“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.

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                                   “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).

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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!!”

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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

 

Feeling Isolated in a Storm #chronicillness

I’m without internet.  I’m without live TV.  There has been a storm here in the UK this morning – and I’m not referring to the events of the Supreme Court – and it has left this bendy body reeling.

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Feeling Isolated in a Storm

 

The baggy blood vessels and dodgy nerve signals that accompany dysautonomia have been complaining over the last couple of days, but the storm of thunder and lightning outside the window is now being mimicked by the different syndromes inhabiting this body of mine.

IMG_0401

 

In other words, yours truly is unable to sit upright, much less stand without a gross centre of gravity failure.  I should mention here that the dislocated shoulder tends to put me off balance too, but imagine the feeling getting off a fairground ride, add in black blobs in front of your eyes and you get the picture.

 

purple lighted ferris wheel
Photo by sergio souza on Pexels.com

 

So, what is a girl to do? Attend a rheumatology appointment? No better cancel that as hubby can’t get me out of the house! Watch the news unfolding outside the High court and keep track of events on Twitter; tune in to favourite Netflix programmes whilst reading and scheduling posts for the Chronic Illness Bloggers; catch up with favourite bloggers and watch daytime TV? NO……

 

It is at times like this that I realise how much I value my online support and friendships from fellow bloggers to tweeters to Facebook groups and other chronic pals.  I appreciate how much more isolating chronic illness and disability must have been prior to the emergence of the IT world. The storm outside the window is over(ish) and the sun has been streaming in, but the damage it has done is ongoing to my technical equipment……but maybe the effect on the body can mimic the sunshine.  Here’s hoping! Now where did I leave my Kindle?

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(Written on Monday – I will publish just as soon as I can get back online!!!)

 

Some Chronic Pain Thoughts – A Chronic Voice Link Up

Every month Sheryl at A Chronic Voice hosts a link up for chronic illness bloggers giving prompts to share thoughts and experiences.  The prompts for September are Finding, Researching, Dating, Reusing, Recounting…….

Some chronic pain thoughts

September has rolled in and I find myself thinking about my pain – specifically my chronic nerve pain – even more than at other times.  This month is the anniversary of the trial for my spinal cord stimulator implant and I can’t help but find myself RECOUNTING the events that led to this.  The ongoing and relentless feelings from the lower back down to the toes – electric shocks, burning, creeping, cold, running fluids, sharp, creeping – to name but a few of the words that describe nerve pain.  Drug after drug, surgery after surgery and the accompanying feelings of hopelessness as each fails to bring some relief to this untameable beast.

Recounting 1

 

 

Another referral followed, this time to a pain clinic – but which health professional would stick their head above the parapet and take me on?  At some time most chronic pain sufferers will experience doubt – doubt about the physical symptoms being experienced, doubt about your own sanity and doubt as to whether family and friends believe you.  “How can it be possible to have so much pain if nothing shows on a scan?” “Try not to think about it all the time” “You need to pull yourself together” – just a taste of the messages that might be received.  By the time I was under the pain clinic in London, I was FINDING myself regularly questioning whether the pain was in my head, how I could carry on living like this and just what would the expectation of the clinic psychologist be.  I knew that my referral was with a view to having a spinal cord stimulator implanted, but I also knew that I would have to fulfil certain criteria first including attending a pain course. Most pain courses will have a large psychological element and this was no different – over the next fortnight we attendees would be FINDING ourselves sitting on a “metaphorical” bus with our fellow passengers representing the parts of life affected by our chronic pain: body, mind, loved ones, employment, friendships, emotions, self esteem, social interaction, sleep, finances, independence….the passengers were endless and deeply personal.

Finding

 

 

It was important, and remains the case, to understand that our chronic pain cannot be completely alleviated by drugs and that no one should medicate to do so – as discussed recently by Chronic Mom – or by a device such as a spinal cord stimulator.  In fact the medics were very clear that this form of  symptom control will not help everyone and may even make some symptoms worse.  The months between leaving the relative safety of the course and returning to have the trial procedure were spent RESEARCHING spinal cord stimulators/neuromodulation and exactly how it might help mask chronic nerve pain.  This led me to the world of forums, self help/pain groups and blogs – what an abundance of information and support is out there.  Sadly there is also an abundance of suffering out there and at the time I was staggered by both the number of people living with chronic illness but also by the outpouring of support that I received.  I can honestly say that this led me to decide the night before my trial surgery to start my own blog for both family and friends and to offer my support/story for others.

Researching

 

 

Hubby recalls the morning of the trial clearly and says that it was the most nervous he had ever seen me before surgery – and in many ways it was far less invasive and much shorter than my other ops, including my caesarian sections!  I felt physically sick and very scared to the point of standing on the doorstep of Guy’s Hospital, London at 7.30am and declaring I was going home.  Why did I feel like this?  I think it was the genuine fear of the future if it didn’t help – the fear of living alongside this pain with no control or relief for the next 40 or more years.  How many of my chronic pain friends have found themselves in this situation at one time or another, I wonder?  My guess would be the majority and this would cover a huge variety of different pains – maybe you can share with me!  This fear can be mentally draining and lead to psychological trauma, depression and even suicide.  I have been fortunate that the implant and connected wire/electrodes sitting snugly by my spinal cord do give me some relief, but there is a constant fear that one morning I will wake up, switch the device on and find that the wire has moved or the pain just is no longer covered by the device.  Of course this only covers one of the many pains weaving in and out of my body parts – at the moment I would love to have it extended to cover the nerve pain running from my neck to my fingers!  What a pity there is no easy fix, no magic wand for all our pain types.

So this brings me on to RE-USING some of the techniques that we were taught during the programme to help to manage pain.  These were all well recognised methods including:

  • gentle exercise – to improve physical fitness, stamina, muscle tone, spacial awareness and a sense of well being.  It is well documented that for back pain particularly,  immobility will often increase pain and muscle spasm.
  • mindfulness and/or meditation – including using guided imagery
  • breathing techniques and relaxation – to help challenge negative thoughts and stress which can increase pain levels
  • recognising and understanding the root causes of chronic pain – including how medication may or may not help to reduce pain
  • accepting that chronic pain can rarely be cured but that it is possible to move forward to live a full life
  • heat therapy (heat pads, wheat bags), cold therapy, hydrotherapy
  • pacing – learning to pace oneself in order to undertake daily tasks from washing to socialising
  • social interaction and talking – including talking therapies
  • combining all of the above to cope during a flare of symptoms

I am constantly reusing these techniques in order to live day to day with my own chronic pain.  It is important for me to have realistic and attainable expectations and yet still be able to live – remembering some days this is easier than others!

Reusing

 

So just how do I introduce the word DATING into this post?  Well my dating these days consists of a calendar highlighted with a series of “dates” with different hospitals and specialities – I believe that rheumatology and gastroenterology are to be personal highs in the coming weeks.  Add to this a mix of date nights with the spinal cord stimulator charger to ensure my internal battery never runs out(!) and binge watching favourite Netflix shows (currently iZombie) and you will be starting to get the picture of the heady extent of dating in the senior PainPals household……

Dating 1

 

To read other contributions to this month’s A Chronic Voice link up visit here!

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This is also shared to Esme’s Senior Salon part of the Sharing, Inspiring and Promoting Bloggers group

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Midweek Magic – and some Inspiring Blogs for You!

It has been a momentous week for several reasons.  Hubby and I were planning a trip to visit his parents and true to form I was so unwell at the beginning of last week that it was looking like we would have to cancel….yet again.  I am ashamed to say that it has been over 3 years since I last managed the 4 hour journey, in fact it was when I stayed with them after my spinal cord stimulator surgery.  Please believe me when I say that it is not that I don’t love my in laws but rather that every time we have planned a visit my body has disagreed.  There have been shoulder dislocations, POTS flares and neck problems – not forgetting that my chronic back pain prevents me from sitting still for long periods.

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Midweek Magic Inspiring Blogs for You! 22 Aug

Something that goes hand in hand with a chronic illness is unpredictability and then the inability to make plans – and the guilt at having to break plans.  So when Tuesday morning dawned and I couldn’t sit upright, I felt that I had let everyone down yet again.  Wednesday arrived and we decided to give it a go.  The electric wheelchair was hoisted into the car, I was settled in surrounded by cushions, an Audible series was downloaded and we were away.  It wasn’t an easy journey, but I made it even if I did have to swap one sofa for another!

IMG_2418I had a different furry friend to keep me company following a faint – Lexi the pug – and I enjoyed the freedom that my electric wheels gave me during a trip into Hereford city centre.  My driving skills are improving!  IMG_0605With the weather breaking in the UK my symptoms are more manageable now and the fainting is under control – would you believe though that the wet, clammy, stormy weather causes as many problems with this body barometer of mine as the really hot days?!

 

 

 

 

 

This week the lovely girl started work experience with big brother, the young engineer.  How I wish I could have been a fly on the wall!!  He wants her to help with design elements of…….um, I wish I knew or understood!

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It seems to have gone well, but she laughed in the change in her big brother as soon as they got home reverting from boss to twit!  The whole family has enjoyed playing with my latest toy that arrived this week – a recliner chair which has already saved me during a POTSie episode today as it will lay me almost flat.  The young engineer was so excited by the integral USB port that he almost face planted on the floor when lifting himself to standing too far!! I will give you a chair review when I have had it for a couple of weeks.

So back to business and sharing some great blog posts with you.  I have found a couple of posts about writing – for lovely Ritu the publication of her novel is in sight (if it is as good as her cakes it will be fab) – tips to boost your family’s health, and some lovely posts from chronic illness pals.  So sit back with a cuppa and enjoy!

https://www.therollingtwenties.com/2019/08/love-to-write-part-3.html

https://ritubhathal.com/2019/08/20/when-it-all-gets-a-bit-too-much/

https://livelovetexas.com/homemade-apple-cinnamon-sugar-scrub-recipe/

https://hughsviewsandnews.com/2019/08/12/blogging-with-a-little-help-from-your-friends-a-guest-post-by-sherri-matthews-writersherri/

https://www.realisticoptimism.org/post/can-exhaustion-work-for-you

https://www.angiecruise.com/how-to-boost-your-immune-system-naturally-before-school-starts/

https://crazychroniclife.wordpress.com/2019/06/25/a-pep-talk-to-myself-and-anyone-else-that-needs-it/

https://bucketsoftea.co.uk/happiness/five-things-to-put-a-real-smile-on-your-face/

https://chronicrants.com/2019/08/21/would-it-be-different-if-i-werent-a-woman/

https://positivelyrachel.com/2019/08/14/mindful-impact/

Please make someone’s day with a like, a comment or a share if you enjoy their post!

Have a great week,

Claire x

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Midweek Magic Inspiring Blogs for You! 1 22Aug

 

 

 

 

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

A Zebra Returns – when a Flare combines with Brain Fog and equals a Blog Drought

Why is it that chronic illness can leave you feeling like a hypochondriac? When one thing leads to another and then another and then yet another? A flare of days turns to weeks turns to months……

adult alone despair emotion
Photo by Ana Bregantin on Pexels.com

When I wrote my last blog post I had no idea and certainly no intention that it would take me so long before I would be back again.  So often we speak of pacing and the need to prioritise for our own self preservation, but even this can become physically and mentally exhausting.

Chronic pain combined with brain fog, combined with the disability of the dislocated right shoulder (yes of course I am right handed), multiplied by the hot weather doubling the effects of POTS and the number of faints, equals in some strange algebraic type equation a hell of a couple of months!!

 

A Zebra Returns 1

I am lucky to be an admin for a great group called the Chronic Illness Bloggers and I always prioritise the scheduling of their posts to Facebook as number one each week.  This means reading each blogger’s post to check that it adheres to the group rules ahead of scheduling and this is a past time that I look forward to – my guilty pleasure, for sure.  There are some seriously good writers out there and each week I come away having learnt something new, hungry to try another different recipe and generally inspired by our community. Brain fog and painful hand spasms have led to writer’s block on several different levels for my own writing……and on reading some of these wonderfully written and thought provoking blog posts, I have actually questioned my ability to write and felt a little intimidated.

The longer my flare and writing drought have endured the harder it has been to find my way back.  The inevitable thoughts of losing readers and poor stats start to creep in as the ever popular “how to write a successful blog” type posts crop up daily on my social media feeds.  Social media – aghhh! Has anyone else found themselves drowning in the inability to keep up with all the different platforms, when a head that has been stuffed with a mixture of cotton wool and candy floss will not allow you to remember how to even eat breakfast?  Scrolling down the ipad on Instagram is enough to set off hand pains, and keeping up with world politics on Twitter is enough to trigger a migraine!

adult alone anxious black and white
Photo by Kat Jayne on Pexels.com

 

Two days later and I am back to try to finish this post.  The last couple of days have been filled with fainting, trip to the doctor, more fainting, CIB scheduling, even more fainting and….oh no, the increase in symptoms caused by monthly hormonal fluctuations!!  Great.  But….I have read and scheduled more blog posts – found great tips on managing pain, journaling, the importance of a great support network to name but a few – and I thought about why I started blogging in the first place.  I knew nothing about stats and social media platforms – I wasn’t on Facebook or Twitter, and Instagram was just a word that the kids threw about.  Not once did I think about the numbers who might read my ramblings about chronic illness and family life. I wanted to share my experience of living with chronic pain and chronic illness – at the time having a spinal cord stimulator implanted to help with nerve pain – and maybe give something in the same way that I had received support and hope from other blogs.  Writing can be therapy, a distraction, an outlet, a hobby and a sanctuary.

So here sits this zebra attempting to write…hopeful and thankful and wanting to re-engage with this wonderful blog family.

 

A Zebra Returns

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PS: I am also the owner of some fab mauve fingerless compression gloves that help keep the spasms at bay when I type – hurray! IMG_0600

 

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.

 

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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