pain is usually tamed by my spinal cord stimulator – an implant that scrambles the pain signals to my brain – but this week there is a battle going on between my body, the stimulator and my head…..physical, psychological and emotional. The heat and humidity is ensuring that the other pains in my joints and soft tissues are also flaring and my autonomic nervous system has frankly gone haywire.
The changes in air pressure and temperature have always affected the metal skeleton that bolts the bottom of my bony spine together. This spinal fusion currently hurts – it hurts at the immediate vertebra level above the fusion (my EDS means the spine overextends even more due to the bones below being fixed); it hurts in the bones that have been cemented and screwed together with titanium nuts and bolts; it hurts in the surrounding muscles and soft tissues trying to hold the whole lot together. In fact as it starts to feel more stormy, I am certain that the titanium is about to break loose and rip through my skin, which feels like it is stretched tighter than a drum.
I feel that I should at least be able to use this time and be useful. Write, read, catch up – but the symptoms have a way of robbing that time and creating a thick pea souper of brain fog and fatigue. Concentration is poor and I seem to spend periods of time lying on the floor, unable to do anything – this post is taking hours to write.
I am irritable, stroppy, snapping at the family. My patience level is zero.
I feel that I let myself and others down as I crawl between the sofa and the floor and bed. I know that staying still is the worst thing to do, but is is tricky to keep up that physical exercise that we are told we must do when in the thick of a flare. There is so much advice out there for coping with flares and chronic pain, the majority well intended, but there is no one size fits all or one quick fix. We are all different.
I have made this flare worse! Wise? Probably not. Worth it? Definitely! Tuesday evening we attended Prize giving at the lovely girl’s school – she protested that I didn’t need to go, but I was determined I would see her mount the stage! It was hot, there were performances, there were presentations to the year groups, there were presentations and words about every girl leaving the sixth form, there was the guest speaker’s speech. Then there was yours truly sat in my wheelchair – slap bang in the middle of the front row! A perk of needing more space to accommodate your wheels, but a definite disadvantage for quietly creeping out. When the dodgy shoulder slipped out of socket and the neck and whole arm started to shake with spasm, I couldn’t even have a sneaky puff on my Medipen CBD vape – best birthday present ever!! (more of that in another post). Might have raised a few eyebrows!
It was tough sitting still for so long and I had the feeling that my head was too big and heavy for my neck to support – lollipop head, but the guest speaker, an old girl of the school, left a lasting impression. Currently a senior figure in one of the “Big Four” accounting organisations, she spoke to the students about achieving their potential in whatever they chose to do – she said that whilst she knew she would never be saving lives, making significant discoveries or winning a peace prize, she had tried to be the best version of herself.
“Be the best version of yourself” – isn’t this something worth striving for no matter our individual circumstances? I have been thinking this week that even with a chronic illness there still a best version of you and of me. It may not be the same version from 20 years ago, and it sure as hell isn’t the best version that I had envisaged, but isn’t that true for everyone? Circumstances change and so do we. The 18 year olds who released balloons from the drinks reception after the ceremony have their lives ahead of them – exciting futures that will mould them and change them.
I won’t lie – the best version of me has not been a pretty sight nor one I particularly like this week! But it is something that I will strive for, and if my semi-adult kids can learn from this and try to be the best version of themselves, then I can be happy.
OK not quite a film star! I might have mislead you slightly in the title, but I hope it got your attention. Hollywood is not calling any day soon, and I don’t think the beautiful girl is destined for a career directing or behind the camera, but we did laugh whilst doing our bit for “We Are Zebra Strong”! I tried very hard to involve the younger zebras from the PainPals house, but when I suggested appearing in front of the camera the response was along the lines of “in your dreams”!
We are nearing the end of Ehlers Danlos Awareness month – and awareness month for many other chronic illnesses – but for those of us living with these bedfellows the awareness is a daily reality, not just a month rolling around annually.
Chronically Jenni has once again put together some videos sharing lives of fellow zebras – in fact she had so much material this year that she made 5 Youtube features. If you watch closely you might find yours truly in the mix!
Please take a look – bookmark for later – share with friends and family. Just getting the name out there raises awareness for us! Details of fellow zebras can be found on Jenni’s channel.
This is a blog post from Caz at Invisibly Me blog marking:
International Awareness Day – ME/CFS // Fibromyalgia // MCS – 12th May 2018
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Today I’d like to do my own little tribute for the International Awareness Day for Fibromyalgia. It’s a little in advance as I’m sure that come Saturday there will be many posts on this.
Fibromyalgia has long been looked upon with scepticism, with many individuals and medical professionals doubting its existence. Some have regarded it as an umbrella term for lack of an officially recognised diagnosis, while others have intimated it to be psychological. Recent years have thankfully begun to shed light on this condition. Tireless campaigning has helped to raise awareness, increase understanding and has worked towards official recognition. But the fight isn’t over yet. There’s a long way to go to reduce stigma and improve both diagnosis and treatment for those dealing with fibromyalgia.
I was officially diagnosed with fibro by my rheumatologist last year after dealing with symptoms for years, initially thought of as being due to other conditions, that there was nothing wrong with me or perhaps that it was in my head (which they also said about my stomach issues, and here I am now, with a stoma!) For a while, I had asked to avoid labels and ‘umbrella terms’, mostly for fear it would signal the end of the road. I didn’t want them to stop looking for causes and the root of the problem, leaving me forever feeling worse and with no real way to get any better. I wanted them to keep looking, to figure out what was wrong, how my life has taken such a turn so quickly and left me like this for so long. The official diagnosis is to be reviewed in the near future due to overlapping symptoms between fibro & ME and the query over whether it’s both.