Monday Magic – Inspiring Blogs for You!

Welcome back, pain pals, for another week and that means another Monday of inspiring blog posts that I have found for you.Monday Magic

I’m not going to write about the ups and downs of life in the Pain Pals house here this week – I still need to write a proper post about genetics, my lovely girl and i can now include our new family handbook….more of this later, I promise!

The dislocations have been fast, furious and very regular over the last week and severe gut pains after every meal have both left me fatigued and sofa bound……but the good news is that I have spent time finding and reading some great new blogs.  I have picked some posts here and they range from chronic illness depicted as sweets, to body image, to a review, to some delicious looking frozen treats – perfect for the summer holidays (if only the sun would come back!!).  If you are a mum of a daughter, or indeed an adolescent daughter, you must read Dear Little Girl With the Smart Mouth – it made me laugh and cry….and read it to my teen girl!

SmartMouthFeatured-768x514

Image from jthreeNMe blog

So….grab a cuppa, sit down and unwind with these great, inspiring blog posts.  Please, please make someone’s day with a like, a follow, a share or even better a comment!

http://www.healinghugsandhope.com/2017/07/my-chronic-illnesses-as-candy-bars.html

https://www.itsnottoocomplicated.com/home/2017/7/10/a-day-out-with-a-disabled-toddler

http://www.blessingmanifesting.com/2017/07/stop-verbally-abusing-your-body.html/

http://www.sublimemercies.com/2017/07/ableism-beaten-down-and-fighting-back.html

https://readbetweenthelyme.com/2017/07/22/celebrating-3-years-here-at-read-between-the-lyme

https://www.jthreenme.com/dear-little-girl-smart-mouth/

https://brokendownbody.wordpress.com/2017/06/30/but-one-of-my-best-friends-is-black/

http://www.smilesandsundays.com/imak-compression-gloves-review/

http://achysmile.com/index.php/2017/06/12/abdominal-migraine/

http://myfruitfulhome.com/2017/06/29/16-yummy-healthy-frozen-treats/

raspberry-frozen-treat

Image from My Fruitful Home website

 

Claire x

 

 


 

Advertisements

Friday Feelings with Pain Pals Blog

I am really pleased to have been featured on The Zebra Mom regular Friday Feelings feature. Please check it out – and the rest of her great blog! Claire x

The Zebra Mom

Hey there, hi there, ho there!

As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.

This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.

Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
bladder and reactive depression. You can find Claire on Twitter, Pinterest and Instagram. 
EDS - Claire pic

“Hi, I’m Claire. I am a married mum of 2 boys aged 21 and 18, and a girl aged 14 living on borders of South London & Surrey, UK. My career was…

View original post 1,195 more words

For EDS Awareness month from Sunshine & Spoons “What It’s Like To Be A Kid With Ehlers Danlos Syndrome” – including mine!

Another great post for Ehlers Danlos Awareness month, this time from Hannah at Sunshine and Spoons blog.  As a child growing up with aches and pains, dislocations, sprains, dizzy spells, clumsiness, migraines, circulation problems….it really was just how life was as no one even thought to join the dots, let alone consider a syndrome that might be responsible.  I never even heard the name “Ehlers Danlos” until my late 30s – although Marfans was mentioned to me aged 20.

I do know about EDS now and have made it my business to as so many with rare illnesses need to.  The result has been that I recognise my kids are growing up symptomatic – although getting a diagnosis is proving difficult as referrals are pushed from the desk of one consultant to another – and understanding that not everyone has pain daily, struggles to keep up with hand writing in class, is constantly twisting an ankle or popping a joint.  One son is living with severe migraines for which we seem to be in a constant loop of changing medication to bring some control as he is about to sit his A level exams.  His long neck gives him daily pain and undoubtedly contributes to his migraines.  My daughter, aged 14, has dislocations, daily joint pain, dizzy spells, writing problems…..the eldest, the student engineer aged 21, is hypermobile, has a sternal “deformity”, clumsiness, dizzy spells – sound familiar?? All three, whilst very bright, suffer massive anxiety to such an extent that over recent years we have visited CAMHS, Heads Together, use of anti depressants and mindfulness techniques.  I feel a whole post coming on…..being the age they are, mum has not been able to pin them down for a quote as I write this!!

File_000 (20)

My younger 2 zebras and me!

So without further ado let me introduce some great children who have spoken to Hannah:

This post may be a little hard for you to read. I know I had tears in my eyes more than once while typing this up.

If you’ve been hanging around Sunshine and Spoons for very long, you know that at least 3 of my 4 kids have Ehlers Danlos Syndrome, which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.

Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises.

But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder. “

What it's like to be a kids with Ehlers Danlos Syndrome

 

For the remainder of the post and the children’s quotes please click on the following link

What It’s Like To be a Kid with Ehlers Danlos Syndrome

Migraine – the dark jailer (BBC Radio 4 programme)

One of my earliest memories is of being in the back of the car as my parents went for a night out to relatives and the smell of mum’s perfume.  Romantic – for some maybe.  For me the memory is actually of feeling ill – nausea and head pains that got worse and worse as the smell of Rive Gauche perfume intensified.  Just typing the words makes me feel sick even now.

Today I know that I was experiencing my first migraines.  Funny thing is that mum has always suffered too and also found that certain smells would affect her – in fact she hardly ever wore perfume, and like me, never wears it now.  One of our worst nightmares is walking through a department store perfumery.  Some of us have definite triggers, some none; some experience aura, others none.  Migraine does tend to run in families and does have a genetic background.  Hence mum, me and now my son…..and of course for us there is also the familial Ehlers Danlos Syndrome which is known to go hand in hand with migraine.

Through my late teens and early twenties I tried special diets, neck physiotherapy, acupuncture, hormone treatment – anything to try to escape the crippling pains, the nausea and vomiting, looking like I had a stroke and feeling like I was falling off the edge of the world.  Things became worse again when I was working night shifts –  2 different nights every week, 3 young children, no regular sleep pattern nor life pattern.  Something had to give and the migraines became more regular with more debilitating symptoms.  My GP had told me that I had to stop working nights and prior to my back problems resurfacing, I had requested a transfer to day shifts and was also applying for new jobs.

These days it is my son who experiences regular debilitating migraines.  Believe me, they are so much more than just “bad headaches” as so many seem to believe.  Visual disturbance, nausea, vomiting, unable to tolerate light and sounds, feeling not quite here…the list is different for everyone and goes on and on.  He is laid up for several days, in bed for hours despite prescription drugs and “hung over” after.

This is why I want to share with you this short BBC Radio 4 programme that was on earlier this week presented by writer and performer, A L Kennedy.  She says  “I find migraines fascinating. As a sufferer, they’re hard to explain to non migraineurs. They aren’t ‘just a headache’ and can even present as partial blindness. My first migraine was just that – a patch of total blindness in my left field of vision, which I was too shy to mention. Having compared notes, I find I’m not the only one to have had such an experience in adolescence.

“Then came the auras, the pain, the disorientation, tingling, the trouble finding the right words for things, the misdiagnosis as a stroke. Some migraineurs are rushed to hospital with doctors suspecting serious strokes or brain tumours.”

This recording will be so familiar to you sufferers and I hope insightful to everyone else – link can be found here:

A L Kennedy’s Migraine on BBCiplayer Radio 4.

download (4)

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!