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

 

 

 

 

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.

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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.

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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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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

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.

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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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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

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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

SONY DSC

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