Today is Rare Diseases Day and I was delighted to be asked by Elizabeth on Despite Pain blog to share my story of having Cauda Equina Syndrome, alongside Tom Seaman who has Dystonia; Jenny Jones who has Familial Adenomatous Polyposis and Short Bowel Syndrome; and Zoe (aged 12) who has Chronic Recurrent Multifocal Osteomyelitis.
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Supporting People on Rare Disease Day – Despite Pain
It can take a lot of courage to discuss health issues with friends and family, but sometimes people put their own health in the public spotlight to help others.
When someone has a rare disease, there is often very little information and support, therefore, what these people do really matters so much to so many people. Sharing their stories matters too.
To read the rest of Despite Pain’s post and to read MY story please click here
The lowdown on Cauda Equina Syndrome
What does cauda equina mean? Well quite literally it is the horse’s tail and the bunch of nerves exiting the base of the spinal cord resemble a tail.
Cauda equina syndrome occurs when something invades the spinal space and compresses the cauda equina bundle of nerves. Most commonly this is a lumbar disc herniation (as in my case where the disc completely ruptures).
The defining symptoms for CES are
Sciatica (neurogenic pain) in the lower back and radiating down one/both legs
Bladder dysfunction usually leading to retention but occasionally to frequency, change in flow or incontinence
Altered perineal sensation or lack of feeling in the “undercarriage”!
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”.
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.
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.
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!
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!!
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.
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.
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!
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.
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?!
Please note this has been written from my personal perspective
Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began. Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial. Just over two years ago I became the recipient of an implant. So much has changed in this time.
The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage. Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature. I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.
All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!). So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick! Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly. Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty. She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to. Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain. I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.
So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too. At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine. The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue. But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily! So when the nurses express surprise to see me so altered, it won’t be because the scs isn’t working – would I have it done again? In a heartbeat as it has given me a way to manage some of the pain.
But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain. They might not be able to get rid of the rust, but will report back when I am wired for sound!
We are now well and truly into the countdown for Christmas, PainPals, so it seems only right that Monday Magic for the next couple of weeks will become Christmas blog posts for you! Here in the UK the old song “It’s beginning to look a lot like Christmas” is very true as a blanket of snow has enveloped great areas of the country. The snow here south of London hasn’t settled, but other parts of the country have ground to a halt with schools and Christmas markets closing, ice rinks shutting and grid lock on the roads. Those of you in other parts of the world accustomed to snow must look at us and laugh…..
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So it is bitterly cold – pretty awful for the nerve pain – the Christmas tree is bought and just about decorated and the outside lights are up…..but only half are working! Aghhh. This weather is pretty grim for us spoonies and believe me that the cold and damp really do make a huge difference to our ability to do things. Friends, please still ask us to parties and carol concerts, but don’t be too upset if we have to bail at the last minute. I for one will always get to a party if I can!! At the moment though the cold, nerve pain and spinal cord stimulator are doing a manic battle in my back and leg!
On a family note, for those who sent such lovely messages when I wrote about my lovely girl and her friends’ exams – she did really well and is so pleased. So fingers crossed for next summer. Meanwhile the art coursework takes priority….
I have really enjoyed reading some fantastic Christmas posts over the last few weeks and have pinned many. This is a selection of just a few – they vary from traditional recipes(check out the slow cooker hot chocolate – gorgeous), a Christmas book review, gift ideas for the family and for those with chronic health, ways to keep stress at bay and some classic Christmas movies. But to start off I’d like to direct you, with some mulled wine or cider in hand, to a Christmas limerick….enjoy!
Good Morning, all! Hope that those of you enjoying a Bank Holiday are having a fantastic day, and that everyone else has had a great weekend!
The weather is beautiful here and we have a family BBQ planned for later in the day – coincidental, but it just happens to be my parents 52nd wedding anniversary. Dad would tell you that he would get less for a life sentence!!
A very good friend contacted me earlier in the week with the sad news that her mum had died. She has been living in a nursing home for several years now and has gradually deteriorated, but in recent weeks she took a turn for the worse with a bad chest infection and just wasn’t strong enough to fight it. This week has been very hard for my friend, her brother & sister, and particularly her dad. They had been married over 60 years. It struck me that no matter how old or how sick a loved one is, the sense of loss at a death just can’t be anticipated.
When I received that message my own mum was here and I should probably point out that we have a great relationship. She has been staying with me whilst the family have been away and has effectively been my carer again! Talk about turning the clock back, becoming the child again. I felt so dependent physically and even a short car journey left me struggling, but it never fails to amaze me how that parent/child psychological bond is always there. No matter how old you are, it is always possible to feel like a teen again! A naughty teen at times! Seriously though, thanks mum, I couldn’t have managed without you.
This week I have been able to spend time finding new groups and meeting new bloggers online. So the inspiring blog posts I have for you are from a mixture of sources – one of them being the Facebook group Big Up Your Blog! – run by Suzie from “Suzie Speaks”. I have included her post about self censorship on our blogs – it is something all bloggers should read, no matter what your content matter. I think that I have probably failed miserably on all counts!! There is also a beautiful poem about a relationship break up, the role we play ins supporting new mothers emotionally and a shout out for a new disability campaign for parents later this year.
Hello and Happy Monday! I hope that you have all enjoyed a relaxing weekend and are ready to face the week ahead.
This past week has offered us a smorgasbord on the world stage from the battle of words between the White House and North Korea to the retirement of possibly the greatest athlete to date, Usain Bolt. As America’s top military officials arrive in South Korea and the leaders of China and Japan speak out publicly, let us all hope that this becomes no more than a war of words, not only for the the people of Guam, but for the world at large.
Over the last week our household has been glued to the IAAF World Athletics Championships. There have been some amazing highs and some breathtaking lows. Athletics on the international stage is experiencing its own war at the moment: doping scandals, athletes fighting to prove that they are “clean” and able to compete, medals being stripped and bans imposed. The public made their feelings very clear with the booing of US athlete Justin Gatlin – an runner who has served 2 drug related suspensions and has become the representative bogeyman of all those accused of doping.
But we can also view many aspects of the championships as beacons of light in our allegory for world peace. The final track races of sporting legends Usain Bolt and Mo Farah didn’t end as fairytales do, but instead showed these remarkable men to be human. They both won medals – just not the colour that everyone hoped for. If Farah’s races had been the other way around and he had won his silver first and the gold medal last would this really have altered his achievements – or just the way his final race was reported in the media. I don’t believe that anyone wanted to see Bolt fall in pain to the track rather than finishing his final race, but he showed his strength of character by returning to take a final bow for his international fans as the games closed. Out with the old guard….but in with the new. So many talented young people have sprung onto the world stage this week showing a spirit and enthusiasm that fires up even a chronic illness old crone like me! There have been inspiring stories of overcoming injury and surgery, tears of disappointment and tears of joy. For me a really memorable moment was when the Syrian high jumper realised that he had won a bronze medal, the first ever World Championship medal for his country. The disbelief and ecstasy on his face told such a story of this man who lives and trains in war torn Damascus. What an inspiration to us all!
You must have wondered where that was all leading, but it can only be to one place – one set of inspirational people to another! So grab a drink, sit down and allow yourself some “me time” finding and exploring some inspiring posts from some more inspirational bloggers!
Another week, another Monday – so that means one thing here at PainPals! Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!
There have been two major events in our house over the last week. The first was a long awaited appointment with a geneticist for the beautiful girl(BG). I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation. Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis. My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18. So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18! Then the children’s department decided that they really weren’t the right people to see the BG. Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.
Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating. Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history. The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself. No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems. Ringing bells in my ears!!! More of this in another post…..
The second major event was our old dog Sam having a massive haircut with our fantastic groomer. Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back, hips and rear legs. He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy! He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.
Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before. Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health! Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great! If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.
Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends! The first post is a shout out award for all us spoonie bloggers!
Having suffered with chronic pain for many years, I know first hand that at times it can feel like there is little support out there for sufferers. It was after using some of these websites myself, that I was inspired to start writing Pain Pals, to document my journey as I had my spinal cord stimulator trial for the chronic pain due to nerve root damage in my back. My underlying chronic illness, Ehlers Danlos syndrome, has caused me even further deterioration and pain……meaning that I continue to look for support in day to day life.
This blog post from Barbara details some great sites that might be able to offer you or a loved one pain support:
My first choice has to be A Way With Pain – I was first introduced to this site back in 2013 after seeing an article on Julia Kelly a chronic pain sufferer, and founder of the charity A Way With Pain . In her Father’s words about Julia’s chronic pain,” Whilst the levels of pain and financial pressures have not changed, her positivity, self- confidence, and self- esteem are slowly returning. …..
I have to share this post with you from My Stripy Life blog – a fellow EDS zebra. Except part of this post has been written by 7 year old Rubie and incorporates a review of her favourite story. Enjoy……
“The story tells of a prince who wants to marry a princess, but is having difficulty finding a suitable wife. One stormy night a young woman drenched with rain seeks shelter in the prince’s castle. She claims to be a princess, so the prince’s mother decides to test their unexpected guest by placing a pea in the bed she is offered for the night. She covers the bed in 20 mattresses and 20 feather-beds. In the morning she asks the princess how she slept. ……..
For decades I have related to the story of the Princess and the Pea. As a child I was always tossing and turning in bed at night uncomfortable…………Now, I have my own princess who feels every bump in her bed and is finding parallels with this story and her own life. When she had to complete a book review for homework this week on her favourite traditional tale she immediately chose this story……”