I have just found this fantastic blog through Dream Big Dream, Dream Often Blog Sharing – definitely one to follow!
Denial Only Makes Chronic Pain and Illness Worse
This piece from 2015 in Psychology Today really made me sit up and think, after a flare week, and remind me to focus on the positive in life…..even when it isn’t easy.
“I’ve done my share of denying that I’m chronically ill. It’s tempting to pretend that I’m as healthy as can be, but when I ignore my limitations by staying out too long or by insisting on engaging in activities that are beyond my energetic abilities, invariably, I land in bed for days. And so, I’m working on giving up pretending. It’s not good for me physically or emotionally.”
Please find the rest of this article by Toni Bernhard here: Denial Only Makes Chronic Pain and Illness Worse
Share this:
“How to be Disabled…According to Stock Photography” Hilarious article by Autostraddle author Carrie
I have just read this article in Autostraddle and it really made me laugh – the slightly dark, manic humour of a nurse and spoonie! I want to share it with you…..but if you are a spoonie who is easily offended steer clear!!
“I have to take this moment to apologize. It turns out, dear readers, that I’ve been leading you astray. I thought I had this whole “being disabled” thing figured out — y’know, focusing on intersectionality, various forms of ableism, or political engagement — but nope! My mistake! Apparently I’ve been doing it wrong since birth and need to completely overhaul my approach. And who do I have to thank for such an urgent epiphany? The wide, wise world of Shutterstock.”…….
Full article at this link, do read to the end:
How to be Disabled, According to Stock Photography by Carrie
Share this:
Migraine, Anxiety, Ehlers Danlos and Guilt
Our household has been plagued by migraine this week. Whilst the actual physical condition only affected one member of the family, the anxiety it caused affected us all. The A level student is all but an adult, a tall, lanky young man not so different from every other adolescent on the edge of adulthood. But he is afflicted with migraine headaches and anxiety which are becoming more and more regular.
I was much the same as a teen, but I think that mine reached a peak at about the age of 20, when I found myself referred to both a neurologist and gynaecologist. Of course something that I now know that my mum didn’t, is that migraine is particularly prevalent in the Ehlers Danlos community – actually we had never even heard of EDS. But mum has always experienced migraines, and we all have painful necks and what mum has often described as a lollypop head. You know, when your head is too heavy for your neck. I have memories going back to childhood of needing to roll my head and crack my neck, starting when sitting on a schoolroom floor looking up at the blackboard – yes, I am that old!
But now the anxiety comes from concern for the next generation in our household. We are constantly being told that the mental health of our youngsters is on the decline, and the school have told us that there is enough work to keep the counsellor in full time employment for the sixth form alone. I suppose we could say that whilst my three have not been formerly diagnosed, I can recognise enough EDS traits in them and they all share high anxiety levels. This, coupled with migraine and the stresses of coursework and public examinations for the second, have pushed me to become that mother who seems to be constantly emailing the head of year at school. I have gone from merely attending parents’ evenings to contacting the school on a weekly basis and I even sent in an information sheet about EDS.
Being aware that your children, no matter how old they are, have inherited certain traits from you and believing that your own health issues have impacted upon them, is very different when actually seen written down in black and white! An assessment that we received this week, in an attempt to help gain some control for my son over the migraines ahead of his exams, listed out issues for all of us. In fact the only one not covered is the dog and he probably is the most stressed of the lot!! He was a rescue who was diagnosed as special needs and autistic when we took him to training…..now aged 14, he is pretty happy so long as he is at home with no other dogs in sight.
Whilst the rational part of me knows that I shouldn’t blame myself, the irrational psyche is guilt ridden. I know that many other chronic illness bloggers have written how nothing can adequately describe the guilt that we can feel about the impact that our health has upon our loved ones. For me it has weighed more heavily than ever this week as I read that assessment – maybe it is self indulgent to feel that I shoulder the blame for my husband’s stress related health problems, the university student’s peaks and troughs of angst with the world, the migraines of the A level student and the the now increasing subluxations of the lovely girl. The kids all have pain in their hands and wrists upon writing, and my daughter has never been able to hold a pen “normally” to write.
It was only when I recently purchased finger splints that I realised that I too have always felt pain in my hand, struggled with pressure in my fingers and found myself much slower at writing than my contemporaries. For all of us aches and pains are just normal everyday.
Although we currently await an appointment for the younger two to be seen at University College Hospital, London where I was diagnosed, and the right medication needs to be found to stabilise the migraines, at least I have learnt enough to find the A level student qualifies for rest breaks during his exams – politics, history and English literature. All essays…all heavy on bendy fingers, thumbs and wrists. Thanks to all those who have offered support and advice when I have asked for help this week – you know who you are!
Share this:
Pink Shirt Day – stand up to bullying
Please take a look at this great post on the blog Being Lydia and support this cause!
Wednesday, February 22, 2017, is Pink Shirt Day in Canada. It is the day that we wear pink and promise that we will all do our part to stop bullying. Like with Bell Let’s Talk Day in January, Pink Shirt Day is sponsored by the media (Shaw) who are donating $1 for every #Pink Shirt […]
via Pink Shirt Day – Stop the Bullying —
Share this:
Book Review “Mortiswood: Kaelia Awakening” – a little magic in the ordinary
Mortiswood: Kaelia Awakening by Gina Dickerson
I was very pleased to be given a copy of this book by The Book Club on Facebook in return for a fair and honest review. All views are my own.
“For everyone who sees a little magic in the ordinary”
Nineteen years ago on the Isle of Stone a tall menacing figure demands that Father Peter hands over a child that has just been born, and when a younger man scares it off, the figure turns into a hideous black cat with flanks of rotting flesh. This is our introduction to the strange world that is about to reveal itself to us.
Kaelia is introduced to us with her friend Bay at the age of eleven, playing in a local playground that will play a significant role in her life. She is a happy, seemingly normal young girl with her life ahead of her, when out of the blue strange things start to happen or rather she makes strange things happen. Fast forward to present day, Kaelia and Bay are now nineteen years old and on a trip out with their college, when an unthinkable accident happens – or is it? Kaelia begins to think that strange forces are at work, the “them” that her parents have warned her about. So begins Kaelia’s journey to discover her destiny, by way of a magic book, a huge wolf in a cave, and a journey to the Isle of Stone where a long lost grandmother lives. Maybe she will hold the answers to Kaelia’s questions and shed some light on the mysterious Salloki whom her parents had warned her about.
A confession. I really haven’t read much fantasy fiction, probably only Harry Potter and the Twilight series in recent years, with my kids. So I wasn’t sure what to expect from this young adult series opener or whether I would like it. But one of the things that I love about being a part of a book club, and specifically The Book Club on Facebook, is being given the opportunity and encouragement to try different genres and new authors.
This book came along at a time when I have been having what us “spoonies” (chronically ill) describe as a flare and as such I have been tied to the sofa for more hours than I would prefer, and equally have had periods of brain fog which doesn’t lend itself to Tolstoy. Ms Dickerson’s Kaelia was perfect for me! I found the book easy to read and quickly became totally absorbed in the trials and tribulations of this young flame haired lady as she learnt to harness her powers. The mix between the real world and the magic world sitting right under the nose of us mere mortals was just right. I enjoyed the suspense as Kaelia discovered her birth line and those pledged to help her in her task to fulfil her destiny. There are some lovely characters – particular favourites of mine were the students at the magic academy, Cadence and Jade, the Sifars – and even the wolf, a Vallesm, takes on a character of his own. The darker characters are described so well: Thom who emanates a stench of decay and changes into a horse with putrid, rotting flesh in order to re-enter the underworld; Bran, the Necromancer who can bring back the dead, is dressed in black and described as the other side to the coin of Kaelia – is his interest and friendship for Kaelia genuine or purely a means to an end?
I don’t want to reveal any spoilers and it is hard to talk too much without doing so! But what I will tell you is that this a good, fun fantasy, in my opinion ideal for young adults….and us adults who are young at heart! My teenage daughter is going to give it a go – as a Harry Potter fanatic I expect her critique to be pretty hard. So going back to my original confession…..I have another to add to it. I enjoyed this enough that I have also read the next in the series, and enjoyed book 2 even more! Roll on book 3, Gina Dickerson……
4 Stars ****
Share this:
For Valentine’s Day – my “Most Inspiring Blog” Awards
BM Blog Awards – Most Inspiring Blog
Most bloggers, at some point, will have heard of a blog award be it from a professional organisation or from one blogger to another.
After reading on the Word Press Community Pool that ‘anyone’ can make up a blog award and nominate another blogger with that award, Barbara McLullich a freelance writer & blogger at Back Pain Blog UK decided that she would create some awards herself. She writes:
“Receiving any award gives you a bit of a buzz and when I was recently given the “Top Migraine or Chronic Pain Blog Award” I sat and designed my blog widgets and the type of awards I wanted to give out.” My Pain Pals Blog was fortunate enough to be a recipient of a Most Inspiring Blog Award. 
All the awards come with rules which the recipient has to follow and although not always the same they are basically
1. This award exists only on the internet, and is given to bloggers by other bloggers.
2. Thank your blogger who gave you the award and link back to their blog.
3. Copy and paste the award on your blog.
4. List 3 things about yourself.
5. Nominate 8 other bloggers for the award and list them.
6. Inform those blogs by leaving a comment on their blog.
So Pain Pals and blogging friends, after several weeks of thought, I have posted some recipients for my “Most Inspiring Blog Award” – check your comments boxes!
My list of award winners – not all chronic illness bloggers -are as follows:
- Amy at POTS:Finding Smiles in the Trials – her fun and honesty when learning to live with postural orthostatic tachycardia syndrome has inspired me on my own POTS journey, and she has been a great support from “across the pond”
- Genevieve at Ship with no Sails – this beautiful lady writes with such heart and passion, she has reduced me to tears
- Willow at Bend and Snap! Diary of a Bendy Girl – Willow writes about living with Ehlers Danlos Syndrome (which I also have) and I have the honour of calling her a zebra friend as we met at a support group meeting and live up the road from each other. She is a lovely young lady who at times is so poorly, yet always smiling.
- Anna at Anonymously Autistic – Anna, not her real name, writes candidly about living with autism: how it feels, how it disables her, how she views the world and how she feels the world views her. Writing is her therapy and she inspires me.
- Ness at The Girl with the Five Lads – Ness blogs about life as a mum to 5 boys, living with the daily trials of fibromyalgia. She was one of the first bloggers to connect with me when I started blogging.
- Kristine at A Life Well Red – Kristine started blogging when she was diagnosed with fibromyalgia and myalgic encephalomyelitis, and her aim is to bring legitimacy and understanding to invisible conditions.
- Sarah at My Stripy Life – Sarah writes about life & her family living with EDS. She has just written a lovely letter to her Younger Self which is so moving.
- Danny at Dream Big, Dream Often anyone can do it – Danny helps and inspires the blogging community to realise their potential and reach goals; he is also an ambassador for Multiple Sclerosis research and awareness, having been diagnosed in 2007.
- Stephen Tierney at @LeadingLearner – Stephen is CEO of a Multi Academy Trust in the UK and also chairs several groups that work toward the redesigning of school vision and putting children at the centre of education. His blog has inspired me as a school governor with honesty, humour and desire to strive for excellence in education.
- Finally Drew Murray and Stephen Davies at Team Unlimbited Blog – these remarkable gents are volunteers who work collaboratively to develop new prosthetic 3 D printed assistive devices, researching into materials and functional improvements. All work is shared as open source for the benefit of all, for non-commercial use. I have to share this heart warming video with you! https://youtu.be/AWbJXbu2hlQ
Share this:
Red Velvet Blossom Cookies Recipe
I have just found this recipe on Devon’s site Mid Western Moms and I think it sounds perfect for Valentine’s day, or tomorrow, or next week…..anytime!
Share this:
Back Pain Blog UK asks who are the best doctors to treat and diagnose fibromyalgia
In America rheumatologists diagnose and treat arthritis and other diseases of the joints, muscles, and bones including fibromyalgia. Pain specialists are usually board certified anesthesiologists, neurologists, physiatrists, psychiatrists, or oncologists with additional training in pain management. Neurologists diagnose and treat disorders of the nervous system, but they also treat pain problems like Fibromyalgia. All of the […]
via WHO ARE THE BEST DOCTORS TO TREAT AND DIAGNOSE FIBROMYALGIA… — BACK PAIN BLOG UK…
Share this:
“5 Things Not to say to Someone with Chronic Illness” from ChronicMom.com
Have you met Shelley at ChronicMom.com? If not you should visit her site and some of her great articles – this one follows on from my last one beautifully.
“When you have a chronic illness you tend to get the same reactions from people over and over again. As much as you try to remember that most people have good intentions being regularly put into a position where you have to defend your illness is exasperating. Here are some suggestions for what not to say to someone with chronic illness:
- Saying things like, “But you don’t look sick”!
It’s really nice of you to say that I look good, but I have an invisible illness. You can’t see my pain, but believe me it is there. On a regular day I’m in more pain than most people could ever imagine, but I’m very good at hiding it. If you look closely you will notice that I hold my body in a different way than most people. You may notice the lines of tension if I’m trying to keep the pain at bay. You may notice that I’m especially quiet. You may notice that underneath my makeup I am pale and have huge circles under my eyes. You may notice that I’ve gained some weight lately, because I’ve been in too much pain to exercise and my body is too messed up to regulate correctly. You may notice that I seem spaced out, and that’s because I had to take pain medication that day.
The signs are there. Even if they are not visible immediately. The more you spend time with me, the more you will notice. My invisible illness will become more visible to you.”
To read more please go to:
PainPalsBlog 