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.

 

underwater photography of woman
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.

 

ask blackboard chalk board chalkboard
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

 

Monday Magic is back – Inspiring Blogs for You!

It feels like forever since I shared some inspiring blog posts with you.  If you read my last post you will know that for various reasons writing has not come easily recently, but I something that I really want to do is to get back into the habit of sharing great blog posts with you.

Monday Magic is back

Back in June I did manage to get to the Annual Bloggers Bash Awards in London and once again was able to meet up with other bloggers – some were old friends, others I felt I knew and then there were others who, along with their blogs, were new to me.  I was so excited that a fellow Chronic Illness Blogger – and one who I know – the lovely Caz from Invisibly Me won a category……you must have all heard my cheers!

 

The hotel was beautiful, situated in a perfect London square which actually boasted a small cricket pitch.  I’m not sure that they liked the look of me though as we had to use the tradesman’s entrance round the back…….this was the accessible entrance with a stairlift that accommodated my wheelchair.  The design seemed so clever until it was time to go home and the young receptionist blew the electrics when he turned the stairlift on.  There was no way that it was going to budge, so yours truly had to get out and sedately make my way down the stairs whilst hubby carried the chair behind me!  It was nobody’s fault, but it was a good job that I wasn’t in my electric chair…..nobody would have been shifting the weight of that down the stairs!!

person standing at the corner facing wall
Photo by Ekaterina on Pexels.com

Meanwhile the younger male members of the family have been off gallivanting to sunny climes.  The politics student went away with uni friends to Spain where they stayed in a friend’s villa on the coast near Alicante. Maybe that should read a friend’s parents’ villa….. I am certain that they are lovely, but they must be totally and utterly mad to allow a group of 10 twenty year old “boys” to use their holiday home!  More recently the young engineer and friends left London at its hottest for the cooler temperatures of stunning Crete followed quickly by a trip to Pride in Amsterdam – if the photos are anything to go by they had a wonderful time in both locations.  I will save stories of our hols in dear old Blighty for another day!

 

What of the lovely girl? Well she and her friends have had their A level artwork “Inside-Outside-Inbetween” exhibited by the Royal Marsden hospital in Sutton (Surrey branch).  The hospital reached out to local schools as they wished to display local young artists’ work in both corridors and treatment rooms. A private viewing was laid on for the students alongside friends and family – unfortunately I was too unwell to be there but hubby and parents had a great evening.  Apparently the food that the Marsden laid on was great – and the art was pretty good too!!  Anyone who is local and interested will be able to view the girls’ art until December.

 

 

 

 

So that must mean that it is time to sit back and enjoy some great blog posts – this week all chronic illness and health related – as ever please like, comment and share posts that you enjoy.

https://www.simplyemma.co.uk/slowing-down-to-smell-the-flowers/

http://rockabillyspoonie.com/2019/08/12/for-the-records/

https://thechronictraveller.com/2019/08/11/the-milan-bone-church-san-bernardino-alle-ossa/

https://pamelajessen.com/2019/08/09/cannabis-for-fibromyalgia-and-invisible-illness/

https://weareholistic.wordpress.com/2018/04/14/self-care-is-simple/

https://youcanalwaysstartnow.wordpress.com/2019/04/29/mighty-ugly-not-me-the-book/

https://3sistersabroad.com/2019/08/03/a-day-in-salamanca-spain/

https://livingwithme.blog/2019/07/07/life-update-and-goals-for-2019/

http://www.shipwithnosails.com/2019/04/20/facing-the-fire-what-to-do-when-you-are-first-diagnosed-with-crps-rsd/

https://www.jumbledbrain.com/2019/08/12/are-these-brain-zaps-just-anxiety-or-my-brain-injury/

Have a great week,

Claire x

Monday Magic 12 Aug

When The Simplest Things Floor Us

Isn’t it funny how sometimes the simplest of things can floor us?  Not the big things – the dislocations, the brain fog or even a recent A&E visit to check out an ankle injury for fractures.  Over the last few weeks a new enemy has been creeping up, slowly and insidiously until a sudden movement caused spasm and pain off the Richter scale.

long exposure photography of water drop
Photo by Fabiano Rodrigues on Pexels.com

Where? Back pain? Neck pain?  Well they still haunt me daily alongside the dislocations, but this is different and affects everything I try to do.  One evening several weeks back, my right hand suddenly drew itself up with a sudden, intense spasm into a claw.  There was no warning and the pain was searing – in fact I screamed the roof off leaving no one in any doubt that something had happened.  Cramp? No, this was a very different feeling as the ligaments and bones within my hand felt as if they had become intertwined and stuck in a confusing rigid medley of pain and spasm.

 

Pin for later

When the simplest things

 

Several hours later the claw unwound as quickly as it developed, but the pain, now in both hands continues.  Maybe it is a repetitive strain type pain or some of the nerve pain may originate in the problems in my neck, I don’t know, but it affects everything.  Holding a cup of tea, brushing my hair, holding a book……and typing!  Admin duties for the Chronic Illness Bloggers and emails have been prioritised but typing is painfully slow.  Writing my own blogs has slowly but surely slipped away from me.

Nothing in life is predictable is it? But life with chronic illness has “unpredictability” as a middle name – no day is ever the same, it is impossible to know how the body or mind will present itself as it wakes each day.  The bigger issues, “the big picture”, can be easier to cope with, but the little things that are unexpected can be the straw to break the camel’s back.  The best laid plans can be blown apart, resentment hits, brain fog distorts memory and pain can take hold.  Yet life goes on with or without functioning hands!

Hand

 

This has taken several days to type…..hopefully normal service will be resumed soon!

 

When the simplest things 2

Midweek Magic – Inspiring Blogs for You!

Inspiring blogs has slipped to midweek again, but as I had already found the posts I really wanted to share them.  I didn’t get near my laptop on Monday as hubby was filling out the dreaded tax return online – this meant he had 2 laptops and the ipad spread out in front of him and he doesn’t even have a regular job!  Who knew that the tax office struggles to cope with zero hour contracts?!

Midweek Magic 16th May

The politics student has returned to university this week, but not before a trip to A&E to check out his knee.  I think that I mentioned last week that he had dislocated and then relocated his knee – the pain and terrible cracking continued and we were advised by the GP & a physio friend that he needed to go to hospital to have it checked.

Cartoon knee
image courtesy of clipart-library.com

So I duly packed off hubby and son, with flasks and sandwiches…..no, I didn’t but probably should have done as they were waiting for the best part of last Friday.  The wait we could understand – there were a lot of emergencies and the waiting room was full – but it was a shame about the attitude of the nurse specialist.  Son and hubby explained the problem and were slightly taken aback by the tone used to tell them that A&E is for really sick people!

They explained that the GP had sent them and were apologetic for taking up time…….but where does someone go with this sort of problem? No you are not seriously ill, but you do have something wrong that your GP can’t deal with……no wonder so many of us chronic bodies avoid going to hospital!

Enough moaning, yours truly has had an eventful week and managed several outings between the bouts of neck pain.  A curry with friends – a fellow zebra who made contact via this very blog, another reunion at my old school as Chair of the alumni group – a  group only 2 years behind me so I knew them which was great, and a National Theatre Live production of All My Sons at our local cinema.  If you get the chance to see this it is fantastic – Sally Field, Bill Pullman, Colin Morgan (aka Merlin!) and Jenna Coleman. Getting out of the cinema was a challenge as although the spinal cord stimulator helps with the pain it doesn’t help with the dead leg and immobility after sitting.  Good job I have a husband, eh? But it is no wonder I can hardly move today and am happy I have a new furry pal come to stay for a couple of days…….meet Jensen!

The posts encompass various things that have been happening this week – Mother’s Day in the USA (read Willow’s beautiful poem), ME/CFS awareness and mental health awareness. May is the awareness month for many conditions and I will put up a listing on another post – I don’t want to miss anyone out.  Don’t miss the inspiring ladies featured at Tea and Cake for the Soul. So grab yourself a drink, sit down and relax!

https://lifeattheintersection.com/2019/05/06/who-are-the-millions-missing/

https://willowdot21.wordpress.com/2019/05/12/song-lyric-sunday-mothers/

https://www.jolinsdell.com/2019/05/book-review-printed-letter-bookshop-by.html

https://pamecrement.com/2019/05/10/before-she-was-your-mother/

https://ablondeinthecrowd.wordpress.com/2019/05/13/confidence-help/

https://myloudwhispersofhope.com/2019/05/13/its-mental-health-awareness-week-in-the-uk-may-13th-19th/

http://jademarie.co.uk/positive-body-image/

https://father-hood.co.uk/2019/05/13/parents-subconsciously-sexist/

https://teaandcakeforthesoul.wordpress.com/2019/05/13/menopause-fab-at-50/

Please share some love and comment, like and share your favourites!

Have a great week,

Claire x

16th May MM

 

 

Midweek Magic – Inspiring Blogs for You!

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.

Midweek Magic Inspiring Blogs 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.

photo of person holding alarm clock
Photo by Acharaporn Kamornboonyarush on Pexels.com

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!

IMG_46612A9C68B1-1

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!!

 

plant branch spice alluaudia procera

 

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!

https://irishtwinsmomma.com/postpartum-depression/

https://sybrinapublishing.wordpress.com/2019/05/03/my-review-of-fatality-in-f-by-alexia-gordon/

https://www.musthikemusteat.com/lets-catch-up/

https://melissavsfibromyalgia.com/2019/05/02/my-gut-friendly-coffee-routine/

https://fullofgritandgrace.com/2019/05/01/mental-health-chronic-illness-why-its-critical-we-discuss-them-together/

https://michelevosberg.com/2019/04/30/what-are-you-afraid-of/

http://anordinarymom.site/who-are-you-forgetting-to-invite/

https://myideaofparadiseetc.blogspot.com/2019/05/mothers-day-around-world.html

https://channongray.com/kindness-an-elixir-for-body-and-soul-alike/

https://themighty.com/video/painting-our-pain-ehlers-danlos-syndrome/?utm_source=newsletter_eds&utm_medium=email&utm_campaign=newsletter_eds_2019-04-24&jwsource=cl

Please like, comment and share!

Have a great week,

Claire x

PS: Happy Birthday, Dad!

 

 

The ActivePosture Vest – My Trial and 5 Star Review

Disclosure

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.

ActivePosture

 

Background from the ActivePosture website

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.

 

 

The Product

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.

IMG_0415

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.

IMG_0412

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.

IMG_0413

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.

My thoughts

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).

IMG_0433
Not quite the models from the website, but you need to see the vest on yours truly!

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!

Pin for later

Active Posture Pin

 

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.

Pin for later

Posture Vest pin 2

 

 

 

“I Need You to Need Me” by Pamela Jessen

I have just read a post that I could have written myself – it reminds me of a conversation that was had very recently in our house.  When one half of a couple lives with a chronic condition – be it pain, disability, depression – the “normal” expectations of a relationship change, the boundaries move as partner and lover morphs into either carer or “patient”.

Pamela writes with honesty and gives some realistic suggestions for everyone in her post on There Is Always Hope blog.

intimatecouple

I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:

I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.

How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple.

To read the full post please visit There Is Always Hope Now

Supporting People on Rare Disease Day – My Story shared on Despite Pain blog

Today is Rare Diseases Day and I was delighted to be asked by Elizabeth on Despite Pain blog to share my story of having Cauda Equina Syndrome, alongside Tom Seaman who has Dystonia; Jenny Jones who has Familial Adenomatous Polyposis and Short Bowel Syndrome; and Zoe (aged 12) who has Chronic Recurrent Multifocal Osteomyelitis.

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Rare Disease day 2019 pin

Supporting People on Rare Disease Day – Despite Pain

It can take a lot of courage to discuss health issues with friends and family, but sometimes people put their own health in the public spotlight to help others.

Sharing Matters

When someone has a rare disease, there is often very little information and support, therefore, what these people do really matters so much to so many people. Sharing their stories matters too.

Following on from my post last week, Why We Need to Support Rare Disease Day, I’d like to support a few people who have rare diseases by sharing their stories.

To read the rest of Despite Pain’s post and to read MY story please click here

Twitter banner

The lowdown on Cauda Equina Syndrome
What does cauda equina mean? Well quite literally it is the horse’s tail and the bunch of nerves exiting the base of the spinal cord resemble a tail.
Cauda equina
Cauda equina syndrome occurs when something invades the spinal space and compresses the cauda equina bundle of nerves. Most commonly this is a lumbar disc herniation (as in my case where the disc completely ruptures).
The defining symptoms for CES are
  • Sciatica (neurogenic pain) in the lower back and radiating down one/both legs
  • Bladder dysfunction usually leading to retention but occasionally to frequency, change in flow or incontinence
  • Altered perineal sensation or lack of feeling in the “undercarriage”!
  • Loss of some sexual function/sensation

For more information read:

Science Direct

British Journal of General Practice

Monday Magic – Inspiring Blogs for You!

I can never believe how quickly Monday Magic comes around, but what I do know is that week after week I find just how many fantastic blogs and bloggers there are in the blogosphere!

Monday Magic 25th Feb

The stand out story for me this week was that of Tony Foulds, the Sheffield pensioner who has cared for the memorial to 10 US airman who, as a child, he saw crash in his local park.  The crew of the Mi Amigo attempted to land their damaged aircraft in the Sheffield park where Tony and his friends were playing, but when the airman waved to the children to move, the youngsters merely waved back.  It remains the biggest regret of Tony’s life that as an 8 year old he thought the pilot was waving to him, not at him to move, and thus flew the craft into woods where the plane crashed.  When a BBC journalist heard that Tony’s greatest wish was to have a flag pole and a fly past on the 75th anniversary of the crash, he set about making it happen.  Relatives of the Mi Amigo crew joined thousands of local people as Tony watched the US and British airforces fly overhead – one plane for each airman.  Every time I have watched, Tony Foulds has reduced me to tears with his passion and his firm belief in caring for the memorial of the strangers he calls family. (See the full story here: https://www.facebook.com/bbcbreakfast/videos/642676716166370/)

In our household hubby went to Cambridge with my brother who had treated him for his birthday to a Prog Rock weekend….not my cup of tea, but they had a good time listening to loud music (Steve Rothery of Marillion fame) and visiting RAF Duxford.

 

So that left me in the capable hands of my lovely girl – yes, a girls’ weekend! I would love to be able to report a time of shopping and clubbing – once upon a time definitely! – but it was more like artwork (hers not mine) and a film.  The weather has been beautiful for February, so we managed to get ourselves to my parents’ house under our own steam.  Now I know that friends who know us in person are laughing now and yes, it is the same road…..but yours truly had the very tricky job of steering the new motorised chariot out of the patio doors, down the ramp, along the side entrance and out into the street.  Then the local council have seen fit to install temporary traffic lights at the roundabout that separates our end of the road from theirs, so I had an unexpected negotiation and a girl getting very worried her mum was going the wrong way in the road!  Fear not – my driving skills are improving and I was able to report to hubby that we had made it in one piece and then I used the headlight he had fitted to guide us home in the dark.  Well, ok it is a bike light and the street lights were on, but it still means that I can be seen coming!!  But to be serious, I really enjoyed the feeling of independence which I hadn’t quite expected!

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I mentioned above that I have found some fab blog posts for you and some of these are from a lovely facebook group that I belong to – Sharing, Inspiring, Promoting Bloggers.  The first on the list is giving a shout out to Rare Disease Day, later this week on 28th Feb – please have a look at the bloggers who have shared their stories in part one of Despite Pain’s series.  Yours truly will be featured in the next episode talking about cauda equina syndrome – I will share this with you later this week.  Meanwhile sit back, grab a cuppa and enjoy!

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https://despitepain.com/2019/02/18/why-we-need-to-support-rare-disease-day/

https://wheelescapades.com/2019/02/21/12-frustrations-of-being-a-wheelchair-user/

https://ginlemonade.com/2019/02/13/house-hunting-as-a-wheelchair-user-other-stories/

https://yesterdayafter.com/2019/02/19/art-for-music-series-aurora-portrait-new-release/

https://jumpstartpositivity.com/simple-things/

https://youcanalwaysstartnow.wordpress.com/2019/02/18/dont-be-rigid-and-brittle/

https://collinscrohns.wordpress.com/2019/01/04/top-chronic-illness-books-and-blogs-of-2018/

http://angelanoelauthor.com/guest-post/published-elsewhere/out-of-my-comfort-zone-why-i-wrote-an-essay-that-scares-me-a-little/

https://anhistorianabouttown.com/six-the-musical-review/

https://myblurredworld.com/2019/02/24/online-world-accessibility/

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Have a great week,

Claire x