Monday Magic – Inspiring Blogs for You!

Happy Monday, Pain Pals, and a belated Happy Mother’s Day to all in the USA.  I have just had a really busy weekend – that I plan to write about this week -and am struggling to sit upright today, so I’m not writing my normal preamble about life in the PainPals household. I’m not sure how much sense you would get out of me….

Monday Magic Inspiring Blogs for You! 14 may

 

So I will launch straight into the blogs that I have found for you….there is a wonderful life lessons post from 100 year olds, a letter to the person feeling suicidal, a letter from a mother to the child she carried but never met for Mother’s day and a practical post about moving your blog to wordpress.com.  I really need to sort this out myself!!  Finally I could not let the opportunity go by to slip another a zebra post for May – this book review is fantastic and I could not do better myself for the book that has become our family bible (no offence intended to anyone).

So sit back (I have a cuppa and slice of my Dad’s gluten free coffee birthday cake – made by mum!), relax and enjoy some fantastic bloggers’ writing.

https://www.mymeenalife.com/signs-need-new-rheumatologist/

https://writedownthemidddle.blogspot.co.uk/2017/08/pointing-to-myself.html

https://illness-to-wellness.com/2018/05/10/whylive/

https://thepurplealmond.com/2017/03/02/life-lessons-from-100-plus-year-olds/

https://weeklydoseofsue.com/2018/05/13/gob-stopping-comebacks-for-nitwits/

https://awriteradolescentmuse.wordpress.com/2018/05/14/monday-memoir-unforgettable/

https://en.blog.wordpress.com/2018/05/14/transfer-your-existing-domain-to-wordpress-com/

https://thisgirlsgotcurves.wordpress.com/2018/05/14/pathology/

https://wordsthroughthedarkness.wordpress.com/2018/05/13/mothers-day-2018/

https://scienceoveracuppa.com/2018/02/11/book-review-understanding-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorder/

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Please share these posts and leave some comments or likes – make a blogger very happy!

I look forward to writing you some more when the brain and body start to function…in sync!

Have a great week, Claire

 

 

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Fibromyalgia Awareness – by Caz at Invisibly Me

This is a blog post from Caz at Invisibly Me blog marking:

International Awareness Day – ME/CFS // Fibromyalgia // MCS – 12th May 2018

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Today I’d like to do my own little tribute for the International Awareness Day for Fibromyalgia. It’s a little in advance as I’m sure that come Saturday there will be many posts on this.

Fibromyalgia has long been looked upon with scepticism, with many individuals and medical professionals doubting its existence. Some have regarded it as an umbrella term for lack of an officially recognised diagnosis, while others have intimated it to be psychological. Recent years have thankfully begun to shed light on this condition. Tireless campaigning has helped to raise awareness, increase understanding and has worked towards official recognition. But the fight isn’t over yet. There’s a long way to go to reduce stigma and improve both diagnosis and treatment for those dealing with fibromyalgia.

I was officially diagnosed with fibro by my rheumatologist last year after dealing with symptoms for years, initially thought of as being due to other conditions, that there was nothing wrong with me or perhaps that it was in my head (which they also said about my stomach issues, and here I am now, with a stoma!) For a while, I had asked to avoid labels and ‘umbrella terms’, mostly for fear it would signal the end of the road. I didn’t want them to stop looking for causes and the root of the problem, leaving me forever feeling worse and with no real way to get any better. I wanted them to keep looking, to figure out what was wrong, how my life has taken such a turn so quickly and left me like this for so long. The official diagnosis is to be reviewed in the near future due to overlapping symptoms between fibro & ME and the query over whether it’s both.

For full post visit Invisibly Me – and please share!

Ehlers Danlos Awareness Month Challenge! Spread the word and tell the world about EDS

EDS AwarenessTake the Challenge! (1)

 

This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!

Here goes:

  1. Hypermobile EDS
  2. Officially in 2012 aged 43, unofficially aged 20 as a student nurse orthopaedic surgeon told me I had Marfans syndrome (another connective tissue disorder),  also hypermobility & Mum’s and my long limbs/fingers noticed by a GP when aged 7
  3. POTS, migraine, Raynauds, difficulty regulating body temp, gut motility probs/gastroparesis, chronic back pain & cauda equina syndrome.
  4. Very….slightly less so now than as a teen!
  5. Moderate
  6. Wheelchairs, walking sticks, crutches, motability car
  7. Spinal cord stimulator implant, heat, drugs, more heat, cushions & stretching, yet more heat
  8. Mainly all back surgeries – laminectomy, pedicle screw fusion, redo of fusion with extension, spinal cord stimulator implant, x3 c/sections, minor shoulder & knee exploratory
  9. For surgeries, pain management, gut management
  10. Normal now is constant back and leg pain due to nerve root damage – managed with spinal cord stimulator, limited mobility, worst POTS symptoms in the morning after breakfast, at least one dislocation per day and generalised background pain, poor stamina, nausea & slow gut, unable to feel when bladder is full
  11. Flares vary – generally pain is far less predictable & out of control, brain fog/memory problems, fatigue, POTS flare when unable to even sit up without fainting, blood pooling in hands and legs, breathlessness, lack of concentration, visual and smell disturbance (migraine)
  12. Fab GP, Pain specialists, Cardiologist, Rheumatologist, Orthopaedic surgeon, Gastroenterologist, Urologist……
  13. In our local small supermarket with hubby – I had walked with a Smart crutch, but as we got to the checkout those familiar POTSy feelings came and I was unable to sit down fast enough.  Next thing I knew I was coming round on the floor, shoulder dislocated as arm stuck in my crutch, with a very nice young man at my side rushing for water…..hubby? Well having checked I was safe on the floor, he carried on paying for the shopping telling the bemused cashier “Oh, don’t worry she does this all the time”!!! Her face was a picture.
  14. This has to go to be shared by 2 physios, 20 odd years apart…..the first told me as a 21 year old student nurse that “You nurses are all the same. It is in your head”…..despite my footdrop, no reflexes, and double incontinence – corda equina syndrome!!! Following my second spinal fusion and discovering I had nerve root damage & thus permanent pain, my rehab physio decided she would be able to “cure” me.  During my second visit she told me that I needed to work harder to get some movement into my lower spine…..erm, I don’t think so!  There are enough screws and filler in there to hold up a kitchen cupboard – IT  ISN’T SUPPOSED TO MOVE, WOMAN!  We agreed to part company.
  15. I have been so lucky – but my pain specialist at St Thomas’s actually believed me and has made life bearable AND my cardiologist who also believed me and knew about EDS & POTS (I was so convinced my tilt table wouldn’t show anything)

I will save you from more wittering today and publish the second half later this week!

#FragileButUnbreakable #EhlersDanlosAwarenessMonth #ZebraStrong

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Not even doing the full bend here – don’t do this at home!

 

 

May is Ehlers Danlos Syndrome Awareness Month – Why the Zebra?

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I warned you yesterday that I will be going totally overboard with the EDS awareness posts and zebra pictures this month.

To kick us off here is a quick explanation of “Why the Zebra?”

Medical students/junior doctors have always traditionally been taught to look for the simplest explanation when diagnosing a patient in order to prevent misdiagnosis of rare conditions.  If it looks like a horse and it sounds like a horse……if you hear hooves, think horse…..etc!

In medicine the term zebra is used to describe a rare disease/illness/condition, but often it can feel that medics forget that whilst rare, zebras do exist and can struggle to get a diagnosis and treatment.  This is frequently the case for Ehlers Danlos Syndrome patients, and so we have become known as medical zebras.  This has been adopted by the worldwide community now as the identity for EDS and through the use of social media helps to unite us.

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Monday Magic – Inspiring Blogs for You!

The last day of April and the showers are having a laugh as they are more like downpours.  Hubby has gone into the abyss this morning – or rather the Year 5 activity week in Kent where he has mud, zip wires, mud, archery, more mud, climbing, yet more mud and fun!  All with approximately 60 nine and ten year olds…eeekkkk!  There will even be a disco one night, so I hope he remembered to pack his sparkles.

MM 30th April

 

The main event of the week in our house has been the student engineer turning 22, although at times I wonder if it was 5.  His mood swings are off the scale at the moment and the lovely girl and I are counting down the days until his final exams are over – he is always a complete nightmare to live with during exam season!  But I don’t know where the time has gone but my little boy has grown into a young man about to enter the work force (hopefully with a top notch degree in Electronic Engineering) and a world where he speaks a different language to his parents (tech!!).

The lovely girl took her final art exam and passed with full marks.  Her work will have to be moderated, but unless the moderator looks at it with completely different ideas to her art teachers, she will have an A*.  She is so modest that she will hate me for even writing about it – I wish I could say she inherits her talent from her mother, but I’d be lying.  No, not from her father either before you ask!

 

Yours truly  has been fitting in a couple of book reviews and a trip to see the wonderful film Journey’s End around an ongoing migraine – you know the type that you think has gone and than a flicker of sunlight and bam, there it is again.  Several days on now and it has gone, but my head is still stuffed full of cottonwool and my tongue has been secretly pumped with fillers!  The film, adapted from the play by R.C.Sheriff an old boy of my school, is something that I would like to review as a separate piece for you, so watch this space!

Finally, May is Ehlers Danlos Syndrome Awareness month so I give you fair warning now that there will be a constant supply of zebra stripes on this blog.  Meanwhile I hope that you will find my selection of posts this week both enjoyable and useful.  There are pieces about tick bites and Lyme disease,  how to relax doing art, and getting a dog.  For ladies of a certain age Tasheenga brings us “That Bitch Big M” – seriously funny!!  There are also a couple of very inspirational posts from within the wonderful spoonie community!

So grab a coffee, turn off your phone and sit back to enjoy some great blog posts.

http://supermomhacks.com/stuff-i-love/protect-your-kids-from-tick-bites/

http://www.youcanalwaysstartnow.com/2018/04/23/painting-dot-mandalas/

https://tasheengawriteshere.wordpress.com/2018/04/16/that-bitch-big-m/

https://mydailyjournalonline.com/theres-lot-thankful-world/

https://www.unboundroots.com/earth-day-lesson/

https://imsickandsoareyou.com/2018/04/29/when-a-cat-person-gets-a-dog/

https://pseudomonaz.wordpress.com/2018/04/28/to-be-continued/

https://mashaellman.com/2018/04/27/take-time-to/

https://www.sicklessons.com/depressive-sleep-gift/

https://www.ajourneythroughthefog.co.uk/2018/04/be-proud-of-every-step-you-take/

As ever please share some love for these bloggers on your social media sites.

Have a great week,

Claire x

“Coming to Terms with a Stoma” – shared by Caz, Invisibly Me Blog

This is a very open and honest post that Caz from Invisibly Me blog has shared with Talk Health Partnership Blog – she really inspires me and I hope that you feel the same.  Even if you aren’t one of the chronic illness community, please read this amazing young lady’s story!

Caz

Image from Invisibly Me blog

“Some people get a day. Some may get a week, a month, a year. Others may get no warning, simply waking up with a new life.

From IBD and cancer, to colonic inertia, pelvic floor dysfunction and bowel trauma, stoma surgery is undertaken for various reasons. It may be temporary, with the hopes of being reversed at a later date, or it may be permanent.

One thing remains constant: having a stoma is a big deal, though the experience of life with a stoma is as different as every individual is unique.

Pre-Op : Ignorance Is Bliss?

Although I had forewarning and agreed to the surgery, even as I was being rolled in to the operating room my brain hadn’t quite absorbed what was happening. I talked to my parents about it as though it were a clinical rather than personal issue, as though it were happening to someone else. While my parents were upset, I was busy preparing for surgery and focusing on the practical things I could do. It was my third operation but it didn’t feel any easier to get my head around.

In some ways, there was an element of ‘ignorance is bliss’. I didn’t want to know too much; just enough to prepare myself, not too much to scare myself.”

Please continue reading the full article here

A Park Visit – Daily Prompt : Glimmer

Someone opened the door today

And out I went into the world.

The sky was grey and the earth was wet

A chill in the air permeated my bones.

Nerves and joints hurt so bad

The titanium inside felt icy cold,

Pains misfiring and doing battle

With the pulses of current sent

To stop them in their tracks

From the electrode sleeping

Against my spinal cord.

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As the park cafe beckoned,

A small alcove housed my wheels

And provided shelter.

Whilst an external heater,

At the lightest touch of a switch,

Spilt a glimmer of light and warmth

To wrestle with the cold world.

 

Daily Prompt – Glimmer

 

Daily Prompt #Explore – My Brain Fog

How can I explain to you my brain fog, dear friend?

Come with me and explore the opiate shaped holes in my mind

Move inside my skull, around my head and explore

The maze of cotton wool corridors.

Think of what you have just left behind you,

Explore around the next corner,

And then turn back.

But the fog has enveloped that last thought

And we are lost,

To explore no more.

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Drawing by Lucy, Zebra Girl (wasc.uk/zebragirl)

 

Daily Prompt : #Explore 

 

 

 

 

 

 

 

 

 

 

 

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