Accessibility Day at Gatwick Airport – Air Travel with Chronic and Invisible Illnesses

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Last month I was fortunate to be invited to attend a special day at Gatwick airport to receive information about the Accessibility plans that are in place for travellers.  We – hubby and me – joined a small band of fellow EDSers (Ehlers Danlos syndromes) and other families with mobility issues, autism, Alzheimers and various “invisible” chronic health problems in order to experience “a practical overview of airport processes before actually travelling”.

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Travelling can be a stressful experience at the best of times, but add a disability/special need/illness into the equation and this stress is magnified 100 fold.  Accessibility issues affecting wheelchair travellers have recently hit the UK national press with the stories of BBC journalist Frank Gardiner and athlete Justin Levine.  Each man arrived at his destination to find that his own wheelchair had been lost, resulting in Mr Gardiner sitting on the plane for an additional 90 minutes after landing at Heathrow and Mr Levine rejecting offers of an attendant wheelchair at Luton.  Whilst Gatwick and several other UK airports have previously run Accessibility days, this particular session could not have been better timed in order for the airports to improve Accessibility profiles.

Landside

Each family was allocated a time slot and we were met at the Virgin landside airline desks where we  were checked in and given the recently launched sunflower “hidden disability” lanyards.  The distinctive green and yellow lanyards are to allow staff to easily identify travellers who may need additional assistance, but might not have an immediately obvious disability.

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Chronic pain, autistic spectrum disorders, Alzheimers and dementia, fibromyalgia, chronic fatigue syndrome, Ehlers Danlos Syndrome, IBD/Crohns/Coeliacs, mental health disorders are just a few of the many conditions that might benefit under this scheme.  Members from both the police dog handlers and the border patrol were present to welcome us but it was  their beautiful dogs who stole the show.  Eighteen month old springer spaniel pup Gracie was a personal favourite of mine!

Do you know that there is an Accessibility and Families’ check in and security?  The whole process for the average traveller has changed so much in recent years and it can feel that everyone is wanting to check in at a million miles an hour……electronic check in from home, travelling with hand luggage only, business travellers wanting to get from A to B in the least time possible.  How does it feel if you take a little more time than the average person, if your child doesn’t understand what is happening, if anxiety turns into a panic attack?  We were assured that the Accessible and family security can be used for anyone who needs a little more time, space and understanding.  I wonder how many of you have used this facility?  Please share your experience!

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Pictures courtesy of Maria Cook

Last weekend Virgin airlines and Easy Jet were our hosts for the day, but I believe that other travel providers have played the host role in different locations around the country.  This was my first time to go through airport security since having my spinal cord stimulator implanted for pain control and in the same way that I am not able to go into an MRI scanner, the magnetic fields in the security scanners prevent me from going through the arch.  Like a pacemaker, the magnets in both devices would cause damage to my battery/programmer needing surgery to remove and replace the device.  I carry a medical alert card like others in my position and whilst my condition is now “visible” due to my wheelchair, for many with chronic pain and a similar implant, it would be impossible to see their chronic condition.  The security staff responded well to my needs and as hubby put my bag on the scanner and took himself through security, I was taken round the other side of the scanners and whilst remaining in my chair, a female office carried out a simple body search.  I passed and didn’t set off a single alarm!!

Airside

First stop – the “V” room.  This is Virgin Holidays’ new lounge in the North terminal which is for the use of Virgin customers booking a Holiday/Flydrive Package – it can be pre booked or booked on the day for each passenger.  We were treated to hot drinks and a tour from very attentive staff who are eager to please and answer queries.  I know that this is part of their jobs, but we were impressed by the welcoming demeanour, general knowledge and the care shown to us.  

V lounge

If you are not on a Virgin package or do not wish to pay to book the lounge, Gatwick North terminal has a newly opened Accessible “Quiet” lounge area located within the departures lounge and shopping area.  Here it is possible to sit in more comfortable seating, away from the crowds with screen information to monitor your flight and yet still be close to the amenities and eateries in the departure lounge.

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Fellow zebras taking advantage of wheelchair assistance!

I was using my own wheelchair and pushed by hubby, but there are many of you who don’t normally use a chair, yet walking through the airport prior to boarding your plane is just exhausting.  If you give the airport notice – 48 hours – it is possible to be helped by staff with a wheelchair, as some of our group did for their tours, or to make use of one of the accessibility buggies that you will have seen speeding through the airport.  My advice – don’t be too independent and insist on walking if this burns you out before even setting foot on the plane.  I have always been the world’s worst for doing this, but accept now that pride really can come before a literal fall!

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We were taken to the Sensory room next – the first area of its kind in a UK airport.  It is well recognised now that special sensory lighting, music and surroundings can greatly enhance senses and communication for a wide variety of sensory abilities.  My limited experience (when nursing) brought me into contact with such areas in children’s hospices and hospitals.  A room of this type can be extremely helpful for both children and adults with autistic spectrum disorders, physical and mental disabilities – I include dementia and Alzheimers here.  The room is airside and only for use by those passing through security – a 45 minute session can be booked at the special assistance reception in the departures lounge.  On the day youngsters in the room appeared to be having a great time, but there were few adults with disabilities when we had a quick “peek”.  There is a variety of soft play cushioning and this is geared towards those able to sit on cushions and beanbags. It is important to book ahead as there is an 8 person limit.  I think that the premise is fantastic and it is a very welcome addition to the airport experience – suggestions to add to this are:

  • for a further focus on use by adults;
  • to create wider aisles between the soft play areas for wheelchair access – the space is limited; 
  • to consider how different groups might relate to each other – adults, children, physically disabled, autism spectrum disorders, etc;
  • to ensure that the knobs and buttons on the activities are able to be accessed by those with hand problems;
  • to consider in the future expanding the existing room or have several sensory rooms to cope with the high demand that the facility will undoubtedly have!   Disclaimer: Please note I am not an expert and do not have autism

For someone like me who struggles with walking and stairs, the thought of using steps up to a plane is akin to climbing a mountain.  It is encouraging to know that if an aircraft is using steps rather than a jetty boarding system, Gatwick airport has a fleet of German Bulmor transporters that wheelchairs can be strapped into and lifted via a hydraulic arm directly to the door of the plane.  This allows the passenger entry to the plane in their own wheelchair to then transfer directly into their plane seat.  We enjoyed a short ride in the Bulmor and the experience of the cabin lifting and lowering, all whilst I sat in my chair.  For younger members of the party there was an opportunity to board the huge airport fire engines and to have a go at operating certain controls.

 

 

The part of the day that I was most excited about and also feared was boarding the plane – my greatest anxiety over the years has been the thought of feeling trapped in an aircraft seat and my back pain becoming uncontrolled.  I can move when seated on my sofa, in a restaurant or even the cinema, but sitting in a car or a plane is a different story.  Unless you have experienced chronic nerve pain, it is difficult to explain what may seem to be an irrational fear of an exacerbation of this pain and being unable to do anything about it.  I was able to remain in my seat up to the doorway at which point I got up from my chair and transferred into one of the first rows on the plane.  The Easyjet cabin crew were keen demonstrate that they can offer assistance and a comfortable flight to any passenger with accessibility needs. 

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Whilst hubby chatted with the pilot in the cockpit……

I was told about booking my seat in advance – it is advisable to pay the extra to select your seat for leg room, the aisle, to be near the loo etc etc – alerting the airport and the airline of your needs 48 hours in advance, and that my wheelchair would be stored in the hold after I have transferred to my seat.  Tip: take your seat cushion onto the plane as it is likely to be lost in the hold! The loss and damage of wheelchairs has been in the media recently and is a very real concern for many wheelchair users – one lady cited the issue of “which end of a flight did the damage occur to her chair?” as no one would take responsibility.  No easy solutions to this one as yet.  The current policy is for accessibility passengers to board the aircraft first, in order to have time to settle and as much assistance as needed without the stresses of other passengers.  Once in the seat there is a small onflight wheeled chair (similar to a fire chair) for those needing assistance to move about on the flight, go to the loo etc.  I did find the seat comfortable and was in the area with more leg room – I don’t believe that I or others with EDS/chronic pain/arthritis/ fibromyalgia etc would manage with less leg room and the angle of the back of the seat is very important too.  The new EasyJet seat backs are fixed and I am pleased to say that they are not in a too upright position, but I would be unable to manage in a fixed seat that was very upright as my SCS would be cut off due to the position in my spine.

I asked about facilities at destination airports and the staff were very honest.  Apparently there is a European standard for Accessibility arrangements but they are open to interpretation and this means that they will vary from airport to airport, country to country.  This is obviously the case when flying elsewhere in the world too, so the best advice that I can pass on here is to fully investigate your holiday plans, journey and the accommodations made at your destination prior to any bookings!

EasyJet have an Accessibility and Assistance manager, Celine McGuigan who is informative and very keen to make airport travel accessible to all.  She is also notably keen to understand the needs of the Accessibility community from those with very visible disabilities to invisible problems/illnesses – in fact she has made staff, including those at a senior level, spend time in a wheelchair in order to focus minds on accessibility issues!  The young members of cabin crew are also to be commended for their knowledge and enthusiasm to help without ever being condescending or frightened to ask me questions. 

Feedback from the visit:

  • just how accessible are the aircraft toilets?  They are very small and is there room for the small wheelchair and a helper to assist with a transfer?  (I am aware that this is an area up for discussion around the design of both aircraft and trains);
  • people with allergies, mast cell activation syndrome and similar can be very sensitive to scents – some have experienced problems with the scents used to refresh the cabins and I know that the staff were going to look into this matter;
  • for staff to be aware during a flight that with conditions such as EDS, joint pain and cramps are a common problem and the passenger will undoubtedly need to stand and stretch;
  • for many the standard seats do not provide sufficient room, yet the seats with more “leg room” can come at an extra cost which can be difficult to swallow for those on an already reduced income and/or families with young children
  • I know that they have been in the media, but to continue to highlight the accessibility lanyards and the fact that many adults and children with “invisible” conditions will be using them; work with the community who will be using them and listen to feedback regarding wearing a lanyard and the design.

I can only congratulate all the staff involved for such an informative and practical day at Gatwick airport.  More of these days across the country would be a huge benefit to so many people and the comments that I have seen from other groups have been very positive. My own fears have been put to rest and whilst I am under no illusions that air travel for me personally will remain tough and very tiring,  and of course I still have some concerns, I do now think that I can do it. 

So come on hubby….where are you taking me?!

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Photo courtesy of Dan McKenzie

Please note this has been written from my personal perspective

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.

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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

 

 

 

 

Unforeseen – Life’s Curve Balls – coming fast and furious

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!

Lifes Curve Balls - Poem by Patricia Grantham

Round and Round – My Zebra Journey #SoCS

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Round and round, up and down.  I seem to be moving along in my life but never getting anywhere!  When I look a bit closer I am travelling on a merry go round – round and round, up and down, a never ending circle that just doesn’t reach my final destination.  Others around me are on the travelator – the kind that you get in the airports or new supermarkets – and seem able to see their destination and even to jump on and off en route.

But my journey continues round and round, up and down as the ride continues relentlessly day in and day out.  When I look down I realise that I am not even seated on a brightly coloured galloping horse decorated in golds and silvers like the others accompanying me – yes there are others who seem to be at a stage in their journeys of being on a hamster wheel, unable to reach a destination.  Instead I am seated on a zebra – a stunning animal admittedly, and not so dissimilar to the horses around it in shape and size.  He has a mane, a tail, hooves and he can gallop at great speed.  To hear him coming you might mistake my trusty steed for a horse – but he is not, he has stripes and he is a zebra.

My companion on my life journey is different and I am unable to jump off the merry go round that he is firmly bolted to.  I raise my hand at fellow travellers passing by and the others joining me on my ride….every so often another zebra joins us and we continue our journey together. Up and down, round and round.

This is part of Linda G Hill’s Stream of Consciousness – pop over to her site, read the rules, take the prompt “Round” and start writing….then link up!

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Why the Zebra?

The Zebra has been adopted by the Ehlers Danlos Syndrome community as traditionally medical student have been taught throughout training that “when you hear hooves, think horses, not zebras” – think of the obvious conditions first, rather than the exotic and rare.  Thus in medical circles, the term “zebra” is used to describe a rare disease or condition and we EDSers are referred to as zebras!

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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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Photo by Ferdinand Studio on Pexels.com

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?

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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

Books, Reviews and Finding a New Purpose through Chronic Illness

When a person loses their “raison d’etre”, what do they become? Blood and bone and tissues.

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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?

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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.

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Photo by Harman Abiwardani on Pexels.com

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!

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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!

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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.

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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.

TBC

 

Thankyou to The Book Club on FacebookTracy Fenton, Netgalley, Love Books GroupKelly, Justine Sha at St Martin’s Press and the many authors and publishers who have entrusted me with their work.

Book bloggers

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Photo by Ylanite Koppens on Pexels.com

WEGO Health Awards – I have been nominated in two categories! #WEGOHealthAwards

2018-Awards-46This 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.”

WEGO nomination

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!

From the blog has come working with the disability organisation Scope, and I have been so pleased to be able to be the online Chronic Pain Advisor – even though my own flares have kept me away at times.

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!

Endorse me here: 

 

 

 

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.

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“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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June Link Up Party with A Chronic Voice

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I have been saying for months now that I would get my act together and join in with Sheryl’s Link Up Party over on A Chronic Voice…..so this is finally me getting my act together, just in time to sneak into June!  Sheryl provides prompts so that we bloggers can learn just a little bit about each other – and ourselves!

Prompts for the Month

  1. Reminding
  2. Pacing
  3. Surrendering
  4. Improving
  5. Flowing

 

Reminding

Over the last couple of weeks my kids lives have been galloping at  a great speed, reminding me that I really am that middle aged woman who stares out from the mirror!  The household exams came to a finish this week as our girl took her final GCSE – as a parent I have been through them 3 times and that is it, no more!  Then my baby went off with her bag containing a party dress, shoes and makeup to get ready with friends for their end of year party – I doubt that she will let me post a picture, so you will have to take my word for it that the girls looked beautiful.  Reminding me how long ago I was 16!

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I have been allowed to post – my lovely girl and her beautiful friend!

Son number 2 came home from his first year at university sporting a slightly shaggy, slightly ginger beard and looking skinnier and taller.  Last night the hall was suddenly full of very large shoes as a group of 19 year old males gathered for drinks and football before heading off to a party. “Don’t wait up!” reminding me yet again that my youthful days of partying are long behind me.

The final straw came in the form of a large white envelope addressed to son number 1 bearing the stamp of Companies House.  “This is really happening” said my girl at the realisation that her annoying big brother has finished university and is entering the big wide world with a tech Start-Up! Reminding me that I really do have adult kids!

Pacing

If yours truly had remembered all that I read on a regular basis and tell myself about pacing, perhaps today (Saturday) wouldn’t have been a “crash & burn” day.  It has been a major crash at that, meaning PJs and sofa all day.  But it is not every week that hubby goes away on a school trip to France and my birthday falls slap bang in the middle of said week.  Now of course hubby going away means that my new carers for the week are the kids, so pacing in the house goes out of the window immediately.  But add into the equation several lovely groups of friends wanting to take me out to celebrate and the kids actually arranging a meal out too, then there is the recipe for an epic failure at pacing.  It has been great though!

Surrendering

Recently I have recognised that “surrendering” to my diagnoses and accepting my limitations need not be a negative.  Too often we think of ill health in terms of “cure”, and with ever changing medical advances there can be an unrealistic expectation of the medical profession to be able to put everything right.  But the reality of many chronic conditions is that there is not a cure and the best that can be done is to manage symptoms and keep as healthy as possible.  I know that some people didn’t understand why I started to use a wheelchair when I can still walk, and they will view my surrendering as something very different.

Surrendering & liberating

June Link Up with A Chronic Voice

But for me surrendering to my conditions and accepting them has been liberating.  No, I’m not “giving in” and am definitely not negative, but rather acknowledging that to live my life in the best way possible way sometimes I need a bit of extra help.  If using a wheelchair means that I can still go round the shops, or on a family walk then so be it!  If I need to rest and binge watch on Netflix, I won’t feel guilty (that is a work in progress!).

Improving

Much to the disgust of my kids, I think that my computer and social media skills are really improving.  If you listened to them you would be forgiven for thinking that I am the mother who constantly posts pictures of my little darlings every move.  Get over your selves, kids – I have other things in life to tweet, post to Facebook and Instagram!!  I have finally swapped to a .com blog account with wordpress, I am now able to link up all the relevant SM sites on my book reviews, I have set up several Facebook pages and I am an admin to a group.  Of course when I asked the then student engineer to set me up a blog when I had my spinal cord stimulator, it was just laughable in the kids’ minds that anyone would want to read anything their dopey mum had to say.  But my followers have grown slowly and steadily from all walks of life, and this old girl is pleased to report ongoing, improving IT skills!

Flowing

I’m going in a completely different direction with this prompt and want to share some fun that we had a few weeks ago.  For the past couple of years I have made the birthday cakes for the daughters of a friend, varying from My Little Pony to Cat Woman to a magic unicorn tiered cake.  This year the brief was sent by the soon to be 8 year old in the form a photograph with attaching note – NO fondant or buttercream icing!  “OK, leave it with me” I said to mum, wondering on earth I would achieve anything vaguely resembling the finish on the picture.  Then I learnt about “Mirror glaze” cakes!!!

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The picture I was sent!

So, with cake made and Youtube videos watched and admired, the lovely girl, hubby and I set to work creating.  The covering is made using a combination of gelatine, white chocolate, condensed milk and a few other goodies.  Then the colourings are added before pouring the icing over the cake until it is flowing down the sides and completely covers the cake.  Depending upon when the colouring is added and how many are added to one layer will alter the final cake covering.  It was great fun, the kitchen saw more flowing condensed milk than it has ever seen but for a first time I was pretty happy with our Mirror glaze galaxy cake!

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Our cake!

 

Hope you have enjoyed my prompts!

Claire x

 

 

This Zebra becomes a Film Star!! #EDSAwarenessMonth #EDS

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”!

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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.

Find Jenni here:

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Blog: https://chronicallyjenni.wordpress.com/2018/03/14/chronic-illness-weekly/

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Thank you for watching!