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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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.
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.
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!
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.
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.
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.
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.
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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