Being Interviewed – Living with Chronic Illness and Long Covid

A couple of weeks ago I was interviewed for a local online magazine. The journalist Chloe Clarke asked how it has felt to live through the pandemic as a “vulnerable person” with chronic illness and to contract Covid, then to later be diagnosed with Long Covid. I was also spoke about how I feel about the lifting of restrictions.

“Two days into the first lockdown in March 2020, retired nurse Claire Saul started coughing and was later diagnosed with Covid.

One day, her symptoms got so bad that an ambulance arrived to assist with her breathing while she was turning blue – but they were reluctant to take her to hospital because of her chronic conditions, Ehlers-Danlos Syndrome and postural tachycardia syndrome (PoTS).

A friend of Claire’s who shopped for her while she was ill told her that when she pulled up, she could hear her “horrendous cough” from the kerb outside her house.

Speaking about her Covid symptoms, Claire, 52, from Cheam (on the Surrey border), said: “I became quite ill quite quickly – high temperature, breathing difficulties, and it went on for a few weeks.”

Claire said that she has had problems with her chest ever since and has been diagnosed with Long Covid.”

Please read the full Surrey Live article by Chloe Clarke here:

https://www.getsurrey.co.uk/news/surrey-news/weve-been-left-behind-retired-23249515

“it’s all in your head” – a project about me by my daughter

I’ve been invisible on the blogging scene for months now. I couldn’t explain why, but writing just seemed so difficult and I couldn’t put down words – not for the blog nor for reviews. At times the tiredness, fatigue and brain fog has been overwhelming – I accept that depression and Long Covid were setting in too.

Claire by Lucy

My lovely girl undertook an art foundation course at university this year – just the right course to be studying during a pandemic when the universities have had to close their physical doors. Imagine doing an art course over zoom and actually producing the art. So we found ourselves living in an art studio as the paints, pencils, canvases and sculptures gradually infiltrated into every part of the house. Back in the summer you would have been excused for thinking that my washing line was full of dripping body parts! I will explain….

The final project of the year needed to be a piece that would push the lovely girl to her limits creatively and also to explore a subject that she is passionate about. She chose to look at living with chronic illness, with a genetic condition and then more specifically how it feels to live with our genetic condition : Ehlers Danlos Syndrome. Her plan was to make a short film and who better to be her subject than her mother. She spent hours interviewing and recording me, some on good days, others on real brain fog days – I actually sound drunk in some of the recordings, although not a drop of vino had passed my lips! How many people like hearing the sound of their voice? Just imagine hearing it over and over again as it is used for the “sound track” for a film – it was awful. Hearing my speech slurred nearly brought hubby and me to tears.

It was during her time making this film that my lovely girl told me in no uncertain terms that I need to start writing again – she can see a difference in me when I am writing and interacting with my global body of chronic and blogging friends. She is now away at university studying liberal arts and pushing herself out of her comfort zone, and has inspired me to push myself. So without further ado I am sharing the link for our short film with you and hope that this is a fitting re-entry to my blogging world.

“it’s all in your head” https://vimeo.com/548817170

The Trouble with Chronic Illness…..

It has been months since I have written and the world has changed beyond all recognition. The global pandemic has changed the course of life for all of us and in recent weeks another spotlight has been shone on events that have resulted in global demonstrations to highlight that #BlackLivesMatter.  There have been an enormous number of beautifully written posts that I have read about both subjects from fellow bloggers and I salute you all.

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The Trouble with Chronic Illness

 

Initially my Ehlers Danlos bendy body parts were responsible for my lack of writing, as the recurrent right shoulder dislocation became a near permanent dislocation and this in turn increased the problems in my neck vertebra and referred pain down my left arm.  I have had the most fantastic excuse to avoid cleaning and cooking…….but it has been wearing both physically and mentally.  The longer it has been since I have put pen to paper, the harder it has been to come back – actually reading some of the fantastic writing out there has also made it harder to come back. I mean why should anyone be interested in my chronic ramblings? But here I am with a catch up, joining with Sheryl’s June link up on A Chronic Voice and a post that has been floating in my cloudy brain for several months.

A Chronic Voice June prompts

 

The prompts for the June link up are: Searching, traumatising, responding, hoping, honouring

It feels like the whole world is searching for answers right now, particularly of the COVID-19 variety, but this is a situation that those with chronic illnesses find themselves in regularly.  The trouble with chronic illness is that many of us will have several conditions alongside our primary diagnosis known as co-morbidities and this usually involves being under the care of several different medical teams.  At the beginning of March my own searching for answers led me to 3 different hospitals within 10 days as I underwent a scan on my neck, a nerve conduction study, an x-ray and an orthopaedic consultation.  My wonderful shoulder consultant has agreed that hubby can’t go on doing the cooking, oops….I mean that I can’t go on with the pain and neck spasms, so he has referred me for fusion surgery to a specialist London orthopaedic hospital.  Not great timing and no expectations of being seen any time soon.

Shoulder 1

Suddenly the country, indeed the world, was on high alert.  We had one son and his partner on holiday in San Francisco and the other still at university 150 miles away, whilst closer to home our bathroom had been ripped out in order for yours truly to have an adapted wet room.  Every day new advice – wash your hands (took me back to nurse training), keep 2m apart, no unnecessary journeys, no theatre or restaurant outings – and the news kept coming in from across the world of rising numbers and death rates.  A sunny weekend in the UK saw beauty spots flooded with visitors and the voices of NHS staff expressing their anxiety, concern and disbelief at the sheer numbers admitted with suspected corona virus.  Our eldest managed to board one of the final flights home to Heathrow, lockdown was announced and our builder had to stop work. The bathroom was a shell!

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A day later the first cough started in PainPals house – yours truly. Flu like symptoms hit hard and we went into isolation, expecting it to last for 2 weeks.  After a week hubby developed symptoms whilst I seemed to rally, but it was not to last.  The cough worsened accompanied by chest pain and a temperature that was up and down like a yoyo, and my NHS letter arrived telling me that I was vulnerable.  A couple of weeks after the first cough, hubby and the lovely girl (17 years old and completely asymptomatic) called an ambulance after watching my breathing deteriorate as the horrendous cough and chest pain increased.  When someone is struggling to breathe – each inhalation feeling like drawing in syrup through a straw and causing a hacking dry, cough – it is probably as traumatising for the family to witness as for the patient.  I remember their anxious faces and the reality dawning that this was pretty serious. The paramedics spent over an hour rechecking basic observations and heart traces until they were happy that my oxygen saturation had crept back up and I could stay at home “you are better off here with your medical history”.  My active symptoms persisted for another 4 weeks keeping us in isolation, and during my first short trip out in my electric wheelchair I was set back again as the fresh air hit my lungs causing the hacking cough and chest pain to start up.  I am one of the lucky ones and avoided hospital, but recovery has been slow – this virus is truly traumatising.

Covid 19

Responding to this pandemic has led to descriptions of a new “normal” and a whole new vocabulary – furlough (who knew?!), social distancing, social isolating, shielding, social bubbles to name a few. Life has changed as populations have been told to stay at home, schools and businesses have shut and many have found themselves alone and afraid.  Job security and finances are uncertain, plans for the future impossible to call.  But many of my fellow chronic illness pals will no doubt have drawn the comparisons with the new “normal” and our everyday chronic normal. The social isolation that a failing body inflicts, feeling cut off from friends and family, financial insecurity due to inability to work and the ever present stress and anxiety that accompanies a chronic illness.

In the weeks before the UK went into lock down, I was filling out various forms for my application for an assistance dog and unsurprisingly one needed to be from a doctor.  Ideally this doctor should be someone who knows the applicant well and has a relationship with them.  In normal circumstances for me this would be my GP, a lovely lady who sees me monthly and is closely involved with all aspects of my care. But even  prior to the pandemic she was on long term sick leave and I found myself having to consider who to turn to.  This takes me back to the beginning of this post – the trouble with chronic illness and the related co-morbidities is that there is rarely one consultant, one doctor who oversees all our care. One of the moans that comes up time and time again at my EDS support groups is that there is never one doctor who can oversee all a patient’s needs – in our case for Ehlers Danlos Syndrome.

Doctors 2

 

Which of your medics knows you best? Who is best placed to answer questions about you, from your medical background to your home circumstances? How often do you see the same doctor at each hospital visit? Would any of those different medics truly be honouring you, the patient, properly by filling out a report without really knowing you?  These questions went round and round in my head during the second week of March as the UK looked set to close down and I really questioned which of my medical teams actually know me.  From gastroenterologist, urologist, cardiologist, rheumatologist to pain team, I eventually decided that my orthopaedic consultant has probably spent the most time with me over several years and he knows my previous physio very well.  He is also approachable and I felt confident that he would be prepared to “vouch” for me – sadly not something that can always be said.  I was right and he was more than happy to help, and I was very fortunate to have another GP from my practice spend the time on a telephone appointment to go through the application form with me.  Hospital appointments tend to figure highly in any spoonie’s social calendar and even these are entering into a new “normal” – I had my first virtual video appointment with a spinal consultant a couple of weeks ago.  An interesting and surprisingly easy experience – no tiring journey, no difficulty parking, no waiting as appointment times overrun.  The lovely girl also had a virtual appointment for an ear infection, but hubby wasn’t so lucky with his tooth ache on an old root canal filling.  When the dentist was still closed I offered to pull it out for him but he didn’t take me up on it! Time will tell how well this new appointment system works.

Light at end of tunnel

As the UK and other areas across the world begin to emerge from lockdown, I think that many of us are hoping that a light can be seen at the end of the tunnel.  The tunnel remains long and winding, but hope is what we must cling to. Whilst most people are hoping to return to a new “normal” life soon, those of us with chronic illness and classed as vulnerable have a much slower journey ahead of us. I am hoping that we don’t get left too far behind or forgotten.  Keeping my future assistance dog in mind, I am also hoping that the staff for this small charity will soon be back from furlough, they can continue fund raising and the placing of these wonderful dogs can begin again soon!

Finally it would feel remiss if I did not use the word honouring for the memory of all those who have lost their lives during this pandemic and their loved ones, and for all the front line workers who have worked relentlessly throughout.

Honouring

 

There it is – my first blog post in months. I am back! And in case you were wondering…..I have a bathroom.

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The Trouble with Chronic Illness 2

 

 

Farewell My Chronic Companion

This is the first time that I have managed to write this year – that is in 2020 – for so many reasons. How is it even possible that we are in 2020? Is it too late to wish you all a Happy New Year? I hope I can just about get away with it, although many of you will have already done “dry January” or “Veganuary” and might be well into “fit Feb”!

Farewell My Chronic Companion

I have felt so low, have had so much pain and have just not been able to write anything worth reading.  I am so sad.  Before Christmas I lost my chronic companion, my elderly fur baby, my dear old dog Samson.  Never did I imagine just how hard his loss would hit me, never did I imagine how many tears I would weep.  This daft, crazy, hairy boy stands for so much more to me than just my pet.

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Let me tell you about Sam.  Six months after I first went on long term sick leave from my nursing job, I had begun to accept that the chronic pain in my lower back and leg were not going away any time soon.  An epidural had caused a CSF leak and the cocktail of drugs that my old hospice consultant had put me on – pregabalin, oxycodone and mirtazepine – were not touching my pain.  The likelihood of returning to work as a ward based hospice nurse was looking highly unlikely.  The kids wanted a dog, but with us both out working very unsocial hours it was just not going to happen.  One fateful Sunday I made a throw away comment that as it was looking unlikely I would be going back to work “maybe we will get a dog sooner than we thought”.  The young engineer, aged 12, went online and immediately started searching animal rescue charities……

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To cut a long story short, I received a telephone call to say that our family had been matched with Samson – help, hubby had been at work and had no idea what was going on.  Sam needed rehoming as his human mum in Wales had been taken in to a hospice and his human young siblings were going to live with grandparents so “you don’t need to worry about the children as he is used to them”.  Ever a sucker for a sob story how could I say no? “Claire, what on earth have you done?” or words to that effect came out of hubby’s mouth “you can’t even stand up, let alone walk a dog!”.  Within a week we had been visited to check our home, garden and family set up, and found ourselves travelling to a foster home to meet him…..and bring him home.

You see hubby and I fell in love immediately with this beautiful, shaggy collie/retriever cross.  He was timid and terrified of hubby, and when he wouldn’t stay in the boot of the car managing to squeeze past the mesh dog guard, we probably should have guessed that there might be fun ahead of us.  Sammy and I bonded that night on the back seat of the car as we sped round the M25 motorway. He was shaking like a leaf but gradually settled with his head on my lap, looking up at me with big soulful eyes – from that moment he became my biggest fan, my protector and my constant companion.

Over the next months as my own pain issues worsened, Sam’s own “foibles” (sounds better than problems!) started to surface.  From day one he was wonderful with the kids, was house trained, never ventured upstairs and was happy to be left in the kitchen when we went out. But……it soon become apparent that he had never been socialised with other dogs, had probably been abused by a man and was terrified of so many things. He tried to round up cars and bikes and barked at anything that moved when we took him out. At this point we were beginning to think that the rescue charity hadn’t quite told us everything……..(if they knew!).

I had my first back fusion whilst Samson started at “special” dog training classes – that is classes where the training was done by other dogs, yes really!!  Whilst I was being prodded and poked with injections, physio and scans, Sam was assessed by the behavioural specialists at Dog Communications. He was deemed to be special needs – if human he would be on the autistic spectrum we were told – and the teaching dogs had picked up on his nerves and anxiety as they didn’t respond to his barking. Over the years we found few dogs did respond when he barked frantically.  Meanwhile I had a spinal fusion with bone grafts which failed to relieve my pain and actually accelerated my failing mobility and EDS problems.  But I now had a constant companion, a wonderful presence in the house to talk to, laugh with and cry with.

 

Our journeys ran on parallel rails as Sam’s special training was abandoned and yours truly had to accept that another fusion was necessary.  We really did give that training a good go as the young engineer (then just entering his teens) took Samson every Saturday morning to an often muddy, wet field at a local smallholding.  There they walked together around the edge of the field, whilst the other dogs were taught to socialise with various interactive activities.  Sam never stopped barking when the other dogs were around, and the canine crowd never took any notice of him. Eventually the trainers felt that actually our boy (maybe boys if we include the young engineer) was finding the whole experience too stressful and wasn’t getting any benefits.

I meanwhile had to accept that another fusion was a means to an end.  Without corrective surgery first – fusion at the correct point of the spine! – I couldn’t be referred for spinal cord stimulator consideration.  Eight hours of surgery and four nights in hospital later, I returned home battered, bruised and knowing that I had permanent damage to my nerve root. The consultant had been able to identify an actual problem and I knew it wasn’t in my head. How many times had I cried onto that black, fluffy head that no one understood and people thought I was imagining it?

Sam was there waiting for me on my return home, as he was after every trip away be it for hospital stays or just a few hours.  Over the years he knew when I was having a bad day and as I started to faint frequently as my POTS symptoms worsened, he began to anticipate it and was always there when I came to on the floor – ready with a tail wag and a lick of concern.  The last decade saw my movement and mobility deteriorate and as I worsened, so did Samson.  My decline was due to a myriad of health issues, Sam’s due to old age.  We never knew exactly how old he was, but last year he was at least 17.

We both started to experience increasing problems from arthritic joint pain and two years ago, as I increasingly had to mount the stairs at night on hands and knees, Samson became agitated at night downstairs.  Initially he would watch me climb the stairs and settle at the bottom, but soon he wanted to be upstairs and sleeping at my side.  Suddenly I was stuck between two snoring boys!!  This only lasted for as long as he was able to climb the stairs and last summer the pattern was broken after a week spent at his human grandparents’ home.

I think that it is commonly accepted now that animals can be so beneficial to our health in a multitude of ways and Sam definitely became a therapy dog for me. A mad, barking, exceedingly hairy one, but I knew that I was his number one. He followed me wherever I went even nudging the toilet door if he thought I had been in there too long.  During the increasingly frequent “bad” days when the pain and dislocations have become hard to cope with, he has always been there to comfort me and I loved him in return.  Towards the end of the year he was having more problems walking and couldn’t stand up on the wooden floors in the house.  I actually bought him little doggy non slip socks and the first time that I put them on, he walked as if he was wearing concrete boots – but they did help.

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As a family, we knew that a difficult decision lay ahead of us – the vet had already warned us that Sam had a dental abscess that couldn’t be healed by antibiotics alone.  But at such a great age we weren’t sure that surgery was the right thing to put him through.  Our aim was to keep him happy and comfortable and to see both boys come home for Christmas – he seemed on track.  Then one evening he began to behave strangely – even by his standards.  He was unable to walk in a straight line and kept walking round in circles, and then as the night progressed he became increasingly distressed. Hubby and the lovely girl spent the night on the floor camped out by his side, whilst I spent it feeling guilty that I couldn’t be on the floor with him.

The difficult decision had been taken out of our hands and by 9am hubby and I had arrived at the vets.  The journey there was awful as Sam cried in distress and I knew that his well being had to come first.  But as the vet examined him and diagnosed a probable brain event, the sudden realisation that I was about to lose my beautiful boy hit home.

The journey home was incredibly quiet as we both tried to “be brave” and hold it together. I failed completely, but hubby had to drive.  The feeling of walking into the house and knowing we had left him behind was indescribable.  Hubby lost it on seeing those silly little non slip socks…….then we had to call the boys with the news.  My guilt that I couldn’t keep him going until the politics student returned from university still hasn’t gone yet. I knew that I would find it hard, but I didn’t know just how tough it would be to adjust to not having my constant companion with me.

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I miss him every morning when I come down the stairs, every time I come home to an empty house, every evening when I’m not being pestered to get his dinner. I have refilled his water bowl, heard him snuffling in the night or caught the sound of his feet running down the steps in our back garden.  If you had asked me a few months ago if I thought it possible to miss his barking at the back gate, I would have thought you mad…..but yes, I miss that too.  Most of all I miss his unconditional love.

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I have recently started the application process to be paired with an assistance dog, something I had been looking into before Sam died.  It is completely irrational, but I feel so guilty.  There is a huge Samson shaped hole in my life and it represents so much more than my pet – my protector, my number one fan, my chronic companion.

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Farewell My Chronic companion 1

 

Dear Chronic Illness – has anyone told you that Christmas is coming?

Dear Chronic Illness, has anyone told you that Christmas is coming? The sentiments from 2018 still stand in 2019…….

PainPalsBlog

Dear Chronic Illness pin

Dear Chronic Illness,

Has anyone told you that Christmas is coming?

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.

Christmas dinner

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…

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Midweek Magic – Christmas Inspiring Blogs for You!

Christmas Blogs for You

The festive season always starts for me with the traditional carol service held by my old school in the local parish church.  We old boys and girls gather in a local hostelry before and enjoy some Christmas nibbles and beverages before heading over to join in with Silent Night and listen to the young choir carolling.  There is something magical about the candle lit church and the smell of mulled wine and spice in the air.  With every year it becomes slightly harder to get myself there, slightly less predictable to know if I will be physically able to make it or if fatigue and pain will have laid me out.  I made it last week!  Never mind that the old neck decided to spasm or that by the end of the service my ear was nearly touching my shoulder, forget the howling wind and heavy rain outside the doors, it was time for Christmas to begin.

Christmas lights

 

The blog posts that I have found have actually been sitting on this page for a week now, but other events overtook – some planned, others not so much.  You might have noticed a little political debate surrounding the UK in recent months and a small matter of a General Election, but much more important in this house was the Christmas drinks event that fell on the same date.  Several months back, definitely before the date was stolen for the election, the young engineer and his business partner booked a new bar in Convent Garden for their second Christmas party.  You may recall that the lovely girl did some work experience with her big brother over the summer, but she was shocked to receive an invite to said party……we all received them, a dead give away that they came from the business partner and not the young engineer.  He would not want parents and grandparents arriving and getting carried away with the festivities!  Or so he says….

The family suffered a huge loss on the morning of the 12th December as our old dog took a turn for the worse and had to be taken to the vet for the last time.  He has been my constant companion since chronic illness struck and I am heartbroken…..another post for another day.  A trip to London that evening was not something any of us wanted – it was windy and raining, and Mum and I needed waterproof mascara for other reasons.  The whole country was waiting with baited breath as the election exit polls started to emerge and we were looking for our parking spot in a Covent Garden car park.  The weather was playing havoc with my pain – my back and leg nerve pain was screaming at me and my shoulders felt like something was grating away the bone each time I moved my arms.  Naturally the wine bar was in an old building and the young engineer had booked the basement bar – the barman was convinced that he was going to have to carry this middle aged woman down the stairs, whilst hubby suggested an inflatable slide like they use on aircraft.  But I shut them all up and slowly (I like to think of it being dignified!) I made my way down the stairs as my Dad waited at the bottom to catch me. No, that did not fill me with confidence.

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A good time was had by all and yours truly managed the whole evening without shedding a tear – even when my boy gave me a hug.  Please note – this is a very rare occurrence!!!  The music was loud and sent magnificent vibrations through my titanium spine and spinal cord stimulator – I still can’t decide whether it was a pleasant or horrendous feeling – the food was great and the cocktails were exorbitant (price!).  We met the rest of the Risk Ledger team, which has increased to 8 this year and were amused to hear what our boy is like as a boss.   We, the parents and grandparents, did a good job at being the embarrassing family – we are all quite loud, sociable and will chat to anyone and are very different to the young engineer!  I think that several of his friends/employees were surprised that hubby and I aren’t tech geeks -no he doesn’t get it from us.  It would have been very easy to stay at home for so many reasons, but I am  glad to have pushed through the pain and the grief to have been able to come away a very proud mum – just don’t tell him that I said that!!

Claire & Daniel

My pick of inspiring blogs are all festive themed – some of them full of cheer, others about coping with this time of year as it is not great for us all.  So grab a cuppa, sit back and enjoy!

https://ourfavouritejar.home.blog/2019/12/05/a-christmas-extravaganza-at-waddesdon-manor/

https://www.achronicvoice.com/2019/12/06/holiday-checklists/

https://coffeeandfairylights.com/christmas-gift-guide-for-fibro/

https://kimyoung.ca/reduce-your-holiday-stress/

https://www.theblessedmamaof4.com/christmas-paintbrush-ornaments/

https://www.ajourneythroughthefog.co.uk/2018/11/for-many-people-the-festive-season-is-not-a-time-of-celebration/

https://trippingthroughtreacle.com/chronic-illness-christmas-ghosts/

https://managingchronic.com/home-life/2019-holiday-gift-guide-chronic-illness/

https://beinganne.com/2019/12/review-christmas-in-lantern-square-snowfall-in-lantern-square-by-helen-rolfe-hjrolfe-orionbooks-newrelease-romance-series-lanternsquare/

https://anhistorianabouttown.com/history-of-christmas-markets/

Please make a blogger’s day and comment, like and share posts!

Have a great weekend,

Claire x

A Little Winter Magic and some Chronic Illness Reflections with Inspiring Blogs for You!

Hello PainPals!  I did start an Inspiring Blogs for you last week, but life seemed to get in the way.  This leaves a couple of weeks in the PainPals house to catch up on, yet the brain fog is leaving me struggling to remember what happened yesterday let alone last week – but I will try.

Winter Magic & Chronic Illness Reflections

 

When chronic illness (CI) slowly creeps up on you, often the “patient” and the “nearest and dearest” don’t notice how life has changed because we are all too busy living it.  A couple of weeks back I was very proud that I managed to successfully make a 50th birthday cake for a friend’s Silver and Gold party.  The cake took all week as I painstakingly cut out icing stars, painted them, baked the cake,  iced the cake – taught hubby how to ice the cake! – and decorated it.  I am so slow now as my hand frequently spasms (when painting on hundreds of gold “stars”) and the dislocated right arm is not conducive to handling a heavy icing rolling pin! But I did it.

 

Dancing queen

 

The next challenge was to get to the actual party.  Before CI, dressing up in silver and gold sparkles and spending my night on the dance floor being the dancing queen would have been a great night out.  With CI it can be a struggle to actually get out in the evening before fatigue sets in, but an extra strength is needed to overcome not just the physical limitations but the psychological ones too.  Before I could get through the door of the party venue in my electric wheelchair, I had to break through the barriers that my own brain was throwing up as I came to terms with no longer being an able bodied dancing queen.  The words drowning queen often spring to mind as the body won’t behave in the way that the head wants it to.  I still struggle, yet live this daily – and it soon became clear that it wasn’t just me having to come to terms with these changes.

 

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Photo by Engin Akyurt on Pexels.com

 

Several different friends asked if I had seen another lady – a mum from the primary school, where we all used to meet at the school gates when our now young adults were little. The interest here was that she was walking with a stick and “something” had happened to her – they wondered if I knew what?  I didn’t know, but immediately recognised that there would be people looking at me in the same light “last time we saw Claire she was up and mobile – for some it would have even been pre walking stick – what has happened that she is in now in a wheelchair?”  But for anyone who hasn’t witnessed that event or that general decline, so often they feel they can’t ask.

 

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Photo by Pixabay on Pexels.com

 

When this other lovely mum and I “bumped” into each other at the edge of the dance floor, I think that we immediately recognised kindred spirits and were also not afraid to ask “what happened?”.  She told me that she had suffered a stroke in her forties, I told her about my back surgeries and downward spiral with Ehlers Danlos Syndrome and chronic pain.  We discussed wheelchairs! When I later said to my friends that others (who hadn’t been with me over the last 10 years) would be wondering about me in the same way that my pals had mentioned the other lovely mum, at first they were taken aback and then realised this was true.  People who were not in the know were not “gossiping” about us, but rather were surprised to see such a huge change and I think this makes us think of our own frailties and indeed mortality. But I can assure you – a good time was had by all!

 

 

There has been a momentous event in the household – the young engineer has moved out! Hang out the bunting, change the locks……no, only kidding but I have to say that the household has used far less pasta and tuna in the weeks that he has been gone.  He has moved with a couple of friends into a swanky pad alongside the Queen Elizabeth park – home of the 2012 Olympics – in east London.  I did remind him that the new bedding would not only have to be put on the bed but also taken off the bed and put in the washing machine…..that gizmo sitting in the corner of the bright white new kitchen.  I wonder how long it will stay looking that way?!  This place is so smart that there is even a posh onsite gym for residents!  I am happy to report that he has not returned to the wrong address – at least not to this one, his better half may beg to differ!  Hubby and I have been sure to book our Christmas dinner at his place (we might be treated to tuna pasta).

 

 

The weather in the UK has been truly wet over the last fast weeks and with the changing of the clocks winter is arriving.  I have been reading some great wintery posts over the last few weeks so thought that I would share some before we enter December. So sit back with a cup/glass of something delicious and enjoy!

https://www.brainlesionandme.com/reasons-for-loving-winter/

https://chronicpainfighter.com/are-weighted-blankets-helpful-in-fibromyalgia/

https://chronicallyresilient.org/7-ways-to-beat-seasonal-affective-disorder-this-winter/

https://jademarie.co.uk/emetophobia-winter-coping-techniques/

https://crookedbearcreekorganicherbs.com/2019/11/25/the-herbs-and-spices-of-thanksgiving/

https://thecuriousfrugal.com/fall-soups/

http://www.paperseedlings.com/2019/11/wasted-snowflakes.html

https://www.momentsofpositivity.com/2019/11/believeing-in-yourself.html

https://mcwglenys.blogspot.com/2019/11/sex-isnt-everything.html

https://bysarahwhiley.wordpress.com/2019/11/26/peace/

Thank you for reading and please share/like/comment on the posts that you enjoy.

Have a great weekend,

Claire x

“In My Dreams…..”

When you wake are you still the same person that you were in your dreams? I’m never in a wheelchair or using a stick……and I think I’m forever 20!!!

Claire 2
Forever 20!

In my dreams…..

I walk, I run, I dance

I laugh, I love, I cry

In My Dreams forever 20

 

In my dreams…..

I have a fit, healthy body

I feel forever young

My hair remains untinged by grey

My face unmarked by time and pain

 

Dream

 

In my dreams….

I am an independent working woman

A fully functioning wife and mum

I cook and clean (yes, really!)

I drive my car

I can even run

Dream 3

 

In my dreams…..

I stand up without fear of falling

I eat without a second thought

My memory works and my head is clear

I shower and wash my hair

 

Dream 2

 

In my dreams……

I am the woman I want to be

In a body that is whole

Unmarked by surgical wounds

Or the bend and flex of illness.

In my dreams.

 

In My Dreams

 

Midweek Magic – Inspiring Blogs for You!

Regular readers will have realised that Monday isn’t working out too well for the regular blog share post.  Maybe yours truly isn’t organised enough (yes, Mum, I know!), maybe I prioritise my admin role for scheduling within a Facebook group (Chronic Illness Bloggers, I love you all), maybe the day to day fluctuations of my own chronic illness just take over.

Monday Magic Inspiring Blogs for You!

One of the most frustrating aspects of chronic illness – chronic pain, Ehlers Danlos Syndrome, POTS etc etc – for me is being robbed of the ability to make plans.  Don’t get me wrong, I do still make plans but I hate having to cancel and at times it does feel easier just not to make those plans in the first case.  It would be so easy to slide into an oblivion of constant sofa days without ever having to worry about keeping an appointment.  But this is too often the reality for the chronically ill with regular flare days and once very active people find themselves unable to keep up with life – certainly true for me.  So I must still try to make arrangements and to get out and about when I can.  I won’t be running any marathons soon, but this week I have managed a couple of trips to the park (between rain days) and a cinema visit to watch a recording of Matthew Bourne’s ballet Romeo and Juliet from Sadlers Wells. Different, controversial, inspiring, beautiful, dark, amazing…..just some of the words to describe it.

woman sleeping on sofa with throw pillows
                                   “SOFA DAYS”                                          Photo by bruce mars on Pexels.com

 

The beginning of half term was dominated by A level English Literature course work, as the lovely girl battled to complete her comparison of two self chosen novels.  With hindsight – that wonderful thing! – I think that maybe she bit off rather too much in choosing A Little Life (Hanya Yanagihara) and The Goldfinch (Donna Tartt), both weighty tomes.  The first deadline came and went, as did the second.  Meanwhile a Whatsapp group gaggle was regularly checking in as they all struggled to complete their pieces on their respective books.  By the following morning the lovely girl’s piece was complete but needed to be cut by 1500 words!!!  Hubby and I were called in to help with proof reading/editing, which was hard enough for me as I have only read one of the books, but hubby has read neither!  We were both sent packing pdq, but we do feel that we know the books inside out now (I have read A Little Life and thoroughly recommend it – warning not a happy read!!).  Finally, 24 hours after the original school deadline, her piece was submitted…..now it is on to the Extended Project and the art coursework. I may not be physically doing the work, but I feel like I am (ha, ha, ha).

IMG_0669

I think that I have found some great new blogs for you this week and hopefully will brighten your day as we step well and truly into Autumn – the rain in my part of the UK has been horrendous.  Grab yourself a cuppa, sit back and enjoy!

 

https://debs-world.com/2019/10/19/want-to-know-what-you-said-here-are-your-responses-to-the-question-how-do-you-blog/

http://chronicallyhopeful.com/exploring-the-garden-and-our-first-family-bbq-in-years/

http://calminsights.com/come-lets-sit-and-heal-each-other/

https://teaandcakeforthesoul.wordpress.com/2017/10/20/apple-coconut-squares/

https://beingandniceness.com/2019/10/21/subjectivity-narcissism-and-self-psychology-freud-and-beyond-part-5/

https://novelisteer.wordpress.com/2019/10/18/i-wish-you-all-the-best-by-mason-deaver/

https://moriganna.com/work/starting-to-stress-out-practical-tips-to-prevent-spiralling/

https://lifewithspinabifida.com/2019/10/21/the-job-search-has-ended-why-am-i-relieved/

https://thereluctantspoonie.com/2019/10/21/3-pots-advocates-to-make-friends-with-today-dysautonomia-awareness-month-2019/

https://crookedbearcreekorganicherbs.com/2019/10/21/october-herb-of-the-month-safflower/

https://www.thecurvaceousvegan.com/2019/09/19/am-i-ever-going-to-be-enough-in-the-blogging-world/

Please comment, like and share – make a blogger’s day!

Have a great week!

Claire x

Midweek Magic 24th Oct

 

Falls and Bruises, Mixed with Magic – Inspiring Blogs for You!

It feels like forever since I last posted Monday Magic…..in fact writing still remains a bit of a challenge with the dislocations and whatnot getting the better of me.

Monday Magic Inspiring Blogs for You! w:c 14th Oct

I did learn a valuable lesson last week.  Hubby was out coaching year 6 football (10-11 year olds!) so I was home alone with our 17 year old dog.  IMG_0654Before the front door slams I always hear the same phrase leave hubby’s lips “Don’t do anything stupid!” – I mean as if!!!  I had helped the dog up – he can no longer stand unaided which prove problematic for yours truly – and then headed for his pottery water bowl.  “That looks a bit manky, Sam, I’ll get you some fresh water” :just as I was crossing the kitchen, heavy bowl in hand and stretching the ligaments to the limit – one hip decided to go disco dancing all by itself. Pop!  Out of socket it leapt and left its owner leaping across the floor, skidding in the dog’s manky water and the owner nose diving toward the hard tiles of the kitchen floor.

 

You know that feeling when something happens in slow motion, yet there is nothing you can do to prevent the outcome?  After face planting the ground I slowly attempted to move, gently checking for injuries.  Who am I kidding, everything hurt like crazy, most joints had popped out by this point and I couldn’t have told you if anything had broken or not.  Could I stand up? um…..Could I sit up?…..maybe, if I could manoeuvre myself without using arms or legs.  No that really wasn’t going to work, particularly as there was water all around me.  After heaving myself up the kitchen cupboards into a quasi seated position, I managed to use my mobile phone which happened to be tucked in my pocket and ring my parents, who live up the road.  Hurray – they were home and came straight down, but I was still soaked through to my underwear by the time they arrived and of course Dad laughed. I can see the funny side – the dog had scarpered and was waiting in the hall for them, whilst I was spread eagled across the kitchen floor surrounded by water and smashed crockery. What a sight to see!

Slump

 

Anyway my lesson was that when the family “fuss” and tell this old know-it-all that I must behave and always carry a phone when home alone……they are right.  In fact I think a key box may be a good idea – not for when the lovely girl or the young engineer forget their keys – but in the event that I have to “phone a friend” for help in the future.

The bruises have been monumental down my legs, side and arms – the whole Ehlers Danlos easy bruising skin has been in full view, but they are now fading.  Our dog is the proud owner of a brand new PLASTIC blue water bowl.  Hubby has managed to get me to the theatre and on a university art school open day with the lovely girl – with lots of velcro fastenings and tapes to keep everything in place.  But as you can imagine the call before the front door slams has now become “I mean it this time, Claire – don’t do anything stupid!!”

IMG_0658

I have read numerous blog posts over the last few weeks whilst nursing my sore body and have picked a few favourites that I think are inspiring.  So sit back with a cuppa and enjoy!

https://rachelintheoc.com/2019/09/how-boundaries-can-help-us-avoid-burdens-by-guest-judith-staff-jcstaff_/

https://weareholistic.wordpress.com/2019/10/07/2811/

https://despitepain.com/2019/10/10/are-online-support-groups-helpful-for-people-with-pain/

https://morethanaspoonie.blog/2019/10/10/the-depression-greyzone/

https://ritubhathal.com/2019/10/08/when-youre-still-waiting-what-to-do/

https://ourfavouritejar.home.blog/2019/10/08/10-things-to-know-about-hospice-care/

https://keirancrying.com/2019/10/07/home-is-wherever-i-live-my-tips-for-moving-house/

https://the-tea-chest.blog/2019/10/13/%e2%99%a5-charity-tea-%e2%99%a5/

https://kateonthinice.com/planning-for-happiness-with-a-good-plan/

https://www.morganprince.com/2019/10/self-care-activities-10-minutes.html

Please comment, like and share these posts!

Have a great week,

Claire x

P.S. I am ok and live to fight another day!!

Monday Magic Inspiring Blogs for You! 14th Oct