Monday Magic – Inspiring Blogs for You!

Welcome to another week and to some more great blog posts!  It has been a busy week in our household and some of you might have seen my post about moving one son home and the other off to university.  Funny how Duncan and I have both woken up with splitting headaches this morning…..the only extra comment today on the move to Nottingham, is how can a supposedly bright young man arrive in his room at university and have not packed a single pen in his luggage??

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We have also celebrated my daughter’s birthday this week and we did wonder what we were letting ourselves in for when we agreed that she and her friends could have an evening at home….pizza, popcorn, films.  Eleven girls, aged 15 & 16, on a school night – how hard could it possibly be?  Actually it was easy….but extremely loud!  The girls restored my faith in teen friendships, having heard about various fallings out in girls’ groups and bitching recently. My girl is always very concerned about her friends and tends to be the problem solver in the group, quietly trying to keep the status quo between the more vocal characters.  There have been some subtle changes in the group dynamics recently, but I can honestly say that this particular group is kind and caring.  They had made her a wonderful “Pride striped” birthday cake and arrived with a personalised balloon.  Long may it continue.File_000

 

Last night I watched the opening of the Invictus Games in Canada, and yet again I was unable to stop the tears.  How can we not be moved by these service men & women from across the globe, who have been so badly physically and mentally injured serving, yet have pulled themselves back from the brink to represent their countries again? A very different theatre undoubtedly, but the courage, strength and sheer bloody mindedness is inspirational. It does make me wonder what I have to complain about…..am I trying hard enough….but it is all relative.  However I was inspired to get some physio done in next door’s gym this morning! Monday Magic - Inspiring Blogs for You!

So whilst we are on subject of inspiration, I hope that you will enjoy this selection blog posts that I have put together this week…..a mixture of chronic illness, motivation and even preparing your own coconut oil (the photos on this post are fanatastic!).  So time to get that drink, sit down and enjoy!

https://motivatemenow.co.uk/2017/09/18/how-to-create-a-more-fulfilling-future-blog-series/

https://blondieaka.wordpress.com/2017/03/24/how-to-make-your-own-coconut-oil/

http://thedailymanic.com/manage-life-change-future-unknown/

http://xofaith.com/3-epic-reduce-stress/

https://www.mymeenalife.com/surprising-things-diagnosed-with-lupus/

http://alifewellred.com/3-ridiculously-easy-ways-save-money-holiday-season/

http://coffeeheartmind.com/meet-ivy/

http://mini2z.com/after-the-storm/

https://alifelessphysical.com/2017/09/24/perfect-presents-for-people-with-chronic-pain/

http://www.jennavon.com/?p=584

Please comment, like & share these posts, and support your fellow bloggers,

Claire x8

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The Stresses of going to University for a Chronically Sick Mum!

I did it!  I survived the week in which the eldest child moved home and the middle one left.  Of course I have to point out that these are not sweet little children any more, but big, hairy men of 21 and 18 who have gathered the clutter of young adult life.

The eldest decided that it will be more cost effective to live at home for his fourth and final year, after paying the high costs of central London living for the past three years.  At the moment I am undecided who is going to find his return home hardest, him or us! His sister was distraught to find he was coming back – she thought that she would be free of both brothers….not one going and one returning!  Her plans to spread the art studio into his bedroom have been thwarted.  He has lived with the bright lights for three years, with only himself to consider (well, and the odd flatmate), whilst we have got used to having a spare room, a varied diet and no concerns about what time he is rolling out of London’s night spots, because out of sight out of mind, right?!

Stresses of Uni

He has already created havoc by deciding to decorate his room before moving back into it – but this has involved emptying said room onto the landing and then moving his flat contents back into the house, which are of course in the hall!  We cannot move for cases and computers and furniture.  So when son number two should have been packing up ready for his imminent departure do you think we could find empty cases?  Actually I don’t know why I am saying “we” as it was very much “I” – if it had all been left to him I’m not sure he would be there now!

This morning on waking with pain and fatigue running through everything, yes even my teeth, I concluded that this going off and coming back from university is pretty stressful.  “But it’s not even you, Mum!” each boy will shout at me, with no understanding that for me the decision to use up all my physical and mental resources, or spoons as we chronic community say, to ensure they are safe and sorted is a no brainer.  The journey from south London to Nottingham was hideous on Friday – there was an accident on the motorway needing an air ambulance, a huge detour and then arrival in the city at rush hour.  The B&B that I had booked, whilst fantastic in that we had a self contained flatlet, proved to be on a nightmare hill and in a huge Victorian house…and you guessed it our apartment was in the basement.  Not for the physically challenged – I needed my wheels by the time we got there – and also not for those trying to adjust to a brand new pair of varifocal specs.  So our arrival in Nottingham saw hubby in his new specs (he has never worn glasses before) trying to help me with my completely dead leg and back pain down a set of wet steps, whilst asking “Are these steps tilting to the side? I think they are at a funny angle”. NO!! It is your brain trying to adjust to new specs, but you are about to drop me…..

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Anyway we deposited the politics student (more nervous than he would admit) to his new home yesterday morning and spent a couple of hours on the very hilly, but very beautiful University of Nottingham campus.  At lunchtime the canteens and coffee shops were full of anxious looking parents and equally anxious, but embarrassed IMG_1385

new students – my son commented that no one had managed to break free of the parents yet! Charming!! The funny thing is that it seems like only yesterday that my parents were dropping me at the nurses’ home where I would live for several years, and I can still remember that feeling of panic that I wouldn’t know who to talk to or where to go.  So it was with some relief that, having told our boy to leave his door open so that he could say hello to flat mates, he informed his brother over messenger last night that he was in the pub with his flatmates.

I can’t believe I am saying this, and I expect I will contradict myself over the next 3 years, but the pain, gastric problems, increased POTS symptoms and body consuming fatigue today, have all been worth it to hear him say “Mum, I can’t talk now, I’m going to the bar with new friends”!

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Don’t tell him, but I’m actually a very proud mum!

#ThrowBack Thursday – Searching for Happiness – Happiness is a Choice

This post was put up for Throw Back Thursday by Scale It Simple and it really got me thinking.  With the emphasis being placed on mindfulness and yet more in the press (UK) this week about mental health issues in teens – apparently a quarter of teen girls have experienced depression by the age of 14 – maybe we have forgotten how to be happy.

Let me wet your appetite…..

Searching for Happiness – Happiness is a Choice

Human beings are such interesting creatures. We are the only creatures that place personal “happiness” above safety and health.

For thousands of years, humans have walked this earth like nomads of the soul, searching for happiness.

Happiness is this way. No, this way. If you do this you will be happy. No, wait, this is what really makes you happy.

Did you hear about this car? This job? This brand? If you look like this you will be happy forever. If only I was younger I would be happier, if only I was older.

Humans roam all corners of the earth searching high and low for happiness. What makes one happy today will not do the job tomorrow and what makes you happy doesn’t do the trick for me.

So how do we find it? Where is happiness?

What if happiness can’t be found at all, what if in all this searching we are just confusing ourselves and wasting our time?

What if happiness is just a choice?

Want to read more?  Follow this link for the rest of a fab article!

Copy-of-Copy-of-Why-I-Switched-to-All-Natural-Beauty-Productshttp://scaleitsimple.com/2016/07/21/searching-for-happiness-happiness-is-a-choice/

Monday Magic – Inspiring Blogs for You!

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I am shattered today, PainPals and those pals not in pain!  Saturday was the day for the big reunion – that is 3 decades – 30 years since we left school.  I’m not quite sure which timescale sounds better!  How did that time pass so quickly? I remember my grandma telling me to value every day as the older you get the faster the time flies…but as a youngster I never took any notice.  Put together a group of people, some who haven’t seen each other for said 30 years, but who grew up together during those important teenage years….and it will feel like yesterday.  Similar theme to last week!

I was worried on Saturday morning for 2 reasons – firstly would anyone turn up and secondly I was feeling extremely POTSIE with the shakes and snow vision and forgot to take my midodrine pills with mine!  But on the up side about 20 people turned up over the course of the day/evening….and whilst I spent the first part of the day in my wheelchair the adrenalin seemed to kick in and I was able to stand for periods in the pub, sent out for my pills (good old Duncan) and was still in the pub for dinner in the evening.  It is amazing how you can push yourself when you need to and when you want to.  I find that it is about picking the occasions wisely to use your spoons, as it isn’t possible to live like this every day when a chronic illness is your constant companion.

The feedback has been fantastic – we had a great day renewing old friendships, reminiscing (being thrown out of choir, altering the wording on the carol service leaflet, sending Valentine cards, hockey, rowing, detentions for pranks…..the teachers) but also learning how everyone’s lives have moved on.  We had doctors, a headmistress, lawyers, an acupuncturist, a sports coach, a teacher, a horticulturist, an entrepreneur….the list goes on. Families have grown..and shrunk. Life goes on!

Class of 87 pic

Class of 87

So whilst I have had to sit back due to a self imposed inability to stand, I have found some new blog posts for you.  This week we have blogging posts, a yummy looking recipe site, a musical tribute and the feelings encountered when a pet is found to be very sick.  I am delighted to report that my list of blogs I have shared here has grown to 230 and many of these have been featured several times.  What a wonderful community you are!

Hope you have a cuppa in your hand, an hour to sit back and the enthusiasm to enjoy and explore these fantastic blogs.

https://www.disabledgo.com/blog/2017/09/activists-plan-day-long-musical-tribute-to-radical-and-brilliant-robert-dellar/#.Wb7PB7KGPIU

http://www.youcanalwaysstartnow.com/2017/09/11/is-the-universe-pushing-your-buttons-deal-with-it/

http://www.blessingmanifesting.com/2017/09/self-care-awareness-month.html/

http://riverandquill.com/2017/09/identity-theft.html/

https://beinglydia.com/2017/09/17/what-finding-out-my-dog-is-sick-has-taught-me/

http://www.livingnaturaltoday.com/2017/09/heart-goes-texas/

http://raisingzebras.weebly.com/blog/brain-mri-and-the-wheelchair-arrives

https://starbrightcooking.com/21-tips-classic-comfort-cooking/

http://www.strugglingwithserendipity.com/blog/accepting-harvard

http://www.angiecruise.com/what-i-learned-in-my-first-year-of-blogging/

Please, please share, pin, like, comment to let our bloggers know that you have enjoyed and value their writing. Have a lovely week!

Claire x

 

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

Visible Scars

Those invisible scars can be the hardest to heal….remarkable post from Ruby on Throwback Thursday.

A Ruky'z Life!

I never thought about visible scars being a blessing…

I think sometimes people look at me and think I’m too weird, too silly, too immature, or too reckless. But I think to have visible scars, people also think, “Wow she went through some trauma… Wow, she can laugh the way she does after going through all that? It’s surprising she can still smile the way she does… Oh, that makes sense now.”

Sometimes having visible scars justify my actions… sometimes…

Being a trauma survivor is what makes me a part of who I am. Having visible scars lets people know I’m a survivor without having to tell them.

Some people don’t have that luxury. The luxury of having someone look at them and know they are a survivor. There are a few who don’t have visible scars. Countless survivors went through a trauma that no one knows about because they…

View original post 454 more words

Monday Magic – Inspiring Blogs for You!

Another week, time for another Magic Monday!  The events in our household really pale into insignificance compared to the natural disasters taking over so many parts of America at the moment.  The majority of us, thankfully, will never have to encounter the devastation that these natural phenomena wreak, but I want to send support and good wishes to all our American blogging pals who are living through this.  There is an additional blog post this week that my pal Cheryl at Chronic Mom blog wrote last week about what no one tells you about surviving a natural disaster with chronic illness – but I think that there are  probably aspects that apply to everyone!

 

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We had an unexpected trip over the weekend – hence no blog post – and as it was a long trip for this chronic bird to make in a day, we paid an impromptu visit to old friends to beg a bed for the night.  Panic not other old friends, we gave them 24 hours notice!!  We haven’t seen each other for about 5 years, yet we have known each other for nearly 30 years – we “girls” did our nurse training together and the blokes have always been hifi and gadget buddies. Not forgetting that this fellow hifi nut was hubby’s best man 25 years ago!  With just a few precious friendships the years roll away and it is possible to appreciate the long and deep connections that you have with each other. As two couples, we have had our fair share of traumas over the past couple of years – we decided we should form the “Happy Pill” brigade as we must have shares in antidepressant companies between us – but we have survived and it is testament to our friendship that we can come together as if it was yesterday!  How many people in your life can you call on and truly rely upon to be there for you no matter what?  Quick shout out here for our fab friends’ facebook page – check it out (chocolate brownies to die for) Keeley House Bakery 

 

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I have found some great blog reads for you this week including  becoming a real mermaid (just read it!), a fab book review, and using your imagination when putting pen to paper.  There is also a piece about the scandal currently coming to light about the use of mesh implants in surgical procedures.  So grab a cuppa, put your feet up and enjoy some fabulous writing in these inspiring blog posts!

http://www.chronicmom.com/2017/09/what-no-one-tells-you-about-surviving-a-natural-disaster-with-a-chronic-illness.html/

http://www.nataliemabbott.com/quitting-everything-to-be-a-mermaid/

http://moonglotexas.com/2017/09/10/book-review-death-at-thorburn-by-julianna-deering/

https://1stimeblogger1232.blogspot.co.uk/2017/09/every-scar-tells-story.html

http://www.meaction.net/2017/09/01/reading-matters-lets-hear-it/

https://dystoniaandme.com/2017/09/10/5th-blog-birthday/

http://www.amundanelife.co.uk/2017/09/anxiety-is-not-trend.html

http://invisiblyme.com/2017/09/05/the-mesh-scandal/

https://globehousesitterx2.wordpress.com/2017/09/10/a-pen-paper-and-my-imagination/

https://mindovermetablog.wordpress.com/2017/09/06/how-to-deal-with-toxic-people/

https://ginlemonade.wordpress.com/2017/08/30/when-the-accessible-hotel-room-is-inaccessible/

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Please share this post and make a blogger’s day with a like, share, pin or comment….it makes it all worthwhile.

Have a great week!

Claire x

 

 

Monday Magic – Inspiring Blogs for You!

Good Morning and welcome to another week, another Monday Magic and some more great blog posts to explore!  Monday Magic

Here in England the schools return this week, much to my daughter’s disgust, and it feels slightly odd that we only have one child still at school.  I have almost missed the ritual trip out to buy school shoes and stationary, but my 15 year old doesn’t need me for this any longer.  Note that I have said ALMOST, not really missing queuing up with a numbered ticket in a branch of Clarks along with a bunch of harassed mums and boisterous children……however there are going to be some shopping lists I should think, ahead of the soon to be politics student going off to uni in a couple of weeks.  He is more concerned about his football season ticket and joining the Facebook freshers’ group than how many sets of bed linen and cutlery he might need. Who am I kidding? One set of bedding will last the term, won’t it – there is no way my 18 year old son will change it of his own accord, YUK!

Moving on swiftly, September is Chronic Pain awareness month and naturally with my background I will be mentioning it….just a few times!  This week also happens to be Fibromyalgia awareness week – which falls under the chronic pain umbrella – and Kat writes about this over on Chronically Composed – a Scottish journey with Chronic Pain.  The other posts I have found this week include a back to school guide, an emotive poem about depression (you can see I have commented on it), a young dad struggling with illness and surgery whilst raising his family, and a face that many of you are already familiar with – Danny from Dream Big who is currently concentrating on his Youtube channel and MS awareness.  Plus a great post looking at what is more important in blogging…numbers or friendship?

But to kick off I have kindly been given permission to bring you this fun poem from Anna on Healing Hugs and Hope blog……

An Ode to My Heating Pad

Oh, heating pad,
 your warm hugs ease
my aches and pains.
I need your healing squeeze
When my feet get cold,
or when I get one of my migraines.

From arthritis to subluxations,

you’ve nursed me through.
When I find my muscles tied,
I cuddle up to you.
It’s so nice and toasty,

with you by my side.

Due to my poor circulation,
I’m often very cold.
When my thyroid acts out,
you are too hot to hold.
Still, you know I’ll be back,
  it’s your gentle hugs I’m mad about.
If you love your heating pad so much, why don’t you marry it? Well, maybe I will….

A Silly Poem for People with Chronic Illness by Anna Ottlinger HEALING HUGS AND HOPE

So now time for feet up, cuppa in hand and enjoy some great posts!

https://chronicallycomposed.wordpress.com/2017/09/03/my-fibromyalgia-awareness-week-2017/

https://thezebramom.com/2017/08/24/back-to-school-guide-for-parents-with-chronic-illness/

http://lifesapolyp.blogspot.co.uk/2017/09/dialectical-behavioral-therapy-for.html

http://angelanoelauthor.com/inspiration-motivation/be-awesome-in-real-life/what-matters-more-numbers-or-relationships/

http://channongray.com/talk-mental-health-awareness-stigma/

https://thisreallifedad.com/surgery-going-knife/#comment-332

http://www.homeschoolinsights.com/2017/09/trials-of-chronic-illness.html

http://www.weareholistic.com/mental-health-care/might-call-depression/

 

I really hope that you enjoy these as much as I have – and had a giggle at the poem from Anna. It appealed to me as I really can’t go anywhere without my heating pad!  Please explore the blogs leave some messages and share posts you enjoy.

Claire x

 

Medical professional to Professional Patient

In under ten short years I have found myself well and truly stepping out of one uniform and into another.  I didn’t see it coming, I really didn’t.  But it crept up on me slowly and insidiously from my first surgery aged 21 until at the tender (don’t laugh) age of 39 I was officially declared medically retired. On the scrap heap, put out to pasture, caput!

Somewhere in the depths of my wardrobe hangs a blue nurse’s uniform along with a tiny belt and silver buckle, given to me when I qualified. I’m not sure that the belt would go around a thigh now, let alone my middle!! File_000 (45) These days my uniform is more likely to consist of trackie bottoms, PJs or if I am really lucky, a beautiful, backless hospital gown. Now you are understanding what my new uniform looks like, right?!

 

 

A couple of weeks back I started to write about a visit to the geneticist with my teenage daughter, known here as the lovely girl, and I have been gathering my thoughts around all the different appointments on my calendar recently.  As a medical professional I never appreciated just how many chronic illnesses there are out there, and even less how so many are multi systemic.  In palliative care we prided ourselves on being multi disciplinary but this really only scratched the surface.  Of course all that time I was nurturing my own genetic illness slowly but surely.  It was undiagnosed formerly; always just known as double jointed, bendy, funny circulation, chilblains, headachey, migraines, hormonal, dizzy, faint…..growing pains, sciatica, nerve damage, chronic pain – you get the picture.  But in recent years the pieces of the jigsaw have fallen into place, not always quite in the right places, but we are getting there and the appointment with my lovely girl reinforced this.

My hospital visits over the last month have included the geneticist, rheumatologist, cardiologist, endocrinologist and orthopaedics, not forgetting my GP!  With other symptoms of chronic illness such as fatigue and brain fog, the endless waiting rooms and then repetitious consultations can be exhausting and demoralising.  No one is at fault – it is the system. I have been pleasantly surprised to find that the younger generation of doctors have heard of my condition – Ehlers Danlos Syndrome – and seem to be aware that it can affect all body systems, not just that one that they are currently specialising in!  My eldest, the student engineer was out with friends at the end of term and one of his medical student mates commented upon my son’s shaky hands…..nothing to do with the fact they were in a bar, he assures me!  Anyway he proceeded to show them his bendy fingers – his really feel like there are no bones inside – and then his elbows and knees, and afterwards called me to say that the medics had been taught about connective tissue disorders and had heard of EDS..hurray!

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The Student Engineer – photo taken by Dan McKenzie

Having a diagnosis at just short of turning 15 is a huge leap forward for my girl from the position I was in at her age.  I think that I mentioned before that the genetics consultant wants us to keep an eye on her back as she will be susceptible to problems due to shoulder subluxations and wonky hips.  We know that there is no cure – the endocrinologist was so apologetic that he can’t do any more to help me, whilst the rheumatologist said I have an excellent knowledge of my condition and seem to be managing it well.  Orthopaedics know that I require joint replacement surgery – but I am currently too young and the unknown quantity is the constant dislocations.  The cardiologist is keeping a closer eye on matters and has increased one drug dosage to help with the dysautonomia fainting.

There you have it – in the space of a few years going from medical professional to professional patient!  As I said there is no cure for my kids, just a greater understanding of what might cause problems and what will help to prevent deconditioning. The geneticist told the lovely girl that there is no reason to think she will become a seasoned pro like her mum, to be mindful but to go away and live life.  Funny, but the endocrinologist said something similar to me about living life the best I can.

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My lovely girl on her way out to live…..

 

Hindsight is a wonderful thing….maybe if I had known, I would never have donned that blue dress only to swap it for a beautiful backless (hospital) gown!!  But it may well have made no difference.

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What a difference a decade makes! All dressed up – my last night out before the latest rounds of surgery and hospital visits! The whole family – with my parents and brother.