Monday Magic – Inspiring Blogs for You!

Monday Magic

I have found myself reading a lot of new blogs and posts recently – many that I have found through link /meet & greet parties and others through connecting on instagram, twitter etc!  It just strikes me what talented people are out there and also some pretty fantastic writers too.  Some of your poetry has blown me away.

So this week I have some very new bloggers to introduce you to along with some well established, but new to me, sites.  I hope that some of you newbies will consider looking up the Chronic Illness Bloggers network and joining us – we are a friendly bunch who communicate mainly on our members facebook page!  Details here : How to join Chronic Illness Bloggers.

So once again, grab a cuppa, put your feet up and enjoy some great posts – please remember to comment and share if you enjoy them,

Claire x

 

http://iwendy.ca/2017/05/17/hello-world/

https://3sistersabroad.wordpress.com/

https://fibrowarroir.wordpress.com/2017/05/11/life-then-life-now/

https://courtneymmorgan.wordpress.com/2017/05/21/week-one/

https://mywalkinthewoods.wordpress.com/

http://www.multipleexperiences.org/2017/05/19/this-is-jamie-the-raw-and-uncut-version/

https://highwaytohealingblog.wordpress.com/2017/05/14/named-remarkable-traveler-by-weigh-out-wander/

https://morespoons.com/chronic-talk-episode-2-mental-health-awareness-month-mother-schizophrenia/

http://www.abreak4mommy.com/2017/04/myobuddy-massager-pro-review/

http://sweatpantsandcoffee.com/sweatpants-self-care-8-tips-to-help-you-thrive-while-living-with-constant-fatigue/

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Puerto Vallarta – photo taken by Kirstin Larkin, HIGHWAY TO HEALING BLOG

 

 

 

Adrenal Fatigue – Pin review from Cathy, Ty Siriol Ceramics & Crafts

Cathy at Ty Siriol Ceramics and Crafts recently posted a short review for this book on pinterest which I thought I would share with you.

The “blurb” from Amazon reads “This is an incredibly informative and reader-friendly book about a common debilitating medical condition that goes largely undiagnosed and untreated. ADRENAL FATIGUE: The 21st Century Stress Syndrome is a very empowering work cram-packed with vital information about a condition that very likely affects millions of people”

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Cathy writes “I’ve recently read this book to try to get to the bottom of why I’m so exhausted, among other things. It’s a really good read and helps you to assess if this could be a problem for you as well as giving really thorough advice….” Remainder of her short review is here:

http://pin.it/tyWipX2

On Amazon the book has received 151 reviews with an average 4.5 stars out of 5.

Monday Magic – Inspiring Blogs for You

Good morning and welcome to another Monday Magic with some more great inspiring blog posts for you.  I have just returned from a GP appointment and my head is spinning with the various specialist appointments I have on the agenda….endocrinology this week, cardiology, rheumatology, hip x ray and then orthopaedics…..

This is without the referrals for the kids!  University College, London where I was diagnosed no longer accept direct referrals so the kids need to be referred by another consultant.  Initially this was to be a paediatrician, but the A level student has turned 18 and the paediatric department decided that they really don’t know enough about EDS to take my lovely girl on, so she has been referred to a paediatric geneticist.  We are going to try to get an appointment for my son with the same rheumatologist that I see…….I think that we just have to go with the saying “don’t hold your breath”!

Monday Magic

So I am going to sit down with a coffee and enjoy some tips, some yoga and some stories from some of my fellow chronic illness bloggers – if you look and listen really hard, you might spot yours truly in the You tube film from Invisible Girl!!

https://1nvisibl3girl.wordpress.com/2017/05/05/living-with-ehlers-danlos-syndrome-edsawarenessmonth/

https://howtogeton.wordpress.com/2017/05/07/how-to-answer-15-tricky-disability-questions/

http://www.satonmybutt.co.uk/more-flare-ups-than-good-days/

https://www.notaballerina.com/2017/05/travel-disability-chronic-illness-episode-53-thoughtful-travel-podcast.html

https://brainlesionandme.com/2017/05/07/self-care-happy-distraction/

http://www.health-hats.com/golden-rule/

https://weartearandcare.com/2017/05/02/meeting-the-neurometrix-team-and-seeing-the-quell-up-close/

http://glasshalffull.online/accessible-yoga-for-all/

http://dystonialiving.blogspot.co.uk/2017/05/my-4-favorite-self-help-tools-for-pain.html

http://www.makeitbakeitfakeit.com/2017/05/my-body-my-prison-my-life-with-mecfs.html

http://upbeatliving.net/downsizing-emotional-work-tips/

http://dadhasaheadache.com/2017/03/22/shattered-dishes/

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Monday Magic- Inspiring Blogs for You

Hello!  I hope that everyone is enjoying a fantastic Easter  long weekend.  I am still finding new blogs to share with you from the Chronic Illness Bloggers group and this week we have a mixture from art to crafts to our loved ones.  So go make yourself a cuppa, pull up a seat and enjoy getting to know some more fantastic inspiring people,

Claire x

Monday Magic

  1.  http://thethyroiddamsel.com/autoimmune-diseases/losing-friends-and-alienating-people/
  2. https://chronicallycomposed.wordpress.com/2017/04/14/knitter-natter/
  3. https://illness-to-wellness.com/2017/04/15/what-to-say-when-someone-doesnt-know-what-to-say-in-response-to-your-suffering/
  4. http://superpooped.blogspot.co.uk/2017/04/spoonies-artist-problems.html?m=1
  5. http://mysurvivalcollective.com/thank-you-for-my-chronic-condition
  6. https://www.consciouscrafties.com/dealing-with-a-large-order/
  7. https://thegirlwiththefiveladsandfibro.blogspot.co.uk/
  8. http://mystripylife.blogspot.co.uk/2017/02/9-reasons-school-causes-stress-eds-cmt.html
  9. http://countingmyspoons.com/2017/04/when-your-partner-is-struggling-with-chronic-illness-and-pushing-you-away/
  10. http://fedupwithfatigue.com/april-14-2017-fibromyalgia-news/

 

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Beautiful picture from Ness’s post on The Girl with the Five Lads and Fibro

Can creativity be a realistic distraction in the face of chronic illness? “The Agony & The Ecstasy”

I have another link for you this week which examines how distraction, particularly through the arts, can help to manage symptoms of chronic illness.  This could of course be construed as a sweeping statement and I am certainly not saying that every chronic illness can be tamed by use of artistic means.  I am certain that those of us with chronic illnesses will readily say that our own conditions vary from day to day, some from hour to hour, and that relief and the methods to get that relief are variable.  In other words, conditions are individual and we certainly are.

I have written about British actress Cherylee Houston before.  She is in a long running British soap opera, is a chronic pain sufferer, wheelchair user and is the ambassador for Ehlers Danlos Support UK.  In this BBC Radio 4 programme she sets out to meet other chronic pain sufferers and to learn how the condition impacts upon their lives, their work and how they use creativity to help themselves.  Is pain always a negative experience or can it actually enhance creativity?

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Actress Cherylee Houston on the cobbles of Coronation Street with Lara Bloom, EDS.org

Many of us bloggers use writing as a creative way in which to help our own situation – this may be through connecting with others, supporting others in similar situations and reaching out for support ourselves – but more often than not actually writing about our experiences and feelings is a cathartic experience in itself.

 

 

Nearly everyone will be able to identify with some part of this programme and I hope that you find it inspiring.  Enjoy!

The Agony and The Ecstasy

Further reading : The Pain and Performance Artist Martin O’Brien – an essay

Photos from Google Image search

 

 

 

 

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

Are you a Chronic Illness Blogger?

Calling all bloggers – do you write about chronic illness?  Have you found the Chronic Illness Bloggers yet?  We are a group of like minded individuals who link up and support each other on our blogs, Facebook pages, Twitter, Pinterest, Instagram….you get the idea.

Our blogs range from posts on individual illnesses – pain, fibromyalgia, EDS, mental health, migraine, Lyme disease, to name but a few – to reviews of products, books etc., coping mechanisms, recipes, blogging tips and living life!  Come and join us.

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“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 Christmas – inconvenient illness for the holidays

Pain pals,

I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so.  Blog posts, social media & all things requiring thought or energy have been low down the list of to dos.  Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help.  Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds!img_20161228_093658718

Wouldn’t it be great if chronic illness gave us a break over the holidays?  When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks.  I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life.  POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.

The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute.  My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert!  I have cancelled coffee & lunch, rearranged and then the same again.  We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.

But there have been memorable moments.  I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants.  Fantastic!  One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway.  Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs.  We were both exhausted and if ever there has been a time to feel light headed this was it.  Then I remembered why I had put them on.  I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!!  30792624840_5e2ed23d47_o
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it.  About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….

 

 

The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks.  I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it.  I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket.  I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital.  The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment.  I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door.  I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!!  He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.

The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company.  The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it15057249_634518260052328_1346051735637983232_n all happened rather quickly and reality was I wouldn’t be well enough.  So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine.  This left me alone with the teens and I did enjoy the couple of days I had to myself.  I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful!  We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl.  She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts).img_20161124_193246307img_20161228_093523565_hdr

So it really has not been all bad.  I have missed writing and the support of my social media chronic pals, but I know that you all “get it”.  Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).

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Breakfast Xmas morning – wonky cutting courtesy of Mr Saul

But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!

I hope that you have had a peaceful Christmas holiday,  Claire x

 

 

 

 

 

 

 

 

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The beautiful Italian home of Audio Deva

 

#Olympian despite #chronic illness

I just want to give a shout out to the amazing Siobhan Marie O’Connor who has won a silver medal in the 200m swimming medley.  Of course I support her because she is British, but I support her and salute her for succeeding in spite of the chronic illness that she lives with every day.

Siobhan has the debilitating condition ulcerative colitis which is hard enough to live with day to day for the average person, but for a world class athlete it is a major feat.  To balance the demands of daily training sessions, early mornings, study, travel & dietary requirements for training with the symptoms that accompany inflammatory bowel disease – this 20 year old young lady has deserves all the accolades that will come her way.

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(Idiots guide to inflammatory bowel disease – UC & Crohns – to follow!)