My Guest Post “Claire’s Story” on Young, Sick & Invisible

To start the new year I am honoured to have had my health story featured on the blog “Young, Sick and Invisible”.  I do know, painpals, that I don’t strictly fall into the group “young”, but Bethany who writes the blog does and is a pretty inspirational young lady, so please have a look at some of her posts and her regular guest blogger post.

guest post claire's story pin

So if you feel like reading a bit more about my Ehlers Danlos Syndrome and chronic pain – and to see some very glamorous pictures – have a look here where I answer the following:

1. Who are you? Name. Engaged/ Married Any children/grandchildren? Give as much or as little information as you feel comfortable with.
2. What Chronic illness/illness’s is it you have ..? With a brief description on what it is/what they are
3. What did you love doing before you was diagnosed ..?
4. Are you still able to work (explain briefly what you do and if you’ve have to lower hours because of the illness/illness’s)
5. When did you first develop the chronic illness/illness’s (or think they started – what were the beginning signs)
6. Was the diagnosis easy or not ..? – also explain how you was diagnosed and any struggle you had
7. Did you search the internet looking for help ..?
8. Where do you flare ..? – describe a flare
9. Try and describe the pain (maybe even using a metaphor like (Raynauds is like being sunk deep into ice numerous times a day)
10. How long do you flare and how do they affect you ..?
11. How do you manage/cope with the flares ..?
12. What are your main triggers ..?
13. What medicines/supplements do you take ..? (Briefly explain ones you have tried but don’t/do help)
14. What is your biggest tip for those who suffer from the same illness/illness’s as you ..?
15. How has your illness/illness’s impacted your life ..? (Positively and negatively)
16. What has it stopped you doing ..?
17. How has it impacted on your friendships/relationships ..? (If it hasn’t then don’t worry about this question)
18. How do you stay positive ..? – what has your illness/illness’s allowed you to do or become (positive) for example have you become more understanding ..? You might have stopped work but learnt to spread awareness ..?
19. What is your hope for the future ..?

Guest Post: ‘Claire’s Story.’

January 1, 2019

Claire S.

Hi all, I’m Claire Saul, married to Duncan, 3 children aged 22 (boy),19 (boy), 16 (girl)

I have Ehlers Danlos Syndrome with POTS (postural orthostatic tachycardia syndrome) chronic pain & nerve root damage, migraine, gut motility problems, Raynauds

The EDS is a genetic condition of the Connective tissue – my body produces faulty collagen – so it can affect any part of the body that contains connective tissue.  Normal connective tissue is like elastic, EDS connective tissue is more like chewing gum. I have regular dislocations, particularly my hips and shoulders – I started dislocating aged about 8.

POTS is condition that affects the circulation on changes in movement, temperature.  When I stand up my blood pressure drops, meaning my heart has to beat quicker and harder to get blood round the body – but the circulation to the brain is reduced, causing me to pass out!  This can happen when I stand up, get out of the shower or when the weather is hot/sunny. My hands and feet turn purple as blood pools in them.

Before I was diagnosed I loved my job as a palliative care nurse, I loved socialising  & hosting dinner parties – dancing and going to yoga classes! I am not able to work – I was a palliative care nurse, but due to the chronic back and leg pain was medically retired due to disability.

EDS is genetic so I had signs from an early age – “knocked knees”, flat feet, dislocations, poor coordination, pain, headaches (prob early migraines) all before age 10, then during my teens dislocations increased, def migraines, fatigue, circulation probs (now realise POTS), Raynauds and “growing pains” IBS. Aged 21 a disc ruptured in my back and went into cauda equina (foot drop, severe pain, bowels and bladder not functioning) – had first back surgery. Chronic back problems – started here with nerve root damage

My shoulder pain was increasing and preventing me from doing some normal activities, so my GP referred me to the Hypermobility clinic at UCLH (Prof Graham’s clinic).  I was lucky that then a secondary referral from a GP was accepted – it has changed now and the patient has to be referred from another hospital consultant (tertiary).

The actual diagnosis was easy as I fulfilled so many criteria and my mum had gone with me so was able to give family history.  Although she isn’t formerly diagnosed, we can see that both she and my grandma when she was alive have symptoms.  I was given a diagnosis very quickly,  but no support or follow up – was told that my management needed to be local.

But the time it took to join the dots of various illnesses was not easy. I was finally diagnosed aged 42

To read the rest of my answers to Bethany’s questions visit Young, Sick & Invisible here!

Thank you so much to Bethany for having me as a guest blogger!

 

Monday Magic – Inspiring Blogs for You!

monday magic 7th jan

Today is the last day of the school holidays in our house and the last week of the uni holidays.  So whilst the lovely girl prepares to return to school (in not the greatest of humour it has to be said but with a new haircut – 4 inches of her lovely blonde hair cut off!), the politics student is allegedly revising for exams and the young engineer has become an employer today.  I can’t quite believe that our little boy, the young adult who acts so daft at home, is now an IT entrepreneur with a business partner and an employee….I guess all parents must feel this at some time.

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Photo by Pixabay on Pexels.com

For our house, a sign that the new year is well and truly under way is when we reach the birthday of my best friend’s daughter on the 10th and hubby’s birthday on 11th January.  We went to the Pizza Express part of the 9th birthday party yesterday, deciding to skip the ice skating at Hampton Court Palace to avoid  the cold – and yours truly was the “best auntie ever” for the cake. This year I was tasked with “A Series of Unfortunate Events” for the theme, and fortunately my mob have all read the books and watched some of the Netflix show.  My lovely girl helped with painting the decorations on the sides and we were very pleased with our efforts, particularly when all the party guests recognised the characters.  This year is a big one for hubby (and me too later in the year – yes, 21 again) but more of that next week!

I wrote a long post for the Versatile blogger award yesterday and tagged various bloggers (who I thought hadn’t been nominated before) so I’m sharing one of each of their posts with you today. So grab a cuppa, relax and enjoy!

https://ginlemonade.com/2019/01/06/disabled-parenting-problems-this-might-become-a-series/

https://fancypaperblog.com/2018/12/01/the-band-when-theatre-causes-time-travel/

https://mydailyjournalonline.com/my-2018-journal-expectations-vs-reality/

https://debs-world.com/2018/04/08/what-ive-learnt-from-surviving-a-school-trip-that-went-terribly-wrong/

https://www.awalkandalark.com/exploring-hyogo-kinosaki-onsen/

https://www.ajourneythroughthefog.co.uk/2019/01/the-personal-hygiene-challenges-i-face-living-with-me-cfs/

https://www.brainlesionandme.com/embracing-the-warrior-inside/

https://mymedmusings.com/2019/01/07/little-things-do-matter-especially-when-living-with-chronic-illness/

https://trend-able.com/roll-on-face-masks/

https://www.sizzlingtowardssixty.com.au/new-year-evolution-not-resolutions/

https://kerrylifeandloves.com/2019/01/02/my-european-travel-wish-list-2019-edit/

https://pamelajessen.com/2019/01/05/chronic-pain-post-holiday-blues/

https://trippingthroughtreacle.com/chronically-strong-music-to-give-you-strength/

https://libertyonthelighterside.com/why-is-world-environment-day-important/

https://jaipurthrumylens.com/2018/12/08/jaipur-sunrise-winters-nahargarh-fort/

Have a great week,

Claire x

 

Farewell to Me and Hello to Myself – Changes with Chronic Illness

I’ve been struggling to write, to take part in blog shares or blog parties. I don’t know why….brain fog, the constant nagging pain in a near permanent dislocated shoulder, stress from an adolescent, lack of pacing, all manner of things could be blamed….I just don’t really know.

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Farewell to Me

Hubby was clearing out earlier this week and came across some DVDs that he and my brother compiled years ago from my parent’s camcorder.  You must remember the black boxes carried by all self respecting tourists about 15 years ago?  Unlike the traditional camera with a film to be exposed and turned into photographs, the stream of moving images needed to be converted from a small cassette into a format suitable to be viewed on a home system – usually a DVD player by this time!  We had forgotten we even had them but, when the writing refused to flow, I have spent several afternoons watching short clips from 12 – 20 years ago.

 

A wonderful trip down memory lane from the eldest being an inquisitive toddler – did you really let him use let hammer and hit himself, Dad/Grandad?  – to holidays abroad with all three kids, to Christmases where departed family are still very much alive and laughing alongside the rest of us.  For me it was my young children that I was watching closely and shed a few tears when my lovely Grandad appeared with the then 4 year old politics student discussing a Ninja turtle gift for Christmas 2003.

But hubby told me today that he struggled to view the clips as he was watching me!  Why?! I wondered –  what was so interesting about me being mum….pregnant, with new babe and toddler, unwrapping presents, pushing a buggy, going to work. Hmmmm – that was it!  He saw me – how I was, always on the go, winging it most of the time, particularly around my back problems, pain and EDS.  Walking, running, playing, dancing, swimming, working.

Claire & Lucy

A particularly poignant moment was hearing our lovely girl’s voice, aged 2, telling Mummy and Daddy to cuddle as she zoomed the camcorder in on us – with a little help from her brother.  On hugging a little voice shouted out “Kiss!!” – we were on holiday in France and this was our last holiday abroad as a family as chronic pain was soon to strike.

Whilst I had not really seen myself, much less watched myself (who likes watching and hearing themselves?), hubby saw the person I was and remembered the person I became.  The woman turning 40, riddled with pain and opiates, puffed up with drug weight gain and lunging into reactive depression.  The woman struggling to be a wife and mother.  Sometimes it is easy to forget that this journey with chronic illness is not ours alone.  Our nearest and dearest live it with us, the good with the bad, the happy with the sad.

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The Moonwalk

When I mentioned her dad’s comments to the lovely girl, I did feel sad that her answer was that yes, she noticed it too as she can’t remember me before my symptoms took over and my general health deteriorated.  The mum on the film looks like me, sounds like me but is almost a stranger.  Or is she?

Hubby had the final say by reminding us all that it is possible to move beyond those awful middle years.  He says that I am me again!  It sounds a bit dramatic doesn’t it?! Accepting my situation, being pushed to come off the regular opiates in order to have a spinal cord stimulator and keeping as healthy as possible(!) has been transforming.

Whilst I will never be that thirty something who seemed to lose so much almost overnight as she turned 40, now as I look toward turning 50, I think that I can say that I am ME again.  I look in the mirror and as I look past the grey hair, the lack of sleep, the metal spine, the splints and mobility aids, I feel like myself and so I see MY reflection once more.

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Photo by Andre Mouton on Pexels.com

 

 

 

 

Blog Tour and Book Review – Chasing Petalouthes, The Gift Saga by Effie Kammenou #LoveBooksGroupTours

I am delighted to be part of the Blog Tour for the final book in The Gift Saga trilogy Chasing Petalouthes.

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Chasing Petalouthes – butterflies – is the final book in this wonderful family saga following the generations of Greek families as they settle in New York.  In this chapter, the younger generation – third generation – are followed through teens, adolescence and young adulthood.

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Evvie, daughter of Sophia,  has experienced more tragedy than a young girl should ever endure, having lost both her father and a most beloved grandmother at a young age. Her rebellious ways are her only defense to mask the ever-present pain in her heart. Closing herself off emotionally, Evvie enters college life with a determination to follow her chosen path alone.  She might be a talented young dancer, like her mother, but her love for the family vineyard is strong and she discovers just how much she wants this life on a visit to France.  Her determination to work and grow her family business is tested over these tender years as relationships develop and difficult choices must be made.  She also begins to understand her Greek routes, the legacy of the soil and vines that is within her blood, during a visit to her great grandmother, Yiayia Sophia in Athens.

During this time Evvie remains resolute that she will not allow her emotions to sway her – she will not allow her heart to open up to love.  Even when a trip to the Greek island Cephalonia, with Yiayia Sophia, seems to show her where her true happiness and future could lie, she denies herself and a certain young man who she has known since college.

Stella, Demi’s daughter, is two years Evvie’s junior and struggling at high school to “fit in”.  She has a crush on a fellow student, and whilst he is happy to take her to Prom and will stand up for her honour, he makes it clear that Stella is not the girl for him whilst they are growing up.  She is the sort of girl who needs a steady relationship – a happy ever after – he tells her, and he is not ready for this.  Whilst Stella appreciates his honesty, at 16 this is a harsh truth to hear and she experiences betrayal from a friend during this time.  Meanwhile it feels to Stella that her siblings and cousins are all talented and achieving their dreams, whilst she enters college and drifts from one course to another with no real puprose.

She is insecure, a little naive and has no idea just how attractive she is.  Stella is smitten when an older, handsome, worldly young man shows interest in her and she believes that she has found love. But as his behaviour becomes more and more controlling, Stella’s family and friends become concerned that Stella has fallen into an abusive relationship.  Will she accept the situation and the help on offer before something terrible happens? 

“Chasing Petalouthes (Chasing Butterflies) is the coming of age story of two flawed, young women who push their way out from the confines of the cocoons they’d built around themselves and discover how to soar.”

I am going to start by saying what I always do…..please read the first two books in the series and set on a journey with these characters.  You might have read my reviews for Evanthia’s Gift and Waiting for Aegina and will already know how much I have enjoyed this series.  In fact I will go so far as to say that I feel emotionally invested in the characters.

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My greatest enjoyment from the trilogy has been the continuing story of the generations of women from two families and friends that become one : Anastacia, her daughter Sophia and granddaughter Evvie;  Soula, her daughter Demi and grandaughter Stella; close friends, the Honeyhill girls, and their children.  The roles of these strong leading women has been quite inspirational and I see the driving force of the family in the strong Greek woman, who loves to feed her family in my own great friend Evi.

This chapter of the story examines the adolescent years of the younger generation and the author shares the highs and the lows with brutal honesty.  Emotions run high as a teen/early twenty something and we have all experienced the intense joy and sadness that come with the smallest of experiences.  The young ladies in this tale are no different to any others and they feel intensely.  As a palliative care nurse in my previous life, I was particularly interested in Evvie and how the author dealt with her grief.  Something I learnt early in my nurse training (whilst losing many young men in our London taching hospital to Aids in the late 80s) is that there is no “right” way for grief, no timeline, no “one fit for all”.  Yes, there is the Kubler Ross stages of grief, but everyone is so different and Ms Kammenou depicts this beautifully with Evvie.

By the time she is a teen, this young lady has experienced major loss and in order to deal with this she has built an emotional wall around herself.  To the outside world her moods and strange wardrobe choices might seem like those of a “difficult, hormonal” teen, but they are so much more than this.  I applaud the author for her handling and eventual breakdown of Evvie’s grief,  the way in which she slowly realises that she cannot protect herself from the possibility of pain and loss – and in fact in the process may be denying herself love and joy.

Difficult topics are once again tackled in this family saga – suicide, depression and mental health, domestic abuse, death, bereavement.  Perhaps this list should also include falling in love, sexuality & sexual relationships, and the complexities of family life.  Both Stella and Evvie are great role models as they experience the highs and some extreme lows of growing up (no spoilers!), and both come out the other side as mature, more confident and happy young women.  I am not going to say that they have grown up – I’m not sure that we ever finish growing up and I believe that Yiayia Sophia shows us this in her observations of her life.

I could write so much more here, but I think the important thing is to say that I loved it just as much as the first tow books, and I really didn’t want it to end…..surely there must be another chapter waiting in the wings about young Cia, Ms Kammenou?  There are delicious recipes peppered throughout the book, including some French treats when Evvie is dancing in Paris – there is even a recipe for the delicious lemon chicken and potatoes that my own dear Evi makes.  But my kids say that I could never compete!

Five stars for this engrossing, beautifully written contemporary family saga.

Available from:

Amazon

About the Author

Effie Kammenou is a believer that it is never too late to chase your dreams, follow your heart or change your career. She is proof of that. At one time, long ago, she’d thought that, by her age, she would have had an Oscar in her hand after a successful career as an actor. Instead, she worked in the optical field for 40 years and is the proud mother of two accomplished young women.cover photo 2

Her debut novel, Evanthia’s Gift, is a women’s fiction multigenerational love story and family saga, influenced by her Greek heritage, and the many real life accounts that have been passed down. She continues to pick her father’s brain for stories of his family’s life in Lesvos, Greece, and their journey to America. Her interview with him was published in a nationally circulated magazine.

Evanthia’s Gift: Book One in The Gift Saga was a 2016 award finalist in the Readers Favorite Awards in the Women’s Fiction category.  Waiting for Aegina is Book Two in The Gift Saga and Chasing Petalouthes is Kammenou’s latest release, completing the series.

Effie Kammenou is a first generation Greek-American who lives on Long Island with her husband and two daughters. When she’s not writing, or posting recipes on her food blog, cheffieskitchen.wordpress.com, you can find her entertaining family and friends or traveling for ‘research.’

As an avid cook and baker, a skill she learned from watching her Athenian mother, she incorporated traditional Greek family recipes throughout the books.

She holds a Bachelor’s Degree in Theater Arts from Hofstra University.

Find Effie

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Unforeseen – Life’s Curve Balls – coming fast and furious

It has been one of those weeks where nothing has quite turned out as we thought it would – the culmination of some tricky events that have escalated over the summer.  I can’t write about them yet – they aren’t just mine to tell.  But the impact on the family is great and a dash up the motorway has left this body feeling more decrepit than ever.  Chronic pain is flaring and spiralling.  Emotions are flipping between tears of worry and screams of anger; a lack of sleep and a definite lack of concentration is overwhelming.

I am sorry to have missed Monday Magic yesterday.  This poem that I found by Patricia Grantham seems appropriate!

Lifes Curve Balls - Poem by Patricia Grantham

Monday Magic – Inspiring Blogs for You!

We are celebrating our final bank holiday weekend of the year and in true UK style it is raining!  The long, hot days of only a couple of weeks ago feel like a world away, whilst last night yours truly turned on the electric blanket and added a dressing gown to the bed clothes.  Now the fight will be on between husband and wife for changing to a warmer duvet (me) or sticking with the summer one (him).  I must look into these split weight duvets – have any of tried them? Anyway, the wife will win!!

Monday Magic - 27 aug

 

This week has felt a little surreal if I am honest with you.  The politics student called mid week to say that he could only sleep on his mate’s floor in Nottingham until Saturday – OK, so what do you expect me to do about it??  Well, my final exam isn’t until Tuesday……good old mum puts a shout out to a couple of Nottingham based school friends, but of course it is a BH weekend and guess what, my boy?!  A lot of people go away – and that is why my friends aren’t about but also why the B&B/hostels are all booked!!  He is fortunate that we found an Air BnB – affordable and in walking distance of uni; but arranging transport home was slightly trickier as he hadn’t told me his exam isn’t until 4.30 Tuesday afternoon.  But……with a bit of internet surfing, I was amazed to get him and his friend onto a coach on Tuesday evening, back to London for £15 for the two of them!  Bargain!!  It will probably cost as much to get back from London to home (30 mins on the train!).

Amidst the dramas of the “middle” child, came the exam results of the youngest – the lovely girl.  I did mention a little about this in yesterday’s post.  Needless to say it was mum here who didn’t sleep well the night before and had strange dreams – we knew she would have got the requirements for 6th form, bar a complete disaster, but as the exams have been new this year and she was taking a mixture of the new levels 1-9 and the old grades A*-G, anything was possible.  Thursday morning came, she got up and did her paper round, and I was awoken to squeals as she opened the email – oh my goodness!  I am not allowed to say any more, but if your follow me on twitter of facebook you will know that she didn’t need to worry about me posting her results and picture all over social media – the school did it!! (here!!)).  As I said I’m not allowed to say anything – but delight, surreal, shocked, unbelievable….you get the picture!!

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The young engineer has been a bit put out that his little sister beat him – in fact beat both her brothers – but secretly he is very proud.  In fact on Friday evening he and his partner were going to the theatre with the lovely girl and her friend (who did just as well) – and he took them out for dinner beforehand to celebrate.  Now this is a huge deal as he has always been the “tight” kid of the 3!!!

So moving on from the act of sibling love in my household to the first blog that I’m sharing with you this week – it comes from Rachna and she describes a beautiful festival that traditionally recognises and honours sibling love.  I particularly like the post on ClockWorkClouds that discussed the uses of certain words – how does using “should” rather than”would” change the feel of a situation?  I hope that you will also enjoy some culture with an artist’s exhibition, a book review, flash fiction story and do read the Trolls’ poem, it is funny!  There are also some life posts here too that would benefit everyone.

So grab a cuppa, put your feet up and enjoy some great blog posts!

https://www.rachnaparmar.com/2018/08/raksha-bandhan-a-beautiful-festival-of-sibling-love.html

https://clockworkclouds.wordpress.com/2018/08/27/5945/

https://bootsshoesandfashion.com/a-visit-to-the-orla-kiely-exhibition/poster_2500_1

http://zooloobookblog.co.uk/bookreview-her-final-hour-bookouture/

https://www.mollytotoro.com/2018/08/the-artists-way-for-midlife-vitality/

https://thedarknetizen.wordpress.com/2018/08/26/flash-fiction-the-inn/

http://allthatjazmin.com/mental-health/getting-a-late-autism-diagnosis/

https://teaandcakeforthesoul.wordpress.com/2018/08/27/beware-of-the-trolls-poems-from-simply-modern-life-by-claire-baldry-bookexcerpt/

simply-modern-life-poems-claire-baldry1

https://www.funasagran.co.uk/2018/08/5-essentials-to-improve-your-pets-life.html

https://www.sizzlingtowardssixty.com.au/5-ways-to-start-appreciating-yourself-start-thriving/

As always , please share some love for these bloggers!

Have a great week,

Claire x

 

 

 

Things I’ve learnt since being a mum #MothersDay #SundayBlogShare

How many UK mums woke up this morning to luke warm drinks and cold toast served up on a tray with a side of daffodils?  Happy Mother’s Day, Mummy!  No, my lot are beyond that – in fact only one of them is here and she had to be dragged out of her pit.  But we did have our 7 year old nephew staying and he was awake bright and early – Uncle Dunc’s job to play, watch Lego You tube videos and generally entertain.  So I was greeted with an enormous shout of “Happy Mother’s Day, but you’re my auntie” as I entered the kitchen.

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Being a Mum

I haven’t heard from either of the boys in person yet…they may just be emerging from their pits.  The student engineer went out with his boyfriend and his parents last night, and I did try to wangle an invite too but the thought of us turning up sent him a delicate shade of grey, tinged with an air of panic!  But….yesterday morning the doorbell went at some unearthly hour and a delivery arrived for me.  From the politics student…for Mother’s Day.  Wow!!! Very impressed with a lovely box of chocs – but what is with the note?!

Olly gift

All the talk of Mother’s Day on TV & radio this morning has got me thinking about some of the things I’ve learnt since being a mum….

  • Yes the love is unconditional and two way – until you find felt tip all over the walls, or the lovely 12 year old turns into a teen….hormones, smells, trainers, mouldy food, and you are “the worst mum in the world” – maybe a little doubt creeps in
  • There is no right way to do it – but there is your way (and believe me it will be different to everyone else’s!)
  • Parenting is bloody hard and no it doesn’t get easier….it just changes!  Some days you will long for the time that your offspring was portable and could be strapped in to a carrier, rather than this 6 foot something hulk looking down on you determined to do his own thing.
  • An appreciation for your own mum – I’m lucky as she is my biggest supporter, has my back and is my friend.  Hope I can say this about me and my girl too. 

  • Breastfeeding is not the most natural thing in the world for everyone.  Yes I did it people, but…..all 3 babes struggled to latch on (another design fault in my bodywork), I spent weeks walking round with cabbage leaves in my bra and got a fab dose of mastitis each time….twice with the lovely girl, was seen by every feeding counsellor under the sun and had a “let down” reflex that was so strong it even tuned in to passing lorries, leaving me with rivulets flowing down my shirt!!  And….I had enough milk to feed the entire post natal class,  I kid you not, even my midwife asked if I’d considered donating some (this was before the days of internet breast milk sales….can’t get my head round that).  Of course now I take full credit for their combined intelligence as being completely down to my super milk and my bloody mindedness (10 months for the boys, 6 for the girl)
  • Just because your gorgeous toddler eats everything, including his greens, doesn’t mean he will not turn into the fussy eater from hell!  And leaving him with the food in front of him or telling him you are not cooking anything else…well if he is strong willed and bloody minded (wonder where that comes from) he WILL go hungry! Even in his teens and twenties!
  • The playground can be even more competitive as a mum than as a child
  • You really can’t do it for them, no matter how hard you might try – be it walking, writing, revising, taking exams or joining the world of adults.
  • When this human you bore is hurt, physically or emotionally, it really can hurt you more than anything else – strange, but true!
  • They may only  call when they need something (money, a lift somewhere), but it is YOU that they call….
  • Kids are expensive – a whole post in its own right!
  • My reserves run so deep – be it patience, impatience, anger, frustration, love – and I can cope with so much more than I would ever have dreamt possible.  But I still feel like the same person I was at 22….

So I am raising a glass to all the Mums out there past, present and future….and to all of us kids, be we babes or grown ups, for being some Mum’s baby.

Scan 2

How time flies….about 11 years ago!

 

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Monday Magic – Happy New Year! Inspiring blogs to start 2018

Happy New Year, Pain Pals! Welcome to 2018….

Monday Magic - Inspiring Blogs for You!

I hope that you have all had a wonderful holiday season – I appreciate that for many of you this will have been hampered by health problems, for others it may be the first year since a bereavement, or just simply a difficult time – but we have to believe that there is always something positive, even out of negatives (hope my eldest is reading…..we call him Mr Glass half empty!).

I’m not going to do a look back at my year and bore you silly…..this week is probably enough.  Our week hasn’t gone exactly to plan – when does it ever? – with yours truly managing to fall off the sofa (I know, I know!) and putting out my shoulders, neck, ankle and hip in one foul swoop!! Of course this would be the night before we were due to travel to visit the in laws…..add hubby having a horrendous case of man flu (actually he has the most awful chesty cough and was banished to an empty child’s bed last night!) and the trip is off.  if you are reading, Dave and Wendy – I am so sorry! Kids are too as it meant any plans for New Year’s Eve parties in this house were ruined…..the teen girls due to gather decamped to another location and at the time of writing we have had no communications from the lovely girl! Plus one boy still old cold and snoring in bed here, having made it home.

Boxing Day

But two huge positives for me were managing a lovely family meal out on Boxing Day, and hosting the extended family the day after.  My brother’s family, the student engineer’s partner, and of course my lovely parents…..plus the drone that one very silly auntie bought her nephew for Christmas.  Well I didn’t think he would be flying it around my living room!!!

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I have put together a huge list of New Year blog posts for you from some of my blogging family…..many from the Big Up Your Blog community, others from Chronic Illness Bloggers.  There are reflections, good wishes, goals & resolutions, poetry and don’t miss Phil’s hilarious Predictions from a legit Psychic!  Plus the first is a great blogging invitation on Smorgasbord.  Sit back with a glass of something good (dry Jan can start tomorrow!) and enjoy.

https://smorgasbordinvitation.wordpress.com/2018/01/01/happy-new-year-and-the-start-of-the-2018-series-of-smorgasbord-posts-from-your-archives/

https://cristianmihai.net/2018/01/01/a-new-beginning/

https://www.linkedin.com/pulse/prepared-give-your-100-2018-jez-cartwright/?trackingId=o8g10gFzhm1TEUaBd7y6nQ%3D%3D

https://mashaellman.com/2017/12/30/my-wish-for-you-2018/

https://medicalmysterymusings.wordpress.com/2018/01/01/reflect-and-restart/

https://www.navigatingthestorms.com/fun-things/holidays/making-new-years-resolutions-first-do-this/

http://shesnotsobasic.com/new-years-affirmtaions/

https://therightdirections.wordpress.com/2017/12/26/2018/

http://www.theressomethingaboutkm.com/the-circle-of-knowledge-2017/

https://thephilfactor.com/2017/12/30/2018-predictions-from-a-legit-psychic/

https://blushandbrewsblog.wordpress.com/2017/12/29/faves-2017-book-edition/

http://sportfitnessjourney.com/running-resolutions-newyear/

https://brainlessblogger.net/2017/12/31/my-new-years-resolution-compassion/

https://mistybooks.wordpress.com/2016/12/31/resolutions-be-careful-what-you-wish-for/

http://supermomhacks.com/lessons-in-parenting/on-new-years-goals/

https://wheelescapades.com/2017/12/28/best-nine-of-2017/

https://suzie81speaks.com/2017/12/18/smoke-and-mirrors-how-to-avoid-hating-your-blog-in-2018/

https://www.midlifesmarts.com/celebrate-new-year-scotland-style/

https://illness-to-wellness.com/2017/12/28/preparing-for-the-new-year-pick-5/

https://vinzpoetry.wordpress.com/2018/01/01/new-year-better-be-nice/

Please be kind and share some love for these bloggers with likes, shares and comments!

Happy New Year! 

Claire x

Ode to Excess

My lovely friend Cathryn wrote this little ditty that we hope will amuse you all!

Ode to Excess (December 2017):

How many years have we said at this time
We’re not going crazy, just a few gifts are fine.
The kids have so much, they don’t need a thing
We’re lost for inspiration, the money does sting.

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Determined to stick to the rules that we’ve set
We proudly congratulate ourselves not to get
Handfulls of gifts from Poundland to fill
Stockings and boxes, a bitter sweet pill.

Yet here we are a week yet to go
We’re edging close and even had snow.
The doubt starts to niggle, we wrestle our minds
“maybe just one more” gift we can find.
One turns to two to three and to four
Then Amazon calling and banging our door.

Panic sets in, have we equalled the spending
Presents still coming, bank balance bending.
Wrapping in secret, while the kids are asleep
Shoving up lofts and cupboards in heaps.
Convincing yourself the spend isn’t too great
Hiding receipts and getting into a state.

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Last minute guilt buys for mum and for dad
They’ve leant you money all year but if you don’t you’ll feel bad.
Passing the shops and buying one more
Rushing back home to find somewhere to store.

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All under the tree and ready to go
Kids are oblivious how little they know.
As you rock in a corner clutching a gin
Maybe next year you’ll be strong, not give in.

by Cathryn Watters

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The Blessed Project

Flicking through the blog posts on the blog share threads last weekend (Big Up Your Blog), one from Susie Lindau’s Wild Ride leapt off the page at me.  She has invited bloggers to join her in a very special, positive experience – The Blessed Project.

Susie says “Last year, I posted a list of blessings and included a few photos. The exercise took me to a place in my heart filled with love, gratitude, happiness, and sparkly things. My favorite! For the time it took to create the list, it banished bad news, headlines, and normal everyday frustrations like surfing to buy the perfect gift which is as slippery as Elf on a Shelf.”  What could possible be better at this time of the year than to focus on blessings…and some photos to embarrass your kids??

So where shall I start?

My family naturally…..hubby Duncan puts up with a lot, particularly on those flare days when I am horrible to be around, but he is always there.  He spends half his life running me to different hospitals across London and never (well almost never) complains and is always there to pick up the pieces – or just to pick me up!!

The kids…..it is challenging having the student engineer living back at home after 3 years away and my kitchen is living proof, but he is getting better at catching me before I pass out.  The middle one – do all middle children play on the old adage that middle borns have such a tough time? – is due home from uni next weekend and it will be lovely to see him (I think – dirty washing???).  We haven’t heard much from him, but presume that is a good thing – although he does send regular pics to his sister.  Finally my baby – my lovely girl.  She drives me mad with her untidiness, but she looks after me over and above what a teen should have to do for her mum – and constantly plays down the fact that she also has the same condition.

My parents – they live up the road and without them our lives would be so much harder on so many levels. Thank you, Mum & Dad!

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Their first and only selfie!

My wheelchair – yes really!  It has given me a new lease of life as my mobility has decreased and pain has increased.  I have spent the last few years struggling to maintain some independence and to walk.  But the back pain initially and then the disabling effects of 2 back fusions (they really did add to my problems) and more hip dislocations have led to first funky walking sticks, then Smart crutches and now my wheels.  Not what I wanted during my 40s, but I can go out and join in! My eldest plans on taking me ice skating in it but I didn’t like the wicked glint in his eye when he suggested it!!

Friends who don’t give up on me when I blow them out, who stick by me and let me feel like the woman I used to be.  I also am very blessed to have a whole virtual friends family – bloggers and the chronic illness community who give such support and friendship…and “get it”!  Meeting with online Book Club friends at our annual birthday party was a treat.

I feel blessed to have found some kindred spirits this year at our EDS UK support group.

My furry friends – we have been blessed with some extra time with our elderly mutt, Sam, due to an understanding vet and painkillers (yes, for the dog!); but also our surrogate dogs, Chester who I love like my own, and Prince – both come round every week for walks with hubby and cuddles with me!

Samson

Samson

30 years on – meeting up with old school friends and feeling the years just slip away.  Hopefully staying in touch….have already met up with one and his family.Class of 87 pic

Finally….staying with the old school theme, I feel very blessed as the Chair of our alumni committee to have been invited to some wonderful events (Henley, the school drama) including the beautiful Carol Service last night in the parish church.  Talking to some of the parents and staff after, over mulled wine and mince pies, we all said that whether we were religious or not, it was a lovely way to start Christmas proper – putting aside the commercialism for just a short time and enjoying some true Christmas spirit.  There just might be a bit more of this spirit at the pub next week when I go to the One Term On event, for the youngsters returning after their first term at university…..won’t be staying too long as this old bird might really cramp their style!!!

 

Why don’t you link up your blessings with Susie?

Join the Blessed Project and Get Featured!

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The Blessed Project