I woke yesterday morning very early, having only dropped off to sleep in the early hours. A couple of hours of unsettled sleep and I knew that my bedfellow, pain was going to kick me about for the day. Despite shivering in the cold early morning, there was that unwelcome yet familiar thin, feverish sheen of sweat all over my body that only comes with deep, intense pain.
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The strange thing was that I couldn’t quite tell where the pain was. Start from the feet and move upwards:
feet and ankles: pain, check; left nerve pain worse, check
lower legs and knees: pain, check; left nerve pain burning, check
thighs: burning, check;
hips: can’t move them, searing pain, check;
lower back: don’t even go there, hurts too much, check;
chest: every breath is creating pain somewhere else, check;
shoulders: both dislocated: do not move, check;
arms and hands: numb, yet burning, check;
neck: spasm and screaming, check;
head: did I drink last night???
face and teeth: really??!! Yes!
The problem with this pain is that when it peaks nothing will help to reduce it. No amount of drugs, distraction, heat or other remedies will help.
Pain is deeply personal. Your pain will be different to my pain. My own pains are different – the neuropathic back and leg pain I experience from nerve root damage is very different to my other EDS pains. Our pain might be in the same part of of bodies, but we will probably describe it differently and it will behave differently. The same bedfellow taking a different journey to reach the same location.
When my constant companion reaches these dizzy heights, even my spinal cord stimulator struggles to jumble and alter the pain messages received by my brain. Some professionals believe that chronic “neuropathic” pain signals are processed by the brain differently, making it more resistant and much harder to treat. I honestly don’t know and when it reaches these levels, I don’t care.
“Chronic or persistent pain is pain that carries on for longer than 12 weeks despite medication or treatment.” NHS Inform
“Neuropathic pain is often described as a shooting or burning pain. It can go away on its own but is often chronic. Sometimes it is unrelenting and severe, and sometimes it comes and goes. It often is the result of nerve damage or a malfunctioning nervous system. The impact of nerve damage is a change in nerve function both at the site of the injury and areas around it.” WebMD
There are many definitions for “pain” available and there are also definitions on American sites & Wikipedia for “intractable pain“.
The ensuing brain fog means I lose clarity of any situation and irrational behaviour follows. “Mum, why are you trying to do housework like a mad woman?” asks my teenage daughter…..just because!
because I can’t sit still
because my brain has gone into overdrive yet feels like candy floss
because I can’t think straight
because I can’t stand still
because I feel sick
because I have to do something
because breathing hurts
because doing nothing hurts
because doing anything hurts
because I don’t know what to do to make it just F.O!
Remember the old rhyme “Rain, Rain Go Away, Come again another Day”? Mine goes like this “Pain, pain go away, don’t come again another day!” In this state pain killers just make me vomit, they don’t help anyway. My beloved heat pad gives a little relief for a short period, but my body seems to know that the external temperatures have dropped despite central heating and layers of clothes.
This pain is exhausting and all consuming. Eventually I am overcome and sink into a heavy, pain ridden slumber under a weighted blanket yet wake several hours later unrefreshed and still in pain. What is to be done? Watch the weather forecast, curse the temperatures (I know Chicago and other places have it a LOT worse, but my body doesn’t know that and anything near zero degrees is horrendous), try distractions and sit it out knowing that this peak will pass.
Another day may feel wasted – another day of being unable to function, to be online with like minded pals, to read, to watch TV, to listen to music. But this will calm, it will reduce from the peak to a trough and tomorrow is another day.
So today….I am here, I survived. I am still in pain and currently sitting charging my spinal cord stimulator as I really can’t cope with turning it off during this cold weather. The Six Nations rugby is on and feel like I have been in one of those scrums! My other pains are vying for attention now….when the nerve pain is at its worst the others fade into background noise, but today the shoulder and gut pain are shouting loudly.
But here I am typing, smiling, talking and tomorrow is definitely another day!
Every month I have great plans to take part in link up parties and then life seems to get in the way of writing. One link up that I particularly love is Sheryl’s on A Chronic Voice where she gives prompts aimed specifically for people living with chronic illness to express themselves and share experiences. January seems like the perfect month to join the party again…..so here goes!
This is a great prompt for a new year isn’t it? It could also be very cheesy!
I think that I would like to be dedicating more time and energy to working with fellow bloggers this year. Sometimes I see others who give so much of their time to commenting on and sharing the writing of others (Sheryl at A Chronic Voice, Caz at Invisibly Me, Esme at Esme Salon, Sue at Sizzling Towards Sixty – to name but a few) that I feel a bit inadequate in my feeble attempts.
So maybe I should say that I will try dedicating my own time to working effectively and to stop procrastinating. I had a teacher at school (Latin) who used to ask us “what is the thief of time” to which we 11 year olds would chant “pro..cra..sti..na..tion” without having a clue what it meant. Sir…I get it now!!
I really need to start establishing some proper self care routines that will see me through both the good days and the bad days. For me self care revolves around reducing stress levels, which in turn will help keep the pain at bay. At the moment “self care” – healthy eating, regular exercising (in our neighbours’ gym – so lucky!), pilates, meditation, mindfulness, rest etc etc – or maybe I should just say putting myself first in my schedule, well it seems to come way down the list of priorities and almost feels rather decadent.
I’ve written before about chronic pain and illness being my constant companion and there are so many times that it feels like my companion is putting up barriers for me or tying me down in knots. I want to be breaking through barriers and ties, physical and mental, that are holding me back and stopping me from feeling like the person I used to be, being the person I can be.
This might mean breaking some of the rules that I self inflict and wrap myself up in – one is the need for a clean, tidy house! The biggest problem is that my idea of clean and tidy does not quite match with the rest of the family……this causes me more stress than anything else, and whilst I will try to be more laid back, this will be a tough one for me to break!
Breaking crockery is also something I’d like to do less of in my kitchen!! Dislocated wrists and thumbs frequently equals dropped plates and mugs……BREAKING!!
Strengthening has to apply to my core!! Whilst I was still mobile and fit, I practised yoga daily and attended classes several times a week, and had even been asked to train as a yoga teacher by my teacher! My back has been troublesome ever since my surgery aged 21, so it has been important to keep my core muscles strong to support my weak back. I wouldn’t boast a 6 pack, but I had a very flat stomach which pinged back after each of my 3 caesarian sections! But….since turning 40 and my mobility and health have gone into free fall, those core muscles have gone into hiding……apparently muscle memory is a thing, if I can only coax them out.
I am not very good at just allowing myself “to be” – to accept my own limitations that come with my condition, to acknowledge the bad but to celebrate the good.
I want to allow myself to take a rest without beating myself up; allow myself to say “no”; allow myself to sit and just be without feeling guilty. Most of all I want to allow myself to accept my conditions, warts and all – accepting is not a weakness, I believe it is a strength and liberating!
So there we have it – my ramblings to add to the thoughts and writings of other bloggers that can be found here on A Chronic Voice. I hope you enjoy them all.
Update….as I type I have a new cleaner in the house – a lovely lady who works for a friend who said she could fit me in…..hurray. Now I just need to make sure I don’t fall into the trap of cleaning before she comes – just nagging the kids to make sure that the floors in their rooms can actually be seen to vacuum!!
We are already half way through January and in the PainPals house this means that a significant birthday has been celebrated by the hubby. I couldn’t say anything in my last post as I had booked a surprise weekend away and he reads these blog posts!
For those of you who know me or live with a chronic health condition yourself, you will know that planning any sort of trip away is tricky. The variability and unpredictability of symptoms and general wellbeing can make it difficult on a day to day basis – so it felt like a risk to book a trip away and I wasn’t confident enough to look too far afield. We haven’t taken a holiday abroad since before I was disabled from work, and an annual holiday is a thing of the past for many reasons. So it was with some trepidation that I plotted with the family and arranged a couple of nights away in a haunted 15th century inn on the coast in East Sussex.
Hubby had no idea! We all managed to keep it a surprise and let nothing slip, only letting on the night before we left. I had seen a review on the Mermaid Inn, Rye on Kerry’s blog Kerry’s Life and Loves and fell in love with the history and photographs of this historic hotel and town. “How on earth will you manage on the cobbles and all those hills?” asked my mum, alongside a nagging little voice saying the same in the back of my head, but the bloodyminded side of me was determined to enjoy just a couple of days. Sometimes it is so important to throw caution to the wind and let the chronic illness take a back seat, whilst “normal” life takes over! The inn is everything that Kerry promised – steeped in history, former residents include Elizabeth I, Shakespeare and Elizabeth the Queen Mother to name but a few, and the beams, low doorways and open fires are all other worldly. The maze of tunnels beneath and around the inn were thought to have been used by smugglers and it is rumoured that several inhabitants are of the ghostly variety! No strange happenings on our watch….
Hubby was in for another surprise as we were shown to our room – he was not going to be allowed to forget his special age with the enormous helium balloons that the young engineer had arranged. With the low beamed ceilings they took up nearly the whole room….did I mention that he had also arranged for a bottle of champagne to be chilling?!
We had a wonderful meal in the restaurant and the staff were all friendly and accommodating – even if they did wonder why this woman who was struggling to walk had booked to stay in really old building with steep stairs and no lifts!! I managed though….even walking for some of the day in Rye on Saturday. A word of warning – Rye with its cobbles and hills really is not wheelchair friendly!
I still find it frustrating that I couldn’t manage a whole day out and we spent Saturday afternoon watching a film in our room, but pacing is the name of the game. This allowed me to go out for dinner Saturday night – to a lovely new restaurant called The Devil in Rye, which overlooked the gardens and walls of the ancient monastery – and then we spent the rest of the evening listening to jazz in a neighbouring Champagne & Jazz bar. So grown up, nearly sophisticated and great fun.
It is a shame that I then slept for long periods on Sunday and all this morning, but sometimes it is worth using up all those spoons in one go. So Monday Magic is teetering into Tuesday as I catch up from my slumbers……but I have found some blogs for you (even one about Elizabeth I) and hope that you will sit back and enjoy!
To start the new year I am honoured to have had my health story featured on the blog “Young, Sick and Invisible”. I do know, painpals, that I don’t strictly fall into the group “young”, but Bethany who writes the blog does and is a pretty inspirational young lady, so please have a look at some of her posts and her regular guest blogger post.
So if you feel like reading a bit more about my Ehlers Danlos Syndrome and chronic pain – and to see some very glamorous pictures – have a look here where I answer the following:
1. Who are you? Name. Engaged/ Married Any children/grandchildren? Give as much or as little information as you feel comfortable with.
2. What Chronic illness/illness’s is it you have ..? With a brief description on what it is/what they are
3. What did you love doing before you was diagnosed ..?
4. Are you still able to work (explain briefly what you do and if you’ve have to lower hours because of the illness/illness’s)
5. When did you first develop the chronic illness/illness’s (or think they started – what were the beginning signs)
6. Was the diagnosis easy or not ..? – also explain how you was diagnosed and any struggle you had
7. Did you search the internet looking for help ..?
8. Where do you flare ..? – describe a flare
9. Try and describe the pain (maybe even using a metaphor like (Raynauds is like being sunk deep into ice numerous times a day)
10. How long do you flare and how do they affect you ..?
11. How do you manage/cope with the flares ..?
12. What are your main triggers ..?
13. What medicines/supplements do you take ..? (Briefly explain ones you have tried but don’t/do help)
14. What is your biggest tip for those who suffer from the same illness/illness’s as you ..?
15. How has your illness/illness’s impacted your life ..? (Positively and negatively)
16. What has it stopped you doing ..?
17. How has it impacted on your friendships/relationships ..? (If it hasn’t then don’t worry about this question)
18. How do you stay positive ..? – what has your illness/illness’s allowed you to do or become (positive) for example have you become more understanding ..? You might have stopped work but learnt to spread awareness ..?
19. What is your hope for the future ..?
Guest Post: ‘Claire’s Story.’
January 1, 2019
Hi all, I’m Claire Saul, married to Duncan, 3 children aged 22 (boy),19 (boy), 16 (girl)
I have Ehlers Danlos Syndrome with POTS (postural orthostatic tachycardia syndrome) chronic pain & nerve root damage, migraine, gut motility problems, Raynauds
The EDS is a genetic condition of the Connective tissue – my body produces faulty collagen – so it can affect any part of the body that contains connective tissue. Normal connective tissue is like elastic, EDS connective tissue is more like chewing gum. I have regular dislocations, particularly my hips and shoulders – I started dislocating aged about 8.
POTS is condition that affects the circulation on changes in movement, temperature. When I stand up my blood pressure drops, meaning my heart has to beat quicker and harder to get blood round the body – but the circulation to the brain is reduced, causing me to pass out! This can happen when I stand up, get out of the shower or when the weather is hot/sunny. My hands and feet turn purple as blood pools in them.
Before I was diagnosed I loved my job as a palliative care nurse, I loved socialising & hosting dinner parties – dancing and going to yoga classes! I am not able to work – I was a palliative care nurse, but due to the chronic back and leg pain was medically retired due to disability.
EDS is genetic so I had signs from an early age – “knocked knees”, flat feet, dislocations, poor coordination, pain, headaches (prob early migraines) all before age 10, then during my teens dislocations increased, def migraines, fatigue, circulation probs (now realise POTS), Raynauds and “growing pains” IBS. Aged 21 a disc ruptured in my back and went into cauda equina (foot drop, severe pain, bowels and bladder not functioning) – had first back surgery. Chronic back problems – started here with nerve root damage
My shoulder pain was increasing and preventing me from doing some normal activities, so my GP referred me to the Hypermobility clinic at UCLH (Prof Graham’s clinic). I was lucky that then a secondary referral from a GP was accepted – it has changed now and the patient has to be referred from another hospital consultant (tertiary).
The actual diagnosis was easy as I fulfilled so many criteria and my mum had gone with me so was able to give family history. Although she isn’t formerly diagnosed, we can see that both she and my grandma when she was alive have symptoms. I was given a diagnosis very quickly, but no support or follow up – was told that my management needed to be local.
But the time it took to join the dots of various illnesses was not easy. I was finally diagnosed aged 42
To read the rest of my answers to Bethany’s questions visit Young, Sick & Invisible here!
Thank you so much to Bethany for having me as a guest blogger!
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?
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
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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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.
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.
Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.
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.
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.
It has been one of those weeks where nothing has quite turned out as we thought it would – the culmination of some tricky events that have escalated over the summer. I can’t write about them yet – they aren’t just mine to tell. But the impact on the family is great and a dash up the motorway has left this body feeling more decrepit than ever. Chronic pain is flaring and spiralling. Emotions are flipping between tears of worry and screams of anger; a lack of sleep and a definite lack of concentration is overwhelming.
I am sorry to have missed Monday Magic yesterday. This poem that I found by Patricia Grantham seems appropriate!
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.
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.
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.
Make your own toffee apples with this simple recipe from the BBC Good Food site
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob