Monday Magic – Inspiring Blogs for You!

March is here and the weather has been so mild that it has felt like near summer some days, and definitely spring.  The spring flowers are in bud, the trees are starting to change colour….and hay fever has raised its sneezy head in our house!  Hubby and the lovely girl both have runny noses and itchy eyes, probably from tree pollen and moulds so out with the nasal sprays and antihistamines again.

monday magic 4 th march

It has been a busy week – well at least for my limited world – with several consecutive nights out.  I saved my spoons by doing very little during the day and had a lovely night at the theatre to see Rock of Ages, followed by a mums’ night out and being taken to dinner by the young engineer and his better half!  The theatre trip was exciting as my favourite from Strictly Come Dancing, the wonderful Kevin Clifton, was appearing – not as a dancer, but as a singer.  Boy can he belt out a song!! The show is very slapstick and certainly made me laugh – and I must shout out for the New Wimbledon theatre making it a very easy and accessible visit for this wheelchair user.  There is a special entrance with a lift to take those with mobility difficulties directly to the stalls and this is where the wheelchair and carer spaces are.  We were able to order our interval ice-cream in advance to be delivered directly to us, and the accessible toilets were huge and well equipped.  How can I go from talking about the lovely Kevin from Grimsby to the loos?!

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Current Strictly champion Kevin Clifton in Rock of Ages

 

Our mums night out had been arranged and was the height of embarrassment to our 16 and 17 year old daughters who can’t understand why their mothers might possibly want to go out and socialise.  We ate, drank and chatted so well – not all about the girls! – that we were the last ones in the restaurant.  Speaking of restaurants, the young engineer took us to a well respected London steak establishment just off Regent Street at the weekend.  We drove and used the Westminster “Park Right” app to find a blue badge parking space – parking spaces of all types have a sensor to detect if they are occupied and this connects live to the app.  It worked! I’m not sure what I had expected, but finding an empty blue badge spot just off Piccadilly Circus seemed too good to be true!  The staff in the steak house were all helpful with the wheelchair and even said that they would put a ramp at the steps so that I could use the disabled toilet.  Everything was going so well until I got to the top of the ramp and then couldn’t open the heavy door into the toilet corridor…..oh well, they tried!

Of course since yesterday  I have found myself all out of spoons and the weather changed back to cooler conditions.  So a perfect day to find some interesting blog posts for you and I hope you’ll agree that there are some great reads here.  Enjoy!

 

https://migrainemantras.com/2019/03/03/voices-from-the-hill/

https://rachdowsonwilliams.blogspot.com/2019/02/exploring-town-i-love-so-much.html

https://www.beautifulmindlifecoach.com/2019/01/always-3rd-wheel.html

https://lisaorchard.wordpress.com/2019/02/24/are-we-the-indoor-generation/

https://carolcooks2.com/2019/03/04/pancake-day-5th-march-aka-shrove-tuesday-mardi-gras-or-fat-tuesday/

https://beetleypete.com/2019/03/04/the-right-thing/

https://ablondeinthecrowd.wordpress.com/2019/03/04/a-letter-to-me/

https://topladytalks.com/2019/03/04/to-retreat-or-not-retreat-a-review-of-our-accessible-meditation-weekend/

https://noreenlace.com/2019/03/01/special-needs-authors-and-readers-an-interview-with-patty-fletcher/

https://www.sizzlingtowardssixty.com.au/the-importance-of-downtime/

Please like, comment and share the posts you enjoy!

Have a great week,

Claire 

Monday Magic – Inspiring Blogs for You!

I can never believe how quickly Monday Magic comes around, but what I do know is that week after week I find just how many fantastic blogs and bloggers there are in the blogosphere!

Monday Magic 25th Feb

The stand out story for me this week was that of Tony Foulds, the Sheffield pensioner who has cared for the memorial to 10 US airman who, as a child, he saw crash in his local park.  The crew of the Mi Amigo attempted to land their damaged aircraft in the Sheffield park where Tony and his friends were playing, but when the airman waved to the children to move, the youngsters merely waved back.  It remains the biggest regret of Tony’s life that as an 8 year old he thought the pilot was waving to him, not at him to move, and thus flew the craft into woods where the plane crashed.  When a BBC journalist heard that Tony’s greatest wish was to have a flag pole and a fly past on the 75th anniversary of the crash, he set about making it happen.  Relatives of the Mi Amigo crew joined thousands of local people as Tony watched the US and British airforces fly overhead – one plane for each airman.  Every time I have watched, Tony Foulds has reduced me to tears with his passion and his firm belief in caring for the memorial of the strangers he calls family. (See the full story here: https://www.facebook.com/bbcbreakfast/videos/642676716166370/)

In our household hubby went to Cambridge with my brother who had treated him for his birthday to a Prog Rock weekend….not my cup of tea, but they had a good time listening to loud music (Steve Rothery of Marillion fame) and visiting RAF Duxford.

 

So that left me in the capable hands of my lovely girl – yes, a girls’ weekend! I would love to be able to report a time of shopping and clubbing – once upon a time definitely! – but it was more like artwork (hers not mine) and a film.  The weather has been beautiful for February, so we managed to get ourselves to my parents’ house under our own steam.  Now I know that friends who know us in person are laughing now and yes, it is the same road…..but yours truly had the very tricky job of steering the new motorised chariot out of the patio doors, down the ramp, along the side entrance and out into the street.  Then the local council have seen fit to install temporary traffic lights at the roundabout that separates our end of the road from theirs, so I had an unexpected negotiation and a girl getting very worried her mum was going the wrong way in the road!  Fear not – my driving skills are improving and I was able to report to hubby that we had made it in one piece and then I used the headlight he had fitted to guide us home in the dark.  Well, ok it is a bike light and the street lights were on, but it still means that I can be seen coming!!  But to be serious, I really enjoyed the feeling of independence which I hadn’t quite expected!

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I mentioned above that I have found some fab blog posts for you and some of these are from a lovely facebook group that I belong to – Sharing, Inspiring, Promoting Bloggers.  The first on the list is giving a shout out to Rare Disease Day, later this week on 28th Feb – please have a look at the bloggers who have shared their stories in part one of Despite Pain’s series.  Yours truly will be featured in the next episode talking about cauda equina syndrome – I will share this with you later this week.  Meanwhile sit back, grab a cuppa and enjoy!

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https://despitepain.com/2019/02/18/why-we-need-to-support-rare-disease-day/

https://wheelescapades.com/2019/02/21/12-frustrations-of-being-a-wheelchair-user/

https://ginlemonade.com/2019/02/13/house-hunting-as-a-wheelchair-user-other-stories/

https://yesterdayafter.com/2019/02/19/art-for-music-series-aurora-portrait-new-release/

https://jumpstartpositivity.com/simple-things/

https://youcanalwaysstartnow.wordpress.com/2019/02/18/dont-be-rigid-and-brittle/

https://collinscrohns.wordpress.com/2019/01/04/top-chronic-illness-books-and-blogs-of-2018/

http://angelanoelauthor.com/guest-post/published-elsewhere/out-of-my-comfort-zone-why-i-wrote-an-essay-that-scares-me-a-little/

https://anhistorianabouttown.com/six-the-musical-review/

https://myblurredworld.com/2019/02/24/online-world-accessibility/

Please like, comment and share!

Have a great week,

Claire x

 

 

Monday Magic – Inspiring Blogs for You!

Monday Magic 18th Feb

It is half term break already – how did that happen? It feels like school has only just gone back!  Anyway we and the lovely girl are doggy sitting for friends this week, whilst our own old boy, Sam, has his holidays at his human grandparents.  I’m not sure if I have mentioned before but he was a rescue dog many years ago and the one foible we have never got him over is his dislike of other dogs.  So he will enjoy a quiet week in a calm house being spoilt with his favourite breakfasts and gravy on his grits!!

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Sharing a chronic moment!

 

Last night, feeling slightly energetic, I walked Sam up the road to my mum’s house.  I say walked….I’m not sure who was the slower, me or the dog.  If we had been going any slower we would be stationary and hubby was alternately pushing and pulling us.  We dropped Sam off and then continued the slow amble around the block heading back home.  Now when we had left home I was quite spritely – for me – so pooh-poohed the need for my wheelchair, taking just my stick and feeling quite invincible.  Big mistake!!  Half way back (it really isn’t far), and whilst going downhill, one foot was completely numb and the kneecap on the other side had dislocated….double whammy!  By this point I had a fit of the giggles but hubby, who was inelegantly hauling me along the road, did not see the funny side.  No more outings for me without wheelie back up!!

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Photo by Charry Jin on Pexels.com

Talking of which the new car should be arriving soon, thanks to Motability agreeing to take back our current model so that we can have something that has a hoist fitted to take my new wheelchair.  Once I have figured out how to get it out of the house we will be sorted!!!  I am still waiting for an OT assessment which I hope will highlight the need for ramp access to the front door (amongst other things) – meanwhile we continue to encourage Sam to use the ramp outside the patio door rather than attempting, and failing, to jump off the side of it!

The young engineer is in San Francisco – a little bit of work, but mainly play.  I had a message to say that the Air b&b is “OK but doesn’t have a kitchen” to which my response was well he only knows how to prepare tuna with pasta so doesn’t really need one!  We have been introduced to the Forbes magazine lists this week – no I didn’t realise that they do the rich lists.  Anyway the young engineer and his business partner have somehow made it onto the Forbes 30 under 30 Europe Manufacturing and Industry list – the lovely girl is just staggered that her brother features on the same series of lists that Jess Glynn and George Ezra feature on (yes, yes..different category!).  Maybe one day it will be the rich list and he can keep his mother in the manner to which she would like to be accustomed….dream on, Claire!

 

Before I go I must introduce you to our fur babies for the week….Fred and Honey

 

and some fantastic blog posts from a variety of bloggers covering so many subjects.  So grab a drink, relax and enjoy!

https://www.achronicvoice.com/2019/02/13/twitter-tips/

http://theinsiderviews.com/2019/02/is-pilates-for-you.html/

https://www.radiantnubeginnings.com/one-size-doesnt-fit-all/

https://thechronictraveller.com/2019/02/06/chronic-illness-and-the-well-of-despair/

https://www.cbdhacker.com/cbd-for-inflammation/

https://esmesalon.com/2019-wednesday-interview-series/

https://pamelajessen.com/2019/02/17/fibromyalgia-and-loneliness/

https://justmuddlingthroughlife.co.uk/2019/02/17/children-again-poetry-challenge/

https://www.healthyeatingexperts.com/top-12-spring-superfoods/

https://theinspirationlady.com/self-care-ideas-for-highly-sensitive-people/

Please like, comment and share – spread some love!

Have a great week,

Claire x

Monday Magic – Inspiring Blogs for You!

This is the week of love with Valentine’s Day fast approaching – red hearts, champagne, velvet wrapped boxes of chocolates and of course red roses.  The shops are adorned and the internet is overflowing with suggestions of how to spoil your loved one.  The thing that I would just love for myself is a week of sleep.  Forget being wined and dined, fancy foil balloons or expensive flowers…..the secret to unlocking my heart is to give me sleep!!

Valentine Monday Magic

Seriously I need to find some self love this week after a week of sleep deprivation.  I never sleep brilliantly, but this week has felt like working night shifts again.  I no longer panic in the night, but read from a dimly lit kindle or listen to dramas on the BBC radio iplayer or play soothing sleep mixes on Youtube.  The problem comes half way through the next day when jet lag hits and after 3 sleepless nights this week it has well and truly hit!!  Thursday night was one of these nights, but I didn’t drop off to sleep until Friday afternoon.  By the time hubby woke me at nearly 7pm it was time to go out to play…..a takeaway with some close neighbours.  Curry for breakfast – can’t remember the last time I did the equivalent!  We had been tasked with taking liqueurs and wine – easy.  Unpacking the bag when we arrived we had red wine, white wine, limoncello, espresso liqueur, coffee cream, sambucca, oxynorm……what???  Oh no, don’t panic, just a little something for Claire and her pain!

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Photo by Pixabay on Pexels.com

Something that did cheer me up this week was reading that chocolate shaped as hearts is calorie free…well, who knew?  This is something that I am totally believing for the whole week, so come on hubby remember how the lovely girl and I have always woken up to a chocolate heart on February 14th?  I promise never  to say again that snoring from the other side of the bed requires noise cancelling headphones!

turned on black samsung smartphone between headphones
Photo by Vlad Bagacian on Pexels.com

 

I haven’t given you a list of lovey, dovey red heart posts, but rather a diverse selection of blog posts.  They range from the breakfast pizza, to giving empowering compliments to girls to random acts of kindness.  My favourite has to be the slow cooker fudge brownies – there is a situation where the stomach rules the heart.  So sit back with a cuppa, or maybe a glass of something bubbly and enjoy some great blog posts.

 

https://www.theworldseesnormal.com/the-world-sees-normal/10-things-to-remember/

https://www.samsplaces.com/2019/02/bacon-egg-cheese-breakfast-pizza-recipe.html

https://justmuddlingthroughlife.co.uk/2019/02/08/10-tips-help-ease-stress-children-being-mum/

https://sweatpantsandcoffee.com/empowering-compliments-girls/

https://catchyourbreath60.com/february-is-heart-month-copd-and-heart-failure/

https://passionfruitpawsandpeonies.com/9-books-for-a-more-positive-2019/

https://lifeattheintersection.com/2019/02/11/practice-for-random-acts-of-kindness-day/

https://esmesalon.com/how-to-actually-chill-so-you-dont-burnout/

http://www.looneyforfood.com/slow-cooker-fudge-brownies/

https://www.unboundroots.com/my-heart/

 

Please share, like and comment to show how much you appreciate these bloggers!

Have a great week,

Claire x

 

Monday Magic – Inspiring Blogs for You

So  you have probably already noticed that this is a day late, but somehow after reading and scheduling posts as admin for a Facebook group (Chronic Illness Bloggers – there are some seriously talented writers over there!), finishing a book review and just family life, I ran out of time yesterday.  But I have found some great posts so thought I’d share them today!

person using typewriter
Photo by rawpixel.com on Pexels.com

This last week I have taken advantage of the cold weather and being sofa bound by catching up with reading blogs – I have managed lots of sharing but have been a bit rubbish at posting comments, so I apologise to my fellow bloggers.  Do you know that the nominations for the 2019 Bloggers’ Bash Awards are now officially open?  There are some great new categories this year so take a look and make sure you nominate your favourites!! You may even decide on someone in the list below – there is a great variety and some are new to me.  I particularly enjoyed the Verve View post about the good side of social media and the post from Sonja “Shh – don’t tell” made me laugh out loud….I think that all parents will be able to relate to it.  If anyone is in need of some pampering have a look at Brooke’s beauty product favs, or if like me you need to declutter then Shelley’s post about the Marie Kondo way might be better…..it would be so much easier if only the rest of the family understood what I’m trying to achieve!!

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Monday Magic -5:2:19

 

A high and low point of the week was the last part of the BBC adaptation of Victor Hugo’s Les Miserables – high as the series has been fantastic, low as it was the final instalment.  How will Sunday night measure up now?!  If you have access to the BBC iplayer and haven’t seen it yet….it is well worth watching.  The actors, costumes, set designs, make up (how did they make the beautiful Lily Collins look so awful?) are all wonderful.  Those of you thinking “I hate musicals” be assured that there is not a song to be heard – unless you count young Gavroche’s odd little ditty here and there.

Les Miserables - Generic Portraits
Les Miserables cast – from Radio Times

 

I’m keeping the preamble short today, having given you a long book review yesterday, so grab a cuppa, sit back and enjoy some great reads!

 

https://ginlemonade.com/2019/01/11/my-wedding-dress-my-wheelchair-me/

https://mymedmusings.com/2019/01/26/my-key-to-living-well-with-chronic-illness/

https://verveview.com/2019/01/30/sunflowers-and-social-media/

https://brookeclarke.com/beauty/my-favourite-beauty-products-of-2018/

https://jumpstartpositivity.com/refresh-your-mindset/

https://ohmrstucker.com/how-to-like-who-you-are/

https://holdmamashand.com/2019/02/03/shh-dont-tell/

https://darlenefoster.wordpress.com/2019/02/01/ghosts-in-the-attic/

https://lifeatno22.com/2019/01/31/what-happened-to/

https://motivatemenow.co.uk/theme-of-the-month-de-cluttering-the-marie-kondo-way/

Have a great week,

Claire x

 

Monday Magic – Inspiring Blogs for You!

There have been two big events in our household this week.

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monday magic 28th jan

The first has been the lovely girl having braces fitted, following the removal of a couple of teeth the week before.  A common problem associated with hypermobile Ehlers Danlos Syndrome is dental overcrowding due to a high arched and narrow palate.  I had 6 teeth removed as a teen and for a while sported a lovely pair of fangs as teeth erupted from the wrong place.  Both my boys have inherited my narrow face and dental overcrowding – the young engineer required surgery to open his gums to expose teethe and apply chains to them which were then attached to braces, the politics student had teeth removed and braces.

With her different bone structure we thought the lovely girl had missed this particular joy of EDS, but it was not to be.  Her last trip to the dentist resulted in a “dental emergency” as he said she needed baby teeth removed urgently and orthodontist treatment asap……oh and Merry Christmas.  This rather extreme reaction (I mean I didn’t know there was such a thing as an orthodental emergency!!) was probably down to the fact that the dental surgery had forgotten to make a referral 18 months ago, but I just assumed she was still on on the waiting list.  So the lovely girl is about 2 years late at 16 to be having braces and will need the same surgery as her eldest brother.  She has made little fuss, but was ashen the following morning and is now sporting a very sore mouth.  Her lovely brother of course fed her lots of horror stories!!

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The second big event was Burn’s night and the annual celebration of all things Scottish at the lovely girl’s school.  This year we took mum and her friend, along with two other couples to add to our number and swell the tartan brigade.

A wee dram of whisky sour started the night of nicely followed by the piping in of the haggis and the traditional Robbie Burn’s toast  – delivered beautifully by a Scottish teacher fully decked out in kilt and sporan.  Now hubby was half decked out, having borrowed a jacket and bow tie from our friends’ son…..he wasn’t brave enough to try the kilt though!

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Whisky Panna Cotta with raspberries

Haggis with tatties and napes, followed by whisky panna cotta went down very well to be swiftly followed by a Scottish reel or two!!  This is the part of the evening that brings mixed feelings as once upon a time I would have been the first on the dance floor, but must now be content to watch…….but the best part is sitting and watching everyone go the wrong way, bump into each other and screech with laughter.  At one point I swear that the group mum and hubby were dancing in were doing a completely different dance to the rest of the hall.

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Confused??

Granted it was nigh on impossible to hear what the caller was telling them to do…..but at times there was not a dry eye in the house with all the laughter.  Maybe next year I will have my motorised wheelchair sorted and be able to literally run rings around them – can’t transport it until our new Motability car arrives!

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Got it! Hubby with friend

I think that the majority of these blog posts are new bloggers to Monday Magic this week and vary from recipes to writing tips to self care/health posts.  There is even a post for all you introverts out there.  I really hope that you enjoy these as much as I have – so grab a cuppa, sit back and read some great posts!

http://theseatedview.com/2019/01/from-helplessness-to-hope-with-chronic-illness-5-strategies-to-push-back-depression.html

https://chronicmomlife.com/things-you-should-not-say-to-a-special-needs-parent/

https://www.autonomicrn.com/2019/01/20/a-little-nursing-therapy/

https://jumpstartpositivity.com/introvert/

https://khmerkronicle.blogspot.com/2019/01/3-things-i-learnt-in-2018.html

https://glutenfreecuppatea.co.uk/2019/01/23/oven-baked-gluten-free-arancini-recipe/

https://www.writerscookbook.com/how-to-stop-overthinking-your-writing/

https://bloggerstrafficcommunity.com/take-to-be-a-successful-blogger/

https://thrivewithjanie.com/steps-to-attaining-your-health-goals-in-2019/

https://www.heatherleguilloux.ca/blog/review-gratitude-guide-7-days-to-a-grateful-heart/

https://bestwishestaylor.com/healthy-lifestyle-affirmations/

Please comment on, like and share these blogs!

Have a great week,

Claire x

 

Some Ramblings for January Prompts with A Chronic Voice

Every month I have great plans to take part in link up parties and then life seems to get in the way of writing.  One link up that I particularly love is Sheryl’s on A Chronic Voice where she gives prompts aimed specifically for people living with chronic illness to express themselves and share experiences.  January seems like the perfect month to join the party again…..so here goes!

january prompts

Dedicating

This is a great prompt for a new year isn’t it?  It could also be very cheesy!

I think that I would like to be dedicating more time and energy to working with fellow bloggers this year.  Sometimes I see others who give so much of their time to commenting on and sharing the writing of others (Sheryl at A Chronic Voice, Caz at Invisibly Me, Esme at Esme Salon, Sue at Sizzling Towards Sixty – to name but a few) that I feel a bit inadequate in my feeble attempts.

So maybe I should say that I will try dedicating my own time to working effectively and to stop procrastinating.  I had a teacher at school (Latin) who used to ask us “what is the thief of time” to which we 11 year olds would chant “pro..cra..sti..na..tion” without having a clue what it meant. Sir…I get it now!!

 

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Establishing

I really need to start establishing some proper self care routines that will see me through both the good days and the bad days.  For me self care revolves around reducing stress levels, which in turn will help keep the pain at bay.   At the moment “self care” – healthy eating, regular exercising (in our neighbours’ gym – so lucky!), pilates, meditation, mindfulness, rest etc etc – or maybe I should just say putting myself first in my schedule, well it seems to come way down the list of priorities and almost feels rather decadent.

 

love begins at home

Breaking

I’ve written before about chronic pain and illness being my constant companion and there are so many times that it feels like my companion is putting up barriers for me or tying me down in knots.  I want to be breaking through barriers and ties, physical and mental, that are holding me back and stopping me from feeling like the person I used to be, being the person I can be.

 

barrier

 

This might mean breaking some of the rules that I self inflict and wrap myself up in – one is the need for a clean, tidy house!  The biggest problem is that my idea of clean and tidy does not quite match with the rest of the family……this causes me more stress than anything else, and whilst I will try to be more laid back, this will be a tough one for me to break!

Breaking crockery is also something I’d like to do less of in my kitchen!!  Dislocated wrists and thumbs frequently equals dropped plates and mugs……BREAKING!!

Strengthening

Strengthening has to apply to my core!!  Whilst I was still mobile and fit, I practised yoga daily and attended classes several times a week, and had even been asked to train as a yoga teacher by my teacher!  My back has been troublesome ever since my surgery aged 21, so it has been important to keep my core muscles strong to support my weak back.  I wouldn’t boast a 6 pack, but I had a very flat stomach which pinged back after each of my 3 caesarian sections!  But….since turning 40 and my mobility and health have gone into free fall, those core muscles have gone into hiding……apparently muscle memory is a thing, if I can only coax them out.

 

stomach

Allowing

I am not very good at just allowing myself “to be” – to accept my own limitations that come with my condition, to acknowledge the bad but to celebrate the good.

I want to allow myself to take a rest without beating myself up; allow myself to say “no”; allow myself to sit and just be without feeling guilty.  Most of all I want to allow myself to accept my conditions, warts and all – accepting is not a weakness, I believe it is a strength and liberating!

 

to be

 

So there we have it – my ramblings to add to the thoughts and writings of other bloggers that can be found here on A Chronic Voice. I hope you enjoy them all.

Update….as I type I have a new cleaner in the house – a lovely lady who works for a friend who said she could fit me in…..hurray.  Now I just need to make sure I don’t fall into the trap of cleaning before she comes – just nagging the kids to make sure that the floors in their rooms can actually be seen to vacuum!!

Claire x

Monday Magic – Inspiring Blogs for You!

How often do you have those weeks when life seems to have sped by and yet you’re not sure what you have done in that time?  I made a birthday cake with a robin theme – birds that is…..not Batman or Bristol City football club (me to hubby: “why on earth would I make a 7 year old little girl a Bristol City football club cake? She’s not a football fan and lives nowhere near Bristol” – he supported them as a child and still does!).  img_0349We went out for a family Chinese for hubby’s birthday as my brother and nephew were here – this birthday rolls on and on. I started another blog post – wrote the majority of it in fact, but never quite got it finished (one for later this week) – and I cancelled plans a couple of times. Oh….and I had several sleepless nights.

alarm clock analogue bed bedroom
Photo by Pixabay on Pexels.com

It never fails to amaze me just what sleep deprivation can do and when that insomnia is down to pain the resulting fatigue and drain is even worse.  Now I look back at the many sets of night shifts and then a period working continuous nights when the kids were young and wonder how I did it….much like any other shift worker.  The constant tiredness must be akin to constant jet leg, but without any promise of far off sunny climes!  I did get phone calls from school on more than one occasion back in the day when I had slept through my alarm and failed to pick my kids up from school.  It is one thing dropping off at 8.30am in your PJs and boots, but quite another thing picking up inn your dressing gown at 3.30pm!

monday magic inspiring blogs for you! (4)

 

My own blog may have failed to spring any new writing over the week, but I have managed to read some great posts that did make the light of day.  I have found some great new and very different bloggers on a couple of meet and greets (Danny’s Dream Big Dream Often and Esme’s Senior Salon) as well as some familiar faces.  So sit back, enjoy some you time and get stuck into some fabulous reads.

https://tinybuddha.com/blog/how-going-offline-for-10-days-healed-my-anxiety/

https://michelemorin.wordpress.com/2019/01/17/standing-on-the-edge-of-inside/

http://www.christafairbrother.com/my-word-for-the-year-courage/

https://pinkfortitude.com/random-acts-of-kindness/

https://italiangoodness.net/learning-how-to-cook-italian-food/perfect-risotto/

bowl chinese close up cook
Photo by Pixabay on Pexels.com

https://treesmendus.com/4-unexpected-tips-for-living-longer-with-chronic-disease-i-want-trees-please/

https://amykinsblog.wordpress.com/2019/01/20/dust-of-snow/

https://lifeattheintersection.com/2019/01/21/what-can-white-people-do-to-support-racial-justice/

https://everydayaspie.wordpress.com/2019/01/21/a-stranger-in-my-home/

https://spiritualdragonfly.wordpress.com/2019/01/19/growth-%F0%9F%8C%B1/

Please like, comment and share!

Have a great week,

Claire x

Monday Magic – Inspiring Blogs for You!

We are already half way through January and in the PainPals house this means that a significant birthday has been celebrated by the hubby.  I couldn’t say anything in my last post as I had booked a surprise weekend away and he reads these blog posts!

monday magic inspiring blogs for you! (3)

For those of you who know me or live with a chronic health condition yourself, you will know that planning any sort of trip away is tricky.  The variability and unpredictability of symptoms and general wellbeing can make it difficult on a day to day basis – so it felt like a risk to book a trip away and I wasn’t confident enough to look too far afield.  We haven’t taken a holiday abroad since before I was disabled from work, and an annual holiday is a thing of the past for many reasons.  So it was with some trepidation that I plotted with the family and arranged a couple of nights away in a haunted 15th century inn on the coast in East Sussex.

Hubby had no idea!  We all managed to keep it a surprise and let nothing slip, only letting on the night before we left.  I had seen a review on the Mermaid Inn, Rye on Kerry’s blog Kerry’s Life and Loves and fell in love with the history and photographs of this historic hotel and town.  “How on earth will you manage on the cobbles and all those hills?” asked my mum, alongside a nagging little voice saying the same in the back of my head, but the bloodyminded side of me was determined to enjoy just a couple of days.  Sometimes it is so important to throw caution to the wind and let the chronic illness take a back seat, whilst “normal” life takes over! The inn is everything that Kerry promised – steeped in history, former residents include Elizabeth I, Shakespeare and Elizabeth the Queen Mother to name but a few, and the beams, low doorways and open fires are all other worldly.  The maze of tunnels beneath and around the inn were thought to have been used by smugglers and it is rumoured that several inhabitants are of the ghostly variety!  No strange happenings on our watch….

Hubby was in for another surprise as we were shown to our room – he was not going to be allowed to forget his special age with the enormous helium balloons that the young engineer had arranged.  With the low beamed ceilings they took up nearly the whole room….did I mention that he had also arranged for a bottle of champagne to be chilling?!

 

 

We had a wonderful meal in the restaurant and the staff were all friendly and accommodating – even if they did wonder why this woman who was struggling to walk had booked to stay in really old building with steep stairs and no lifts!!  I managed though….even walking for some of the day in Rye on Saturday.  A word of warning – Rye with its cobbles and hills really is not wheelchair friendly!

 

I still find it frustrating that I couldn’t manage a whole day out and we spent Saturday afternoon watching a film in our room, but pacing is the name of the game.  This allowed me to go out for dinner Saturday night – to a lovely new restaurant called The Devil in Rye, which overlooked the gardens and walls of the ancient monastery – and then we spent the rest of the evening listening to jazz in a neighbouring Champagne & Jazz bar.  So grown up, nearly sophisticated and great fun.

 

It is a shame that I then slept for long periods on Sunday and all this morning, but sometimes it is worth using up all those spoons in one go.  So Monday Magic is teetering into Tuesday as I catch up from my slumbers……but I have found some blogs for you (even one about Elizabeth I) and hope that you will sit back and enjoy!

https://www.radiantnubeginnings.com/smile/

https://helensjourneysite.wordpress.com/2019/01/09/wellbeing/

https://despitepain.com/2019/01/11/how-to-help-doctors-listen-and-understand-better/

https://invisiblyme.com/2019/01/10/12-life-changing-reads-2019/

https://playdatesparties.com/how-to-get-motivated-to-clean-when-overwhelmed-by-mess/

https://www.eclecticevelyn.com/include-yourself-in-your-schedule/

https://notesfromtheuk.com/2019/01/11/professional-hazards-of-being-a-virgin-queen/

https://christiehawkes.com/forgiveness-starting-2019-with-a-clean-slate/

https://wehavekids.com/parenting/Encouraging-Children-to-be-Independent

https://www.momfever.com/2019/01/a-positive-way-to-look-at-january.html

Please follow, like and share these bloggers! By the way we somehow managed to wedge the balloons in the back of the car, around the wheelchair, and they are now adorning the lounge!

Have a great week,

Claire x

 

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!