It has been a momentous week for several reasons. Hubby and I were planning a trip to visit his parents and true to form I was so unwell at the beginning of last week that it was looking like we would have to cancel….yet again. I am ashamed to say that it has been over 3 years since I last managed the 4 hour journey, in fact it was when I stayed with them after my spinal cord stimulator surgery. Please believe me when I say that it is not that I don’t love my in laws but rather that every time we have planned a visit my body has disagreed. There have been shoulder dislocations, POTS flares and neck problems – not forgetting that my chronic back pain prevents me from sitting still for long periods.
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Something that goes hand in hand with a chronic illness is unpredictability and then the inability to make plans – and the guilt at having to break plans. So when Tuesday morning dawned and I couldn’t sit upright, I felt that I had let everyone down yet again. Wednesday arrived and we decided to give it a go. The electric wheelchair was hoisted into the car, I was settled in surrounded by cushions, an Audible series was downloaded and we were away. It wasn’t an easy journey, but I made it even if I did have to swap one sofa for another!
I had a different furry friend to keep me company following a faint – Lexi the pug – and I enjoyed the freedom that my electric wheels gave me during a trip into Hereford city centre. My driving skills are improving! With the weather breaking in the UK my symptoms are more manageable now and the fainting is under control – would you believe though that the wet, clammy, stormy weather causes as many problems with this body barometer of mine as the really hot days?!
This week the lovely girl started work experience with big brother, the young engineer. How I wish I could have been a fly on the wall!! He wants her to help with design elements of…….um, I wish I knew or understood!
It seems to have gone well, but she laughed in the change in her big brother as soon as they got home reverting from boss to twit! The whole family has enjoyed playing with my latest toy that arrived this week – a recliner chair which has already saved me during a POTSie episode today as it will lay me almost flat. The young engineer was so excited by the integral USB port that he almost face planted on the floor when lifting himself to standing too far!! I will give you a chair review when I have had it for a couple of weeks.
So back to business and sharing some great blog posts with you. I have found a couple of posts about writing – for lovely Ritu the publication of her novel is in sight (if it is as good as her cakes it will be fab) – tips to boost your family’s health, and some lovely posts from chronic illness pals. So sit back with a cuppa and enjoy!
Another week and here we are in May – so it seems perfect to have a little May Magic as Monday came and went this week! It has been a perfect day in south London – sunny, bright and mild – what better way to start the month.
Hubby is away this week with the year 5 classes for an “outward bound” style activity holiday – or to put in in layman’s terms…..archery, hiking, zipwires, pylon climbing and more with 60 nine and ten year olds. Of course hubby has the boys’ dorms under his care after the activities finish for the day, and his comment to me on their first night was “I knew it was going to be challenging when we started our first task of bed making and one of them actually said ‘what’s a duvet?”!!”. They usually arrive home with damp kit, a bit smelly and absolutely shattered…..and that is just the adults. This year they have a bank holiday weekend to recover and I know that the adults will appreciate the extra day for R&R.
This leaves me at home with my offspring. The eldest has just returned from a surprise birthday weekend away in Dublin – lovely treat from his better half – and is now looking forward to the first package in his gift from us…..a subscription to Pong Cheese Club. Watch this space for taste testings! My main carer for the week – the politics student – is nearly as much help as a chocolate teapot as he has succumbed to Ehlers Danlos Syndrome and dislocated his knee during a footie kick around. He managed to relocate everything to the correct position – you get used to doing this with EDS – but now cannot walk, despite my best efforts with tubigrip, a brace, crutches and painkillers. We must have made a strange looking team as we put the rubbish out today…..him on crutches, me in a collar and sling – there is definitely a joke in there somewhere about the number of dislocations in a household of zebras!!! (Why the zebra?)
I started saying what a beautiful day it has been and this led me to a big achievement, namely my first solo trip out in my electric wheelchair. It has been a while coming, but today I was due to visit my friend for a haircut and whilst mum waled there with me, I came home alone. I know that it sounds crazy for a woman of a certain age to be excited to get home under her own steam, but having that little bit of independence back after so long was both exciting and terrifying in equal measures. Fingers crossed that over the next few months my joystick control and pavement driving improves – it is very hilly here, but I have good brakes!!
There is a great selection of spring blog posts here and one in particular is close to my heart, as I was a specially trained head and neck cancer nurse in a previous life. The final listing is from Angela, and I think will strike a chord with all bloggers as she explains to her nearest and dearest that it is ok either way if they read her writing or not. So sit back with your favourite tipple and enjoy!
March is here and the weather has been so mild that it has felt like near summer some days, and definitely spring. The spring flowers are in bud, the trees are starting to change colour….and hay fever has raised its sneezy head in our house! Hubby and the lovely girl both have runny noses and itchy eyes, probably from tree pollen and moulds so out with the nasal sprays and antihistamines again.
It has been a busy week – well at least for my limited world – with several consecutive nights out. I saved my spoons by doing very little during the day and had a lovely night at the theatre to see Rock of Ages, followed by a mums’ night out and being taken to dinner by the young engineer and his better half! The theatre trip was exciting as my favourite from Strictly Come Dancing, the wonderful Kevin Clifton, was appearing – not as a dancer, but as a singer. Boy can he belt out a song!! The show is very slapstick and certainly made me laugh – and I must shout out for the New Wimbledon theatre making it a very easy and accessible visit for this wheelchair user. There is a special entrance with a lift to take those with mobility difficulties directly to the stalls and this is where the wheelchair and carer spaces are. We were able to order our interval ice-cream in advance to be delivered directly to us, and the accessible toilets were huge and well equipped. How can I go from talking about the lovely Kevin from Grimsby to the loos?!
Our mums night out had been arranged and was the height of embarrassment to our 16 and 17 year old daughters who can’t understand why their mothers might possibly want to go out and socialise. We ate, drank and chatted so well – not all about the girls! – that we were the last ones in the restaurant. Speaking of restaurants, the young engineer took us to a well respected London steak establishment just off Regent Street at the weekend. We drove and used the Westminster “Park Right” app to find a blue badge parking space – parking spaces of all types have a sensor to detect if they are occupied and this connects live to the app. It worked! I’m not sure what I had expected, but finding an empty blue badge spot just off Piccadilly Circus seemed too good to be true! The staff in the steak house were all helpful with the wheelchair and even said that they would put a ramp at the steps so that I could use the disabled toilet. Everything was going so well until I got to the top of the ramp and then couldn’t open the heavy door into the toilet corridor…..oh well, they tried!
Of course since yesterday I have found myself all out of spoons and the weather changed back to cooler conditions. So a perfect day to find some interesting blog posts for you and I hope you’ll agree that there are some great reads here. Enjoy!
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
A little while ago I mentioned my face to face medical review for my Personal Independence Payment and I had convinced myself that my standard rate would be reduced to nothing. I was geared up to go to panel and fight my corner, sitting here awaiting that dreaded brown envelope. When it did flop through the letterbox, I couldn’t even open it, I felt that sick! Duncan did the honours…..and I was stunned and delighted in equal measure to find that I have been awarded the enhanced rate for both mobility and care needs.
Of course I should be on this rate as my health has deteriorated so much in the last couple of years, with Ehlers Danlos zebras galloping at full pelt through my life. But the system is such that the applicant is made to feel they need to prove that they can’t jump through those hoops the DWP want us to. Anyway it has taken a couple of weeks to sink in, and to investigate the benefits to using the Motability Scheme – “The Motability Scheme enables disabled people to get mobile by exchanging their mobility allowance to lease a new car, scooter or powered wheelchair“. Last week Duncan suggested a trip to Peterborough – which initially didn’t thrill me – but it was actually to a Motability show….again probably not my first choice for a day out! But I arranged the impromptu visit to our friends that I wrote about on Monday Magic, and this would mean only driving one way on the day so off we went.
I must explain that Duncan used to work in the motor trade, so our car has always just turned up, sometimes been sold, often changed at a minute’s notice, but I have never really had anything to do with choosing a car. Of course this time our needs are very different and actually it was very helpful having many of the manufacturers who take part in the scheme under one roof. The volunteers for the Motability charity couldn’t have been more helpful and there were plenty of them handing out goody bags full of useful information.
The exhibitors included motor manufacturers, mobility scooters & electric wheelchairs, and companies who adapt the vehicles to your needs. We were able to book a test drive – although only in one vehicle as slots were limited and had been booked up by lunchtime. For us the real value was trying the vehicles for size without trudging from one showroom to another, and I have to admit that I hadn’t realized just how difficult it would be to find a car boot that would accommodate the wheelchair alongside shopping bags for those retail therapy moments, or a dog!
The MPV type vehicles that don’t require a large down payment just did not give us enough boot space, and we actually could not fit the wheelchair into one jeep – it is important to remember that this car is not yours, it is effectively a leasing agreement albeit an excellent one, so long as you don’t spend out too much in the first place as the car is handed back after 3 years.
However the sky is the limit and if you want to put down a large payment intitially, it is possible to have a plush car with all the trimmings – all down to personal taste & finance.
Having said this, we discovered that there are some excellent deals with some requiring little or no down payment for a really great car. The show definitely helped us to understand what we didn’t want/need and has ultimately this week helped us to choose and order a car that fits my needs on the scheme. With my back problems and the spinal cord stimulator, the seat position and shape is the most important thing – particularly the headrest. The electrode in my back which helps to control my chronic pain is very positional, so I only have to have a headrest in a car or the cinema push my neck forward, and Bang! the scs might just as well be turned off as I can no longer feel it.
Sadly the downside is that when my new shiny, estate car (yes, an estate that accommodates my wheels, my shopping and the dog!) arrives, I currently can’t drive it!
Little post script……I saw a couple of great looking electric scooters too. My fave was the Genny, but at £16k it is just not going to happen; but I wonder if any of you out there have this nifty little number – the Go Chair ?
I have just read a great piece on Jaime’s blog “I Told You I was Sick” and as someone who was given a walking stick – albeit a pink, sparkly stick – for her 40th birthday and now has a variety of aids including 2 wheelchairs about the house, this rings so many bells. Earlier in the week I watched a BBC programme called The World According to Kids and one delightful 9 year old boy was meeting his a wheelchair for the first time. This little lad has a very rare form of dwarfism and whilst fiercely independent, he is now getting pains in his legs when walking any distance. This prevents him from joining in with his family, taking part in activities with his friends and he described feeling sad that he had to be different. This lovely boy is truly inspiring and actually had me in tears.
It was during this that my lovely girl, who is starting to experience more subluxations and pains herself, said that she really wished that everyone could see mobility aids such as wheelchairs as “enabling rather than disabling”. Wise old head on young shoulders – that is my 14 year old! She has seen first hand what a difference wheels have made for me. So, please have a look at this great blog post:
“Anxious about considering a mobility aid to help you get around? The thought of your disease or condition getting to a point which requires mobility help can be heartbreaking. And, especially if you are younger, the embarrassment or ridicule you anticipate for having to use a mobility aid might be hard to swallow.