This week author David M Barnett is on a blog tour to promote his wonderful book Calling Major Tom and he will be stopping by Pain Pals on Wednesday for a Q&A post!
If you have read this heart warming story and have a question or a comment then drop by – or comment here right now!
Good Morning!
I hope that you are all ready for another week – tennis at Wimbledon, more sun, heat and BBQs, and for many the end of the school term and for some the beginning of the long summer holidays. So I really shouldn’t moan about this heat wave that we have in the south of the UK, but it is really sending my POTS/dysautonomia off the scale. Please send me all your top tips and I will put a post together – funny tips too please!
Anyway I bought a big straw hat – not easy when you have inherited the family huge head! – and have been away for a couple of days with my parents to visit my brother at his new house. We are talking brand new – living on a building site would aptly describe the estate at the moment – and my sister-in-law still has a lot of boxes to unpack. Think I would be correct in saying mainly make up and bling…..she won’t be offended! We were taken to the school play and end of year prize giving on Thursday, which was an incredibly hot day. The children, aged 5 – 11, did a fantastic job of an interesting amalgamation of Romeo & Juliet, Peter Pan and the Cow who wanted to grow Sunflowers – beautiful costumes! The whole event took place in a marquee – small Oxfordshire private school – and the heat during the afternoon was horrendous. I think maybe the head should have adjusted her speech….shortened it!!
Anyway, despite being armed with said hat, water and the salt grinder from my brother’s kitchen, Auntie Claire had already fainted on leaving the portaloo. But I completely stole the show at the end of the day with a fantastic backwards faint when standing up from my wheelchair to get into the car. I came round on the gravel carpark floor surrounded by faces….not just those of my family! There was a parent who is a doctor, the school nurse, a teacher……and my mum trying to explain POTS, my spinal cord stimulator etc etc…..and please don’t call an ambulance!! The school nurse was quite excited, having come to these events for years and having nothing to do. As a fellow nurse I loved this
!
Like many of you, I have spent the weekend feeling constantly giddy and last night managed to pop a hip and dislocate the knee and ankle on the same leg – the joys of EDS. So whilst I should be at a governors’ visit day at our local primary school – Duncan would not let me go unless I could weight bear – I am instead sitting with leg up and finding some great posts for you. The final You tube video comes from a young vlogger who appeared on the BBC yesterday morning to discuss organ donation in the UK – he has cystic fibrosis and is awaiting a lung transplant. This post is about living with a chronic illness as a teen.
Time for your cuppa and relaxation time with some inspiring posts! Enjoy!
http://alifewellred.com/embrace-the-years-with-dignity-and-beauty/
http://xofaith.com/boost-your-confidence-beyonce-edition/
http://www.fromthispointforward.com/2017/07/facing-forward-jayne.html?m=1
http://www.thepaincompanion.com/blog/dancing-through-pain-to-freedom
http://bladder-help.com/role-hormones-bladder-health/
https://itrippedoverastone.com/2017/07/07/what-my-husband-said-to-me/
https://neurodivergentrebel.com/2017/07/07/lets-talk-take-a-break/
https://picnicwithants.com/2017/07/05/floaters-and-flashers/
https://theedschronicles.com/2017/07/06/model-with-eds-uses-her-condition-to-stand-out/
Please remember to like posts and follow these great bloggers!
Claire x
Happy Monday, Pain Pals!
A levels finished last week for the sixth form student and that meant another end to an era marked by Prom hosted at the Queen’s Stand, Epsom Downs. The preparations weren’t quite as intricate in our house as they were in those of friends with daughters – hair, false nails, spray tans, pencilling the eyebrows just right, different dresses for every girl…the list goes on! A new suit was purchased along with matching tie and shoes……and he did have a haircut the day before which he says was coincidence, but I do wonder! Anyway he scrubbed up pretty well and the Charlie’s Angel style pics are typical – the girls and the boys posed in very different ways. I don’t understand the sticking out the bum thing that seems to have the replaced the fish pout. Must be getting old….
So only one child left at school now, and she is gutted that the student engineer is coming to live back at home for his 4th year – “I thought I was going to have the house to myself, Mum!”. He is currently balancing the cost of living in London with the savings of moving home but living with us….not to mention us having to cope with having him back again full time. We love him dearly, but the mess, the fussy eating, the mood swings – he is such a drama queen!! I am well aware that I seem to be describing a toddler, who is actually 21!!
My writing has been a bit non existent this week, but I have found another 10 blogs that are new to Monday Magic and I hope that you enjoy them as much as I have. It never fails to surprise me just how many wonderful writers there are out there in the chronic community and how we all support each other. But these posts are equally inspiring for everyone, ill or not – I love to find inspiring blogs, about different subjects, through link up parties that I might never ordinarily find. So sit down with a cuppa and enjoy getting to know some new bloggers!
http://www.balancedespitethechaos.com/blog/new-dr
https://achronicspoonful.wordpress.com/2017/06/30/on-being-functional/
https://lennaesworld.com/2017/07/03/goal-kicking-4-years-on/
http://katethealmostgreat.com/30-things-about-living-with-pots/
https://janaowlfdesigns.blogspot.co.uk/2017/06/when-your-brain-decides-to-shutdown.html
http://herviewfromhome.com/lets-admit-that-marriage-isnt-a-fairy-tale/
http://www.bbhwithms.com/married-disease-relationship-multiple-sclerosis/
http://chronicmomlife.com/overcome-depression/
http://www.trippingonair.com/2017/06/ms-relapse-9-ways-to-survive-steroids.html
https://highrisk1.wordpress.com/2017/06/26/my-first-mania-rash/
Hope you enjoy these posts and comment/follow for these great writers. If you have a suggestion for an Inspiring post to be included in Monday Magic, send me a line!
Enjoy
Claire x
It has been a sun drenched week with temperatures reaching 35 degrees in London – too hot for us POTSIEs!! I have been absent from the blog and social twitter as the heat has given me some pretty grotty days, but thank goodness for midodrine – this has kept the faints under control. Up to now I have had to get my midodrine prescribed monthly by my cardiologist and then dispensed by the hospital pharmacy, a hassle for everyone, but this month my GP has been allowed to prescribe. Hurray!!
Something that the weather has played havoc with has been my icing!! I planned to make a cake for our friends’ Silver wedding anniversary and it was all going well until Wednesday night when I came to ice with fondant. Who has ever tried to ice a 24 ounce, 12 inch heart shaped cake in 34 degrees humid heat?? Three of us were doing it – I can’t roll it out any more due to dodgy wrists/hands/shoulders! – and if we tried to lift the wretched stuff once, we did it at least five times and each attempt the sheet of icing split. Eventually the cake went back in the fridge, the fondant into its tub and me in front of the TV with a glass (large) of wine. Panic not, yours truly was up bright and very early the next morning and icing the cake at 7 am before a rheumatology appointment at 9 am. Very pleased with the finished product and I even made it to the party on Saturday for a couple of hours (in the wheelchair with a dislocated shoulder in a sling – colour co ordinated with my dress naturally) where the A level student got his sister tipsy on cocktails. Enough said!!
I’m rather later in the day getting some inspiring blog published, so I suggest that it could be time to sit down with a large glass of vino or a cold beer or even a Pimms, and enjoy some great posts & a vlog. Think I need to take a close look at the sunburn one and I am intrigued by the Spoonie pin up……
https://confessionsofafibromama.wordpress.com/2017/06/26/a-tricky-parenting-secret/
http://hope-health-healing.net/blog/2017/6/19/how-can-i-prevent-sunburn-naturally/
http://chronicallywhole.com/dear-doctors-may-always-use-powers-good/
https://thezebramom.wordpress.com/2017/06/19/autonomic-testing-what-you-need-to-know/
https://tipsforme.wordpress.com/2017/06/22/spoonie-pinup/
https://thedisableddivablog.com/2017/06/21/my-body-failed-to-meet-my-expectations/
http://livewithcfs.blogspot.co.uk/2017/06/weekly-inspiration-restorative-power-of.html
Hope you enjoy these and take time to leave a “like” or comment – and share some great bloggers’ work.
Claire x
“Why do you want to write a blog?” was my teenage son’s reply when I asked him to set this up. That’s as good a place to start as any.
On Friday, tomorrow, I am due at Guy’s hospital brightand early for a neuromodulation trial – the implantation of a spinal cord stimulator (a sophisticated internal TENS!) to help combat the chronic pain that I am suffering. I have read and watched various accounts online of other people’s experiences, but I want to try to put into words how this experience feels for me. I would like to share my journey (at risk of sounding like I’m on X Factor) with my friends and other fellow chronic pain bods – you know who you are – all to be known as my Pain Pals!
I will try to update you on my progress regularly, as well as adding elements of my history and the often strange and laugh out loud moments of a body disabled by pain.
So back to my son’s question……I think that I am writing as much for me as for the rest of you. To help to inform my friends and family, to get my own thoughts and feelings out and, if I can, to help anyone else out there who is living with chronic pain.
Nil by mouth shortly, early start tomorrow morning.
Thanks for joining me,
your pain pal, Claire
Turning chronic illness into chronic creativity
Stories about fostering and adoption
Personal experience of living with chronic illness when life is beginning
Living with disability, using personal experience for social change
The greeting card community company
Life With Chronic Illness
Living life with migraine, post-concussion syndrome and mental health
My Experience with Ulcerative Colitis - the good, the bad and the messy
My neuroimmune journey: PANS, ME, and POTS
Genuinity: a philosophical quest to make the world a better place
Thoughts of a twenty-something freelancer navigating her way one blog post at a time
Ramblings from a writer
Author, Poet, Storyteller
Welcome to the adventure, from the fun to the mundane and all that's in-between
PainPalsBlog 