Farewell to Me and Hello to Myself – Changes with Chronic Illness

I’ve been struggling to write, to take part in blog shares or blog parties. I don’t know why….brain fog, the constant nagging pain in a near permanent dislocated shoulder, stress from an adolescent, lack of pacing, all manner of things could be blamed….I just don’t really know.

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Farewell to Me

Hubby was clearing out earlier this week and came across some DVDs that he and my brother compiled years ago from my parent’s camcorder.  You must remember the black boxes carried by all self respecting tourists about 15 years ago?  Unlike the traditional camera with a film to be exposed and turned into photographs, the stream of moving images needed to be converted from a small cassette into a format suitable to be viewed on a home system – usually a DVD player by this time!  We had forgotten we even had them but, when the writing refused to flow, I have spent several afternoons watching short clips from 12 – 20 years ago.

 

A wonderful trip down memory lane from the eldest being an inquisitive toddler – did you really let him use let hammer and hit himself, Dad/Grandad?  – to holidays abroad with all three kids, to Christmases where departed family are still very much alive and laughing alongside the rest of us.  For me it was my young children that I was watching closely and shed a few tears when my lovely Grandad appeared with the then 4 year old politics student discussing a Ninja turtle gift for Christmas 2003.

But hubby told me today that he struggled to view the clips as he was watching me!  Why?! I wondered –  what was so interesting about me being mum….pregnant, with new babe and toddler, unwrapping presents, pushing a buggy, going to work. Hmmmm – that was it!  He saw me – how I was, always on the go, winging it most of the time, particularly around my back problems, pain and EDS.  Walking, running, playing, dancing, swimming, working.

Claire & Lucy

A particularly poignant moment was hearing our lovely girl’s voice, aged 2, telling Mummy and Daddy to cuddle as she zoomed the camcorder in on us – with a little help from her brother.  On hugging a little voice shouted out “Kiss!!” – we were on holiday in France and this was our last holiday abroad as a family as chronic pain was soon to strike.

Whilst I had not really seen myself, much less watched myself (who likes watching and hearing themselves?), hubby saw the person I was and remembered the person I became.  The woman turning 40, riddled with pain and opiates, puffed up with drug weight gain and lunging into reactive depression.  The woman struggling to be a wife and mother.  Sometimes it is easy to forget that this journey with chronic illness is not ours alone.  Our nearest and dearest live it with us, the good with the bad, the happy with the sad.

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The Moonwalk

When I mentioned her dad’s comments to the lovely girl, I did feel sad that her answer was that yes, she noticed it too as she can’t remember me before my symptoms took over and my general health deteriorated.  The mum on the film looks like me, sounds like me but is almost a stranger.  Or is she?

Hubby had the final say by reminding us all that it is possible to move beyond those awful middle years.  He says that I am me again!  It sounds a bit dramatic doesn’t it?! Accepting my situation, being pushed to come off the regular opiates in order to have a spinal cord stimulator and keeping as healthy as possible(!) has been transforming.

Whilst I will never be that thirty something who seemed to lose so much almost overnight as she turned 40, now as I look toward turning 50, I think that I can say that I am ME again.  I look in the mirror and as I look past the grey hair, the lack of sleep, the metal spine, the splints and mobility aids, I feel like myself and so I see MY reflection once more.

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Photo by Andre Mouton on Pexels.com

 

 

 

 

A Change in Season, a Change in Symptoms and Foodie Memories!

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.

A change in season pin

 

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.

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Photo by Pixabay on Pexels.com

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.

heart shaped fireworks

Photo by Kartik Gupta on Pexels.com

 

Make your own toffee apples with this simple recipe from the BBC Good Food site

Stream of Consciousness – Becoming Chronic #SoCS #Chronic

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?

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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.

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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?

shallow focus photography of cannabis plant

Photo by Michael Fischer on Pexels.com

Answers welcome!

This post is part of Linda G Hill’s Stream of Consciousness Saturday. Click on the link to find all the other awesome posts in the comment section, and join in! https://lindaghill.com/2018/08/17/the-friday-reminder-and-prompt-for-socs-aug-18-18/18d9a-post-comment-love-badge

Let’s Talk About Chronic Pain – The online #Scope community

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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Lets talk about chronic pain

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?

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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.

The full report can be read here.

Visit the Scope website to learn more about the support, information and community that the charity can offer.

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Be the Best Version of Yourself

I’m in the midst of a flare.

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.

Mauve balloons

“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.

I’m in the midst of a flare – but it will end!

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Best version of yourself

 

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Fibromyalgia Awareness – by Caz at Invisibly Me

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.

For full post visit Invisibly Me – and please share!

Ehlers Danlos Awareness Month Challenge! Spread the word and tell the world about EDS

EDS AwarenessTake the Challenge! (1)

 

This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!

Here goes:

  1. Hypermobile EDS
  2. Officially in 2012 aged 43, unofficially aged 20 as a student nurse orthopaedic surgeon told me I had Marfans syndrome (another connective tissue disorder),  also hypermobility & Mum’s and my long limbs/fingers noticed by a GP when aged 7
  3. POTS, migraine, Raynauds, difficulty regulating body temp, gut motility probs/gastroparesis, chronic back pain & cauda equina syndrome.
  4. Very….slightly less so now than as a teen!
  5. Moderate
  6. Wheelchairs, walking sticks, crutches, motability car
  7. Spinal cord stimulator implant, heat, drugs, more heat, cushions & stretching, yet more heat
  8. Mainly all back surgeries – laminectomy, pedicle screw fusion, redo of fusion with extension, spinal cord stimulator implant, x3 c/sections, minor shoulder & knee exploratory
  9. For surgeries, pain management, gut management
  10. Normal now is constant back and leg pain due to nerve root damage – managed with spinal cord stimulator, limited mobility, worst POTS symptoms in the morning after breakfast, at least one dislocation per day and generalised background pain, poor stamina, nausea & slow gut, unable to feel when bladder is full
  11. Flares vary – generally pain is far less predictable & out of control, brain fog/memory problems, fatigue, POTS flare when unable to even sit up without fainting, blood pooling in hands and legs, breathlessness, lack of concentration, visual and smell disturbance (migraine)
  12. Fab GP, Pain specialists, Cardiologist, Rheumatologist, Orthopaedic surgeon, Gastroenterologist, Urologist……
  13. In our local small supermarket with hubby – I had walked with a Smart crutch, but as we got to the checkout those familiar POTSy feelings came and I was unable to sit down fast enough.  Next thing I knew I was coming round on the floor, shoulder dislocated as arm stuck in my crutch, with a very nice young man at my side rushing for water…..hubby? Well having checked I was safe on the floor, he carried on paying for the shopping telling the bemused cashier “Oh, don’t worry she does this all the time”!!! Her face was a picture.
  14. This has to go to be shared by 2 physios, 20 odd years apart…..the first told me as a 21 year old student nurse that “You nurses are all the same. It is in your head”…..despite my footdrop, no reflexes, and double incontinence – corda equina syndrome!!! Following my second spinal fusion and discovering I had nerve root damage & thus permanent pain, my rehab physio decided she would be able to “cure” me.  During my second visit she told me that I needed to work harder to get some movement into my lower spine…..erm, I don’t think so!  There are enough screws and filler in there to hold up a kitchen cupboard – IT  ISN’T SUPPOSED TO MOVE, WOMAN!  We agreed to part company.
  15. I have been so lucky – but my pain specialist at St Thomas’s actually believed me and has made life bearable AND my cardiologist who also believed me and knew about EDS & POTS (I was so convinced my tilt table wouldn’t show anything)

I will save you from more wittering today and publish the second half later this week!

#FragileButUnbreakable #EhlersDanlosAwarenessMonth #ZebraStrong

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Not even doing the full bend here – don’t do this at home!

 

 

From the Lancashire Evening Post: Swimming star, her chronic illness and decision to retire from the sport #EhlersDanlosSyndrome #RareDiseaseDay

It is unusual for me to publish 2 posts on one day – but it is Rare Disease Day and this is another example of an amazing Zebra #EhlersDanlosSyndrome. The Lancashire Evening Post have kindly allowed me to share their article with you.  To view the accompanying video to the post please visit Lancashire Evening Post

Big Interview: Swimming star Stephanie Slater opens up on decision to retire from the sport

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As Stephanie Slater succinctly puts it, ‘To look at me, you wouldn’t think there was anything wrong’.

Indeed with her almost permanent beaming smile together with her bubbly personality, the Longridge lass – who won a glorious gold medal at the Paralympic Games in Rio – does not look anything other than ‘a picture of health and happiness’.

Congratulations on being an inspiration to so many and accomplishing your Olympic Dream!! Happy Retirement @StephESlater !!

However, the swimming sensation last week made the shock announcement that her pool career was over at the tender age of just 27 due to ongoing health issues.

It is a little known fact that Slater almost did not make it to Rio after struggling with a severe neck injury the year before.

After a series of tests, she was eventually diagnosed with Ehlers-Danlos syndrome and Postural orthostatic tachycardia syndrome (POTS) – conditions which she has unknowingly struggled with for all of her life.

Passed off by a series of medical professionals as just growing pains when she was a child, it is remarkable to think that Slater reached a level where she was considered a potential competitor for the 2012 Olympics.

Stephanie Slater

Exceptional Zebra, EDS swimmer Stephanie Slater

Stephanie Slater

However, the conditions would eventually put paid to her able-bodied career in the lead up to the London Games and almost curtailed any hope she had of competing as a paralympian.

Through sheer guts and determination, Slater made it to Rio and all the pain was worth it when she returned with a gold in the medley relay and silver in the S8 100m individual butterfly.

“It was actually touch and go as to whether I was going to make it to the Paralympic trials in 2015 – I was out of the water struggling with a severe neck injury,” Slater said.

“But with rehabilitation and just basically pushing myself, I managed to get the qualifying time.

Stephanie Slater shows off her medals.

Stephanie Slater shows off her medals.

“With the amount of pain that I was in, I was eventually diagnosed with Ehlers-Danlos syndrome.

“The condition is to do with your connective tissues throughout the whole of your body and basically mine is faulty. It means my body is not held together like it should be.

“I was also diagnosed with POTS.

“It was that condition which kept me out of the pool and preventing me from training because it causes you to collapse unexpectedly.

Stephanie Slater moments after winning her silver medal in Rio

Stephanie Slater moments after winning her silver medal in Rio

“So being around a pool made me nervous because I did not know whether I was going to collapse or not.

“Both of my conditions are invisible.

“To look at me you wouldn’t think there was anything wrong with me.

“But there is and it badly affects me.

“Because it’s so rare, they had not been able to diagnose it when I younger.

“I have had all these problems growing up and it was just put down as growing pains or that I had been doing too much training.

“It was just brushed off, but actually I have been battling with it since I’ve been a baby.

“It’s kind of nice in a way to finally have a diagnosis.

“At the same time, because there is no cure, it’s one of those where it’s like, ‘It’s got a name, but it doesn’t change anything’.

“I have just got to get on with it

“It answers the question of how I got the injury to my arm when I was training for the London Olympics in Swansea.

“Back then, they didn’t know why, but now there is an answer.

“Hopefully by stopping swimming now, I will stop myself from suffering any more nerve damage or even worse paralysis.

“With my neck, it’s quite fragile, so I have to be really, really careful that I don’t cause further damage.

“People can’t believe what I have achieved with what I have been dealing with.

“I have never complained about it or spoken about my condition and how it has affected me.

“At the end of the day, I wanted to achieve my goals and I wasn’t going to let anything stop me.”

There are certainly pangs of regrets for Slater that she has been forced to give up the sport she loves doing the most prematurely.

“It was really, really hard and it took quite a few months to come to the decision,” said Slater

“I spoke to a lot of medical professionals and also to my support team at British swimming.

“I had to make the hard decision to retire for my own health and well being.

“I always felt that I had a lot more left in me to give so that is what has made it really hard to stop.

“I know that it is the best decision for me and I have just got to look at what I have achieved.

“My last competition was Rio and the Paralympics, so it’s nice to think that I finished on a high – winning a gold and a silver.”

Slater’s memories of her time in Rio will never leave her and she breaks out into an even wider grin – if that’s possible – when she thinks back to her time at the Paralympics.

“It was just a party atmosphere,” she said. “The atmosphere was incredible.

“I remember doing an interview with Clare Balding in the village where all the different venues were and the amount of people who were crowding around us was incredible.

“They all wanted to speak to us and have pictures. It was amazing.

“I had been to the Commonwealth Games in Glasgow two years earlier and I was expecting it to be like that.

“But the Paralympics were so much bigger.

“Just the size of the food hall was incredible – it was like the size of four Asdas.”

Slater’s achievement in winning gold in the relay was a double delight as the team also broke the world record.

“The relay was between us and the Australians,” she said.

“That was how it had been four years earlier in London, but on that occasion it was the Australians who had actually pipped GB.

“When I dived in, I had to catch the Australian girl up.

“I just thought, ‘I have got to get the gold – there’s going to be nothing stopping me’.

“I just put my head down and went – when we touched that wall and we saw that we had broken the world record as well, it was such an amazing feeling.

“It was so, so nice to stand on the top of the podium and see the GB flag rise.

“All of the GB supporters were there with their flags and I could see my mum and dad in the crowd.

“That was really, really special for me.”

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