Nobody said it would be easy – cake, life and curveballs

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Tonight is the 3rd birthday for The Book Club on Facebook – a fantastic group that I belong to full of authors, reviewers and readers.  Basically book people.  Yours truly has been making the birthday cake over the last few days and with a shoulder slipping in and out of socket it has been no easy task!

TBConFB

Of course I have been too ambitious and I always start with an image of the finished cake, and then am disappointed in my results.  This has taken me longer not just due to my lack of a right arm – yes, I am right handed – but also down to the design and needing to let it harden in phases.  More of that later.  It has made me draw parallels with expectations of everyday life – don’t worry I’m not going to get too deep here.

But how often do we set out with expectations of how an area of life will turn out only to be disappointed.  So many people talk about their life plans from university to careers to marriage to children etc, etc.  But life has this habit of throwing in a few surprises and curve balls along the way doesn’t it? Isn’t this true for everyone?

Life with illness – be it chronic, acute, mental or physical – is something few of us can anticipate and much less embrace.  When I set off to nursing college as an eager 18 year old, I never dreamed that life would turn out like it has.  But then I guess it is a good thing because with each setback it is so important to be able to get back up, brush yourself off and continue.  If I had known when I had major back surgery at 21 that by 38 I would be heading for medical retirement, I might not have tried so hard to get myself back on my feet and back to work.  I loved those years nursing and I think that I was a pretty good nurse.  If I had known my genetic diagnosis – Ehlers Danlos Syndrome – and all that it covers aged in my teens, I might not taken up rowing and then gone on to nursing – probably the worst things I could have done but great experiences.

But then some of the curve balls can be pleasant surprises.  For me probably the biggest surprise was falling pregnant when I had been told I would never conceive naturally.  The tiredness, anaemia and nausea/sickness turned into a pregnancy when my GP carried out a PAP smear and informed my cervix was blue – a classic sign of a 13 week pregnancy apparently!  I was taking HRT and had gone for a check up ahead of a new job – but came out as a mummy.  A huge curve ball, not in the game plan but fantastic (although I wasn’t saying that half an hour ago when said babe, 21 years on, created havoc in the kitchen with a pot of pasta on the stove!).

Being Mum
The surprise. aged 4 weeks….now a cover board on Pinterest!

I suppose what I am getting at is the importance to strive hard but also to accept that not everything will go exactly to plan…..and this is ok.  For me I’ve been thinking about the periods of needing to let my cake set before I can continue with it – living with chronic illness has these periods when fatigue hits and symptoms flare equalling a need to rest and pace.  Wait for the cake to set!  Don’t rush it, don’t take short cuts because there will be some sort of pay back.  In my experience this is life – illness or not.

So back to the cake….it is for a book club, so clever clogs here decided to make a stack of books.  The individual books were made – one chocolate, one Victoria sponge and one lemon – and then the icing covers started.  This is where the patience and waiting was required and I’m not good at this part!  Then last night came the final assembly of the three tier cake to form a stack of books……it wasn’t completely straight forward, there have been a couple of corners broken, some scaffolding was required and this morning some patch were required to plaster a few stress fractures.  The result is a stack of books that are not altogether straight and definitely look like they have been well loved if a little dog eared.  Not so different to life, I’d say – starting with high expectations (nothing wrong with that and I am not saying they should be lowered), hitting a few bumps along the way, the odd curve ball and maybe the finished product not quite as expected, but nevertheless created and to be made the best of.  Not always easy to do or accept, but as the infamous anonymous quote says “Nobody said it would be easy, they just promised it would be worth it..”

Will let you know if this holds for the cake when it is tasted, as for comparisons with life….what do you think?

Nobody said....
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Monday Magic – Inspiring Blogs for You

Welcome back to Pain Pals for what I hope will be a great week following a fantastic weekend! Those of you who have read my previous couple of posts will know that our lovely girl has her German exchange partner staying – an equally lovely young man of 15 and about 6 feet 3!!  We had a house full on the first night as we hosted all the English girls and German boys & girls to help break the ice; and then when hubby arrived home Saturday evening having collected from ice skating & bowling, I couldn’t help thinking “Bloody hell, my new car really is big” as the front door opened and a stream of teens came in.

There were 16 in total – and no it turns out that the car isn’t really a Tardis – but they were followed by a steady stream of takeaway deliveries from 5 outlets.  I can’t remember when, if ever our doorbell has rung so many times on a Saturday night! I just commented on an EDS Facebook group that a huge positive for us this week has been to see our normally angst ridden teen turn into a group organiser and hostess.  We had only been expecting 6 back on Saturday, but in order to avoid some breakdowns within the group our girl sorted them all (and took over our lounge ha, ha, ha) with tact and diplomacy to ensure everyone had a good evening.  Teenage relationships can be so tricky at the best of times, but throw in different languages, exchange partners paired who ordinarily wouldn’t be in the same friendship groups, one all girls school & one mixed sex, and the probability for issues is huge!  It has been interesting to see that the mixed sex pairings – like our lovely girl and lovely German boy – have been less problematic than the all girls – teenage girls and friendships equals another blog post entirely methinks!  The mixed sex group – 4 couples – went to Thorpe Park Fright Night on Friday and had a fantastic time. Not my cup of tea but they loved it.

IMG_3477As for me I am officially exhausted, typing one handed whilst in a sling again, but am officially one very proud mum having watched my girl blossom before my eyes.  Some might say turning into a chip off the old block – and even her eldest brother commented that the social awkwardness she professes to have is just not evident for the rest of us.  Today they have all gone to Brighton – the Pavilion, fish and chips, the beach and the lanes. Whilst the fatigue and dislocation have taken their toll, I have found some more fabulous blog posts for you to enjoy.

 

 

 

 

 

So grab a cuppa, kick you heels up and sit back to read some fab pieces, all very different but all inspiring.  I particularly love the Lush products review from Katie Cupcake and the beautiful piece about friendship from Happiness and Food. Enjoy!

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Photo from Katie Cupcake Life With ME

 

https://fictionisfood.com/2017/10/14/thoughts-on-nannowrimo/#more-4179

https://www.sp-bx.com/rick-and-morty-season-3-review-the-best-season-so-far/

https://clockworkclouds.wordpress.com/2017/10/09/can-you-overthink-an-idea/

http://katiecupcakelifewithme.com/review-with-me/lush-karma-spa-treatment-event-review/

https://www.happinessandfood.com/name-happy/

https://zebratalez.com/2017/10/15/10-social-security-disability-tips/

http://invisiblenotbroken.com/blog/2017/10/4/best-podcasts-to-listen-to-when-stuck-in-bed-with-chronic-pain

http://withoutacrystalball.com/2017/10/12/day-found-family-chronically-ill/

http://www.healthyeatingexperts.com/holistic-therapist-kicked-depression-said-bye-bloat-chronic-digestive-issues-naturally/

https://livingwithme.blog/2017/10/12/all-time-low/

Please comment, share and spread some love for your fellow bloggers.

love Claire x

Monday Magic - Inspiring Blogs for You! (1)

 

 

Tips for Throwing a Party – from Julie at ME/CFS Self Help Guru blog

I might have mentioned in a post earlier this week that it is currently the return visit of our lovely girl’s German exchange partner…or more specifically the return visit of thirteen 15 and 16 year olds.  The British girls, led by our daughter, decided that they didn’t want to revisit the awkward first few days of getting to know you that they had in Germany – they have all kept in touch in the intervening months and wanted to fall straight into “having fun”.  So this meant all being together on their first night….but not in a formal setting of a restaurant….”really we just want pizza and music in someone’s house, Mum!”.

Hmmm……no prizes for guessing who hosted 26 youngsters on Wednesday night.  It did prove to be a great ice breaker and they were extremely well behaved (I think there was more noise last week with just 8 girls!). The lack of mess after a delivery of 10 takeaway pizzas, crisps and drinks was unbelievable.  Whilst I had little to do on the evening, the beginning of this week was busy and Thursday morning saw me have an incredible crash and symptom flare.  I am just so hopeless at pacing myself and saying no…..we had 4 staying last night after visiting Thorpe Park and I think there might be 6 tonight…..I think that I should have read this post by Julie a little sooner!!  Great tips here whether you are chronically ill or fighting fit!

13 Top Tips for Throwing a Party When You Have a Chronic Illness

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A couple of weeks ago, I turned 50 and I really wanted to celebrate with a party. I shared the following tips in a Facebook live broadcast on the day. But just in case you didn’t see that or you prefer to take things in, in writing, I thought I’d share them here too, with the added wisdom of a little hindsight and an extra tip!

  1. Remember you’re choosing the consequences!

Sometimes we can choose to do too much, we just have to be willing and prepared to deal with the consequences (and what better excuse than turning 50!) I planned lots of rest before and after the party. Although my parents were coming to stay a couple of days after, they were warned that I might not have done all the clearing up by the time they arrived and that I would probably have to take it easy. I was willing to accept not feeling on top form for a while afterwards and when I felt rough for a few days I didn’t resist or resent it.

  1. Only invite people you really want to spend time with.

I decided I would only invite people that I really enjoyed socialising with.

To read the remainder of Julie’s tips please visit ME/CFS Self Help Guru

#Blog Tour – How I Motivated Myself to Succeed by Shelley Wilson

Dream It, Live It, Become It

Disclaimer: I was fortunate to be given an ARC by the author in exchange for a fair and honest review. All opinions are my own.

Blog Tour Banner for Shelley Wilson HIMMTS

I first met Shelley Wilson through the blogger community online and was soon following her on Twitter and her blog.  We also belong to a great Facebook group of bloggers who support and promote each other.  Now I must be honest and tell you that I haven’t read Shelley’s first book – yet – “How I Changed My Life in a Year”, but I do know that it was the precursor to this book and that she does refer to it throughout as one book describes the other.  So to put it simply we have “How I motivated myself to Succeed” in my challenge of “How I Changed My Life in a Year”.

Normally I would give a self-help book a wide berth, but I was intrigued by the concept of “How I Motivated Myself to Succeed” and wondered how it could apply to me.  My regular readers will know that my life has changed drastically due to health issues, and as a result I have started to write and connect with the chronic illness community.  I wondered if Shelley’s approach to motivation and success could be translated to something positive for those who are facing huge and often negative health issues.Motivation

This book is easy to read.  There are no difficult words, trendy psychobabble phrases or deep psychological discussions to dissect.  It really does do what it says on the tin – that is to describe Shelley’s personal journey to motivate herself to succeed.  I love the fact that she describes, in brutally honest detail, every little factor affecting her setting and then achieving her goals.  She describes how she learns – as a visual learner – and how preparing vision boards helps her to figure out what it is she wants to achieve.  But Shelley is not prescriptive in her approach and suggests that the reader may find other tools more helpful – she recognises that one size does not fit all.

Many of you will already be familiar with the use of acronyms in the workplace to motivate individuals, or within team building exercises or at a strategic planning level.  Shelley incorporates several acronyms – such as SMART (Specific, Measurable, Achievable, Realistic, Timely) FEAR (False Evidence Appearing Real) DAD(Decision Action Determination) – along the way but does so in a very familiar and easy format that explains exactly how they can be used by ordinary people in day to day life.  I think that this is what I like most about Shelley’s book and her style of writing – she explains exactly how she personally set goals, undertook tasks and arranged her life to achieve her goals.  Now these goals may have included a mammoth one of writing a book, but equally she includes writing a meal plan for her family and encouraging her teens to tick of items on the household task list!

Shelley is a single mum who has run a holistic health business, but has also experienced her own major health problems which forced her to close her business.  I felt immediately drawn to this normal woman, living an ordinary life and I can identify with her.  Her descriptions of home and the teens made me laugh out loud – this lady knows how I live. If I can recognise myself and my friends in this writer, then I can definitely identify with her writing and her suggestions.

As someone who has been disabled with health problems, I accept that I am not going to set a goal to storm the workplace and become a tycoon as my body physically will not allow this.  But Shelley’s frank discussion about organisation, self-care and changing habits can be easily utilised by someone like me to both make the best of my situation, and to realise that I can still achieve something and flourish.  I love her section on decluttering – this covers both mind, surroundings (in my case home) and social media.  She writes about decluttering your Facebook & Twitter….it would never have occurred to me.

Whilst Shelley has written parts of this book with the twelve months from her first book in mind, and thus sets challenges across the year, she stresses, and I believe, that it is possible to use some of the tools over a shorter timescale or indeed for the longer term.  We talk about “pacing” in the chronic illness community and being “short on spoons”, and the second half of this book has so many good suggestions to plan and incorporate these needs with the goal to a success beyond our illness/limitations.  This might be writing a blog, visiting a friend or running an on line shop.

So before my review for this Blog Tour turns into a book, my conclusions!  If you are interested in reading a down to earth, personal experience of motivation and goal setting in order to succeed and achieve – then this is the book for you.  Nothing fancy, no psychobabble, pure sensible advice that we ordinary folk can use to flourish.

A fantastic four stars – please read Shelley’s guest post below!

Book review & blog tour

 

Guest Post From the Author, Shelley Wilson (@ShelleyWilson72) #BlogTour

 When my wonderful host, Claire, offered a spot on her blog for my book tour I was delighted. I’m ashamed to say that after writing a series of guest posts (seventeen in total!) my typing fingers are beginning to look like gnarled claws! Before they give out on my completely I wanted to take this opportunity to find just the right excerpt from my new release for Claire’s audience. I hope you like it.

 

Taken from How I Motivated Myself to Succeed:

When I began running my Motivate Me workshops, I used to leave a handout on all the chairs for the attendees to take away with them. It was my interpretation of motivation. I’d like to share this with you in the hope it resonates with what you are planning for yourself.

M = Mindfulness

O = Optimism

T = Trusting in the Process

I = Inner Wisdom

V = Validation

A = Activating Your Dreams

T = Thinking Outside the Box

E = Empowering Yourself

 

M is for being mindful and learning to be in the now. Slowing down and becoming aware of what your mind/body is telling you enables you to discover new opportunities and experiences. Try a five-minute meditation every morning or night.

O is for optimism. Start to look at your life through the eyes of a child, with innocence. See the simple things that can make a profound difference to your day/week/month, such as a smile, holding a door open, or paying someone a compliment. All these acts add to our well of optimism.

T is for trust. I’m not a life coach or a neuroscientist; I’m a single mum who turned her life around when she hit rock bottom. I had to trust that the lessons I’d learned were there for a reason. I believed that the universe could deliver, and more importantly, I began to trust myself that I could survive, make changes, and be the person I wanted to be.

I is for inner wisdom. You have the ability to change bad habits, to find happiness, and to love who you are. Sometimes you may forget that your inner wisdom exists. It’s always there, just beneath the surface, and it’s ready to provide you with the answers you long for. Using oracle cards can be the perfect way to tap into your inner wisdom.

V is for validation. For every issue you face, or problem you think you can’t handle, there are a hundred other women/men who have been through this and have come out at the other end. You can use their wisdom and experiences as a case study. Let those who have walked this path before you be a mentor, or join a support network, or social networking group. These are all ways to validate that you can get through anything. Don’t be afraid to ask for help when you need it. You are not alone.

A is for activating your dreams. These are the action points you take to make things happen. By taking that first step, you begin a chain reaction that pulls your dream towards you and activates those wishes into becoming a reality. Without this stage you become stuck.

T is for thinking outside the box. Learning to change the way you think can have a profound impact on your life. When you are worried about an issue, stop for a moment and put yourself in the shoes of someone you admire, a strong person who never seems to be fazed by anything – what would they do? Come at your problems and fears from an alternative direction.

E is for empowerment. In today’s society, you have the opportunity to sign up to be a part of powerful social communities both online and in real life. A group of friends with similar interests and beliefs can be invaluable. At home, you may be part of a networking group or a slimming club; perhaps you’re a member of the Women’s Institute, a book club, or a regular coffee morning event. All of these groups empower you. Being around like-minded people, meeting new friends, and sharing that positive energy will feed your motivation to succeed, and will grow your desire to be the best you can be.

If we think about our resolutions, goals, or projects as one big jigsaw, then by collecting all the pieces and slotting them together we achieve success.

This was the final spot on my blog tour for How I Motivated Myself to Succeed, available now in paperback and eBook. Huge thanks to Claire, for allowing me to invade her beautiful blog and share the book love. I hope you enjoyed a brief glimpse into my book world.

 

If you would like to read more then take a look at her new release, How I Motivated Myself to Succeed, out now in paperback and eBook, and packed full of information on self-care, freeing yourself from fear, organising your life, and much more.

Amazon UK

Amazon US

Find out more about Shelley on her author blog www.shelleywilsonauthor.com or via her personal development blog http://www.motivatemenow.co.uk.

 

She is also on Twitter,  Facebook and Instagram

 

Author Bio:

SONY DSCShelley is a multi-genre author of non-fiction self-help and young adult fantasy fiction. Her latest release, How I Motivated Myself to Succeed is being dubbed as the sequel-that’s-not-a-sequel to her bestselling book, How I Changed My Life in a Year. She writes a personal development blog (www.motivatemenow.co.uk) as well as an author blog (www.shelleywilsonauthor.com) where she shares book reviews, author interviews, and random musings about writing. Shelley was thrilled to win the Most Inspirational Blogger Award at the Bloggers Bash in 2016, and to scoop second place in the same category in 2017. She is a single mum to three teenagers and a black cat, loves pizza, vampires, and The Walking Dead, and has a slight obsession with list writing.

 

What are Dysautonomia and POTS?

Hannah on Sunshine and Spoons blog has written this post about Dysautonomia and POTS (postural orthostatic tachycardia syndrome).

She recently did a straw poll on a facebook group that we belong to and very few people had any idea what this medical term means.  I knew because I have it…..but had never come across the term in my own medical career.  Some of you will have read how my symptoms have been particularly bad recently, but I am now able to stand upright again!!

Please read the whole piece and share in order to help us spread awareness!

What are Dysautonomia and POTS?

What are Dysautonomia and POTS-

Did you know that October is Dysautonomia Awareness Month?

Let me back that up a little….do you know what dysautonomia is?

If you said no, you’re not alone.  Most people have never even heard of it.  I didn’t know what it was either until I was diagnosed with it.  I have Postural Orthostatic Tachycardia Syndrome or POTS which is one of the autonomic disorders that falls under the umbrella term of dysautonomia.  Other types include Neurocardiogenic Syncope or NCS and Multiple System Atrophy or MSA.

Despite the fact that many people have never heard of dysautonomia, it’s not rare.  It’s estimated that over 70 million people around the world have it in one form or another.  Often, it’s a secondary condition to another disease or disorder such as diabetes, Ehlers Danlos Syndrome, Multiple Sclerosis, Lupus, Celiac Disease, arthritis, and more   The most severe cases can result in death.

What is POTS?
Your autonomic nervous system regulates different functions throughout your body such as your heart, digestion, temperature, blood pressure, etc.  People with an autonomic disorder such as POTS have issues regulating those things.

 

To read the whole post visit Sunshine and Spoons 

You will also find great links to Hannah’s Sunshine and Spoons Shop

POTSWarrior5

 

Dear Hubby….

Dear Hubby,

I woke up this morning wondering how we got here.  If we had known on this day all those years ago what was in store, I wonder if you..or I…would have turned up at Chelsea Registrar’s office?Scan0023

But we did, and here we are, having weathered the storms, the unexpected, the joys and some dark times.  Back then it was just going to be us and your beloved Lotus 7, having been told that babies were not likely when I was diagnosed with polycystic ovary syndrome aged 20.  The first storm – for you at least – was the realisation, soon after we bought our flat in Fulham, that we couldn’t afford the parking space to go with it! So the first Lotus 7 had to be sold as leaving it on the road – even the posh road to Bishop’s Park and the Palace that we overlooked – was not going to happen.  Scan0025

Of course at this time we had no idea about Ehlers Danlos Syndrome – had never heard of it – we just knew I had a host of problems and had already undergone major back surgery and was very bendy. Life in London was great, wasn’t it?  I don’t think that brand new kitchen was cooked in very often as we dined out down the Kings Road or in Fulham most nights.  But all good things come to an end, and you began craving another sports car(!) so the hunt was on to move out of London.  Soon after the move to our first house came another joy in the shape of a second Lotus 7. But within months came probably our biggest unexpected piece of news….I went to the GP for a once over before starting a new job, feeling generally unwell – and came out 3 months pregnant whilst taking HRT.  Hmmm….that little 2 seater didn’t last long either.

There has been redundancy; more babies – including the tummy bug that didn’t go….oops! your little girl…..3 caesarians & increasing back pain; another house move to the same road as your in laws(!); hideous working hours for us both, including 6 day weeks and night shifts; increasing migraines; more dislocations; IBS; school choices; more back pain and finally on the eve of Obama’s first term in office – the straw that broke this nurse’s back!  Then a career lost – permanently.

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And 2 becomes..5

We are quite a few years on and many more major surgeries to add to the list.  Not forgetting the Ehlers Danlos Syndrome diagnosis – for me and the kids.  A life threatening illness for one of our parents and then your own health taking the full brunt of all our traumas. That was a scary time for us all to watch you disintegrate.

But…..we are here still standing – you at least! Me – I spend more time on the ground these days (laugh everyone!).  The kids had to grow up fast and have all turned out to be pretty bright (not sure where that came from), independent & resourceful – so long as we’re not talking about tidiness and cleaning!!  We have had to accept that I need you to officially be my “carer” – which I still hate – as my health declines, and this has been hard for us both having worked and earned from the age of 18.

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Look what arrived today!

But…..with a bit of juggling, fantastic parents and wonderful friends we are doing ok, aren’t we?  No we haven’t any money for holidays, and we worry about being unable to help the kids out financially, but this has led to our young adults working and earning – be it paper rounds, babysitting or writing websites! We are spending more time together as a family, you are enjoying setting up your own small venture and taking on a role at the kids’ old primary school, which has been the making of you. Who would have thought it a couple of years ago!  You never – or rarely – complain about me and I do know that on those really bad days, when the pain flares and I can’t settle, or the black dog (not Sam!) surfaces I can be awful to live with.  Plus there are the endless trips to hospitals across London and the different specialists to keep track of.

Neither of us signed up for this, but then you never know what is round the corner. In a funny sort of way maybe life is actually more fulfilling now.  We certainly both have almost encyclopaedic knowledge of Ehlers Danlos Syndrome and all that goes with it!

So back to the beginning…..it was a pretty dreary day and actually raining when we walked out as Mr & Mrs (at least I did prevent you walking me over the road to Stamford Park!) 25 years ago.  But today has been a bright, beautiful autumn day – Happy Silver Wedding Anniversary, hubby!Scan0024

love Claire x

Dear Hubby

Brilliant blog posts on HonestMum.com

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…..

DKe2_IbXoAE_Bld

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!

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

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