One Rusty Old Body In Need of a Tune Up! Trip to the Pain Clinic

Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began.  Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial.  Just over two years ago I became the recipient of an implant.  So much has changed in this time.

The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage.  Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. File_000 They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature.  I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.

All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!).  So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick!  Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly.  Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty.  She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to.  Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain.  I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.

Rusty body

So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too.  At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine.  The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue.   But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily!  So when the nurses express surprise to see me so altered,  it won’t be because the scs isn’t working – would I have it done again?  In a heartbeat as it has given me  a way to manage some of the pain.

But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain.  They might not be able to get rid of the rust, but will report back when I am wired for sound!

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Monday Magic – Inspiring Blogs for You!

Welcome  to a bit of Monday magic – I hope you all had a great weekend.  We saw the middle child, aka the politics student, return to university yesterday and I don’t think it took too much preparation on his part because he hadn’t unpacked most of it since his return!  Yes, he has been living from the cases on the floor of his bedroom for the last few weeks, which have become increasingly full of chocolate wrappings from Christmas, crisp packets, new gifts, clean washing, dirty washing…you get the picture, not an inch of carpet to be seen.  Anyway hubby deposited him back yesterday with or without all that he needs and the next thing will be to reclaim the room and change the odour from Eau de Teen Boy to fresh air!!

The eldest continues to undergo job interviews from the various applications that he has put in.  Since when did the selection process become so complicated?  If you get shortlisted from your application, you firstly complete a phone interview, then online psychometric tests (“Mum should I say what I think they want to hear, or what I think might be right, or is there even a right answer?” “How on earth should I know? I’m just your mother!”) then in his case, a phone/skype interview with a live computer coding test…..and then after all this a face to face interview in an office, meeting a real person, drinking coffee and talking!  Wow!  He does have a final interview this week with a big American firm (so I’m told) – but I have no idea what they do, what he would do…..just hope something comes to fruition …..and if it requires a move out of home and away from my kitchen & bathroom, hurray(and then we will welcome him back for visits with open arms!!).

This week I was sad to see a couple of blogging groups’ admins have to post that group members were not following basic rules and were not supporting the spirit of the groups.  I really hope that this is the minority of bloggers and that the majority still look to support others, follow people because of a genuine interest and to interact.  Maybe I am being naive, but I hope not.  I have some old blog friends and some brand new bloggers to introduce here with a huge variety of post – from healthy eating (although the advice will not work with the student engineer!) to dealing with bullying to the hilarious post from Hot Mess Memoirs about giving back crying babies.

Daniel

Sit back, grab a cuppa and enjoy some terrific posts!

https://positivelyrachel.com/2018/01/11/living-with-overstimulation-and-hypersensitivity/

https://livingthechronicillnesslife.com/2018/01/11/engaged/

http://thehealthsessions.com/eat-vegetables-with-every-meal/

http://www.bbhwithms.com/i-used-cannabis-daily-for-my-chronic-pain-for-the-past-year-this-is-what-happened/

https://chroniclesofmyalgice.wordpress.com/2018/01/13/21-days-of-prayer-fasting/

https://invinciblefortitude.com/2018/01/11/7-tools-against-bullying/

https://hotmessmemoir.com/2018/01/13/new-babies-giving-back-cry/

https://www.health-hats.com/3254-2/

https://thenellybean.com/my-issues-with-the-word-influencer/

https://sarcasticbohemian.com/2018/01/12/how-to-survive-nightmares/

Monday Magic - Inspiring Blogs for You! 15 Jan

Please remember to support some fab blog posts by sharing, commenting and liking.

Claire x

Blogger Recognition Award

I’ve been nominated for the Blogger Recognition Award by the lovely Rachael from Rachael’s Thoughts. We first met on the facebook group Big Up Your Blog, a fantastic community set up by Suzie and Em.   Rachael blogs about all sorts and recently she has shared about her move back to the North East of the UK with hubby….just one week before Christmas! You can see her original nomination post here.  Thank you so much, Rachael.

Blogger Recognition Award


RULES FOR THIS AWARD :-

  • Write a blog post to show your award
  • Thank the blogger that nominated you
  • Tell your readers how your blog started
  • Give two pieces of advice to new bloggers
  • Nominate other bloggers for the award

How my blog started…

In all honestly I knew nothing about blogging and it started on a complete whim, and as a little bit of a joke.  I was going into hospital to have a spinal cord stimulator trial in the hope that I would find some relief from the chronic nerve pain in my leg and back – secondary to nerve root damage and a genetic condition Ehlers Danlos Syndrome.  Initially I asked my son to set up a blog thinking that friends and family could follow my progress and save hubby from too many phone calls.  The kids thought it was hilarious – “why would anyone want to read anything you write, mum?”.

 

I had found advice and support online from others invaluable in the lead up to this, and if I could offer the same to anyone else then I wanted to give it.  The writing process itself has been really therapeutic and I have found a lovely community out there – a chronic illness community who I can both support and gain support from, and some fantastic new friendship groups who are a lifeline for someone like me who spends increasing amounts of time on the sofa with symptom flares/deterioration.

I can’t quite believe that I am still here, tapping away and part of a world that just a couple of years ago I knew nothing about.  My kids can’t either – and daily regret introducing me to Facebook, Instagram etc….but that is another story!

 

Two pieces of advice I want to give to new bloggers:

  1. Enjoy it! – Take it slowly, Rome wasn’t built in a day and all that, find your blogging feet and get into your writing groove whatever that may be.  I know that there can be a tendency out there to focus on stats, followers, traffic etc…..but think about why you are doing this.  Don’t get so embroiled in the numbers that you forget to enjoy the experience.
  2. Meet & support other bloggers – much the same as Rachael said in her post.  Follow other blogs that interest you, leave likes and comments – generally engage.  Join groups on Facebook – for me it was the Chronic Illness Bloggers and The Book Club on Facebook initially – and take part in threads and chats.  If you are a social media dinosaur like yours truly, learn about Twitter & Instagram & Pinterest….but don’t try to do it all at once as you risk feeling swamped.  None of them are going anywhere.  But it is out there that you will find your community and then your own blog will grow…..but it isn’t a competition.

MY NOMINATIONS:

https://brainsandbodiesblog.com/

https://dazzlingzebra.wordpress.com/

https://kimc91.wordpress.com/

https://schoolrunshop.com/

https://fancypaperblog.wordpress.com/

Keep sharing the words and the love!

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Blogger Recog award

 

 


Tips and Encouragement for New or Returning Exercisers of All Health Statuses

Tips to get back to exercising…..

Illness to Wellness: A Journey

Note:Everybody who reads this should talk to their medical practitioner or some sort of fitness professional, like a personal trainer, before they get started with an exercise routine. This article is written both for people with typical health and those without, but the suggestions are easier to map onto your life safely if you don’t have as many medical quirks.

I mention some chronic conditions and how that can affect the kind of exercises you want to do, like fibromyalgia, chronic fatigue syndrome (CFS/ME), postural orthostatic tachycardia syndrome (POTS), and general hypermobility in your joints or something more specific like Ehlers Danlos Syndrome. And if you’re a wheelchair user, here are some exercises that are specific to you! I’m sorry that I don’t write about you specifically, but I hope you will find encouragement here, too.

ben-o-sullivan-382817 Photo by Ben O’Sullivan on Unsplash.

So, your new year’s resolutions…

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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.

SONY DSC

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.

pexels-photo-221361.jpeg

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

 

New Venture @ The Recipe Hunter – Weekly Share and Inspire, Meet and Greet

New Meet & Greet Tomorrow! See you there….

The Recipe Hunter

Blog Weekly Greet

Please come over and join us and participate in a New Venture over @ The Recipe Hunter and let’s have fun at the Weekly Share and Inspire, Meet and Greet! 

We will kick off this new venture next week,  Sunday, 7 January 2018, and I would like to welcome all old and new bloggers and trust that this will be a good opportunity for all of us to get to know each other better.

Watch this space and be ready for the first Weekly Share and Inspire, Meet and Greetnext week, Sunday, 7 January 2018. 

This is an open invitation to all bloggers from any niche,so please leave us a comment and tell us a little about yourself, and yes, we want you to leave us a link to promote and showcase your own blog.

You can use any link of your choice.  You may wish to…

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New Year Meet and Greet

New Year Meet and Greet!

Dream Big, Dream Often

 

It’s the Meet and Greet weekend everyone!!  Strap on your party shoes and join the fun!  

Ok so here are the rules:

  1. Leave a link to your page or post in the comments of this post.
  2. Reblog this post.  It helps you, it helps me, it helps everyone!
  3. Edit your reblog post and add tags.
  4. Feel free to leave your link multiple times!  It is okay to update your link for more exposure every day if you want.  It is up to you!

  5. Share this post on social media.  Many of my non-blogger friends love that I put the Meet n Greet on Facebook and Twitter because they find new blogs to follow.

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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!!!

IMG_20171227_175844405

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