Midweek Magic – and some Inspiring Blogs for You!

It has been a momentous week for several reasons.  Hubby and I were planning a trip to visit his parents and true to form I was so unwell at the beginning of last week that it was looking like we would have to cancel….yet again.  I am ashamed to say that it has been over 3 years since I last managed the 4 hour journey, in fact it was when I stayed with them after my spinal cord stimulator surgery.  Please believe me when I say that it is not that I don’t love my in laws but rather that every time we have planned a visit my body has disagreed.  There have been shoulder dislocations, POTS flares and neck problems – not forgetting that my chronic back pain prevents me from sitting still for long periods.

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Midweek Magic Inspiring Blogs for You! 22 Aug

Something that goes hand in hand with a chronic illness is unpredictability and then the inability to make plans – and the guilt at having to break plans.  So when Tuesday morning dawned and I couldn’t sit upright, I felt that I had let everyone down yet again.  Wednesday arrived and we decided to give it a go.  The electric wheelchair was hoisted into the car, I was settled in surrounded by cushions, an Audible series was downloaded and we were away.  It wasn’t an easy journey, but I made it even if I did have to swap one sofa for another!

IMG_2418I had a different furry friend to keep me company following a faint – Lexi the pug – and I enjoyed the freedom that my electric wheels gave me during a trip into Hereford city centre.  My driving skills are improving!  IMG_0605With the weather breaking in the UK my symptoms are more manageable now and the fainting is under control – would you believe though that the wet, clammy, stormy weather causes as many problems with this body barometer of mine as the really hot days?!

 

 

 

 

 

This week the lovely girl started work experience with big brother, the young engineer.  How I wish I could have been a fly on the wall!!  He wants her to help with design elements of…….um, I wish I knew or understood!

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It seems to have gone well, but she laughed in the change in her big brother as soon as they got home reverting from boss to twit!  The whole family has enjoyed playing with my latest toy that arrived this week – a recliner chair which has already saved me during a POTSie episode today as it will lay me almost flat.  The young engineer was so excited by the integral USB port that he almost face planted on the floor when lifting himself to standing too far!! I will give you a chair review when I have had it for a couple of weeks.

So back to business and sharing some great blog posts with you.  I have found a couple of posts about writing – for lovely Ritu the publication of her novel is in sight (if it is as good as her cakes it will be fab) – tips to boost your family’s health, and some lovely posts from chronic illness pals.  So sit back with a cuppa and enjoy!

https://www.therollingtwenties.com/2019/08/love-to-write-part-3.html

https://ritubhathal.com/2019/08/20/when-it-all-gets-a-bit-too-much/

https://livelovetexas.com/homemade-apple-cinnamon-sugar-scrub-recipe/

https://hughsviewsandnews.com/2019/08/12/blogging-with-a-little-help-from-your-friends-a-guest-post-by-sherri-matthews-writersherri/

https://www.realisticoptimism.org/post/can-exhaustion-work-for-you

https://www.angiecruise.com/how-to-boost-your-immune-system-naturally-before-school-starts/

https://crazychroniclife.wordpress.com/2019/06/25/a-pep-talk-to-myself-and-anyone-else-that-needs-it/

https://bucketsoftea.co.uk/happiness/five-things-to-put-a-real-smile-on-your-face/

https://chronicrants.com/2019/08/21/would-it-be-different-if-i-werent-a-woman/

https://positivelyrachel.com/2019/08/14/mindful-impact/

Please make someone’s day with a like, a comment or a share if you enjoy their post!

Have a great week,

Claire x

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Midweek Magic Inspiring Blogs for You! 1 22Aug

 

 

 

 

May Day Magic – Inspiring Blogs for You!

Another week and here we are in May – so it seems perfect to have a little May Magic as Monday came and went this week!  It has been a perfect day in south London – sunny, bright and mild – what better way to start the month.

May Day Magic 1

Hubby is away this week with the year 5 classes for an “outward bound” style activity holiday – or to put in in layman’s terms…..archery, hiking, zipwires, pylon climbing and more with 60 nine and ten year olds.  Of course hubby has the boys’ dorms under his care after the activities finish for the day, and his comment to me on their first night was “I knew it was going to be challenging when we started our first task of bed making and one of them actually said ‘what’s a duvet?”!!”.  They usually arrive home with damp kit, a bit smelly and absolutely shattered…..and that is just the adults.  This year they have a bank holiday weekend to recover and I know that the adults will appreciate the extra day for R&R.

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Photo by Lum3n.com on Pexels.com

This leaves me at home with my offspring.  The eldest has just returned from a surprise birthday weekend away in Dublin – lovely treat from his better half – and is now looking forward to the first package in his gift from us…..a subscription to Pong Cheese Club.  Watch this space for taste testings!  My main carer for the week – the politics student – is nearly as much help as a chocolate teapot as he has succumbed to Ehlers Danlos Syndrome and dislocated his knee during a footie kick around.  He managed to relocate everything to the correct position – you get used to doing this with EDS – but now cannot walk, despite my best efforts with tubigrip, a brace, crutches and painkillers.  We must have made a strange looking team as we put the rubbish out today…..him on crutches, me in a collar and sling – there is definitely a joke in there somewhere about the number of dislocations in a household of zebras!!! (Why the zebra?)

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I started saying what a beautiful day it has been and this led me to a big achievement, namely my first solo trip out in my electric wheelchair.  It has been a while coming, but today I was due to visit my friend for a haircut and whilst mum waled there with me, I came home alone.  I know that it sounds crazy for a woman of a certain age to be excited to get home under her own steam, but having that little bit of independence back after so long was both exciting and terrifying in equal measures.  Fingers crossed that over the next few months my joystick control and pavement driving improves – it is very hilly here, but I have good brakes!!

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There is a great selection of spring blog posts here and one in particular is close to my heart, as I was a specially trained head and neck cancer nurse in a previous life.  The final listing is from Angela, and I think will strike a chord with all bloggers as she explains to her nearest and dearest that it is ok either way if they read her writing or not.  So sit back with your favourite tipple and enjoy!

 

https://youcanalwaysstartnow.wordpress.com/2019/04/15/soul-sunday-i-did-it/

https://fullofgritandgrace.com/2019/04/20/self-care-ideas-that-are-also-earth-friendly/

http://www.denysewhelan.com.au/denyse-blogs/new-normal-for-me-with-head-neck-cancer-43-2019/

https://crunchandcream.com/single-serving-brownie-in-a-jar/

https://retirementtransition.blog/2019/04/22/how-do-you-listen-respond/

https://www.crestingthehill.com.au/2019/04/where-to-from-here.html

https://veroniiiica.com/2019/04/29/ten-odd-things-i-do-with-double-vision/

https://tayler.silfverduk.us/the-best-way-to-heal-your-gut/

https://jboccupationaltherapy.co.uk/hypnot-session-1/

https://angelanoelauthor.com/inspiration-motivation/read-this-or-dont-either-way-i-still-love-you/

Please share some love and comment, like and share these posts.

Have a great week,

Claire x

May Day Magic

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 

My first forays with Motability

A little while ago I mentioned my face to face medical review for my Personal Independence Payment and I had convinced myself that my standard rate would be reduced to nothing.  I was geared up to go to panel and fight my corner, sitting here awaiting that dreaded brown envelope.  When it did flop through the letterbox, I couldn’t even open it, I felt that sick!  Duncan did the honours…..and I was stunned and delighted in equal measure to find that I have been awarded the enhanced rate for both mobility and care needs.Motability Forays

Of course I should be on this rate as my health has deteriorated so much in the last couple of years, with Ehlers Danlos zebras galloping at full pelt through my life.  But the system is such that the applicant is made to feel they need to prove that they can’t jump through those hoops the DWP want us to.  Anyway it has taken a couple of weeks to sink in, and to investigate the benefits to using the Motability Scheme  – “The Motability Scheme enables disabled people to get mobile by exchanging their mobility allowance to lease a new car, scooter or powered wheelchair“. Last week Duncan suggested a trip to Peterborough – which initially didn’t thrill me – but it was actually to a Motability show….again probably not my first choice for a day out!  But I arranged the impromptu visit to our friends that I wrote about on Monday Magic, and this would mean only driving one way on the day so off we went.

I must explain that Duncan used to work in the motor trade, so our car has always just turned up, sometimes been sold, often changed at a minute’s notice, but I have never really had anything to do with choosing a car.  Of course this time our needs are very different and actually it was very helpful having many of the manufacturers who take part in the scheme under one roof.  The volunteers for the Motability charity couldn’t have been more helpful and there were plenty of them handing out goody bags full of useful information.

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The exhibitors included motor manufacturers, mobility scooters & electric wheelchairs, and companies who adapt the vehicles to your needs.  We were able to book a test drive – although only in one vehicle as slots were limited and had been booked up by lunchtime.  For us the real value was trying the vehicles for size without trudging from one showroom to another, and I have to admit that I hadn’t realized just how difficult it would be to find a car boot that would accommodate the wheelchair alongside shopping bags for those retail therapy moments, or a dog!

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Boot mounted wheelchair/scooter lift in action

The MPV type vehicles that don’t require a large down payment just did not give us enough boot space, and we actually could not fit the wheelchair into one jeep  – it is important to remember that this car is not yours, it is effectively a leasing agreement albeit an excellent one, so long as you don’t spend out too much in the first place as the car is handed back after 3 years.

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Ramp adaptation for wheelchairs & scooters

However the sky is the limit and if you want to put down a large payment intitially, it is possible to have a plush car with all the trimmings – all down to personal taste & finance.IMG_20170909_133122830

Having said this, we discovered that there are some excellent deals with some requiring little or no down payment for a really great car.  The show definitely helped us to understand what we didn’t want/need and has ultimately this week helped us to choose and order a car that fits my needs on the scheme.  With my back problems and the spinal cord stimulator, the seat position and shape is the most important thing – particularly the headrest.  The electrode in my back which helps to control my chronic pain is very positional, so I only have to have a headrest in a car or the cinema push my neck forward, and Bang! the scs might IMG_20170909_133108400just as well be turned off as I can no longer feel it.

Sadly the downside is that when my new shiny, estate car (yes, an estate that accommodates my wheels, my shopping and the dog!) arrives, I currently can’t drive it!

 

Little post script……I saw a couple of great looking electric scooters too.  My fave was the Genny, but at £16k it is just not going to happen; but I wonder if any of you out there have this nifty little number – the Go Chair ?IMG_20170909_161956070_HDR

Enabling rather than Disabling – A great post from I Told You I was Sick….and inspiration from a great little boy

I have just read a great piece on Jaime’s blog “I Told You I was Sick” and as someone who was given a walking stick – albeit a pink, sparkly stick – for her 40th birthday and now has a variety of aids including 2 wheelchairs about the house, this rings so many bells. Earlier in the week I watched a BBC programme called The World According to Kids and one delightful 9 year old boy was meeting his a wheelchair for the first time.  This little lad has a very rare form of dwarfism and whilst fiercely independent, he is now getting pains in his legs when walking any distance.  This prevents him from joining in with his family, taking part in activities with his friends and he described feeling sad that he had to be different.  This lovely boy is truly inspiring and actually had me in tears.

It was during this that my lovely girl, who is starting to experience more subluxations and pains herself, said that she really wished that everyone could see mobility aids such as wheelchairs as “enabling rather than disabling”.  Wise old head on young shoulders – that is my 14 year old!  She has seen first hand what a difference wheels have made for me.  So, please have a look at this great blog post:

Anxious about considering a mobility aid to help you get around? The thought of your disease or condition getting to a point which requires mobility help can be heartbreaking. And, especially if you are younger, the embarrassment or ridicule you anticipate for having to use a mobility aid might be hard to swallow.

Remember:

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Find the rest of the article at this link:   8 Signs a Mobility Aid Could Improve Your Life