Monday Magic – Inspiring Blogs for You!

A week into the new year, the decorations are down, the Christmas tree is looking forlorn on the back lawn and the kids back to school.  Well in our case nearly…..the lovely girl returns tomorrow, the middle child returns to university next weekend and the student engineer returned today, just as the UK train strikes started up.

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Monday Magic - Inspiring Blogs for You!

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Our house has been a mad frenzy of coursework this last week – 2 projects for the final year of Engineering involving analysing the use of Boris bikes in London and Deep Learning (whatever that may be!); the lovely girl has been finishing her sketch books and final piece for her art, although any visitors would have thought she was decorating the lounge!!  The title of her works – “I, Me, Mine” and “Blood, Flesh, Bones” – so she has focused on our genetic Ehlers Danlos Syndrome.  I have spent some time modelling for her photographs and I wish I could report that they are super glam….but they are not!!!  Instead she wanted close ups of my body parts which looked the most veiny – charming.

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My Elbow!

Hubby managed the delayed visit to his parents, and whilst he was away I enjoyed reading and sharing a huge variety of blog posts.  This is just a small assortment varying from favourite books, to beauty products to a yummy recipe for dairy free ice cream.  Two that really stand out, and are poles apart, are Tania’s about her need for a Smartdrive for her wheelchair (I am slightly biased as we share the same condition) and The Bryntin Project’s plea to us all to realise the harm our birthday balloons are doing.

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So grab a cuppa and take a break whilst you dive into some fab blog reads.  Please comment, like and share!

http://www.whentaniatalks.com/fundraising-for-a-smartdrive/

https://croneconfidence.com/2018/01/06/first-world-blessings-2/

https://www.themerrymomma.com/2018/01/top-10-favorite-books-2017/

http://countingmyspoons.com/2018/01/ten-tips-combating-chronic-pain-winter/

http://chronicallyhopeful.com/first-outing-5-months/

http://littlemissmelanie.com/2018/01/07/favourite-beauty-products-of-2017/#utm_source=rss&utm_medium=rss&utm_campaign=favourite-beauty-products-of-2017

http://www.makeitbakeitfakeit.com/2018/01/the-most-amazing-dairy-free-mango-ice.html

http://www.corter.co/2018/01/the-way-ill-slay-in-2018.html

https://brainsandbodiesblog.com/2017/11/10/5-ways-to-have-a-productive-day-with-a-chronic-illness/

https://thebryntinproject.wordpress.com/2018/01/07/birthday-littering/

Have a great week,

Claire x

 

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I Am Here

I am here,

Do you still see me?

My heart is beating

Within my broken shell.

A mind is playing

The words of a lifetime

The will is surviving

To write a legacy well.SONY DSC

 

Am I succeeding?

Am I still growing?

In spite of a body

That creaks with pain.

My mind is creating

My will is still flowing

To harness experience

For a generation to gain.

 

I may be unseen

Not always present,

 

But can you still see me?

Here I remain.

 

Claire Saul

School Runs and Shopping Trolleys

My Monday Motivation to remind myself and others that no matter what, I can still make a difference!

Nobody said it would be easy – cake, life and curveballs

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Tonight is the 3rd birthday for The Book Club on Facebook – a fantastic group that I belong to full of authors, reviewers and readers.  Basically book people.  Yours truly has been making the birthday cake over the last few days and with a shoulder slipping in and out of socket it has been no easy task!

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Of course I have been too ambitious and I always start with an image of the finished cake, and then am disappointed in my results.  This has taken me longer not just due to my lack of a right arm – yes, I am right handed – but also down to the design and needing to let it harden in phases.  More of that later.  It has made me draw parallels with expectations of everyday life – don’t worry I’m not going to get too deep here.

But how often do we set out with expectations of how an area of life will turn out only to be disappointed.  So many people talk about their life plans from university to careers to marriage to children etc, etc.  But life has this habit of throwing in a few surprises and curve balls along the way doesn’t it? Isn’t this true for everyone?

Life with illness – be it chronic, acute, mental or physical – is something few of us can anticipate and much less embrace.  When I set off to nursing college as an eager 18 year old, I never dreamed that life would turn out like it has.  But then I guess it is a good thing because with each setback it is so important to be able to get back up, brush yourself off and continue.  If I had known when I had major back surgery at 21 that by 38 I would be heading for medical retirement, I might not have tried so hard to get myself back on my feet and back to work.  I loved those years nursing and I think that I was a pretty good nurse.  If I had known my genetic diagnosis – Ehlers Danlos Syndrome – and all that it covers aged in my teens, I might not taken up rowing and then gone on to nursing – probably the worst things I could have done but great experiences.

But then some of the curve balls can be pleasant surprises.  For me probably the biggest surprise was falling pregnant when I had been told I would never conceive naturally.  The tiredness, anaemia and nausea/sickness turned into a pregnancy when my GP carried out a PAP smear and informed my cervix was blue – a classic sign of a 13 week pregnancy apparently!  I was taking HRT and had gone for a check up ahead of a new job – but came out as a mummy.  A huge curve ball, not in the game plan but fantastic (although I wasn’t saying that half an hour ago when said babe, 21 years on, created havoc in the kitchen with a pot of pasta on the stove!).

Being Mum

The surprise. aged 4 weeks….now a cover board on Pinterest!

I suppose what I am getting at is the importance to strive hard but also to accept that not everything will go exactly to plan…..and this is ok.  For me I’ve been thinking about the periods of needing to let my cake set before I can continue with it – living with chronic illness has these periods when fatigue hits and symptoms flare equalling a need to rest and pace.  Wait for the cake to set!  Don’t rush it, don’t take short cuts because there will be some sort of pay back.  In my experience this is life – illness or not.

So back to the cake….it is for a book club, so clever clogs here decided to make a stack of books.  The individual books were made – one chocolate, one Victoria sponge and one lemon – and then the icing covers started.  This is where the patience and waiting was required and I’m not good at this part!  Then last night came the final assembly of the three tier cake to form a stack of books……it wasn’t completely straight forward, there have been a couple of corners broken, some scaffolding was required and this morning some patch were required to plaster a few stress fractures.  The result is a stack of books that are not altogether straight and definitely look like they have been well loved if a little dog eared.  Not so different to life, I’d say – starting with high expectations (nothing wrong with that and I am not saying they should be lowered), hitting a few bumps along the way, the odd curve ball and maybe the finished product not quite as expected, but nevertheless created and to be made the best of.  Not always easy to do or accept, but as the infamous anonymous quote says “Nobody said it would be easy, they just promised it would be worth it..”

Will let you know if this holds for the cake when it is tasted, as for comparisons with life….what do you think?

Nobody said....

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#Blog Tour – How I Motivated Myself to Succeed by Shelley Wilson

Dream It, Live It, Become It

Disclaimer: I was fortunate to be given an ARC by the author in exchange for a fair and honest review. All opinions are my own.

Blog Tour Banner for Shelley Wilson HIMMTS

I first met Shelley Wilson through the blogger community online and was soon following her on Twitter and her blog.  We also belong to a great Facebook group of bloggers who support and promote each other.  Now I must be honest and tell you that I haven’t read Shelley’s first book – yet – “How I Changed My Life in a Year”, but I do know that it was the precursor to this book and that she does refer to it throughout as one book describes the other.  So to put it simply we have “How I motivated myself to Succeed” in my challenge of “How I Changed My Life in a Year”.

Normally I would give a self-help book a wide berth, but I was intrigued by the concept of “How I Motivated Myself to Succeed” and wondered how it could apply to me.  My regular readers will know that my life has changed drastically due to health issues, and as a result I have started to write and connect with the chronic illness community.  I wondered if Shelley’s approach to motivation and success could be translated to something positive for those who are facing huge and often negative health issues.Motivation

This book is easy to read.  There are no difficult words, trendy psychobabble phrases or deep psychological discussions to dissect.  It really does do what it says on the tin – that is to describe Shelley’s personal journey to motivate herself to succeed.  I love the fact that she describes, in brutally honest detail, every little factor affecting her setting and then achieving her goals.  She describes how she learns – as a visual learner – and how preparing vision boards helps her to figure out what it is she wants to achieve.  But Shelley is not prescriptive in her approach and suggests that the reader may find other tools more helpful – she recognises that one size does not fit all.

Many of you will already be familiar with the use of acronyms in the workplace to motivate individuals, or within team building exercises or at a strategic planning level.  Shelley incorporates several acronyms – such as SMART (Specific, Measurable, Achievable, Realistic, Timely) FEAR (False Evidence Appearing Real) DAD(Decision Action Determination) – along the way but does so in a very familiar and easy format that explains exactly how they can be used by ordinary people in day to day life.  I think that this is what I like most about Shelley’s book and her style of writing – she explains exactly how she personally set goals, undertook tasks and arranged her life to achieve her goals.  Now these goals may have included a mammoth one of writing a book, but equally she includes writing a meal plan for her family and encouraging her teens to tick of items on the household task list!

Shelley is a single mum who has run a holistic health business, but has also experienced her own major health problems which forced her to close her business.  I felt immediately drawn to this normal woman, living an ordinary life and I can identify with her.  Her descriptions of home and the teens made me laugh out loud – this lady knows how I live. If I can recognise myself and my friends in this writer, then I can definitely identify with her writing and her suggestions.

As someone who has been disabled with health problems, I accept that I am not going to set a goal to storm the workplace and become a tycoon as my body physically will not allow this.  But Shelley’s frank discussion about organisation, self-care and changing habits can be easily utilised by someone like me to both make the best of my situation, and to realise that I can still achieve something and flourish.  I love her section on decluttering – this covers both mind, surroundings (in my case home) and social media.  She writes about decluttering your Facebook & Twitter….it would never have occurred to me.

Whilst Shelley has written parts of this book with the twelve months from her first book in mind, and thus sets challenges across the year, she stresses, and I believe, that it is possible to use some of the tools over a shorter timescale or indeed for the longer term.  We talk about “pacing” in the chronic illness community and being “short on spoons”, and the second half of this book has so many good suggestions to plan and incorporate these needs with the goal to a success beyond our illness/limitations.  This might be writing a blog, visiting a friend or running an on line shop.

So before my review for this Blog Tour turns into a book, my conclusions!  If you are interested in reading a down to earth, personal experience of motivation and goal setting in order to succeed and achieve – then this is the book for you.  Nothing fancy, no psychobabble, pure sensible advice that we ordinary folk can use to flourish.

A fantastic four stars – please read Shelley’s guest post below!

Book review & blog tour

 

Guest Post From the Author, Shelley Wilson (@ShelleyWilson72) #BlogTour

 When my wonderful host, Claire, offered a spot on her blog for my book tour I was delighted. I’m ashamed to say that after writing a series of guest posts (seventeen in total!) my typing fingers are beginning to look like gnarled claws! Before they give out on my completely I wanted to take this opportunity to find just the right excerpt from my new release for Claire’s audience. I hope you like it.

 

Taken from How I Motivated Myself to Succeed:

When I began running my Motivate Me workshops, I used to leave a handout on all the chairs for the attendees to take away with them. It was my interpretation of motivation. I’d like to share this with you in the hope it resonates with what you are planning for yourself.

M = Mindfulness

O = Optimism

T = Trusting in the Process

I = Inner Wisdom

V = Validation

A = Activating Your Dreams

T = Thinking Outside the Box

E = Empowering Yourself

 

M is for being mindful and learning to be in the now. Slowing down and becoming aware of what your mind/body is telling you enables you to discover new opportunities and experiences. Try a five-minute meditation every morning or night.

O is for optimism. Start to look at your life through the eyes of a child, with innocence. See the simple things that can make a profound difference to your day/week/month, such as a smile, holding a door open, or paying someone a compliment. All these acts add to our well of optimism.

T is for trust. I’m not a life coach or a neuroscientist; I’m a single mum who turned her life around when she hit rock bottom. I had to trust that the lessons I’d learned were there for a reason. I believed that the universe could deliver, and more importantly, I began to trust myself that I could survive, make changes, and be the person I wanted to be.

I is for inner wisdom. You have the ability to change bad habits, to find happiness, and to love who you are. Sometimes you may forget that your inner wisdom exists. It’s always there, just beneath the surface, and it’s ready to provide you with the answers you long for. Using oracle cards can be the perfect way to tap into your inner wisdom.

V is for validation. For every issue you face, or problem you think you can’t handle, there are a hundred other women/men who have been through this and have come out at the other end. You can use their wisdom and experiences as a case study. Let those who have walked this path before you be a mentor, or join a support network, or social networking group. These are all ways to validate that you can get through anything. Don’t be afraid to ask for help when you need it. You are not alone.

A is for activating your dreams. These are the action points you take to make things happen. By taking that first step, you begin a chain reaction that pulls your dream towards you and activates those wishes into becoming a reality. Without this stage you become stuck.

T is for thinking outside the box. Learning to change the way you think can have a profound impact on your life. When you are worried about an issue, stop for a moment and put yourself in the shoes of someone you admire, a strong person who never seems to be fazed by anything – what would they do? Come at your problems and fears from an alternative direction.

E is for empowerment. In today’s society, you have the opportunity to sign up to be a part of powerful social communities both online and in real life. A group of friends with similar interests and beliefs can be invaluable. At home, you may be part of a networking group or a slimming club; perhaps you’re a member of the Women’s Institute, a book club, or a regular coffee morning event. All of these groups empower you. Being around like-minded people, meeting new friends, and sharing that positive energy will feed your motivation to succeed, and will grow your desire to be the best you can be.

If we think about our resolutions, goals, or projects as one big jigsaw, then by collecting all the pieces and slotting them together we achieve success.

This was the final spot on my blog tour for How I Motivated Myself to Succeed, available now in paperback and eBook. Huge thanks to Claire, for allowing me to invade her beautiful blog and share the book love. I hope you enjoyed a brief glimpse into my book world.

 

If you would like to read more then take a look at her new release, How I Motivated Myself to Succeed, out now in paperback and eBook, and packed full of information on self-care, freeing yourself from fear, organising your life, and much more.

Amazon UK

Amazon US

Find out more about Shelley on her author blog www.shelleywilsonauthor.com or via her personal development blog http://www.motivatemenow.co.uk.

 

She is also on Twitter,  Facebook and Instagram

 

Author Bio:

SONY DSCShelley is a multi-genre author of non-fiction self-help and young adult fantasy fiction. Her latest release, How I Motivated Myself to Succeed is being dubbed as the sequel-that’s-not-a-sequel to her bestselling book, How I Changed My Life in a Year. She writes a personal development blog (www.motivatemenow.co.uk) as well as an author blog (www.shelleywilsonauthor.com) where she shares book reviews, author interviews, and random musings about writing. Shelley was thrilled to win the Most Inspirational Blogger Award at the Bloggers Bash in 2016, and to scoop second place in the same category in 2017. She is a single mum to three teenagers and a black cat, loves pizza, vampires, and The Walking Dead, and has a slight obsession with list writing.

 

What are Dysautonomia and POTS?

Hannah on Sunshine and Spoons blog has written this post about Dysautonomia and POTS (postural orthostatic tachycardia syndrome).

She recently did a straw poll on a facebook group that we belong to and very few people had any idea what this medical term means.  I knew because I have it…..but had never come across the term in my own medical career.  Some of you will have read how my symptoms have been particularly bad recently, but I am now able to stand upright again!!

Please read the whole piece and share in order to help us spread awareness!

What are Dysautonomia and POTS?

What are Dysautonomia and POTS-

Did you know that October is Dysautonomia Awareness Month?

Let me back that up a little….do you know what dysautonomia is?

If you said no, you’re not alone.  Most people have never even heard of it.  I didn’t know what it was either until I was diagnosed with it.  I have Postural Orthostatic Tachycardia Syndrome or POTS which is one of the autonomic disorders that falls under the umbrella term of dysautonomia.  Other types include Neurocardiogenic Syncope or NCS and Multiple System Atrophy or MSA.

Despite the fact that many people have never heard of dysautonomia, it’s not rare.  It’s estimated that over 70 million people around the world have it in one form or another.  Often, it’s a secondary condition to another disease or disorder such as diabetes, Ehlers Danlos Syndrome, Multiple Sclerosis, Lupus, Celiac Disease, arthritis, and more   The most severe cases can result in death.

What is POTS?
Your autonomic nervous system regulates different functions throughout your body such as your heart, digestion, temperature, blood pressure, etc.  People with an autonomic disorder such as POTS have issues regulating those things.

 

To read the whole post visit Sunshine and Spoons 

You will also find great links to Hannah’s Sunshine and Spoons Shop

POTSWarrior5

 

Fainting for my Motability Chariot

Fainting in the car showroom wasn’t something that I had thought would be a part of my week!  We had a phone call to say that my Motability car would be arriving and it has felt like the whole process has happened so fast.  Not so long ago I was still convinced that I would be deemed too “fit” to qualify.Fainting for my Motability Chariot (2)

 

It is a shame really that the “passing out” wasn’t due to excitement, but rather a POTSIE dysautonomic response!  My symptoms are always worse in the morning from the time I get up to mid morning – my cardiologist said having laid down all night (sometimes) the body is then put under immense stress from gravity and “baggy” blood vessels to keep circulating oxygenated blood to the whole body on standing. So the system concentrates on the major organs in the abdomen, blood rushes down away from the head, pools in the hands & feet – and I feel extremely dizzy or faint. Yes, out cold! So a 9.30 appointment was never going to be great – but add in stormy weather, bright fluorescent lighting and a hot showroom and Bingo! you have the makings of a “dysautonomic nervous system” episode. Sounds grander than it feels!!

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Image from a range of products available at http://stickmancommunications.co.uk/

Anyway, the salesman came back to his desk to find me with my head back, shoes off, feet up, grey and clammy. Not my best look…..but precisely the reason that I have been awarded the enhanced rate benefit. Of course add in the dislocations, pain etc…..all adds up to me getting a brand new car and not being able to drive it! So disappointing. My mum and hubby are the named drivers on the inclusive insurance – no, the student engineer isn’t old enough, much to his disgust – and I I grudgingly accept that passing out behind the wheel or pulling an arm out of socket whilst turning the steering wheel, probably isn’t the safest way to get from A to B.

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Grey really is not my best look! Post faint…

Busman’s holiday for hubby taking a car handover and the student engineer had the bluetooth wireless phone/stereo system programmed before we had even started the engine….great except he has no understanding of why I can’t pick it up in the same “on the spectrum” way that he does.  The ride feels smoother and hopefully this will be a huge benefit for my back pain, but I haven’t been well enough to go back in it this week.  Female hormones always exacerbate my symptoms and I have had several days when I have been unable to sit upright – another post for another time!  But I’m upright today and so writing a very speedy post having missed out all week.

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My Chariot!

Thank you Motability for a fantastic scheme that has allowed me to have a car to house me – comfortably I hope – my wheelchair, shopping and a dog!

Monday Magic – Inspiring Blogs for You!

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I am shattered today, PainPals and those pals not in pain!  Saturday was the day for the big reunion – that is 3 decades – 30 years since we left school.  I’m not quite sure which timescale sounds better!  How did that time pass so quickly? I remember my grandma telling me to value every day as the older you get the faster the time flies…but as a youngster I never took any notice.  Put together a group of people, some who haven’t seen each other for said 30 years, but who grew up together during those important teenage years….and it will feel like yesterday.  Similar theme to last week!

I was worried on Saturday morning for 2 reasons – firstly would anyone turn up and secondly I was feeling extremely POTSIE with the shakes and snow vision and forgot to take my midodrine pills with mine!  But on the up side about 20 people turned up over the course of the day/evening….and whilst I spent the first part of the day in my wheelchair the adrenalin seemed to kick in and I was able to stand for periods in the pub, sent out for my pills (good old Duncan) and was still in the pub for dinner in the evening.  It is amazing how you can push yourself when you need to and when you want to.  I find that it is about picking the occasions wisely to use your spoons, as it isn’t possible to live like this every day when a chronic illness is your constant companion.

The feedback has been fantastic – we had a great day renewing old friendships, reminiscing (being thrown out of choir, altering the wording on the carol service leaflet, sending Valentine cards, hockey, rowing, detentions for pranks…..the teachers) but also learning how everyone’s lives have moved on.  We had doctors, a headmistress, lawyers, an acupuncturist, a sports coach, a teacher, a horticulturist, an entrepreneur….the list goes on. Families have grown..and shrunk. Life goes on!

Class of 87 pic

Class of 87

So whilst I have had to sit back due to a self imposed inability to stand, I have found some new blog posts for you.  This week we have blogging posts, a yummy looking recipe site, a musical tribute and the feelings encountered when a pet is found to be very sick.  I am delighted to report that my list of blogs I have shared here has grown to 230 and many of these have been featured several times.  What a wonderful community you are!

Hope you have a cuppa in your hand, an hour to sit back and the enthusiasm to enjoy and explore these fantastic blogs.

https://www.disabledgo.com/blog/2017/09/activists-plan-day-long-musical-tribute-to-radical-and-brilliant-robert-dellar/#.Wb7PB7KGPIU

http://www.youcanalwaysstartnow.com/2017/09/11/is-the-universe-pushing-your-buttons-deal-with-it/

http://www.blessingmanifesting.com/2017/09/self-care-awareness-month.html/

http://riverandquill.com/2017/09/identity-theft.html/

https://beinglydia.com/2017/09/17/what-finding-out-my-dog-is-sick-has-taught-me/

http://www.livingnaturaltoday.com/2017/09/heart-goes-texas/

http://raisingzebras.weebly.com/blog/brain-mri-and-the-wheelchair-arrives

https://starbrightcooking.com/21-tips-classic-comfort-cooking/

http://www.strugglingwithserendipity.com/blog/accepting-harvard

http://www.angiecruise.com/what-i-learned-in-my-first-year-of-blogging/

Please, please share, pin, like, comment to let our bloggers know that you have enjoyed and value their writing. Have a lovely week!

Claire x

 

Monday Magic – Inspiring Blogs for You!

Another week, time for another Magic Monday!  The events in our household really pale into insignificance compared to the natural disasters taking over so many parts of America at the moment.  The majority of us, thankfully, will never have to encounter the devastation that these natural phenomena wreak, but I want to send support and good wishes to all our American blogging pals who are living through this.  There is an additional blog post this week that my pal Cheryl at Chronic Mom blog wrote last week about what no one tells you about surviving a natural disaster with chronic illness – but I think that there are  probably aspects that apply to everyone!

 

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We had an unexpected trip over the weekend – hence no blog post – and as it was a long trip for this chronic bird to make in a day, we paid an impromptu visit to old friends to beg a bed for the night.  Panic not other old friends, we gave them 24 hours notice!!  We haven’t seen each other for about 5 years, yet we have known each other for nearly 30 years – we “girls” did our nurse training together and the blokes have always been hifi and gadget buddies. Not forgetting that this fellow hifi nut was hubby’s best man 25 years ago!  With just a few precious friendships the years roll away and it is possible to appreciate the long and deep connections that you have with each other. As two couples, we have had our fair share of traumas over the past couple of years – we decided we should form the “Happy Pill” brigade as we must have shares in antidepressant companies between us – but we have survived and it is testament to our friendship that we can come together as if it was yesterday!  How many people in your life can you call on and truly rely upon to be there for you no matter what?  Quick shout out here for our fab friends’ facebook page – check it out (chocolate brownies to die for) Keeley House Bakery 

 

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I have found some great blog reads for you this week including  becoming a real mermaid (just read it!), a fab book review, and using your imagination when putting pen to paper.  There is also a piece about the scandal currently coming to light about the use of mesh implants in surgical procedures.  So grab a cuppa, put your feet up and enjoy some fabulous writing in these inspiring blog posts!

http://www.chronicmom.com/2017/09/what-no-one-tells-you-about-surviving-a-natural-disaster-with-a-chronic-illness.html/

http://www.nataliemabbott.com/quitting-everything-to-be-a-mermaid/

http://moonglotexas.com/2017/09/10/book-review-death-at-thorburn-by-julianna-deering/

https://1stimeblogger1232.blogspot.co.uk/2017/09/every-scar-tells-story.html

http://www.meaction.net/2017/09/01/reading-matters-lets-hear-it/

https://dystoniaandme.com/2017/09/10/5th-blog-birthday/

http://www.amundanelife.co.uk/2017/09/anxiety-is-not-trend.html

http://invisiblyme.com/2017/09/05/the-mesh-scandal/

https://globehousesitterx2.wordpress.com/2017/09/10/a-pen-paper-and-my-imagination/

https://mindovermetablog.wordpress.com/2017/09/06/how-to-deal-with-toxic-people/

https://ginlemonade.wordpress.com/2017/08/30/when-the-accessible-hotel-room-is-inaccessible/

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Please share this post and make a blogger’s day with a like, share, pin or comment….it makes it all worthwhile.

Have a great week!

Claire x

 

 

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.

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