Monday Magic – Inspiring Blogs for You

Happy Monday PPals!  I am currently sitting here cursing as WordPress decided to wipe my writing of this post and I can’t recover it.  It was finished too!! Aghhhh

Anyway I will attempt to replicate it….the Uk’s Strictly Come Dancing is whirling through the weeks in a series of foxtrots, tangos, quicksteps and more.  This weekend saw the couples entering a whole different level as they performed at the spiritual home of ballroom.  Professionals and celebrities alike are all in awe of the iconic Palace Ballroom, Blackpool which takes centre stage and steals the thunder of the dancers, as it is so breathtaking.

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Image from Google images

This weekend saw the end of the road for an inspirational young man who is a gold winning GB Paralympian and 100m sprinter.  I am of course talking about Jonnie Peacock, the 24 year old athlete who aged 5 years underwent surgery for a below knee amputation, having contracted meningitis.  He is the first contestant with a disability to take part in the main series and there have been questions along the way – Is it fair for Jonnie to perform the same dances as his able bodies counterparts? How can the judges possibly give Jonnie the same level of critique?  Why are the judges picking on Jonnie’s posture, bottom position and stature when he has one leg?

But these questions have never come from Jonnie himself and in his farewll speech last night he said that he was honoured to be the first disabled contestant, and he thanked the judges for judging him as an equal saying

“That’s what I want. You’ve been critical with me and I want that criticism. I think that’s fantastic and hope it paves the way for more people to come through and I think they may be able to stick their bum under a bit better than me.”

His tearful professional partner Oti Mabuse said

“This has been one of the most life changing things that could ever happen to me. Jonnie is not only an inspiration but he represents so much more. ‘If anybody wants to do anything, if you put your mind to it then you can achieve it and that’s what he represents.”

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I am not suggesting that we will all, abled or disabled, reach the heights of this remarkable young man, and for those of us living with chronic illness invariably daily pain and fatigue won’t even allow us to reach the putting our minds to it bit, let alone anything else!!  But this is surely a good mantra to aspire to and Jonnie Peacock has left Strictly a dancer.  Watching him jive on his running blade was a highlight for me…..and not forgetting him as Jack Sparrow on Halloween.

So from one inspiring young man to a handful of inspiring blog posts.  With another weekend of dodgy dislocations, I have read lots of blogs, interspersed with cheesy family movies and heat pads!  I have picked a selection of posts for you from a variety of bloggers – and as yesterday was World Prematurity Day, the first comes with a mascara alert as it is a post from Nicole that is written from the heart.  I have also managed to slip in a Christmas post – never too early – and will aim to do so each week in the build up to the festivities.

So grab a cuppa, sit back and enjoy some fab posts!

https://www.nicolefrancesca.co.uk/homepage/2017/11/19/november-never-forgotton

https://themswire.com/2017/11/19/four-airport-tips-for-disabled-flyers/

https://chronicallystrong.com/lupus-aibd/

https://yadadarcyyada.com/2017/11/17/people-forget-kindness-is-free-2/

http://www.themonochromeblog.com/single-post/2016/09/11/How-to-move-to-a-foreign-country-go-travelling-when-your-a-spoonie-TBC

https://thewildreaderwithacat.wordpress.com/2017/11/18/paint/

http://www.thirstydaddy.com/2017/11/10/the-good-guys-dont-always-win/

https://thedreamgurusite.wordpress.com/2017/11/17/how-i-found-out-about-eds/

https://mydailyjournalonline.com/life-rulebook-guest-post-riya/

https://medicalmysterymusings.wordpress.com/2017/11/19/christmas-expectations/

 

Please like, share and follow these blogs if you enjoy them!

Have a great week,

Claire x

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Monday Magic Nov 20

 

 

 

 

 

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Be kind to Each Other – You are all Beautiful.

Our house is feeling slightly more stressed than normal, and that is down to upcoming mock exams.  The loBe kindvely girl is in year 11 at school and will be taking her GCSE esams next summer – and this is the first year of the new exams  to be graded 1 – 9 with a new syllabus.  I’m not sure how widespread the stress is on a national level, but in her school the homework is being piled upon the girls as the teachers seem a little unsure of what to expect, and a meeting was held with the girls as so many of them are showing signs of extreme stress.  I know that some of the parents are also adding to the problems with pressure to revise and one is not allowing her daughter out of the house other than to go to school.

Apparently these anxiety levels are some of the highest that they have seen as a school. Our girl is usually very level headed, feted by her friends as being the most sensible one and  yet she had a melt down last weekend over her work resulting in tears.  So out of character and not what a parent wants to see.

Earlier this week she came home and told us something that I really want to share.  One of her close friends, a lovely young lady who has suffered her own share of anxiety issues since year 7 (for reasons that I will not be stating), recognised that everyone was becoming more and more wound up and she wanted to do something.  She went home and wrote by hand a letter to each of the girls in their close friendship group.  The letters were all individual – she could have written the same to each girl – and she focused on telling each one of her friends what she valued about them and their friendship.  She wanted them to remember that they are so much more than schoolwork, exams, sixth form applications and stress.  What a wonderful thing to do!

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The girls!

The lovely girl really appreciated this and was full of praise for her lovely friend.  To be able to recognise at this age, that a beautiful human is made from a rounded, balanced life and that positive, loving comments are so important,  must be a gift – for many of us it takes a lifetime to appreciate this.  This 15 year old reinforced that it is so important to be kind to each other.

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Monday Magic – Inspiring Blogs for You!

This weekend has been one of Remembrance in so many places across the globe.  With Saturday being the 11th November, it was totally fitting that the Lord Mayor’s parade in the City of London started with the playing of the last post and a 2 minute silence.  In true UK style, the weather was miserable – I can’t remember the last time it was fair for the Lord Mayor’s show!!  Sunday however was a beautiful, crisp day as the veterans and current serving forces gathered alongside politicians, members of the public and the royal family for the service at the Cenotaph.  The oldest veteran attending, a 99 year old former Royal Marine Ernie Searling, sent a heartfelt message to the world – “I feel very humble seeing so many hundreds of men and women on the parade today. So very, very humble, particularly those who are not with us on this day today… All I hope is that the future generations could see this parade, see some solidarity in it. See that the betterment of mankind in England, especially Great Britain, should be at its highest level. We don’t want street fights. We don’t want arguments. We don’t want racial injustice. All those things are horrible!” He brought a tear to eyes in our lounge.

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Former Royal Marine Ernie Searling

Over the last week the BBC have been broadcasting a series of programmes celebrating and highlighting the roles women have played in war over the last one hundred years – Women at War 100 Years of Service.  – currently available on the iplayer.  It is difficult not to be inspired by the young women of the World Wars who were trailblazers for so many careers that women had previously not been able to undertake – and I would imagine that this is the case in other parts of the world when the men were on the front line.  Some of these women, now elderly ladies, recounted tales of their training and deployment – as radio operators, munitions workers, pilots and engineers. These women paved the way for both women in the forces and in the workplace generally.

My first inspiring blog for you today follows this theme and gives thanks on Remembrance Day – but the others have a mixture of themes from midlife crisis (me!!) to migraines to books & disability to Christmas baking & gifts!  Not on quite the same par as WW2, but I think that you will enjoy these inspiring posts and urge you to grab a drink, take a seat and enjoy.

https://butterflyinremission.wordpress.com/2017/11/10/with-heartfelt-thanks-on-remembrance-day/

https://www.shailajav.in/shifting-perspective-create-more-than-consume/

http://www.crestingthehill.com.au/2017/11/that-midlife-crisis.html

http://www.youcanalwaysstartnow.com/2015/06/01/success-who-gets-to-define-it/

https://brainlessblogger.net/2017/11/12/symptoms-of-a-migraine-that-can-be-as-severe-as-the-pain/

https://ginlemonade.wordpress.com/2017/11/03/3-books-3-blogs-from-gemma-at-wheelescapades/

http://drallisonbrown.com/power-perspective-shoe-fits-wear/

https://cookandenjoyrecipes.wordpress.com/2017/11/11/ess-gf-christmas-candy-cane-butter-biscuits/

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Image fro The Recipe Hunter

https://chronicrants.com/2017/11/01/defining-affordable/

https://theblogbroadblog.wordpress.com/2017/11/11/great-gifts-ideas-from-uncommon-goods/

As ever please share this post and these posts if you enjoy them!

love Claire x

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Monday Magic - Remembrance

 

 

 

With heartfelt thanks on Remembrance day

I have just observed the laying of the wreaths at the Cenotaph in Whitehall and it seems wholly appropriate to share with you this moving post from Butterfly in Remission blog.

Butterfly in Remission - Lifestyle & Cancer Blog

Remembering the fallen on the 11th hour of the 11th day of the 11th month…Armistice Day.

Growing up Remembrance Day was always very much part of our yearly calendar, at my school and at home we were taught of its importance, what it meant to us and the world around us.

I decided to put my thoughts down ‘on paper’ and this is where they took me!

Over the years I have watched many films based on true war events, read numerous newspaper articles, books, watched news stories, documentaries and TV shows.  As a result I’ve become very aware of the reality of war and have always felt a deep sadness for those involved.  Under no illusions about the loss and devastation it leaves in its wake I am proud that we remember them all, from all conflicts once a year.

I think about those on the front, feeling like…

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The need for a challenge to help myself and others #BBCRickshawChallenge

Oh my goodness, what have I done?  I think that I experienced a brain storm this week – well an even greater one than usual!

Two years ago I had only recently started this blog and was recovering from spinal cord stimulator surgery when I wrote about some inspiring young people in the UK undertaking The Rickshaw Challenge.  This is a project that has run for several years now and is championed by the BBC One Show – and particularly by presenter Matt Baker – in order to raise money for the UK charity Children in Need, founded by the late Sir Terry Wogan.  A group of young people who will each have a story, from illness to bereavement to overcoming adversity, and have all in some way benefited from the charity, cycle a route across the UK on the rickshaw as a team and fund raise along the route.

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Image from BBC website

The strength of mind and spirit to succeed always shines from these youngsters every year.  I was caught off guard last week by a young lady called Sabah who is a member of this year’s 6 strong team.  She has had multiple health problems, including cancer, a kidney transplant and now is on dialysis – but she told the audience in a most matter of fact way that she would simply do her stint pedaling the rickshaw and then stop for dialysis.  I was a wreck by this point.  But the determination of these young people, and Matt Baker who cycles the whole route with them giving encouragement and support, has really got me thinking.

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Image courtesy of Google search

My own health has deteriorated over the last 2 years, and there is always an issue with chronic illness and the deconditioning of the body.  For us bendy people with Ehlers Danlos Syndrome it is really important to keep moving and as physically strong as possible – most of us will have exercises from physiotherapists and doctors.  But chronic health can become a vicious cycle (no pun intended) as the body becomes deconditioned due to pain, fatigue etc and then the deconditioning reduces the ability to “move” or exercise, in turn leading to further deconditioning.  Add a spot of dysautonomia into the mix – check out what it is here – in my case dizziness, low blood pressure, raised pulse, fainting (POTS) and you have a recipe for an increasing number of sofa days and Netflix!

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Image courtesy of Google search

So what is a middle aged (eek) girl to do in order to keep the mind and body working? Well, blogging and writing and generally being part of this fantastic online community does wonders for the mind alongside being a school governor and now chairing an alumni committee.  The body isn’t so easy, especially on high pain and flare days.  The spinal cord stimulator still helps to mask the leg and back pain from nerve root damage, but then for the EDS pain throw in some pregabalin, naproxen, cocodamol and the odd shot of oxynorm and the result may be manageable.  The changes in weather don’t help and I am still certain that my titanium spine reacts to changes in air pressure!

But as the young Team Rickshaw show us, there is always someone worse off and always someone to inspire and motivate us.  Sometimes it is important to set oneself a challenge in order to move from one day to the next when life is throwing rubbish about.  I am still learning that those challenges need to be smaller these days than a decade ago – pacing….no, I don’t really do that very well.

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Image courtesy of Google search

So back to my first question…what have I done?  Well I have set myself a challenge and signed up for the Virtual Rickshaw challenge…..I will be riding on an exercise bike from the comfort of my living room between now and New Year.  I’m not going to pretend that I will be burning up the miles and covering anywhere near the real rickshaw ride, or that I will even manage to pedal every day.  But if those youngsters can overcome adversity and put themselves out there, then this old bird can surely help herself ….and if I can raise a little money for Children in Need, then all the better!!

If you would like to visit my challenge page please find it here…..no expectation to donate, but it would be lovely to receive some encouragement and support over the next couple of months…maybe you could even share for me.  I will give you updates of my progress…..so with today as day one I managed 3 miles with only a neck vertebra and shoulder dislocated.  Not bad going for me!!  (Don’t worry folks, I am ok – good excuse to avoid the washing up!)  Onward and upwards…

Chronic Pain and the Opioid Epidemic – with thoughts from Chronic Mom, Shelley

Here in the UK we don’t have the issues around a GP agreeing to treat chronic pain or of insurance covering prescription charges in the same way that patients in the USA do.  I am not saying that our GPs always get it right when treating those of us with chronic ailments, and I believe that chronic pain can be treated back to front – that is drugs are thrown at it as a first line and then referrals for specialist pain clinics come too late.  I was one of eleven on an in patient pain course for assessment for spinal cord stimulator implantation two years ago.  We had all lived with chronic pain for years and this was the end of the road…..whilst we appreciated the teaching of coping mechanisms, self help and psychological support, most of us felt that this had come years too late in our treatment “journey”! We were all taking opioids and in order to qualify for a stimulator trial we had to come off or reduce this.  A daunting task!

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Any one living with chronic pain will have a stash of opioid drugs in the cupboard! A few of mine!!

 

This isn’t necessarily a criticism of our doctors – I know that they have such a limited time to see and get to the bottom of each patient’s problems.  Who saw the BBC documentary series following Dr Rangan ChatterjeeDoctor in the House“?  He had the luxury to be able to spend time with his patients – over a period of weeks he spent time in the home, became familiar with families and habits, diets, sleeping patterns, which all allowed him to dissect issues such as fibromyalgia, cluster headaches, chronic fatigue syndrome and more.  But this is not the real world and in waiting rooms across both sides of the pond, the queue of people needing help for chronic pain grows.

I mentioned prescription costs and in the UK we are fortunate, yes I did say fortunate, to have a fixed price per item and for those of us needing more than one drug per month, the prepayment programme saves money on these charges.  But we are experiencing constant cuts and patients are seeing their regular medication being withdrawn – I recently read a letter from a young father who has had his medication for rheumatoid arthritis stopped due to funding cut backs. However in other parts of the world patients must cover the full cost of drugs if insurance will not pay out – I take Lyrica/pregabalin and prior to the initial licence expiring, each month’s supply cost hundreds of pounds. The first time that I was prescribed it was at the private hospital attached to the hospice where I worked – aged 39 I had to ask my dad to pay as I didn’t have enough money with me to cover the private prescription.  Dad has never let me forget that he put up the funds to start my drug habit!!!  Such a joker….

Without further ado I would like to share with you Shelley’s post in which she discusses the use of opioids – both on prescription and illegally.  It is an informative read, particularly for those in the States.

People with Chronic Pain did Not Cause the Opioid Epidemic

A great deal of people are uncomfortable with how often I address the “opioid epidemic” and how it hurts people with chronic pain. I think this is because healthy people like to imagine that doctors can fix everything and if something isn’t fixed that it must be the person’s fault. Therefore if someone is in pain they aren’t really being denied treatment for it, they just aren’t trying hard enough. Unfortunately the reality for people with chronic pain is very different. It doesn’t matter if you’re the perfect patient, doctors will no longer prescribe pain medicine.

Even if you’re lucky enough to find a doctor who will treat your pain, good luck getting your insurance to cover your prescription or your pharmacy to fill it. These days a pharmacy can refuse to fill your prescription and then call your doctor and tell them they were wrong to give you this medicine. Opioid hysteria has gotten so severe that now we’re bypassing the judgement of doctors and listening to pharmacists instead. My opinion of doctors has never been high, but they go through years of medical school for a reason. While pharmacists are educated they are not doctors and are not familiar with individual patients. So why are we granting pharmacist’s more power than doctors? Oh yeah, everyone on pain medication is an addict.

Here’s the problem though, the opioid epidemic does not come from prescribed pain medicine or chronic pain patients. In fact 75% of all opioid misuse starts with people using medication that wasn’t prescribed for them. Also 90% of addiction starts in the teenage years when teens are also misusing alcohol and hard drugs in addition to pain killers.  Have we banned alcohol yet? Because 88,000 people die of alcohol related deaths per year and no one seems to care. Instead we ban pain killers even though less than one percent of those who were well-screened for drug problems developed new addictions during pain care. In other words, people with chronic pain are not the problem and were likely never the problem…….”

For the full post please visit Shelley at The Chronic Mom

One Liner Wednesday – My Bendy Body

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So……Life with Ehlers Danlos today meant opening the microwave and putting my neck out!!!

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#1linerWeds

From Linda’s One Liner Wednesday – visit her blog to see other participants’ one liners! https://lindaghill.com/2017/11/08/one-liner-wednesday-this-is-your-brain/

 

Monday Magic – Inspiring Blogs for You!

8Welcome to another Monday Magic and some great blog posts to entertain and inspire.  The last week has seen both Halloween and Bonfire night – I think that we gave out goodies to about 50 little witches and monsters (I know, this is small fry compared to some of my pals in the USA), and the fireworks seem to have been almost nightly.

 

I have to give a shout out to all our pets for having to put up with this human fascination with loud explosions, deafening whistles and a sky full of bright lights.  Our old boy Samson spends much of the evening barking or trying to hide – at approx 15 he is getting on in dog years and periods of doggy dementia do kick in, particularly with fireworks.  The beautiful Chester, our surrogate dog who we look after for friends and love as our own, was also very chilled on Saturday night unlike his best buddy Freddy (a neighbours’ pooch) who also spent the night barking.  The things we put them through!

Our house has been transformed into an artist’s studio again this week, as the lovely girl has been putting together her sketch books for an interview at school tomorrow.  Having 2 weeks half term holiday has given her even more time to spread her wares from room to room to room……I know I’m biased but she has come up with some great concepts for the project title “I. Me, Mine”.  Meanwhile hubby, otherwise known as Mr Intimate Audio, has also been creating as he looks at new and exciting finishes for the hifi horn speakers that he designs and builds.  I think that we need a studio…..IMG_3541

I, meanwhile, have found you a mixture of posts this week starting with “November Prompts” from my friend Sheryl at A Chronic Voice – this is a lovely link up, that I will try to put my own prompts to this month.  I have found an interesting post about modern racism, some wonderful poetry on Thoughts from Jasmine, a post about social anxiety in children (very applicable for my lot even if they are tweens!) along with a mix of chronic illness posts.  Need I say more – grab a cuppa, turn off your phone and enjoy some great reads!

https://www.achronicvoice.com/2017/11/02/november-prompts/

https://www.anempoweredspirit.com/seasons/

https://jadealicexxo.wixsite.com/jadealicexxo

https://www.judyedwinamartin.com/sugar-and-spice-being-woman-is-nice/

https://thoughtsfromjasmine.wordpress.com/2017/11/02/growing-up-with-modern-racism/

https://talesofaneglectedwomanchild.wordpress.com/2017/11/03/deep-water/

http://coffeeandcarpool.com/how-help-your-child-when-they-worry-about-social-situations/

https://noonegetsflowersforchronicpain.com/2016/01/30/i-fell-apart-it-was-beautiful/

https://dazzlingzebra.wordpress.com/2017/08/21/dazzling-zebra/

http://www.ayni-books.com/books/acts-kindness-from-your-armchair

Please, please make someone’s day and like, follow, comment on their post if you enjoy it.

Claire x

 

Monday Magic 6 Nov

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The one important component to survive a life with an invisible illness…

Sometimes life can feel like a marathon, but this analogy to a life with chronic illness doesn’t quite work as the pain and fatigue probably won’t disappear over time. But what does keep you going when things get rough? Great post sharing just this…..

My Brain Lesion and Me

Imagine you are a marathon runner, struggling during the half-way mark.  You are fatigued, suffering from muscle cramps and out of breath.  However, you are determined to complete the marathon and cross the finish line.

So, what spurs you onto the finish the marathon despite the pain and fatigue?  I can imagine that one thought would help is the knowledge that the end is in sight and awareness that the pain and fatigue will eventually end.

running-runner-long-distance-fitness-40751 Unlike marathon runners, for those living with chronic illness, there is no end in sight of the pain and fatigue that we endure

Life with an invisible chronic condition, however, is in no way alike to the marathon analogy above.  There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness.  There is no finish line when living with an invisible chronic illness.  The question, therefore is if…

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Monday Magic – Inspiring posts for Halloween!

Good evening – yes, I know, evening, Pain Pals!  I am just about managing to make this a Monday Magic post, having spent yesterday and today asleep after The Book Club party on Saturday – I could tell you that it was over indulgence, but sadly these days it is just down to fatigue.  Those of you in the know appreciate how hard it can be to do anything – and believe me when this mum doesn’t even care what is going around her in the house (yesterday) things must be dire!! But a good time was had by all and we came away with some fantastic goody bags full of TBC author books – all arranged by the lovely Tracy Fenton (TBConFB and Compulsive Readers blog).22886045_10156006115356495_3468543215709480442_n

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The lovely Tracy Fenton – we got the cake there in one piece, just!

 

Anyway feeling a bit more human now, and noting the date…..I thought I would have a flick through some of the fab groups I belong to and find my favourite Halloween inspired posts.  There are some spooky books, scary films, ghostly doughnuts and a haunted Indian fort.  My personal favourite as a baker is the Brain cake! So it is time to sit down, grab your favourite tipple and enjoy some All Hallow’s Eve fun!  As for me…on the topic of all things eerie, I’m off to start season 2 of Stranger Things!

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http://www.imagineeredvacations.com/the-ultimate-disney-halloween-2017/

http://www.annanuttall.com/6-ghost-books-for-adults/

https://thephilfactor.com/2017/10/24/top-ten-tuesday-the-ten-scariest-movies-of-all-time-3/

https://jaipurthrumylens.com/2017/10/28/bhangarh-fort-ghost-haunted-stories-rajasthan/

https://butterflyinremission.wordpress.com/2017/10/29/funnybones-my-halloween-flashback-nostalgia/

https://www.momtrends.com/2017/10/delicious-healthy-candy-swaps-halloween/

http://www.natalieshealth.com/2017/10/halloween-ghost-vanilla-donuts/

https://justanotherblogfromawoman.blog/2017/10/26/halloween-playlist/

https://www.yourvetonline.com/halloween-top-safety-tips-keep-pet-safe/

https://fancypaperblog.wordpress.com/2016/11/02/how-to-theme-a-one-year-olds-party-for-halloween/

https://www.judyedwinamartin.com/couple-of-halloween-limericks-witch-and-werewolf/

https://marriedcatladysite.wordpress.com/2017/10/26/decisions-decisions/

http://www.sherbakes.com/2016/10/step-by-step-tutorial-on-how-to-make.html

Halloween Brain cake

Image from Sherbakes.com

Please like, comment and share anything you enjoy!

Claire x