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.
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 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.
Did you think that I’d forgotten about “IBFY” this week? I had a blog tour spot for Monday and didn’t want to overdo the musings, so thought a midweek spot might do nicely to share these posts that I had found for you.
We survived our week with hubby away…..just!……..and more importantly he survived an activity week with 64 ten year olds. The weather was really kind to them and he returned looking more like he had been to Spain rather than to Kent, the sun tan covering any signs of exhaustion! At this end I continued to share drugs and my CBD vape with the politics student as he nursed, and continues to, his dislocated knee; there was one faint/fall/dislocation and only one set of plans cancelled. Not too bad going! The lovely girl even managed to get out of bed every morning to do her paper round without her dad dragging her out of bed.
As hubby arrived home, the eldest and a group of friends headed off for Snowdonia, North Wales….to go camping! Pitching a tent in the dark on one of the coldest nights this year – not my idea of fun and I think the young engineer’s better half would have preferred a B&B. They actually had snow and built the snowmen to prove it!
Meanwhile yours truly now has the results of my neck x ray and unsurprisingly it shows disc and degeneration problems in both the cervical and thoracic spine. “Where shall we refer you?” pondered my GP……um, how about somewhere that can arrange new bodywork! I think that my neurosurgeon might go off for a very long holiday when he sees my name on the Back Pain Clinic patient list again. At the moment I have no expectations and want to avoid more surgery – be it on my shoulder or my spine……time will tell!!
I hope that you enjoy this mix of blog posts that I have found this week – I have finished with a short video to highlight pain in Ehlers Danlos Syndromes Awareness Month. So sit back with a favourite cuppa and happy reading!
For some time now I have been looking for a garment that would give my ever dislocating shoulders some support and yet that I would also be able to actually put on without dislocating said shoulders! More of this below. The Active Posture products were recommended to me and the company gave me a posture vest to trial in exchange for a fair and honest review.
Posture clothing: all you need to know
It can be difficult to keep an upright posture throughout the day, which is where posture clothing from ActivePosture® can help. Posture clothing activates muscle memory to help you achieve an improved, upright posture.
Posture clothing can be a comfortable and practical solution for problems induced by poor posture, or it can act as a supplement to training, exercise and physical therapy. Your posture has an influence on your physical health and overall well-being, so having aligned posture benefits us during work, training and in everyday life.
How does posture clothing work?
At ActivePosture.co.uk you can purchase clinically tested and medically approved posture clothing from leading manufacturer, AlignMed®. Our products are inspired by the concept of Kinesio-taping, which stimulates muscles, improves blood circulation and can aid in maintaining an aligned posture. Our posture clothing can be worn in everyday situations, whether it is during physical activities or when you are stationary.
Who is posture clothing suitable for?
Pretty much everyone can improve their posture from wearing posture clothing. It is also particularly beneficial to supplement physiotherapy and training, however, if you have a recent injury, we recommend consulting a physiotherapist or doctor before use.
ActivePosture offer products for both men and women in several different styles and colours. There is a classic v necked vest top, in petrol blue, white or black for gents or blue, nude, white, black or burgundy for ladies. A zipper fronted vest is available in both black and white for gents and ladies. There is also an AlignMe Interactive bra available in 4 colours.
The website gives clear instructions to measure for your posture vest and suggests that if between sizes you should opt for the smaller as the top must be snug. At 5 feet 8 inches and taking a 34 A/B bra, I wear a UK size 12 and ordered a Medium which fits well. I can’t comment for fit for ladies with a larger bust size, but please be aware that the vest is not fitted with cups.
My vest arrived quickly and was beautifully packaged, creating an excellent first impression for the product inside. The vest itself is made from a mixture of nylon, spandex and polyester and beautifully constructed with Neuroband support straps throughout the lower neck, shoulder and back area. These bands are all made from different levels of elasticity and exert different pressures on the body. I had requested a zipper version for ease when putting the vest on and taking it off – this is because I have recurrent dislocations, arthritis and chronic pain particularly in my right shoulder.
My Trial Period
I have had my vest since the beginning of February and was advised by the company to gradually build up the wearing time. The recommendation is to start wearing for an hour per day, but as I have a specific condition that means my connective tissue and joints work differently to the norm, it was suggested that I use it for 30 minutes per day.
The vest does feel tight initially and the shoulders need to be fitting correctly – if the vest is the correct size it is possible to feel a gentle pull across the shoulder blades and muscles, and this increases if the wearer begins to round their shoulders. There is also support around the lower back lumbar region too.
After building up wearing time over a 2 week period, I then opened a drawer and suffered a severe (even by my standards) dislocation which left my arm hanging low, immobile and in a great deal of pain. It took approx 2 weeks before the humerus would even pretend to stay in the socket…….and most days it continues to slip out as I cough, sneeze or just move! During this initial fortnight my pain was too severe to wear anything snug, but I had a long planned theatre trip and made the decision to wear the vest in order to try to support my shoulder – my main reason for wishing to trial the product.
I found the ActivePosture product to be of a high quality and very comfortable to wear. I have washed it several times, following the manufacturer’s instructions and it has maintained the shape and washed very well.
Please remember that my anatomy is slightly different and I am looking at the product for a different support – but I believe that for pure posture support and to run alongside physio programmes, this product works very well. I have worn the vest whilst sitting both at a table whilst typing and also relaxing in an easy chair and was definitely able to feel the posture support that it encourages.
I am not unrealistic and did not expect the vest to hold my shoulder in socket or to prevent my dislocations. If only it were so simple! My physio has always said that when dealing with my shoulders he must forget all that he has been taught, and instead work with me in the opposite way to how he would treat everyone else!! But I had been hoping that the vest would offer my joints and lower neck some support and I am delighted to report that it does. I have not worn the vest whilst my shoulder is completely out of joint – to be honest it is difficult to wear any top – but I have been wearing it when the shoulder/s are in the normal (for me) state of constant subluxing. My preference is without a bra underneath. I have found that the top acts rather like a compression garment and offers my stretched muscles and ligaments gentle support, whilst I hope also encouraging the muscles to do a little work themselves. (Please note that I do regular exercises when I am able to prevent too much deconditioning).
I have also noticed support across the lower neck where I have several vertebra that have a tendency to “pop” in and out. This leaves me at times with a “dowager’s hump” and I genuinely believe that the Neuroband support mechanisms in this vest have helped with better positioning and pain control. Many of you will also be aware that I have had major surgeries on my lumbar spine over the years, and a very pleasant surprise has been that this vest also gives me support and compression around this region – gentle compression (actually sometimes full on pressure!) really helps manage my nerve damage and pain.
So what of that theatre trip? Whilst still in an immense amount of pain and needing morphine for pain management, the vest helped me to sit through a loud and vibrating musical theatre experience. Since then I have also worn it to cinema film showings and out to dinner – it sits neatly and snugly beneath clothes and I have increased my wearing time. It is important to understand that the vest should be used in normal circumstances as an aid to better posture, so shouldn’t be worn all the time. You must work your own muscles too!
Have there been any negatives?
The vest is made from synthetic materials so can become quite hot and sticky in warm conditions – however it does look like a “top” so I have stripped off on the odd occasion and still felt dressed!
The ActivePosture products are expensive at a first glance – particularly as many with chronic conditions are unable to work and like myself rely upon benefits for income. The vest top retails at £99.95. However I would now say that for a product that has given me both support with my joints and my pain that it is worth the expense……I can see the research and engineering that has gone into creating a quality product and I would rather forego other clothes/meals/coffees in order to own a product that will give me support on those bad days.
In fact my final endorsement has to be the fact that I have been bought some more vests by a relative (taking advantage of the current offer!) as I love it so much!
The ActivePosture vest is a 5 star product for me!
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The company currently has a special reduced price for the products and are offering a volume discount – visit the shop here. (Note: this is not an affiliate post and I do not benefit from any orders made)
For information about research behind the product visit the site here.
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!
A few weeks back I was nominated for the Versatile Blogger Award by the wonderful Nikki, the Brainless Blogger.
I met her on the “chronic illness” circuit – have a look at her site The Brainless Blogger here – but she also writes fantasy fiction and you can find some of her work under her pen name Lil Hamilton. I think you will agree her own Versatile Blogger award is very well deserved. Thank you, Nikki, so much for nominating me!
1. If you are nominated, congratulations – you have been awarded the Versatile blogger award!
2. Thank the person who gave you the award and include a link to their blog.
3. Select 15 blogs/bloggers that you’ve recently discovered or follow regularly.
4. Nominate those 15 bloggers for the Versatile Blogger Award.
5. Tell the person who nominated you 7 things about yourself.
At the beginning of the New Year many bloggers reflect on the year that has just gone before and think ahead to set goals and/or resolutions for the year to come. I thought that I would try to do something slightly different and incorporate my seven Versatile blogger answers with my New Year post! So here goes…….
I have a chronic genetic condition, Ehlers Danlos Syndrome, which means that rather than producing connective tissue that is elastic, mine is more akin to chewing gum. It can affect any body part that has collagen/connective tissue. I can’t remember a time when I didn’t dislocate one joint or another, or experience a pain free day but my first major problem came aged 21 resulting in major back surgery, nerve root damage and chronic pain. Whilst a consultant picked up that I had a “syndrome” when I worked in his theatre as a student nurse, ironically it wasn’t until 20 years later that I was formally diagnosed at my old training hospital, University College London!
I was a nurse in a former life. It still hurts to say “was” rather than “am” – one of my greatest sadnesses to come with chronic health and disability has been losing my career and registration. My passion was “head and neck” cancer nursing and later Palliative care – I was privileged to work in both specialities for many years. 2018 marked 30 years since the start of my nurse training and I was so fortunate to be well enough to spend a weekend with some friends from my nursing set, to visit the hospital and a few of our old haunts!
I am a book worm! Remember the days before mobile phones using a torch under the bed covers to read? I was one of those kids! I still prefer proper books really, but will admit to reading nearly everything on my Kindle as easier for dodgy joints – but I remain a bit OCD with my books as I can’t stand for anyone to crease the spine let alone fold down a page corner! These days I write the odd review, belong to book clubs and will read just about anything. I go into 2019 pleased that I made my personal 2018 reading challenge (on goodreads) and hopeful that I can continue reading and reviewing.
I am a mum to 3 young adults aged 22, 19 and 16. This last year I have felt the most pride as a mum and also the most stress and angst as a mum to date – these kids don’t come with a manual and it definitely doesn’t get easier as they get older. I guess my parents would agree!! Let’s hope that the next 12 months are less of a rollercoaster….
I love dogs. All shapes, sizes and colours. I am currently broody for a pup but our old (16 years) collie cross Samson is not in agreement with his mum. He is my constant companion – a completely batty boy with special needs who we rescued aged 6 – and has seen me through the years since I was forced to retire. He is completely in tune with my bad days and is very protective of me. We also have a surrogate boy, the beautiful viszla Chester, who we have looked after for friends a couple of times a week since he was 6 months (Sam goes to Grandma on those days!) – we love him to bits. Being at home, sometimes for long stretches, I couldn’t imagine being without a furry friend at my side!
I make celebration cakes. Not professionally, but for friends and family. I have always made birthday cakes for my kids, but when I had to stop working I started to play about with some more ideas and experiment with icing. The strangest request was from a friend wanting a “Tesco” carrier bag for her husband!! The icing is becoming more and more difficult though as my joints deteriorate – rolling out a sheet is nigh on impossible with a dislocated shoulder, so I’m trying to teach hubby! Fingers crossed that I will be able to make a few masterpieces (ha, ha, ha) in 2019.
My guilty pleasure is binge watching box sets – Netflix and Prime have become my best friends in recent years and I blame my daughter for the binge watching! These days it is much harder to join in with family activities, so it is great to be able to spend time on the sofa with my lovely girl…..some favourites for us in 2018 were the finale of Sense 8, the German series “Dark” and “You are Wanted”, “Travelers” and “Anne with and E”. We are both looking forward for the next season of Dark to be released in March!
There you have it – seven things about me, with a bit of looking back and looking forward thrown in. Maybe I should have said that I don’t make resolutions – I’ve never been able to stick to them beyond the first week of January so years ago I just thought why set myself up to fail?! I am happy if I can go into the new year with some positivity and hope!
Tagged Bloggers who are versatile and interesting – great if you take part, no problem if you don’t. You are all still versatile!
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.
Round and round, up and down. I seem to be moving along in my life but never getting anywhere! When I look a bit closer I am travelling on a merry go round – round and round, up and down, a never ending circle that just doesn’t reach my final destination. Others around me are on the travelator – the kind that you get in the airports or new supermarkets – and seem able to see their destination and even to jump on and off en route.
But my journey continues round and round, up and down as the ride continues relentlessly day in and day out. When I look down I realise that I am not even seated on a brightly coloured galloping horse decorated in golds and silvers like the others accompanying me – yes there are others who seem to be at a stage in their journeys of being on a hamster wheel, unable to reach a destination. Instead I am seated on a zebra – a stunning animal admittedly, and not so dissimilar to the horses around it in shape and size. He has a mane, a tail, hooves and he can gallop at great speed. To hear him coming you might mistake my trusty steed for a horse – but he is not, he has stripes and he is a zebra.
My companion on my life journey is different and I am unable to jump off the merry go round that he is firmly bolted to. I raise my hand at fellow travellers passing by and the others joining me on my ride….every so often another zebra joins us and we continue our journey together. Up and down, round and round.
The Zebra has been adopted by the Ehlers Danlos Syndrome community as traditionally medical student have been taught throughout training that “when you hear hooves, think horses, not zebras” – think of the obvious conditions first, rather than the exotic and rare. Thus in medical circles, the term “zebra” is used to describe a rare disease or condition and we EDSers are referred to as zebras!