#MoveMoreInMarch Is this pledge changing my mentality? Already?

Since starting my pledge to #MoveMoreInMarch, I had managed to walk 35.11 miles by the end of Thursday 9th March – an average of 3.9 miles a day – so I was well on track to achieving my pledged 100 miles (an average of 3.23 miles a day).

However, I woke up on Friday feeling overwhelmingly tired. It happens sometimes.  I saw clients in the morning, but by lunchtime my energy hadn’t returned.  I worked through the afternoon, hoping that the exhaustion would pass – it didn’t.  By the time I went to bed, I had managed a paltry 1.12miles or 2,639 steps.  I felt very frustrated, but interestingly – looking at my ‘Step history’ – I walked less than this distance on 10 separate days in February and didn’t feel frustrated about it then. Is this pledge changing my mentality? Already? When I went to bed last night I decided not to set my alarm and to sleep as long as my body needed, which was just over eight and a half hours and I woke far less tired than the previous day.

I texted my friend Pauline (a local amateur photographer) who had planned to go to Gloucester Docks today, to take some photos.  I decided I would walk to meet her and we arranged to walk to the Docks together.  As I left the house, I checked my Fitbit… only to notice the flat-battery symbol! How frustrating.  I grabbed the charger from the car, thinking I could charge it at Pauline’s prior to walking to the Docks.  I was about half-way into my journey when I realised I had picked up the phone charger instead of the Fitbit charger!

Thankfully, my Fitbit didn’t die before I arrived at Pauline’s.  She photographed the ‘miles’ and the ‘steps’ displayed, and from that point we were dependent on her tracker.  After a quick visit to the pharmacy for some blister plasters (I had made the mistake of wearing new trainers and very thin socks) we popped into the closest sports shop for some ‘padded’ socks, which I duly put on, before we continued to the Docks. 

Sox

We detoured to Gloucester Quays Shopping Outlet, where we both bought proper ‘walking shoes’ (I confess that my heels were so sore that I wore my new walking shoes out of the shop!) before moving on to the Docks to take photos. 

Shoes

Arriving back at Pauline’s we noted how far we had walked.  To my surprise, despite the flat battery, my Fitbit was able to display my miles and I already knew how many miles my walk home would be, from walking to Pauline’s from my house in the morning.  To my delight, when I arrived home, my Fitbit managed to display the total miles I had walked today and sync with my iPad!  To say I’m impressed with the performance of my Fitbit is an understatement.

Fitbit

It’s surprising how much you notice when you walk.  I spotted my first honey bee and my first bumble bee, both feasting on fragrant mahonia. In fact, walking through Barnwood Arboretum on the way home, my senses were seduced by the scent of the blossom.  It really is a beautiful time of year and it makes me think just how much I would be missing, if I hadn’t pledged to #MoveMoreInMarch. If you live a sedentary lifestyle, why not try it?

Bee

 

Speaking for those who have no voice!

DREAMS – we all have them…

There are even charities which exist to grant dreams to children and young adults, but I discovered something yesterday which rocked my faith in charities and brought me down to earth with a big bump! It also propelled me to write this post.

First I want you to consider something.  If you have ever had children, think back to the time before they were verbal. Do you remember how you learnt to understand what they needed/wanted? How you, as a parent, were as one with your non-verbal child. Did you ever have people saying your child was hungry, when in fact you knew he/she was simply over-stimulated and needed a nap? No-one understands the needs of a child better than a parent.

Perhaps you have a dog? Dogs are non-verbal, but as a dog owner you learn to communicate with them in a non-verbal way, understanding their needs/wants.

Some children who are born healthy can develop illnesses/diseases which have a profound effect on them.  They may have a normal, happy childhood and then ‘BOOM’ everything changes.  Suddenly they are no longer able to do the things they once did.  Some are robbed of any chance of a ‘normal’ life and exist in a world where they can no longer use their voice to communicate.  Sadly, some children are born with a disease which means they will never be able to talk.

Yesterday I read a Facebook post written by the father of a non-verbal 17 year old, who has a life-limiting disorder and who is on a palliative care pathway.  This father knows that his son loves Disney characters and that a visit to Disneyland would be a dream come true for his son.  His son has not voiced this dream, of course… he has no voice to do so!  The family decided that they would take their son to Disneyland and that they would fund the trip themselves, with the help of a Crowdfunding platform.  Donations are coming in, insurance , accommodation, car hire and flights are sorted.  The family just needs a bit of help with tickets – time is running out.  So the father approached a well-known ‘Wish’ charity to ask for support with the tickets, only to be told that his son needs to express the wish himself! WHAT??? They said what?  They had been told that he can’t communicate and his inability to do so means he can’t be granted a wish! How uncharitable is that?  Another charity which grants wishes ONLY does so to children suffering from life-threatening cancers! WHAT??? I have spent years supporting charities; donating, fundraising, raising awareness, as well as working for some on a consultancy basis and whilst I understand that there has to be set criteria, insisting that a child verbalises their dream is nothing short – in my opinion – of discriminatory.  For a charity only to grant ‘dreams’ to children with cancer is beyond sad.  Mitochondrial disease kills more children than childhood cancer.  It comes in many forms – all life-limiting, some terminal.  No Voices

I spent a few hours yesterday looking at the ‘criteria’ in the small print of several ‘wish giving’ charities, whilst wondering what donors would think of these restrictive policies.  What do YOU think?  If you’re as upset as I am, please share this post and help raise awareness of this poor practice. 

If you would like to support this family, here is Kieran’s GoFundMe page 

Kieran’s father, Paul Preston, created The Children’s Mitochondrial Disease Network (CMDM) in 1998 to support other families, raise awareness and campaign for improved treatment and management of mitochondrial disorders, after the death of his own daughter, Kirsten, in 1992.  She was just 8 weeks old.  Last year, Kirsten and Kieran’s sister, Stacey, died from mitochondrial disease.  She was just 20. She was Paul’s inspiration for twenty years!  This article will tell you more.

I truly believe that Paul Preston and his wife understand their son and know that a visit to Disney would be very special to him. Would it be his verbalised dream, if he could speak? If only he could tell us… because it’s the only way he’ll get support from some of the ‘dream’ charities.

If you would like to know whether Kieran gets to go to Disneyland, please follow Kieran’s Mitochondrial Journey and Wishes Facebook page.

Kieran