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

 

 

 

 

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!

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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

 

Monday Magic – Inspiring Blogs for You!

Very little preamble today PainPals – I’ve been battling the onset of a migraine all weekend and it finally broke free this morning, leaving me moribund on the sofa.  My surrogate furbaby Chester apparently kept me company for a couple of hours snuggled up next to me – although I had no idea!  You’ve had my post about books and reviewing already today so I will plunge straight in with some blogs for you.

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https://hughsviewsandnews.com/2018/08/13/5-ways-you-can-save-time-when-blogging/

https://imsickandsoareyou.com/2018/08/09/six-and-a-half-ways-to-cure-writers-block/

https://www.healthyeatingexperts.com/spoonie-secrets/

https://butismileanyway.com/2018/08/10/living-life-keto-style-kindaketo/

https://www.shallowreflections.com/taking-drastic-steps-to-protect-my-noggin/

https://clockworkclouds.wordpress.com/2018/08/06/cracks-in-the-porcelain/

https://ellenbest24.wordpress.com/2018/07/29/watch-right-of-passage-on-youtube-fgm/

https://dreamingandreading.com/2018/08/07/ttt-top-ten-tuesday-sequels-i-am-dying-in-my-tbr-read/

https://sv3dprinter.com/?p=7400 – 3D printing for spinal cord injuries

https://topladytalks.com/2018/08/13/playing-odd-man-out-not-today-reminiscences-of-an-accessible-holiday/

Please like, comment and share!

Have a great week,

Claire x

 

 

 

 

 

Monday Magic – Inspiring Blogs for You!

Happy Monday, Pain Pals, and a belated Happy Mother’s Day to all in the USA.  I have just had a really busy weekend – that I plan to write about this week -and am struggling to sit upright today, so I’m not writing my normal preamble about life in the PainPals household. I’m not sure how much sense you would get out of me….

Monday Magic Inspiring Blogs for You! 14 may

 

So I will launch straight into the blogs that I have found for you….there is a wonderful life lessons post from 100 year olds, a letter to the person feeling suicidal, a letter from a mother to the child she carried but never met for Mother’s day and a practical post about moving your blog to wordpress.com.  I really need to sort this out myself!!  Finally I could not let the opportunity go by to slip another a zebra post for May – this book review is fantastic and I could not do better myself for the book that has become our family bible (no offence intended to anyone).

So sit back (I have a cuppa and slice of my Dad’s gluten free coffee birthday cake – made by mum!), relax and enjoy some fantastic bloggers’ writing.

https://www.mymeenalife.com/signs-need-new-rheumatologist/

https://writedownthemidddle.blogspot.co.uk/2017/08/pointing-to-myself.html

https://illness-to-wellness.com/2018/05/10/whylive/

https://thepurplealmond.com/2017/03/02/life-lessons-from-100-plus-year-olds/

https://weeklydoseofsue.com/2018/05/13/gob-stopping-comebacks-for-nitwits/

https://awriteradolescentmuse.wordpress.com/2018/05/14/monday-memoir-unforgettable/

https://en.blog.wordpress.com/2018/05/14/transfer-your-existing-domain-to-wordpress-com/

https://thisgirlsgotcurves.wordpress.com/2018/05/14/pathology/

https://wordsthroughthedarkness.wordpress.com/2018/05/13/mothers-day-2018/

https://scienceoveracuppa.com/2018/02/11/book-review-understanding-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorder/

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Please share these posts and leave some comments or likes – make a blogger very happy!

I look forward to writing you some more when the brain and body start to function…in sync!

Have a great week, Claire

 

 

The Blessed Project

Flicking through the blog posts on the blog share threads last weekend (Big Up Your Blog), one from Susie Lindau’s Wild Ride leapt off the page at me.  She has invited bloggers to join her in a very special, positive experience – The Blessed Project.

Susie says “Last year, I posted a list of blessings and included a few photos. The exercise took me to a place in my heart filled with love, gratitude, happiness, and sparkly things. My favorite! For the time it took to create the list, it banished bad news, headlines, and normal everyday frustrations like surfing to buy the perfect gift which is as slippery as Elf on a Shelf.”  What could possible be better at this time of the year than to focus on blessings…and some photos to embarrass your kids??

So where shall I start?

My family naturally…..hubby Duncan puts up with a lot, particularly on those flare days when I am horrible to be around, but he is always there.  He spends half his life running me to different hospitals across London and never (well almost never) complains and is always there to pick up the pieces – or just to pick me up!!

The kids…..it is challenging having the student engineer living back at home after 3 years away and my kitchen is living proof, but he is getting better at catching me before I pass out.  The middle one – do all middle children play on the old adage that middle borns have such a tough time? – is due home from uni next weekend and it will be lovely to see him (I think – dirty washing???).  We haven’t heard much from him, but presume that is a good thing – although he does send regular pics to his sister.  Finally my baby – my lovely girl.  She drives me mad with her untidiness, but she looks after me over and above what a teen should have to do for her mum – and constantly plays down the fact that she also has the same condition.

My parents – they live up the road and without them our lives would be so much harder on so many levels. Thank you, Mum & Dad!

Photo 28-06-2016, 12 15 43
Their first and only selfie!

My wheelchair – yes really!  It has given me a new lease of life as my mobility has decreased and pain has increased.  I have spent the last few years struggling to maintain some independence and to walk.  But the back pain initially and then the disabling effects of 2 back fusions (they really did add to my problems) and more hip dislocations have led to first funky walking sticks, then Smart crutches and now my wheels.  Not what I wanted during my 40s, but I can go out and join in! My eldest plans on taking me ice skating in it but I didn’t like the wicked glint in his eye when he suggested it!!

Friends who don’t give up on me when I blow them out, who stick by me and let me feel like the woman I used to be.  I also am very blessed to have a whole virtual friends family – bloggers and the chronic illness community who give such support and friendship…and “get it”!  Meeting with online Book Club friends at our annual birthday party was a treat.

I feel blessed to have found some kindred spirits this year at our EDS UK support group.

My furry friends – we have been blessed with some extra time with our elderly mutt, Sam, due to an understanding vet and painkillers (yes, for the dog!); but also our surrogate dogs, Chester who I love like my own, and Prince – both come round every week for walks with hubby and cuddles with me!

Samson
Samson

30 years on – meeting up with old school friends and feeling the years just slip away.  Hopefully staying in touch….have already met up with one and his family.Class of 87 pic

Finally….staying with the old school theme, I feel very blessed as the Chair of our alumni committee to have been invited to some wonderful events (Henley, the school drama) including the beautiful Carol Service last night in the parish church.  Talking to some of the parents and staff after, over mulled wine and mince pies, we all said that whether we were religious or not, it was a lovely way to start Christmas proper – putting aside the commercialism for just a short time and enjoying some true Christmas spirit.  There just might be a bit more of this spirit at the pub next week when I go to the One Term On event, for the youngsters returning after their first term at university…..won’t be staying too long as this old bird might really cramp their style!!!

 

Why don’t you link up your blessings with Susie?

Join the Blessed Project and Get Featured!

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The Blessed Project