New Beginnings from the Storm – A Chronic Voice Link Up

This is written using the prompts given by Sheryl for February link up at A Chronic Voice

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New Beginnings from the Storm

The storm within my body brews

Changing the outlook daily

Swirling, drifting, creeping

One step forward, three steps back

Adjusting to the physical.

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What of my mind though?

How does the mental deal with the physical?

The physical is tiring

But the mental is exhausting,

Crushing the buds of hoping underfoot.

Some hope slumbers beneath the pain storm

As the first weak spring rays break out

Warming both my body and mind

Helping those surviving buds

To thrive and blossom.4k-wallpaper-baby-s-breath-backlit-1312449.jpg

Become something positive and hopeful

Harnessing my body and mind,

The physical and mental,

Into befriending both myself

And others living just like me.

Our virtual world of chronic storms

Brings the warmth and sunshine

Of support and care,

The awakening of new beginnings

New friendships, new hope.

 

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Pin for later

New Beginnings pin

Just Another Day – with EDS & POTS

 

Just Another Day pin

 

The world feels off kilter

I’m spinning…..round and round

Every time I lift my head

The snow  descends, engulfs me

At times it overwhelms me

And then, bang, down I fall.

 

Lucy EDS 1

 

Falling, falling, twisting down

How long it takes to reach the ground

Slow motion into blackness

Nothingness

Painless

Floating.

 

Pain, pain, pain

Why am I on the ground?

A twist here and a bend there

Limbs entangled, joints at angles

Unnatural, except for me

Stretch and snap is the norm.

 

Lucy EDS 2

Salt, water; water, salt

Compression to limbs.

Like an autumn leaf

I fall and break

My body fragile, unstable

Just another day with EDS and POTS.

POTS & Me

 

 

 

 

Monday Magic – Inspiring Blogs for You!

We are celebrating our final bank holiday weekend of the year and in true UK style it is raining!  The long, hot days of only a couple of weeks ago feel like a world away, whilst last night yours truly turned on the electric blanket and added a dressing gown to the bed clothes.  Now the fight will be on between husband and wife for changing to a warmer duvet (me) or sticking with the summer one (him).  I must look into these split weight duvets – have any of tried them? Anyway, the wife will win!!

Monday Magic - 27 aug

 

This week has felt a little surreal if I am honest with you.  The politics student called mid week to say that he could only sleep on his mate’s floor in Nottingham until Saturday – OK, so what do you expect me to do about it??  Well, my final exam isn’t until Tuesday……good old mum puts a shout out to a couple of Nottingham based school friends, but of course it is a BH weekend and guess what, my boy?!  A lot of people go away – and that is why my friends aren’t about but also why the B&B/hostels are all booked!!  He is fortunate that we found an Air BnB – affordable and in walking distance of uni; but arranging transport home was slightly trickier as he hadn’t told me his exam isn’t until 4.30 Tuesday afternoon.  But……with a bit of internet surfing, I was amazed to get him and his friend onto a coach on Tuesday evening, back to London for £15 for the two of them!  Bargain!!  It will probably cost as much to get back from London to home (30 mins on the train!).

Amidst the dramas of the “middle” child, came the exam results of the youngest – the lovely girl.  I did mention a little about this in yesterday’s post.  Needless to say it was mum here who didn’t sleep well the night before and had strange dreams – we knew she would have got the requirements for 6th form, bar a complete disaster, but as the exams have been new this year and she was taking a mixture of the new levels 1-9 and the old grades A*-G, anything was possible.  Thursday morning came, she got up and did her paper round, and I was awoken to squeals as she opened the email – oh my goodness!  I am not allowed to say any more, but if your follow me on twitter of facebook you will know that she didn’t need to worry about me posting her results and picture all over social media – the school did it!! (here!!)).  As I said I’m not allowed to say anything – but delight, surreal, shocked, unbelievable….you get the picture!!

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The young engineer has been a bit put out that his little sister beat him – in fact beat both her brothers – but secretly he is very proud.  In fact on Friday evening he and his partner were going to the theatre with the lovely girl and her friend (who did just as well) – and he took them out for dinner beforehand to celebrate.  Now this is a huge deal as he has always been the “tight” kid of the 3!!!

So moving on from the act of sibling love in my household to the first blog that I’m sharing with you this week – it comes from Rachna and she describes a beautiful festival that traditionally recognises and honours sibling love.  I particularly like the post on ClockWorkClouds that discussed the uses of certain words – how does using “should” rather than”would” change the feel of a situation?  I hope that you will also enjoy some culture with an artist’s exhibition, a book review, flash fiction story and do read the Trolls’ poem, it is funny!  There are also some life posts here too that would benefit everyone.

So grab a cuppa, put your feet up and enjoy some great blog posts!

https://www.rachnaparmar.com/2018/08/raksha-bandhan-a-beautiful-festival-of-sibling-love.html

https://clockworkclouds.wordpress.com/2018/08/27/5945/

https://bootsshoesandfashion.com/a-visit-to-the-orla-kiely-exhibition/poster_2500_1

http://zooloobookblog.co.uk/bookreview-her-final-hour-bookouture/

https://www.mollytotoro.com/2018/08/the-artists-way-for-midlife-vitality/

https://thedarknetizen.wordpress.com/2018/08/26/flash-fiction-the-inn/

http://allthatjazmin.com/mental-health/getting-a-late-autism-diagnosis/

https://teaandcakeforthesoul.wordpress.com/2018/08/27/beware-of-the-trolls-poems-from-simply-modern-life-by-claire-baldry-bookexcerpt/

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https://www.funasagran.co.uk/2018/08/5-essentials-to-improve-your-pets-life.html

https://www.sizzlingtowardssixty.com.au/5-ways-to-start-appreciating-yourself-start-thriving/

As always , please share some love for these bloggers!

Have a great week,

Claire x

 

 

 

Monday Magic – Happy New Year! Inspiring blogs to start 2018

Happy New Year, Pain Pals! Welcome to 2018….

Monday Magic - Inspiring Blogs for You!

I hope that you have all had a wonderful holiday season – I appreciate that for many of you this will have been hampered by health problems, for others it may be the first year since a bereavement, or just simply a difficult time – but we have to believe that there is always something positive, even out of negatives (hope my eldest is reading…..we call him Mr Glass half empty!).

I’m not going to do a look back at my year and bore you silly…..this week is probably enough.  Our week hasn’t gone exactly to plan – when does it ever? – with yours truly managing to fall off the sofa (I know, I know!) and putting out my shoulders, neck, ankle and hip in one foul swoop!! Of course this would be the night before we were due to travel to visit the in laws…..add hubby having a horrendous case of man flu (actually he has the most awful chesty cough and was banished to an empty child’s bed last night!) and the trip is off.  if you are reading, Dave and Wendy – I am so sorry! Kids are too as it meant any plans for New Year’s Eve parties in this house were ruined…..the teen girls due to gather decamped to another location and at the time of writing we have had no communications from the lovely girl! Plus one boy still old cold and snoring in bed here, having made it home.

Boxing Day

But two huge positives for me were managing a lovely family meal out on Boxing Day, and hosting the extended family the day after.  My brother’s family, the student engineer’s partner, and of course my lovely parents…..plus the drone that one very silly auntie bought her nephew for Christmas.  Well I didn’t think he would be flying it around my living room!!!

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I have put together a huge list of New Year blog posts for you from some of my blogging family…..many from the Big Up Your Blog community, others from Chronic Illness Bloggers.  There are reflections, good wishes, goals & resolutions, poetry and don’t miss Phil’s hilarious Predictions from a legit Psychic!  Plus the first is a great blogging invitation on Smorgasbord.  Sit back with a glass of something good (dry Jan can start tomorrow!) and enjoy.

https://smorgasbordinvitation.wordpress.com/2018/01/01/happy-new-year-and-the-start-of-the-2018-series-of-smorgasbord-posts-from-your-archives/

https://cristianmihai.net/2018/01/01/a-new-beginning/

https://www.linkedin.com/pulse/prepared-give-your-100-2018-jez-cartwright/?trackingId=o8g10gFzhm1TEUaBd7y6nQ%3D%3D

https://mashaellman.com/2017/12/30/my-wish-for-you-2018/

https://medicalmysterymusings.wordpress.com/2018/01/01/reflect-and-restart/

https://www.navigatingthestorms.com/fun-things/holidays/making-new-years-resolutions-first-do-this/

http://shesnotsobasic.com/new-years-affirmtaions/

https://therightdirections.wordpress.com/2017/12/26/2018/

http://www.theressomethingaboutkm.com/the-circle-of-knowledge-2017/

https://thephilfactor.com/2017/12/30/2018-predictions-from-a-legit-psychic/

https://blushandbrewsblog.wordpress.com/2017/12/29/faves-2017-book-edition/

http://sportfitnessjourney.com/running-resolutions-newyear/

https://brainlessblogger.net/2017/12/31/my-new-years-resolution-compassion/

https://mistybooks.wordpress.com/2016/12/31/resolutions-be-careful-what-you-wish-for/

http://supermomhacks.com/lessons-in-parenting/on-new-years-goals/

https://wheelescapades.com/2017/12/28/best-nine-of-2017/

https://suzie81speaks.com/2017/12/18/smoke-and-mirrors-how-to-avoid-hating-your-blog-in-2018/

https://www.midlifesmarts.com/celebrate-new-year-scotland-style/

https://illness-to-wellness.com/2017/12/28/preparing-for-the-new-year-pick-5/

https://vinzpoetry.wordpress.com/2018/01/01/new-year-better-be-nice/

Please be kind and share some love for these bloggers with likes, shares and comments!

Happy New Year! 

Claire x

I Am Here

I am here,

Do you still see me?

My heart is beating

Within my broken shell.

A mind is playing

The words of a lifetime

The will is surviving

To write a legacy well.I Am Here pin

Am I succeeding?

Am I still growing?

In spite of a body

That creaks with pain.

My mind is creating

My will is still flowing

To harness experience

For a generation to gain.

I may be unseen

Not always present,

But can you still see me?

Here I remain.

Claire Saul

School Runs and Shopping Trolleys

My Monday Motivation to remind myself and others that no matter what, I can still make a difference!

Monday Magic – Inspiring Blogs for You!

Monday Magic

Good Morning, all!  Hope that those of you enjoying a Bank Holiday are having a fantastic day, and that everyone else has had a great weekend!

The weather is beautiful here and we have a family BBQ planned for later in the day – coincidental, but it just happens to be my parents 52nd wedding anniversary.  Dad would tell you that he would get less for a life sentence!!

A very good friend contacted me earlier in the week with the sad news that her mum had died.  She has been living in a nursing home for several years now and has gradually deteriorated, but in recent weeks she took a turn for the worse with a bad chest infection and just wasn’t strong enough to fight it. This week has been very hard for my friend, her brother & sister, and particularly her dad.  They had been married over 60 years.  It struck me that no matter how old or how sick a loved one is, the sense of loss at a death just can’t be anticipated.

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Beautiful bank holiday Monday!

When I received that message my own mum was here and I should probably point out that we have a great relationship.  She has been staying with me whilst the family have been away and has effectively been my carer again! Talk about turning the clock back, becoming the child again.  I felt so dependent physically and even a short car journey left me struggling, but it never fails to amaze me how that parent/child psychological bond is always there.  No matter how old you are,  it is always possible to feel like a teen again! A naughty teen at times!  Seriously though, thanks mum, I couldn’t have managed without you.

This week I have been able to spend time finding new groups and meeting new bloggers online.  So the inspiring blog posts I have for you are from a mixture of sources – one of them being the Facebook group Big Up Your Blog! – run by Suzie from “Suzie Speaks”.  I have included her post about self censorship on our blogs – it is something all bloggers should read, no matter what your content matter. I think that I have probably failed miserably on all counts!!  There is also a beautiful poem about a relationship break up, the role we play ins supporting new mothers emotionally and a shout out for a new disability campaign for parents later this year.

So as usual, grab a coffee, sit back and enjoy…..

https://suzie81speaks.com/2017/07/08/should-you-self-censor-your-personal-blog/

https://fancypaperblog.wordpress.com/2017/08/22/mental-health-be-kinder-to-new-mothers/?fref=gc

https://iwillnotliveinvain.wordpress.com/2017/08/26/vaguely-nauseated/

https://mindovermetablog.wordpress.com/2017/02/22/why-its-sometimes-good-to-look-back/

https://jellified.wordpress.com/2017/08/25/from-the-start/

https://addandsomuchmore.com/about-the-name-add/

https://nolightwithoutdarkness.com/2017/08/23/when-your-mental-health-affects-your-job/

https://fibromyalgia-chronic-pain.blogspot.co.uk/2017/01/to-reduce-stress-and-pain-in-your-hands.html

https://cfsmeandkingdomliving.wordpress.com/2017/08/27/redefining-the-dark/

http://blossomandcompany.co.uk/italkdisability-campaign/

Please remember to comment, check out other posts on these blogs and find a new writer to follow,

Claire x

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SHE….being invincible in pain

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My lovely girl drew this image for me of our pain, different for us both but with the same underlying genetic cause, and these words by poet Ariana Dancu seemed to fit perfectly in rising above the flames of pain.

It has been a tricky week as the family visited my husband’s parents,  but I was too unwell, sporting a chronic dislocation & increased pain, to make the long car journey.  Instead I remained at home where I was able to relax, stay in my PJs and binge watch Netflix, but had to rely on my parents to look after me.  Talk about feeling like a teenager again……

Lucy’s picture really depicts how my different pains have been all consuming this week….and yes, I am still sporting a snazzy velcro sling!  Hopefully there will be a real post tomorrow!

Monday Magic – Inspiring Blogs for You!

Another week, another Monday – so that means one thing here at PainPals!  Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!

Monday Magic

There have been two major events in our house over the last week.  The first was a long awaited appointment with a geneticist for the beautiful girl(BG).  I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation.  Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis.  My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18.  So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18!  Then the children’s department decided that they really weren’t the right people to see the BG.  Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.

Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating.  Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history.  The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself.  No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems.  Ringing bells in my ears!!!  More of this in another post…..

The second major event was our old dog Sam having a massive haircut with our fantastic groomer.  Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back,  hips and rear legs.  He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy!  He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.

Sammy
Spoonie Sammy

Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before.  Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health!  Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great!  If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.

Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends!  The first post is a shout out award for all us spoonie bloggers!

http://www.balancedespitethechaos.com/blog/an-award

https://jamisonwrites.com/2017/07/12/this-is-why-i-hate-summer/

https://sewprettyinpink.wordpress.com/

http://www.thisautoimmunelife.com/2017/07/23/national-cheesecake-day/

https://whenwomeninspire.com/2017/07/22/mental-health-tips-for-women/

https://bethanykays.com/2017/07/24/poetry-45/

https://beingcharis.com/2017/07/20/qa-with-charis-about-her-journey-with-ankylosing-spondylitis/

https://sleepysantosha.com/how-to-start-yoga/   plus Youtube channel: https://www.youtube.com/channel/UC0ROkm_8Bjk0qOQ13XYOebg/feed

https://carlyscrazychroniclife.wordpress.com/2017/07/11/alternative-therapies-or-not/

http://voiceathlete.co.uk/dystonia/

http://momssmallvictories.com/self-care-for-moms-with-chronic-pain/

https://www.my-ra-perspective.com/single-post/2017/04/24/Working-and-Disability-Advice-on-working-while-disabled-and-knowing-your-limits

https://edsjour.blogspot.co.uk/2017/07/10-tips-for-coping-while-in-waiting-room.html

http://www.bloomingmindfulness.co.uk/?p=440

http://www.mesheacrysup.com/blog-living-a-fibrolife/re-visitedfibrosecretc-part-5-i-was-afraid-to-have-a-good-day

Funfetti-Cheesecake
Picture from “this autoimmune life” blog

Please make someone’s day with a follow, like and comment!

Claire x

I have shared this post with Honest Mum blog


Brilliant blog posts on HonestMum.com

Today, You beat Me

Today, You beat me,

I woke with You again

Wrapped about my back like a lover,

Pulling at my limbs

My shoulders splayed

My joints pulled with gravity.

 

Today, You never let up.

I tried to lose You

But You brashly force out the monster,

The worst version of myself

Cross and bitter,

My loved ones suffer.SONY DSC

 

Today, You rob me.

My time is destroyed,

I cannot sit and idle in peace

For my body betrays me,

As you are with me

Within, trapping me.

 

Today, You beat me.

My body is weakened

And tears have fallen as spirit breaks.

So, so tired, no way back

I am bereft.

Pain, You have won.

 

Claire Saul

 

Today you beat me pin