Category: chronic illness

Monday Magic -Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness5 Comments

How are your Christmas preparations going?  Are you the type of very organised person who has already bought and wrapped the gifts?  Or maybe you are more like our household…..

Vienna pin

 

The lovely girl has just returned from Vienna where she and class mates enjoyed a trip to the Christmas markets and the historic city.  When I asked her if she bought anything the answer was an incredulous”no”…. why on earth would you think to buy any gifts in a Christmas market?  But she did have a fantastic time, returned exhausted and is now full of cold!  Despite now earning money, Christmas shopping will pass the young engineer by completely until I get a panicked call on the 23rd or 24th December asking for ideas for everyone and “also, mum, do you have any wrapping paper?”.  Our politics student isn’t due home until next week and has several pieces of coursework to hand in by the end of term – I believe it is known as pulling all nighters or as lastminute.com!  He has always been the best at organising Christmas shopping but with his current lack of finances……..

Vienna
Vienna taken by the lovely girl

Then are the Christmas cards to write and post.  “Kids do you want some cards to send to friends/customers/family? Maybe you could help me write some” “Mum, why would I want to do that?” “No one sends cards to each other!!” – you get the picture, although they did work out that sending cards to customers on their newspaper rounds could result in Christmas tips.  So we in the PainPals household are not evenly slightly prepared, although hubby and I did purchase some new lights last week and counted the vast number of houses already well adorned on our trip up to London on Saturday night.

 

shallow focus photography of yellow star lanterns
Photo by 嘉淇 徐 on Pexels.com

This trip to Westminster was my big achievement of the week as hubby and I went to see the very talented Katie Melua in concert, supported by the Georgian Gory women’s choir.  Together they made sounds that were almost too pure to be human voices – absolutely stunning!  Yours truly made a new friend in the form of an elderly lady as we found our wheelchairs parked up close and definitely in each other’s personal space.  She couldn’t understand why the choir weren’t singing something more “jolly” for Christmas – I did try to explain that Katie Melua sings a particular type of popular music and the choir back her!  Her ticket had been booked by a well meaning son and she had no idea what she was coming to see, but we had a giggle!

I have been gathering some more Christmas related blog posts for you over the week and hope that you will find something here to enjoy!

http://www.thisautoimmunelife.com/2018/12/05/gingerbread-hot-cocoa-mix/

https://zebrapit.com/2018/12/03/support-spoonie-businesses-this-holiday/

https://rachaelstray.com/christmas-wreath-making-workshop-ad/

https://trippingthroughtreacle.com/tips-for-a-frugal-and-ethical-christmas/

https://brookeclarke.com/fashion/what-to-wear-for-your-christmas-party/

http://caseythecollegeceliac.blogspot.com/2018/12/33-gluten-free-christmas-cookie-recipes-for-holidays.html/

https://invisiblyme.com/2018/12/02/giftguide2018/

https://www.theworldseesnormal.com/the-world-sees-normal/2018/11/24/the-holiday-season/

https://wheelescapades.com/2018/11/25/festivities-and-kindness/

https://christmascountdown.co.uk/4-ultimate-christmas-pudding-recipes/

https://reclaiminghope.blog/2018/11/30/adjusting-expectations-when-things-dont-turn-out-as-you-planned-5-tips/

https://ruralgreystar.com/christmas-gift-ideas/

christmas cookies
Photo by rawpixel.com on Pexels.com

Please comment, like and share posts for these fab bloggers.

Have a great week,

Claire x

Accessibility Day at Gatwick Airport – Air Travel with Chronic and Invisible Illnesses

On By Claire Saul (PainPalsBlog)In Accessibility, Autism, chronic illness, chronic pain, Disability, Ehlers Danlos Syndrome, Review12 Comments

Accessibility pin

Aircraft
Photo courtesy of Dan McKenzie

Please note this has been written from my personal perspective

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness, Monday Blogs6 Comments

It is December and many households have begun the month with the opening of Advent calendars.  Gone are the calendars of my childhood where a picture of an angel or a sleigh nestled behind a cardboard door, to be replaced with calendars filled with chocolates, beauty gifts and some even alcoholic delicacies.  For the first time in years I am the only one in the house with a calendar and mine contains pamper gifts, perfect for a chronic spoonie who is in need of a bit of “me time”.  To the embarrassment of the adult kids, I am posting pictures of the lovely little bottles of niceness on Instagram each day!

Monday Magic Inspiring Blogs for You! (2)

This week hubby and I had a double cause for excitement on a night out into London.  It was a Christmas/thank you drinks evening hosted by the young IT engineer and his business partner in the 5cc bar situated in the grade II listed Singer sewing machine building in the City, London.  As “the parents” it felt rather surreal!  Our boy turned into a man in front of our eyes as he and his partner spoke with the investors, clients and share holders for their new tech enterprise.  Whilst the young engineer lacks in confidence in his ability to speak with people yet speaks “computer” as a native tongue, his partner compliments him beautifully with a personable, confident, easy manner and effortless, articulate way at speaking with and putting others at ease.  Hopefully their combined ideas, IT acumen and youthful ambition will be a winning combination for a successful venture – just don’t ask me to explain what they are actually doing!!  We were very proud parents – who actually didn’t put a foot in it, at least not too deeply, and were actually described as “cool”.

IMG_2052
Flaming Singer Zombie cocktails bought for hubby and me….by our son!

 

This was our very first venture out on the train with my wheelchair!  We have tended to drive into London since my mobility had decreased and pain increased, but the thought of driving into the City at rush hour and then seeking out a disabled parking bay was not appealing.   We travelled on the Thameslink line, which is a newer line and as such has modern trains with designated accessible carriages, and I appreciate that this makes travelling easier than it might be on older lines.  But I can’t fault the assistance that we were given by rail staff – someone was waiting on the platform with ramps to see me onto the train and he phoned ahead so that another staff member was waiting on the platform for us at our destination.  Our journey was comfortable and relaxed, taking a fraction of the time that driving through rush hour London would have…..we will take the train again!

 

Sticking with our December theme, the blogs that I shall share leading up to Christmas will be as wide a variety of winter festival posts that I can find.  They won’t all be about the joys of the season, as for some it is a difficult time, but I hope to bring you some great reading!  Enjoy.

https://pinkfortitude.com/best-gifts/

https://www.chronicmom.com/2018/11/15-thoughtful-christmas-gifts-for-friends-and-family-with-chronic-illness.html/

https://trend-able.com/holiday-survival/

http://www.sewhistorically.com/old-fashioned-christmas-wreath-from-scratch/  

https://piggybankprinciples.com/cheap-easy-diy-christmas-decorations/  

https://joyfullyunexpected.com/toddler-gift-guide-15-toys-under-15/

http://preppyemptynester.blogspot.com/2018/11/a-sentimental-gift-idea.html

https://www.smallworldspreschool.com/christmas-sensory-activities-for-preschoolers/

https://grammysgrid.com/is-it-ok-for-kids-to-believe-in-santa/

https://www.ajourneythroughthefog.co.uk/2018/11/for-many-people-the-festive-season-is-not-a-time-of-celebration/

http://www.sewhistorically.com/victorian-christmas-gifts-for-the-home/

https://www.sizzlingtowardssixty.com.au/25-day-countdown-to-happy-christmas/

https://itoldyouiwassick.info/2018/11/23/perfect-gift-chronic-illness-spoonies/

https://awandafulthing.com/2016/11/28/day-1-hershey-kiss-christmas-cookies/

Please share, like and comment on your favourite posts.

Have a great week,

Claire x

 

 

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness, Monday Blogs5 Comments

Monday Magic Inspiring Blogs for You!

This post should just about make it to you for Monday – depending upon which time zone you live in!  My brain fog has continued, several painsomnia nights later and an eye/sinus infection have left the blog low on the to do list.  Actually using the computer screen has been a chore with head and eye pain…..then add in my almighty cock up with my drugs and a few hours of pregabalin withdrawal – you get the picture!!

turned on laptop on bed
Photo by Daria Shevtsova on Pexels.com

This week my nephew turned 8 and celebrated with a Laser Quest party for 15 little live wires.  This crumbly Auntie didn’t manage the trip (for the second year running)….but I did manage to make his birthday cake and sent it with hubby, the best Uncle in the world on that day.  For a simple, yet really effective cake that appeals to any kid, young or old, who likes sweets….make a “box of chocolates/jellies/sweets”!  If you would like a post with instructions leave me a message in the comments. One of the worst parts of chronic illness is having to cancel plans for special occasions when symptoms take over.  However watching Strictly Come Dancing with my Mum was probably slightly more relaxing than the aftermath of the party and the subsequent present frenzy!!  I have to just say here – I loved Stacey Dooley’s tango…you won’t know what I’m talking about unless you are a UK Strictly fan!

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I am currently writing another post for you following a special Accessibility day at Gatwick airport last week and probably the biggest excitement to come out of this has been our purchase of an electric wheelchair.  More of this to come.  Meanwhile I have caught up with some blogs today as my vision has improved (have you used that chloramphenicol ointment – eughhh, gunky eyes and stings like hell!) and I hope that you enjoy these posts as much as I have.  I plan a Christmas blogs post, but have included the advent calendar one here as you might want one sooner rather than later!  I have been a very lucky girl and was bought a beauty calendar by my gorgeous friend Holly – lovely surprise gift….I will fill you in on the gifts as I open them!

Sit back, grab a drink and enjoy!

https://www.brainlesionandme.com/the-benefits-of-a-spa-day-for-those-with-chronic-illness/

https://wheelescapades.com/2018/11/17/booking-accessible-tickets-mission-almost-impossible/

https://countingmyspoons.com/2018/11/tips-for-pacing-when-you-have-chronic-illness/

https://ellenbest24.wordpress.com/2018/11/21/there-is-power-in-a-name/

https://www.lifeat139a.com/139a/11/20/my-garden-in-november

https://www.crestingthehill.com.au/2018/11/can-being-sad-be-good-for-you.html

http://www.denysewhelan.com.au/denyse-blogs/my-bookmarks-the-big-hug-box-2018-121/

https://www.eclecticevelyn.com/health-mistakes-to-avoid-for-women-over-50/

https://kippiathome.com/2018/11/14/hot-cocoa-bar/

Cupr of cocoa
From Kippi At Home website

 

http://arosieworld.com/beauty-advent-calendars-christmas-2018

Please comment, like and share!

Have a great week,

Claire x

 

 

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness, Inspiring, Monday Blogs18 Comments

Welcome back, friends – I have been on an unintentional blog break for two weeks.  Unintentional as life, fatigue and brainfog took over – I just was unable to put pen to paper or fingers to keyboard.  Then there are the constant demands of a family – hubby, dogs and “big” kids.

Pin for later

Monday Magic Inspiring Blogs for You! 12.11.18

The biggest kid, the young tech engineer, continues to spend half his week working from home, the other half in London as he and a tech pal continue to grow their new IT start up.  He just spent the weekend in the Peak District walking with 9 nine others through the mud and rain – a good time was had by all.  The smallest kid, the lovely girl, is currently working her way through German TV dramas on Netflix for her A level German “wider experience” – this weekend it has been Deutschland 83.  I saw it on TV but have been happy to watch again as the soundtrack takes me back to my teens in the 80s – the plot is great too!

Hubby managed a visit to the politics student last week.  It was supposed to be an overnight stay to break a long journey there and back to the north of England – and could well have included a pub crawl of Nottingham.  Hubby took the middle kid out for dinner and in true student style he ate everything put in front of him, but when they arrived back at the “digs” the number of young people staying in the house had grown to the point where hubby didn’t fancy his chances of 1. sleeping and 2. getting anywhere near the bathroom.  He was very relieved to be climbing into bed next to his wife at 1 am rather than in with his 19 year old son!

disray-clipart-messy-child-6

 

What about the dogs?  Well our old dog has been on his holidays to grandparents the last two weekends, whilst we have been vizsla sitting….firstly for Chester and then for Jensen.  Sam is now back and in his favourite spot in the window asleep on his bed – at 16, he is probably well over 100 in human years so can be forgiven for turning up his nose when the back door is opened to a rain swept garden!

I haven’t been very active with blog reading or commenting, but I have found some lovely posts that I hope you will enjoy them!  Commemorations have taken place globally this weekend for both Remembrance Day and the 100 years since the end of the first World War,  so it seems fitting to share some posts to mark this.  So sit back, grab a cuppa and have a good read….

Remembrance.jpg

 

https://willowdot21.wordpress.com/2018/11/06/the-red-the-white-and-the-purple/

https://thepurplealmond.com/2018/11/12/a-tribute-to-our-veterans-1918-2018/

https://walkamyelinmyshoes.com/2018/11/11/i-remember/

https://gardner1015.wordpress.com/2018/11/12/daily-ramblings-motivation-monday-20/

https://inkanyiso.org/2018/11/06/2018-nov-6-loss/

https://jenanita01.com/2018/11/06/38821/

https://whatapain.co.uk/dear-diary-my-domestic-abuse-story/

https://chronicallyglutenfree.com/2018/11/gluten-free-thanksgiving-stuffing-dairy-soy-free/

https://zebrapit.com/2018/11/12/roasted-turkey-with-herb-butter-and-gravy/

https://writeintolife.com/2018/11/12/1000-days-1000-humans/

Have a great week,

Claire x

 

 

 

 

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness, Monday Blogs6 Comments

It is the final couple of days of October, here in the UK the clocks have gone back and the early mornings are darker, Halloween means Trick or Treaters will be on our doorsteps within days….and November beckons.  Despite the drop in temperature, I can’t believe that winter is nearly upon us and that there are Christmas jumpers in the shops!

Monday Magic 29th Oct 2018

My family know that I am a huge Strictly Come Dancing fan and I love the Halloween show, so Saturday night was one of the highlights of the year for me.  The dance of the night had to be the new couple’s choice Musical theatre & Jazz number from Faye and Giovanni, but as with every series there are a couple of contestants with no dance experience who are positively shining.  I mean of course star of social media, Joe Sugg, and the wonderful gritty news reporter, Stacey Dooley, who are both taking to dance like naturals.  Joe has a wonderful frame with a real Marfanoid look to his neck and limbs, whilst we are more accustomed to seeing Stacey squaring up to drugs gangs or on the frontline rather than dressed as a time lord (Dr Who) and strutting a tango under the glitter ball.  I am kicking myself that once again I left it too late to book accessible tickets for the live tour shows in London – I really can’t manage not to be in my wheelchair these days – please someone remind me to make that call next year!

Joe Sugg (google images)
Stacey Dooley (google images)

We were joined by a gaggle of 16 year old girls for part of the Halloween show on Saturday before they took over the kitchen with vegan food and an oven load of chips.  It is unbelievable just how much noise these girls can make and then add in the incessant barking of our geriatric dog as he joins in the fun ……well, I think you can begin to imagine how far away they could be heard.  Meanwhile the young engineers (son and boyfriend) were on a party crawl with invites to 4 Halloween affairs in London.  It is now Monday afternoon and he has just walked through the door…..

I think that I have found some fantastic posts for you this week – some from old friends and some are new to me.  There are some suggestions for activities with kids, ghostly writing and a beautiful poem.  I have also focused on posts that look at making a difference – for yourself and others, so sit back with a cuppa, put your feet up and enjoy!

https://lisaorchard.wordpress.com/2018/10/27/stay-true-to-yourself/

https://mydailyjournalonline.com/expectations-and-acceptance-two-sides-of-the-same-coin/

http://wellingtonworldtravels.com/fun-fall-activities-for-families/

https://mjmallon.com/2018/10/28/author-feature-mary-r-woldering-ghostly-writes-anthology-2018/

https://fancypaperblog.com/2017/11/04/midterm-break-in-ireland-with-kids-to-cork/

https://tinybuddha.com/blog/why-my-chronic-illness-cant-stop-me-from-making-a-difference-in-the-world/

https://brainlessblogger.net/2018/10/24/things-i-learned-from-depression/

https://nothingbutpoetry.wordpress.com/2018/10/23/forever-dancing/

dancers

https://janetmarycobb.com/2018/10/24/what-difference-did-i-make/

https://www.mollytotoro.com/2018/10/youre-never-too-old-to-learn-something-new/

Please share some love by commenting and sharing to social media.

Have a great week and….keep dancing (so sorry, couldn’t resist),strictly-come-dancing.jpg

Claire x

 

 

 

 

Stream of Consciousness Saturday – Bone!

On By Claire Saul (PainPalsBlog)In chronic illness, Stream of consciousness3 Comments

Have you ever wondered why tea tastes so much better out of bone china?  As a youngster I could never understand why my grandma and great aunt always insisted on a teacup and saucer for their cuppa, but as I get older I start to appreciate these things.  I’m not saying that I use a teacup – there is no way that I am ladylike enough to manage one, crook my little finger and balance a saucer for that.  The EDS shaky hands make it hard enough to cope with a mug, believe me!  But I do enjoy drinking from a bone china mug these days.

Stream of Consciousness Bone

What happened to those teacups and saucers though? How many of us have inherited dinner services and tea sets from loved ones that never see the light of day?  Afternoon tea is becoming trendy here in the UK and there are various tea and coffee shops that serve delights upon and in a mismatch of tea plates, cups and saucers.

However my grandmother’s bone china tea cups came in very useful earlier this year, and not for drinking from!  The lovely girl made a sculpture for her final piece of art work in the summer and you guessed it, one side is adorned with smashed china to fit with the subject title “Fragments”.  I hope that my relatives are looking down with approval!

IMG_1707 2
“Fragments”

This is for Linda Hill Stream of Consciousness Saturday!   Linda gives us a writing prompt and participants just write!  Hence stream of consciousness.  Have a look at her site for more prompts and ideas.

stream-of-consciousness-saturday-2018-19

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blog share, Blogging, Blogs, chronic illness, Monday Blogs7 Comments

Welcome back to a new week and another Monday Magic!  It is a beautiful day here in the South East of the UK and a fantastic start for half term.  Of course here in the PainPals house there is only one child on half term and being a teen, we will be lucky to be graced by her presence before lunchtime no matter the weather.  The paper round will be done, but then it is back to bed!

Monday Magic Inspiring Blogs for You! 22.10.18

 

For me the week revolved around a dinner at my old school celebrating 40 years of c-education and as one of the original 10 year old girls back in the day, it has been a pleasure to contact others from my generation.

The very first girls!
The first little girls!

I had fun creating collages from photographs sent to me by old friends and enjoyed a wonderful trip down memory lane with old staff and old friends.   Our old headmaster added to this with his speech – several of the boys, now middle aged men, were just as badly behaved during this as they were 39 years ago! – and recalled the incident in the school hall where we all  sat for an end of year assembly when suddenly the hall doors flew open and in stalked a rather glamorous young lady.  Making her way up the middle aisle between the students, she slowly started to disrobe to the sniggers of the whole school whilst the head was slowly gathering his wits and said he wondered if she was a strippergram or a kissogram.  Meanwhile the school deputy, an altogether smaller, older and very conservative man, literally flew from the stage flapping his black gown around him.  I can’t remember seeing him without his gown and he always reminded me of a raven about to take flight as he dashed along the outdoor pathways, ruffling out his gown behind him.  On this occasion the gown was wrapped around the young lady and he bundled her out the back of the hall into a waiting classroom.  The head was a bit disgruntled – well he never discovered if she was a kissogram or strippergram! – as many pupils knew that the 6th form boys had arranged this stunt, including his own young son who kept the secret completely.  Little tyke!!  We never found out what the deputy did with said young woman after he bundled her out at speed.  It never fails to amaze me how the years just fall away when old friends catch up, and we girls had a really tight bond as there were so few of us – only 8 initially and 4 of us attended the dinner.

KGS girls.jpg

Lovely to see old friends and feel like a teen for a few minutes!  The chronic body stood up to a whole night out very well – not sure if that was down to adrenaline or wine – but needless to say the high is generally followed by a fall, or crash, and this has given me time to find some blogs which I have enjoyed.

So sit back with a cuppa and have a look at these great sites – I hope that you enjoy the variety as much as I did!

 

https://trend-able.com/chronic-bloggers/

https://chronicallystrong.com/lessons-from-cancer-caregiver-caregiving/

https://pamelajessen.com/2018/10/12/interview-october-roger/

https://www.jenhardy.net/is-laughter-the-best-medicine/

https://worldisateaparty.wordpress.com/2017/09/25/long-autumn-shadows-at-tea-time/

https://youtu.be/ZIAUD6eaN3Q

https://theimmortaljukebox.com/2018/10/17/pete-townshend-willie-mitchell-robert-parker-barefootin/

https://www.style-yourself-confident.com/seasonal-color-analysis-autumn.html

https://darlenefoster.wordpress.com/2018/10/18/20-fun-facts-about-my-blog-and-me/

https://sugarmuffin.home.blog/2018/10/16/bones-for-the-boneless-tv-shows-you-must-watch-this-halloween/

Please share, comment and spread some love for these bloggers!

Have a great week,

Claire x

5 of My Favorite TED Talks

On By Claire Saul (PainPalsBlog)In chronic illness2 Comments

Emmie on Illness to Wellness Blog shares 5 TED talks here that have inspired her to have msre self confidence and build self care skills – enjoy!

Illness to Wellness: A Journey's avatarIllness to Wellness: A Journey

Originally posted on Sweatpants & Coffee.

I’m a student at seminary. I spend the vast majority of my time thinking about the deeper parts of life, what might come after life, and how we bring the two together by serving and loving one another right here and now. It’s an absolute ball and the greatest privilege of my life. It’s not just books, class discussions, and work experiences that spur my imagination; there also are TED talks for me to listen to when I want to keep thinking in a new vein. I put together a list of five that have moved me the most.

Brene Brown: The Power of Vulnerability

Being in a group therapy book club about I Thought It Was Just Me (But It Isn’t), one of Brené Brown’s books about shame and how to move through it, changed my life and helped to convince…

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