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)

Monday Magic – Inspiring Blogs

Monday Magic

Good morning Pain Pals!

Some more links on my new weekly spot featuring inspiring blogs from my friends over on Chronic Illness Bloggers.  So many fantastic posts that I have doubled the number that I am sharing with you this week – so kick off those shoes, feet up, time for a relaxing morning cuppa. Please read,….share….and enjoy!!

C x

  1. http://www.mesheacrysup.com/blog-living-a-fibrolife/spontaneous-smiles
  2. http://mini2z.com/pill-drill-a-fun-new-medication-management-system/
  3. https://livingwithme.blog/2017/03/26/outside-looking-in-introduction/
  4. http://bladder-help.com/the-bladder-microbiota-and-urinary-incontinence/
  5. http://lilacandlyme.com/2017/03/26/sunshine-blogger-quiz-voice-behind-lilac-lyme-blog/
  6. http://strengthandsunshine.com/paleo-strawberry-coconut-thumbprint-cookies-gluten-free-vegan/
  7. http://chronicallywhole.com/five-fabulous-moments-france-england/
  8. https://thezebramom.wordpress.com/2017/03/26/10-things-to-do-with-your-children-when-youre-stuck-in-bed/
  9. http://www.hospitalprincess.com/2017/03/i-havent-eaten-food-in-over-year.html
  10. http://www.chronicmom.com/2017/03/9-things-that-help-me-cope-with-fibromyalgia.html/
  11. https://mymigrainelife.wordpress.com/2017/03/27/tranquility-salt-cave-for-allergies-and-stress-relief/
  12. http://itoldyouiwassick.info/2017/03/27/the-scientifically-proven-way-to-recover-from-a-chronic-illness-without-getting-out-of-bed-the-connection-movie-review/
  13. https://alifelessphysical.com/2017/03/24/15-things-to-do-for-a-life-less-physical/
  14. http://www.jennavon.com/?p=559
  15. http://livewithcfs.blogspot.co.uk/2017/03/weekly-inspiration-laura-hillenbrand-my.html
  16. http://www.thepaincompanion.com/blog/remembering-to-dream-a-week-of-inspiration-for-those-in-pain
  17. http://upbeatliving.net/pleasures-eating-mindfully/
  18. https://themswire.com/2017/02/24/the-music-of-ms/?frame-nonce=b7286ef3b1
  19. http://hope-health-healing.net/blog/2017/3/27/my-adventures-with-grilling-and-hair/
  20. https://www.survivingmypast.net/anxiety-tries-to-use-your-vulnerability-against-you/elizabeth-sonrel-our-lady-of-the-cow-parsleycrop

Today, You beat Me

Today, You beat me,

I woke with You again

Wrapped about my back like a lover,

Pulling at my limbs

My shoulders splayed

My joints pulled with gravity.

 

Today, You never let up.

I tried to lose You

But You brashly force out the monster,

The worst version of myself

Cross and bitter,

My loved ones suffer.SONY DSC

 

Today, You rob me.

My time is destroyed,

I cannot sit and idle in peace

For my body betrays me,

As you are with me

Within, trapping me.

 

Today, You beat me.

My body is weakened

And tears have fallen as spirit breaks.

So, so tired, no way back

I am bereft.

Pain, You have won.

 

Claire Saul

 

Today you beat me pin