Calling all Mums and Mums to be who have experienced #Fibromyalgia in #Pregnancy

This post comes from Melissa v Fibromyalgia

Pregnancy and Fibromyalgia Survey, Book and Page

After being disappointed at the lack of information about pregnancy with Fibromyalgia when I had Nu four years ago, I set about writing up my experiences and researching as new information became available.

On my Fibro Mama Pregnancy Diaries page I include my journals from my second pregnancy last year, which I edited and posted over this past year.

Now I’m writing a book!
On my new Fibro Mama Pregnancy & Fibromyalgia page I include the links to the ebook I’m writing as I publish the posts. When it is complete (and edited) it will be available for purchase, with extra content.
For now, could I ask you a favour?
Would you fill in a survey so I can add to the research available (limited) and my experience (two pregnancies makes me an expert in my experience not collective experience)?
Please take the time to visit Melissa’s blog,  her page that includes links to her coming book and the survey.
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Monday Magic – Inspiring Blogs for You

Happy Monday PPals!  I am currently sitting here cursing as WordPress decided to wipe my writing of this post and I can’t recover it.  It was finished too!! Aghhhh

Anyway I will attempt to replicate it….the Uk’s Strictly Come Dancing is whirling through the weeks in a series of foxtrots, tangos, quicksteps and more.  This weekend saw the couples entering a whole different level as they performed at the spiritual home of ballroom.  Professionals and celebrities alike are all in awe of the iconic Palace Ballroom, Blackpool which takes centre stage and steals the thunder of the dancers, as it is so breathtaking.

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Image from Google images

This weekend saw the end of the road for an inspirational young man who is a gold winning GB Paralympian and 100m sprinter.  I am of course talking about Jonnie Peacock, the 24 year old athlete who aged 5 years underwent surgery for a below knee amputation, having contracted meningitis.  He is the first contestant with a disability to take part in the main series and there have been questions along the way – Is it fair for Jonnie to perform the same dances as his able bodies counterparts? How can the judges possibly give Jonnie the same level of critique?  Why are the judges picking on Jonnie’s posture, bottom position and stature when he has one leg?

But these questions have never come from Jonnie himself and in his farewll speech last night he said that he was honoured to be the first disabled contestant, and he thanked the judges for judging him as an equal saying

“That’s what I want. You’ve been critical with me and I want that criticism. I think that’s fantastic and hope it paves the way for more people to come through and I think they may be able to stick their bum under a bit better than me.”

His tearful professional partner Oti Mabuse said

“This has been one of the most life changing things that could ever happen to me. Jonnie is not only an inspiration but he represents so much more. ‘If anybody wants to do anything, if you put your mind to it then you can achieve it and that’s what he represents.”

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I am not suggesting that we will all, abled or disabled, reach the heights of this remarkable young man, and for those of us living with chronic illness invariably daily pain and fatigue won’t even allow us to reach the putting our minds to it bit, let alone anything else!!  But this is surely a good mantra to aspire to and Jonnie Peacock has left Strictly a dancer.  Watching him jive on his running blade was a highlight for me…..and not forgetting him as Jack Sparrow on Halloween.

So from one inspiring young man to a handful of inspiring blog posts.  With another weekend of dodgy dislocations, I have read lots of blogs, interspersed with cheesy family movies and heat pads!  I have picked a selection of posts for you from a variety of bloggers – and as yesterday was World Prematurity Day, the first comes with a mascara alert as it is a post from Nicole that is written from the heart.  I have also managed to slip in a Christmas post – never too early – and will aim to do so each week in the build up to the festivities.

So grab a cuppa, sit back and enjoy some fab posts!

https://www.nicolefrancesca.co.uk/homepage/2017/11/19/november-never-forgotton

https://themswire.com/2017/11/19/four-airport-tips-for-disabled-flyers/

https://chronicallystrong.com/lupus-aibd/

https://yadadarcyyada.com/2017/11/17/people-forget-kindness-is-free-2/

http://www.themonochromeblog.com/single-post/2016/09/11/How-to-move-to-a-foreign-country-go-travelling-when-your-a-spoonie-TBC

https://thewildreaderwithacat.wordpress.com/2017/11/18/paint/

http://www.thirstydaddy.com/2017/11/10/the-good-guys-dont-always-win/

https://thedreamgurusite.wordpress.com/2017/11/17/how-i-found-out-about-eds/

https://mydailyjournalonline.com/life-rulebook-guest-post-riya/

https://medicalmysterymusings.wordpress.com/2017/11/19/christmas-expectations/

 

Please like, share and follow these blogs if you enjoy them!

Have a great week,

Claire x

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Monday Magic Nov 20

 

 

 

 

 

Monday Magic – Inspiring Blogs for You!

This weekend has been one of Remembrance in so many places across the globe.  With Saturday being the 11th November, it was totally fitting that the Lord Mayor’s parade in the City of London started with the playing of the last post and a 2 minute silence.  In true UK style, the weather was miserable – I can’t remember the last time it was fair for the Lord Mayor’s show!!  Sunday however was a beautiful, crisp day as the veterans and current serving forces gathered alongside politicians, members of the public and the royal family for the service at the Cenotaph.  The oldest veteran attending, a 99 year old former Royal Marine Ernie Searling, sent a heartfelt message to the world – “I feel very humble seeing so many hundreds of men and women on the parade today. So very, very humble, particularly those who are not with us on this day today… All I hope is that the future generations could see this parade, see some solidarity in it. See that the betterment of mankind in England, especially Great Britain, should be at its highest level. We don’t want street fights. We don’t want arguments. We don’t want racial injustice. All those things are horrible!” He brought a tear to eyes in our lounge.

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Former Royal Marine Ernie Searling

Over the last week the BBC have been broadcasting a series of programmes celebrating and highlighting the roles women have played in war over the last one hundred years – Women at War 100 Years of Service.  – currently available on the iplayer.  It is difficult not to be inspired by the young women of the World Wars who were trailblazers for so many careers that women had previously not been able to undertake – and I would imagine that this is the case in other parts of the world when the men were on the front line.  Some of these women, now elderly ladies, recounted tales of their training and deployment – as radio operators, munitions workers, pilots and engineers. These women paved the way for both women in the forces and in the workplace generally.

My first inspiring blog for you today follows this theme and gives thanks on Remembrance Day – but the others have a mixture of themes from midlife crisis (me!!) to migraines to books & disability to Christmas baking & gifts!  Not on quite the same par as WW2, but I think that you will enjoy these inspiring posts and urge you to grab a drink, take a seat and enjoy.

https://butterflyinremission.wordpress.com/2017/11/10/with-heartfelt-thanks-on-remembrance-day/

https://www.shailajav.in/shifting-perspective-create-more-than-consume/

http://www.crestingthehill.com.au/2017/11/that-midlife-crisis.html

http://www.youcanalwaysstartnow.com/2015/06/01/success-who-gets-to-define-it/

https://brainlessblogger.net/2017/11/12/symptoms-of-a-migraine-that-can-be-as-severe-as-the-pain/

https://ginlemonade.wordpress.com/2017/11/03/3-books-3-blogs-from-gemma-at-wheelescapades/

http://drallisonbrown.com/power-perspective-shoe-fits-wear/

https://cookandenjoyrecipes.wordpress.com/2017/11/11/ess-gf-christmas-candy-cane-butter-biscuits/

gf-christmas-candy-cane-butter-biscuits

Image fro The Recipe Hunter

https://chronicrants.com/2017/11/01/defining-affordable/

https://theblogbroadblog.wordpress.com/2017/11/11/great-gifts-ideas-from-uncommon-goods/

As ever please share this post and these posts if you enjoy them!

love Claire x

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Monday Magic - Remembrance

 

 

 

The need for a challenge to help myself and others #BBCRickshawChallenge

Oh my goodness, what have I done?  I think that I experienced a brain storm this week – well an even greater one than usual!

Two years ago I had only recently started this blog and was recovering from spinal cord stimulator surgery when I wrote about some inspiring young people in the UK undertaking The Rickshaw Challenge.  This is a project that has run for several years now and is championed by the BBC One Show – and particularly by presenter Matt Baker – in order to raise money for the UK charity Children in Need, founded by the late Sir Terry Wogan.  A group of young people who will each have a story, from illness to bereavement to overcoming adversity, and have all in some way benefited from the charity, cycle a route across the UK on the rickshaw as a team and fund raise along the route.

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Image from BBC website

The strength of mind and spirit to succeed always shines from these youngsters every year.  I was caught off guard last week by a young lady called Sabah who is a member of this year’s 6 strong team.  She has had multiple health problems, including cancer, a kidney transplant and now is on dialysis – but she told the audience in a most matter of fact way that she would simply do her stint pedaling the rickshaw and then stop for dialysis.  I was a wreck by this point.  But the determination of these young people, and Matt Baker who cycles the whole route with them giving encouragement and support, has really got me thinking.

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Image courtesy of Google search

My own health has deteriorated over the last 2 years, and there is always an issue with chronic illness and the deconditioning of the body.  For us bendy people with Ehlers Danlos Syndrome it is really important to keep moving and as physically strong as possible – most of us will have exercises from physiotherapists and doctors.  But chronic health can become a vicious cycle (no pun intended) as the body becomes deconditioned due to pain, fatigue etc and then the deconditioning reduces the ability to “move” or exercise, in turn leading to further deconditioning.  Add a spot of dysautonomia into the mix – check out what it is here – in my case dizziness, low blood pressure, raised pulse, fainting (POTS) and you have a recipe for an increasing number of sofa days and Netflix!

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Image courtesy of Google search

So what is a middle aged (eek) girl to do in order to keep the mind and body working? Well, blogging and writing and generally being part of this fantastic online community does wonders for the mind alongside being a school governor and now chairing an alumni committee.  The body isn’t so easy, especially on high pain and flare days.  The spinal cord stimulator still helps to mask the leg and back pain from nerve root damage, but then for the EDS pain throw in some pregabalin, naproxen, cocodamol and the odd shot of oxynorm and the result may be manageable.  The changes in weather don’t help and I am still certain that my titanium spine reacts to changes in air pressure!

But as the young Team Rickshaw show us, there is always someone worse off and always someone to inspire and motivate us.  Sometimes it is important to set oneself a challenge in order to move from one day to the next when life is throwing rubbish about.  I am still learning that those challenges need to be smaller these days than a decade ago – pacing….no, I don’t really do that very well.

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Image courtesy of Google search

So back to my first question…what have I done?  Well I have set myself a challenge and signed up for the Virtual Rickshaw challenge…..I will be riding on an exercise bike from the comfort of my living room between now and New Year.  I’m not going to pretend that I will be burning up the miles and covering anywhere near the real rickshaw ride, or that I will even manage to pedal every day.  But if those youngsters can overcome adversity and put themselves out there, then this old bird can surely help herself ….and if I can raise a little money for Children in Need, then all the better!!

If you would like to visit my challenge page please find it here…..no expectation to donate, but it would be lovely to receive some encouragement and support over the next couple of months…maybe you could even share for me.  I will give you updates of my progress…..so with today as day one I managed 3 miles with only a neck vertebra and shoulder dislocated.  Not bad going for me!!  (Don’t worry folks, I am ok – good excuse to avoid the washing up!)  Onward and upwards…

Chronic Pain and the Opioid Epidemic – with thoughts from Chronic Mom, Shelley

Here in the UK we don’t have the issues around a GP agreeing to treat chronic pain or of insurance covering prescription charges in the same way that patients in the USA do.  I am not saying that our GPs always get it right when treating those of us with chronic ailments, and I believe that chronic pain can be treated back to front – that is drugs are thrown at it as a first line and then referrals for specialist pain clinics come too late.  I was one of eleven on an in patient pain course for assessment for spinal cord stimulator implantation two years ago.  We had all lived with chronic pain for years and this was the end of the road…..whilst we appreciated the teaching of coping mechanisms, self help and psychological support, most of us felt that this had come years too late in our treatment “journey”! We were all taking opioids and in order to qualify for a stimulator trial we had to come off or reduce this.  A daunting task!

Opioids

Any one living with chronic pain will have a stash of opioid drugs in the cupboard! A few of mine!!

 

This isn’t necessarily a criticism of our doctors – I know that they have such a limited time to see and get to the bottom of each patient’s problems.  Who saw the BBC documentary series following Dr Rangan ChatterjeeDoctor in the House“?  He had the luxury to be able to spend time with his patients – over a period of weeks he spent time in the home, became familiar with families and habits, diets, sleeping patterns, which all allowed him to dissect issues such as fibromyalgia, cluster headaches, chronic fatigue syndrome and more.  But this is not the real world and in waiting rooms across both sides of the pond, the queue of people needing help for chronic pain grows.

I mentioned prescription costs and in the UK we are fortunate, yes I did say fortunate, to have a fixed price per item and for those of us needing more than one drug per month, the prepayment programme saves money on these charges.  But we are experiencing constant cuts and patients are seeing their regular medication being withdrawn – I recently read a letter from a young father who has had his medication for rheumatoid arthritis stopped due to funding cut backs. However in other parts of the world patients must cover the full cost of drugs if insurance will not pay out – I take Lyrica/pregabalin and prior to the initial licence expiring, each month’s supply cost hundreds of pounds. The first time that I was prescribed it was at the private hospital attached to the hospice where I worked – aged 39 I had to ask my dad to pay as I didn’t have enough money with me to cover the private prescription.  Dad has never let me forget that he put up the funds to start my drug habit!!!  Such a joker….

Without further ado I would like to share with you Shelley’s post in which she discusses the use of opioids – both on prescription and illegally.  It is an informative read, particularly for those in the States.

People with Chronic Pain did Not Cause the Opioid Epidemic

A great deal of people are uncomfortable with how often I address the “opioid epidemic” and how it hurts people with chronic pain. I think this is because healthy people like to imagine that doctors can fix everything and if something isn’t fixed that it must be the person’s fault. Therefore if someone is in pain they aren’t really being denied treatment for it, they just aren’t trying hard enough. Unfortunately the reality for people with chronic pain is very different. It doesn’t matter if you’re the perfect patient, doctors will no longer prescribe pain medicine.

Even if you’re lucky enough to find a doctor who will treat your pain, good luck getting your insurance to cover your prescription or your pharmacy to fill it. These days a pharmacy can refuse to fill your prescription and then call your doctor and tell them they were wrong to give you this medicine. Opioid hysteria has gotten so severe that now we’re bypassing the judgement of doctors and listening to pharmacists instead. My opinion of doctors has never been high, but they go through years of medical school for a reason. While pharmacists are educated they are not doctors and are not familiar with individual patients. So why are we granting pharmacist’s more power than doctors? Oh yeah, everyone on pain medication is an addict.

Here’s the problem though, the opioid epidemic does not come from prescribed pain medicine or chronic pain patients. In fact 75% of all opioid misuse starts with people using medication that wasn’t prescribed for them. Also 90% of addiction starts in the teenage years when teens are also misusing alcohol and hard drugs in addition to pain killers.  Have we banned alcohol yet? Because 88,000 people die of alcohol related deaths per year and no one seems to care. Instead we ban pain killers even though less than one percent of those who were well-screened for drug problems developed new addictions during pain care. In other words, people with chronic pain are not the problem and were likely never the problem…….”

For the full post please visit Shelley at The Chronic Mom

Monday Magic – Inspiring Blogs for You!

8Welcome to another Monday Magic and some great blog posts to entertain and inspire.  The last week has seen both Halloween and Bonfire night – I think that we gave out goodies to about 50 little witches and monsters (I know, this is small fry compared to some of my pals in the USA), and the fireworks seem to have been almost nightly.

 

I have to give a shout out to all our pets for having to put up with this human fascination with loud explosions, deafening whistles and a sky full of bright lights.  Our old boy Samson spends much of the evening barking or trying to hide – at approx 15 he is getting on in dog years and periods of doggy dementia do kick in, particularly with fireworks.  The beautiful Chester, our surrogate dog who we look after for friends and love as our own, was also very chilled on Saturday night unlike his best buddy Freddy (a neighbours’ pooch) who also spent the night barking.  The things we put them through!

Our house has been transformed into an artist’s studio again this week, as the lovely girl has been putting together her sketch books for an interview at school tomorrow.  Having 2 weeks half term holiday has given her even more time to spread her wares from room to room to room……I know I’m biased but she has come up with some great concepts for the project title “I. Me, Mine”.  Meanwhile hubby, otherwise known as Mr Intimate Audio, has also been creating as he looks at new and exciting finishes for the hifi horn speakers that he designs and builds.  I think that we need a studio…..IMG_3541

I, meanwhile, have found you a mixture of posts this week starting with “November Prompts” from my friend Sheryl at A Chronic Voice – this is a lovely link up, that I will try to put my own prompts to this month.  I have found an interesting post about modern racism, some wonderful poetry on Thoughts from Jasmine, a post about social anxiety in children (very applicable for my lot even if they are tweens!) along with a mix of chronic illness posts.  Need I say more – grab a cuppa, turn off your phone and enjoy some great reads!

https://www.achronicvoice.com/2017/11/02/november-prompts/

https://www.anempoweredspirit.com/seasons/

https://jadealicexxo.wixsite.com/jadealicexxo

https://www.judyedwinamartin.com/sugar-and-spice-being-woman-is-nice/

https://thoughtsfromjasmine.wordpress.com/2017/11/02/growing-up-with-modern-racism/

https://talesofaneglectedwomanchild.wordpress.com/2017/11/03/deep-water/

http://coffeeandcarpool.com/how-help-your-child-when-they-worry-about-social-situations/

https://noonegetsflowersforchronicpain.com/2016/01/30/i-fell-apart-it-was-beautiful/

https://dazzlingzebra.wordpress.com/2017/08/21/dazzling-zebra/

http://www.ayni-books.com/books/acts-kindness-from-your-armchair

Please, please make someone’s day and like, follow, comment on their post if you enjoy it.

Claire x

 

Monday Magic 6 Nov

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Monday Magic – Inspiring Blogs for You!

Another week has flown by, there have been yet more storms – why did ours in the UK get the name Brian? – more Brexit and the increasing #MeToo campaign.  In our house we saw the end of the German exchange as our lovely girl and her friends’ student partners returned home.  Absolutely exhausted!  The girls are now coming down off a high and the start of half term is a bit of an anticlimax, particularly with mock exams looming.

Our girl is studying art – you probably know already as this proud mum has posted pictures, much to the disgust of my girl – and has a portfolio to work on and also a sketchbook for an interview.  The house is destined to filled with paints, charcoals, paper and panic!  I am doing something this week that I don’t normally, but I’d like to shamelessly introduce you to some other talented youngsters – the triplet daughters of an old school friend.

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Art By Three

They have  been featured on Sky Landscape Artist of the Year, and are currently working with the UK’s National Trust on the Scotney Old Castle campaign. Whilst not strictly a blog post, I have included both their website and the campaign site as I strongly believe we should support and nurture young talent – I am not asking you to donate but to take a peek, maybe follow them on Facebook and Instagram…..

The other posts are all fantastic and range from an article that fits with the #MeToo campaign but stems from a personal story of surviving from Illness to Wellness, to acupuncture at My Migraine Life to social well being from a new blog to me Little Adventures NZ.  There are a couple here that are particularly great reads for you ladies – I love the look at Envy on Wendy Fairy Art – and all you mums and dads must read “My Husband Doesn’t Help” from the Coffee Mom.  It is not what you think it is!!!  Add in some OCD at The Thyroid Damsel and what more diversity could you want?!

So it is that time to grab a cuppa, turn your mobile to silent and spoil yourself with some great reads.  Please comment, share and follow some of these lovely people if you enjoy their work.

https://www.jumblebee.co.uk/scotneyoldcastle1010campaignwithartbythree

http://www.artbythree.co.uk/

https://littleadventuresnz.com/puzzle-piece-series-social-well-being/

https://wendyfairyart.com/fairieartblog/sistership-wound-called-envy-deal/

 

https://www.thecoffeemom.net/2017/10/20/husband-doesnt-help/

http://notebooksandglasses.com/sitting-disability/

http://coffeeandcarpool.com/be-less-stressed-as-a-special-needs-mom/

http://thethyroiddamsel.com/?p=310

https://mymigrainelife.wordpress.com/2017/10/22/does-acupuncture-work-for-migraine/

https://illness-to-wellness.com/2017/04/07/showing-up-for-sexual-assault-survivors/

https://thepainfreelife.com/life-interrupted/the-death-of-a-marriage-the-year-that-changed-everything-part-1/

Have a great week,

Claire x

Monday Magic - Inspiring Blogs for You! 23 Oct

 

 

 

 

Monday Magic – Inspiring Blogs for You

Welcome back to Pain Pals for what I hope will be a great week following a fantastic weekend! Those of you who have read my previous couple of posts will know that our lovely girl has her German exchange partner staying – an equally lovely young man of 15 and about 6 feet 3!!  We had a house full on the first night as we hosted all the English girls and German boys & girls to help break the ice; and then when hubby arrived home Saturday evening having collected from ice skating & bowling, I couldn’t help thinking “Bloody hell, my new car really is big” as the front door opened and a stream of teens came in.

There were 16 in total – and no it turns out that the car isn’t really a Tardis – but they were followed by a steady stream of takeaway deliveries from 5 outlets.  I can’t remember when, if ever our doorbell has rung so many times on a Saturday night! I just commented on an EDS Facebook group that a huge positive for us this week has been to see our normally angst ridden teen turn into a group organiser and hostess.  We had only been expecting 6 back on Saturday, but in order to avoid some breakdowns within the group our girl sorted them all (and took over our lounge ha, ha, ha) with tact and diplomacy to ensure everyone had a good evening.  Teenage relationships can be so tricky at the best of times, but throw in different languages, exchange partners paired who ordinarily wouldn’t be in the same friendship groups, one all girls school & one mixed sex, and the probability for issues is huge!  It has been interesting to see that the mixed sex pairings – like our lovely girl and lovely German boy – have been less problematic than the all girls – teenage girls and friendships equals another blog post entirely methinks!  The mixed sex group – 4 couples – went to Thorpe Park Fright Night on Friday and had a fantastic time. Not my cup of tea but they loved it.

IMG_3477As for me I am officially exhausted, typing one handed whilst in a sling again, but am officially one very proud mum having watched my girl blossom before my eyes.  Some might say turning into a chip off the old block – and even her eldest brother commented that the social awkwardness she professes to have is just not evident for the rest of us.  Today they have all gone to Brighton – the Pavilion, fish and chips, the beach and the lanes. Whilst the fatigue and dislocation have taken their toll, I have found some more fabulous blog posts for you to enjoy.

 

 

 

 

 

So grab a cuppa, kick you heels up and sit back to read some fab pieces, all very different but all inspiring.  I particularly love the Lush products review from Katie Cupcake and the beautiful piece about friendship from Happiness and Food. Enjoy!

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Photo from Katie Cupcake Life With ME

 

https://fictionisfood.com/2017/10/14/thoughts-on-nannowrimo/#more-4179

https://www.sp-bx.com/rick-and-morty-season-3-review-the-best-season-so-far/

https://clockworkclouds.wordpress.com/2017/10/09/can-you-overthink-an-idea/

http://katiecupcakelifewithme.com/review-with-me/lush-karma-spa-treatment-event-review/

https://www.happinessandfood.com/name-happy/

https://zebratalez.com/2017/10/15/10-social-security-disability-tips/

http://invisiblenotbroken.com/blog/2017/10/4/best-podcasts-to-listen-to-when-stuck-in-bed-with-chronic-pain

http://withoutacrystalball.com/2017/10/12/day-found-family-chronically-ill/

http://www.healthyeatingexperts.com/holistic-therapist-kicked-depression-said-bye-bloat-chronic-digestive-issues-naturally/

https://livingwithme.blog/2017/10/12/all-time-low/

Please comment, share and spread some love for your fellow bloggers.

love Claire x

Monday Magic - Inspiring Blogs for You! (1)

 

 

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

 

Dear Hubby….

Dear Hubby,

I woke up this morning wondering how we got here.  If we had known on this day all those years ago what was in store, I wonder if you..or I…would have turned up at Chelsea Registrar’s office?Scan0023

But we did, and here we are, having weathered the storms, the unexpected, the joys and some dark times.  Back then it was just going to be us and your beloved Lotus 7, having been told that babies were not likely when I was diagnosed with polycystic ovary syndrome aged 20.  The first storm – for you at least – was the realisation, soon after we bought our flat in Fulham, that we couldn’t afford the parking space to go with it! So the first Lotus 7 had to be sold as leaving it on the road – even the posh road to Bishop’s Park and the Palace that we overlooked – was not going to happen.  Scan0025

Of course at this time we had no idea about Ehlers Danlos Syndrome – had never heard of it – we just knew I had a host of problems and had already undergone major back surgery and was very bendy. Life in London was great, wasn’t it?  I don’t think that brand new kitchen was cooked in very often as we dined out down the Kings Road or in Fulham most nights.  But all good things come to an end, and you began craving another sports car(!) so the hunt was on to move out of London.  Soon after the move to our first house came another joy in the shape of a second Lotus 7. But within months came probably our biggest unexpected piece of news….I went to the GP for a once over before starting a new job, feeling generally unwell – and came out 3 months pregnant whilst taking HRT.  Hmmm….that little 2 seater didn’t last long either.

There has been redundancy; more babies – including the tummy bug that didn’t go….oops! your little girl…..3 caesarians & increasing back pain; another house move to the same road as your in laws(!); hideous working hours for us both, including 6 day weeks and night shifts; increasing migraines; more dislocations; IBS; school choices; more back pain and finally on the eve of Obama’s first term in office – the straw that broke this nurse’s back!  Then a career lost – permanently.

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And 2 becomes..5

We are quite a few years on and many more major surgeries to add to the list.  Not forgetting the Ehlers Danlos Syndrome diagnosis – for me and the kids.  A life threatening illness for one of our parents and then your own health taking the full brunt of all our traumas. That was a scary time for us all to watch you disintegrate.

But…..we are here still standing – you at least! Me – I spend more time on the ground these days (laugh everyone!).  The kids had to grow up fast and have all turned out to be pretty bright (not sure where that came from), independent & resourceful – so long as we’re not talking about tidiness and cleaning!!  We have had to accept that I need you to officially be my “carer” – which I still hate – as my health declines, and this has been hard for us both having worked and earned from the age of 18.

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Look what arrived today!

But…..with a bit of juggling, fantastic parents and wonderful friends we are doing ok, aren’t we?  No we haven’t any money for holidays, and we worry about being unable to help the kids out financially, but this has led to our young adults working and earning – be it paper rounds, babysitting or writing websites! We are spending more time together as a family, you are enjoying setting up your own small venture and taking on a role at the kids’ old primary school, which has been the making of you. Who would have thought it a couple of years ago!  You never – or rarely – complain about me and I do know that on those really bad days, when the pain flares and I can’t settle, or the black dog (not Sam!) surfaces I can be awful to live with.  Plus there are the endless trips to hospitals across London and the different specialists to keep track of.

Neither of us signed up for this, but then you never know what is round the corner. In a funny sort of way maybe life is actually more fulfilling now.  We certainly both have almost encyclopaedic knowledge of Ehlers Danlos Syndrome and all that goes with it!

So back to the beginning…..it was a pretty dreary day and actually raining when we walked out as Mr & Mrs (at least I did prevent you walking me over the road to Stamford Park!) 25 years ago.  But today has been a bright, beautiful autumn day – Happy Silver Wedding Anniversary, hubby!Scan0024

love Claire x

Dear Hubby

Brilliant blog posts on HonestMum.com