“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!!

silhouette-2-1

“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

 

Advertisements

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.

da4c13fb137e5947d72059d0e43cdd2eI 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.e1d71b3efb257e52d557e74dca09aa6d

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.SONY DSC  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!

 

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 —

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.29367199

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 ****

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. 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:

  1. 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”
  2. Genevieve at Ship with no Sails – this beautiful lady writes with such heart and passion, she has reduced me to tears
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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

inspiring-blog-award

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…

“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.

5-things-not-to-say

“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:

  1. 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:

http://www.chronicmom.com/2017/02/5-things-not-to-say-to-people-with-chronic-illness.html/

A Chronic Comparison?

I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.

Last week I took part in an on line research forum into chronic lower back pain.  Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions.  We were also encouraged to comment on each other’s posts and interact as on any forum.  The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness.  The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.ch7jwb_weaaooad

So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing!  It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it.  Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way.  file_000-9

I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain.  Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.

The support group was a night out for us the previous week, and we even managed a meal before.  It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety  and EDS.  I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you.  When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if  they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.

I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure?  Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do!  But of course I don’t…..

When these comparisons happen, be it ourselves or others making them,  I wonder if there can be a thin line between support and competition.  I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms.  But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless.  I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”.  I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.

Just because a certain operation helped me doesn’t mean that it will help you;  just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!).  My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer.  The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups.  Yet whilst some people who have fantastic success with the stimulators have had a new lease of life,  I have actually deteriorated physically despite the stimulator being a success.

My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain.  Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other!  Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose.  But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.

I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about.  This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. 15831613-large The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time.  Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”.  Out of the mouths of babes….

So what am I trying to say?  We are all individuals.  We will all experience a common cold differently (think man flu!!).  So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another.  I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.

 

 

 

Blog Tour Book Review – “Somebody Like You” by Donna Alward

I was fortunate enough to be sent a copy of this novel by the author Donna Alward and Justine Sha at St Martin’s Press, New York in exchange for a fair and honest review – to be featured as part of the “Somebody Like You” blog tour!

ab66c2ab5e7e84b2d7c463589fdcc899Laurel Stone has returned to her small home town of Darling at a time in her life when she had expected to be spreading her wings and making a new “grown up” life.  She has done everything just as she had planned…studied hard, with uni and a degree, moved to the city, taken the sensible options and achieved a good job, home and relationship.  But by her mid twenties it has gone wrong, she has had her heart broken and followed the only route that seems open to her – home.

But what awaits her in a small town where everyone knows each other, and each other’s business?   Laurel Stone doesn’t want to rock the boat.  She wants to please her parents, her best friend, the town’s business community, even her ex.  But there is another ex from her high school days who is still living in Darling and he was the first boy to break her heart.  With a small crime wave sweeping through the community, how will Laurel cope with coming face to face with said ex, now police officer Aiden Gallagher, when her new garden centre is vandalised?  He was the first boy she had kissed and the whole town knows this as the photographic proof is hung in the town hall.  A 5 year old page boy and bridesmaid kissing on the town’s infamous “Kissing Bridge” and adorning the tourist information ever since.

This is “Chic Lit” at its best and a really lovely read for a winter weekend in February.  In Laurel we have a heroine who puts the feelings of everyone else before herself, burying her own feelings rather than face them.  She loves her new business, the Ladybug gardening centre, and is even inspired to give a homeless man a job, but she seems intent on ruining her own personal happiness.  She could be a bit too saccharine, but the whole way through the book the character of Laurel is written with something feisty bubbling just beneath the surface.  What will it take to push it to the fore?

At first Aiden is depicted as a twenty something version of his high school self, the popular boy with good looks and a swagger to match.  But he is constantly drawn back to Laurel, even persuading her to a holiday celebration at his large family’s home, although he can’t seem to do right for doing wrong where Laurel is concerned.  I think that Aiden grows up and opens up through the course of the book, and we learn about a different side to him as we meet his family.

There are some great back stories and lovely characters.  I particularly like Laurel’s best friend Willow, the yoga loving, hippy, wholefood café owner who provides the delicious sounding chocolate brownies that have a star role!  The homeless man George who both Aiden & Laurel take under their wings – his observation that “when you’re invisible you notice a lot” was so touching – and Oaklee the young very enthusiastic campaign manager for the town’s tourism.  She is determined to recreate “that” photo on the Kissing Bridge now that Laurel is home again.

This is a feel good story about relationships exploring family, sexuality, friendship and romance.   It doesn’t pretend to be a classic piece of literature – but it is a really enjoyable, easy read contemporary romance.  Great for spoonies!

Now I’m off to spend this wet, dark February evening starting the next in the Darling series, “Somebody’s Baby”……review to come!

donnaalward2