Life has got in the way of blogging over this holiday period. Between the Christmas preparations and festivities, and the odd body failure here and there, time has flown by……but I am sorry that I haven’t felt up to using the computer screen even to wish my blogging friends a Merry Christmas and missing a Monday Magic!
Now we are in the no man’s land period between Christmas and New Year, when no one can quite remember what day of the week we are at. I have had so many posts in my head ready to write and not one has made it to the page – I blame brain fog, POTS and a dislocated shoulder and ankle….plus a house full of young adults, big shoes, the dog and mess! More of their antics on Monday Magic tomorrow.
Here I want to extend very happy holiday wishes to you all….and a few pics!!
The tree is up, new lights adorn the outside of the house and the Christmas cards are written. The young engineer returned home and found glitter and sparkle adorning the house – much to his disgust….Mr Grinch!! but then he has the cheek to criticise the lights in our hallway – too bright, too harsh – and presented me with a box of soft white lights to use instead. Not a “I’ll change them for you, Mum” but rather a “put these up – they’ll look nicer”. Needless to say the lights have not been changed.
This weekend brought the return of the middle child – the politics student – home from university for Christmas. An enormous suitcase returned on the coach with him and I have a sneaky feeling that his entire wardrobe is in there ready for the washing machine. I wonder how quickly the clothes will make their way downstairs and into said washer? Hopefully before the smell invades the rest of the house!
Hubby and I have worked our strategy for the Christmas shopping – early, local trips that don’t last too long and then home to collapse for the rest of the day. I think that he will find himself doing more of the wrapping this year! A couple of achievements have been that we managed my old school carol service last week and a family meal out last night with our kids, the eldest’s other half, mum and dad, and my brother and nephew.
The preparations for Christmas can be stressful – the food, family dynamics, shopping, expense, parties, having enough hours in the day. If you read my post yesterday – a letter to my chronic illness – you may have some understanding that this stress can be so much worse when paired with health problems, physical and mental. Amongst the posts this week are several offering suggestions to help cope with stress, to plan and to make checklists. There is a fab post of creepy Christmas legends, some wonderful magical moments and some lovely Christmas poems.
So grab an eggnog or some mulled wine, sit back and with a week to go enjoy some great Christmas posts.
It is such a busy time of the year when everyone is supposed to be jolly, enjoying the madness of Christmas shopping, wrapping gifts and dressing for parties. You probably don’t know, but food and drink play a huge role in the festivities – meals out with loved ones, chocolates and nuts, mince pies and egg nog, Christmas cake and plum pudding. The television is overflowing with chefs telling us how to prepare for a magnificent feast timed to perfection.
Shop fronts and homes are transformed into a winter wonderland as decorations and lights sparkle. The smell of a real Christmas tree invades the crevices of many a house, this one included. The sights, sounds, tastes and smells of this time of year can be truly wonderful – glitter and glamour, carols and Michael Buble, cinnamon and nutmeg, mincemeat and mulled wine.
I want to enjoy it. I want to take part and accept invitations to party. I want to bake and give gifts to friends and family. I want to feel joyful.
You are my closest companion – with me 24/7, you know me better than anyone. But the Christmas message doesn’t seemed to have reached you.
You hinder me and slow me down, meaning that I can no longer join in how I want to. The invitations turned down at the last minute, the exhaustion after one trip to the shops, the increased difficulties dressing the tree and “decking the halls”. The guilt at putting more on loved ones, being unable to host parties or bake up a storm. The food once so tempting, now leaving only discomfort and tears.
You watch the weather and as the cold and damp creep in with the winter, you ramp up the chronic pain leaving my body struggling to leave bed, let alone leaving the house. My hands fumble over Christmas wrapping, my back fails to keep me upright, dislocated joints reach a new level on the pain charts.
The expectation that Christmas should be “the most wonderful time of the year” is not the perfect mixer for brain fog and reactive depression. Some days it is a toxic cocktail.
But as you are my constant companion, I must teach you about the festive season and in turn you must teach me how to live it with you cradling me. I will try so hard to feel acceptance of you rather than resenting limitations that may be placed upon me. When I feel you knocking at the door, I will learn to slow down, to say “no”, to pace myself. My limitations will become my strength as I enjoy a slower, quieter but no less precious time with loved ones.
I know that you won’t be taking a holiday for the festive season. I know that neither you nor I can guarantee how present you will be at the festivities from hour to hour, day to day. But I do know that we must rub along side by side and cope in the best way that we can. If an outing to a party is skipped or a visit to relatives proves too much, then so be it. If it is impossible to throw off a low mood for festive cheer then so be it.
We will wake together each morning and go to bed together each night. Just like every other day, we will take the holidays as they come……but perhaps now that you know Christmas is coming, you could loosen your cradling arms just a little and give me some slack?
How are your Christmas preparations going? Are you the type of very organised person who has already bought and wrapped the gifts? Or maybe you are more like our household…..
The lovely girl has just returned from Vienna where she and class mates enjoyed a trip to the Christmas markets and the historic city. When I asked her if she bought anything the answer was an incredulous”no”…. why on earth would you think to buy any gifts in a Christmas market? But she did have a fantastic time, returned exhausted and is now full of cold! Despite now earning money, Christmas shopping will pass the young engineer by completely until I get a panicked call on the 23rd or 24th December asking for ideas for everyone and “also, mum, do you have any wrapping paper?”. Our politics student isn’t due home until next week and has several pieces of coursework to hand in by the end of term – I believe it is known as pulling all nighters or as lastminute.com! He has always been the best at organising Christmas shopping but with his current lack of finances……..
Then are the Christmas cards to write and post. “Kids do you want some cards to send to friends/customers/family? Maybe you could help me write some” “Mum, why would I want to do that?” “No one sends cards to each other!!” – you get the picture, although they did work out that sending cards to customers on their newspaper rounds could result in Christmas tips. So we in the PainPals household are not evenly slightly prepared, although hubby and I did purchase some new lights last week and counted the vast number of houses already well adorned on our trip up to London on Saturday night.
This trip to Westminster was my big achievement of the week as hubby and I went to see the very talented Katie Melua in concert, supported by the Georgian Gory women’s choir. Together they made sounds that were almost too pure to be human voices – absolutely stunning! Yours truly made a new friend in the form of an elderly lady as we found our wheelchairs parked up close and definitely in each other’s personal space. She couldn’t understand why the choir weren’t singing something more “jolly” for Christmas – I did try to explain that Katie Melua sings a particular type of popular music and the choir back her! Her ticket had been booked by a well meaning son and she had no idea what she was coming to see, but we had a giggle!
I have been gathering some more Christmas related blog posts for you over the week and hope that you will find something here to 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
It is December and many households have begun the month with the opening of Advent calendars. Gone are the calendars of my childhood where a picture of an angel or a sleigh nestled behind a cardboard door, to be replaced with calendars filled with chocolates, beauty gifts and some even alcoholic delicacies. For the first time in years I am the only one in the house with a calendar and mine contains pamper gifts, perfect for a chronic spoonie who is in need of a bit of “me time”. To the embarrassment of the adult kids, I am posting pictures of the lovely little bottles of niceness on Instagram each day!
This week hubby and I had a double cause for excitement on a night out into London. It was a Christmas/thank you drinks evening hosted by the young IT engineer and his business partner in the 5cc bar situated in the grade II listed Singer sewing machine building in the City, London. As “the parents” it felt rather surreal! Our boy turned into a man in front of our eyes as he and his partner spoke with the investors, clients and share holders for their new tech enterprise. Whilst the young engineer lacks in confidence in his ability to speak with people yet speaks “computer” as a native tongue, his partner compliments him beautifully with a personable, confident, easy manner and effortless, articulate way at speaking with and putting others at ease. Hopefully their combined ideas, IT acumen and youthful ambition will be a winning combination for a successful venture – just don’t ask me to explain what they are actually doing!! We were very proud parents – who actually didn’t put a foot in it, at least not too deeply, and were actually described as “cool”.
This was our very first venture out on the train with my wheelchair! We have tended to drive into London since my mobility had decreased and pain increased, but the thought of driving into the City at rush hour and then seeking out a disabled parking bay was not appealing. We travelled on the Thameslink line, which is a newer line and as such has modern trains with designated accessible carriages, and I appreciate that this makes travelling easier than it might be on older lines. But I can’t fault the assistance that we were given by rail staff – someone was waiting on the platform with ramps to see me onto the train and he phoned ahead so that another staff member was waiting on the platform for us at our destination. Our journey was comfortable and relaxed, taking a fraction of the time that driving through rush hour London would have…..we will take the train again!
Sticking with our December theme, the blogs that I shall share leading up to Christmas will be as wide a variety of winter festival posts that I can find. They won’t all be about the joys of the season, as for some it is a difficult time, but I hope to bring you some great reading! Enjoy.