Switching Off…

switch off one

 

Does anyone else have a love/hate relationship with their smartphone??  I love that I can be contacted in an emergency regarding my kids; love the fact I can fill boring waiting times by checking emails; love capturing magical spontaneous moments with my babies; they are brilliant networking tools; and it’s amazing that you can now be connected with friends and family far and wide.  Plus, I love a good Insta selfie.  However.  I also hate the control these little screens have over our lives and the message we are sending our kids; really hate it!  But probably not as much as I hate computer consoles, but that’s a whole different blog!

When I was growing up, if the house phone rang and we were busy or eating we just ignored it.  We didn’t rush up to see who it was, we didn’t have an answering machine or caller ID; and we didn’t have ‘1471’ in the early days (shit I feel old!).  So if you missed a call, tough titties & nobody really cared.  The phone was also wired to the wall and located in the busy kitchen so there was no privacy as such.  So phone calls were to the point and purposeful.   We hated being on the phone; we had shit to do and people to see – you know, in actual person!

screen_addicted_parents_ignoring_child_v_dunckley_md

As a parent, especially a single one I think it’s really important to spend real quality time with my babies, and actually be ‘present’ rather than distracted by my smartphone.  They are growing up in a fast-paced technological world (which is great!) BUT there is simply never ever any substitute for being present and giving your time and attention to both your loved ones and people in general for that matter.   Since Cancer, my time with my babies is even more valuable and precious than ever and I began to distance myself from technology as a direct result a few years ago.

For example, I deactivate my personal Facebook account a few times a year to take a break; there are certain apps that I turn the notifications off for; all group message conversations are permanently muted; certain emails are filtered straight into specific folders so I only notice they are there by physically checking occasionally; no phones allowed at the table; I rarely scroll through the Facebook newsfeed and I’m not one to ‘overshare’ my shit on there either (show some damn dignity people).  I am a HUGE fan of the ‘Do Not Disturb’ function and use it a LOT!  I’ve also always turned off all notification and phone calls from about 8pm at night (unless I am out and need to check in about my babies).   And when camping with my babies I have always turned my phone off to enjoy the peace and experience fully.  I always thought that this was enough.  It wasn’t. 

A few days ago I was trying to reply to a really important email; the kids nagging me for yet another snack; the youngest getting angry; I couldn’t concentrate on the email; it was turning into bloody chaos.  In that moment I had forgotten my priorties.  The email actually wasn’t that fucking urgent, yet my kids craving my presence was.  So the phone got ditched and I gave the kids their 10th billion snack of the day as we all sat and chatted about travels and holidays we were planning for next year.  How it should be. 

That evening I decided to stop ALL notifications on my smartphone and placed contact restrictions on many people in my caller list who are known to drain both my time and energy needlessly.  And it’s been liberating.   I only know if I have an email or message if I make an effort to physically check, and no more of those annoying Facebook notifications for everything single little bloody thing!

Now, we aren’t all Topsy and Tim (God those obnoxious little brats irritate the hell out of me and well that mother is clearly using something to get her through the day!).  But I do feel it’s important to set a good example as kids mimic behaviours they see.  I want my kids to gain confidence with the outside world and real bloody people – not waste their life away watching YouTube videos of some anti-social gamer playing a video game and commentating as they go (what the actual F is all that about?!?!)

So, if you don’t get an immediate response from me (or no response at all)…..it’s either because I have my priorities set differently to you; or I’m busy doing the other zillion things single parents have to do!  I’d definitely suggest giving it a go – you would be surprised at how addicted you actually are to those pesky little screens!

switch off 2

 

Amy Griffiths, Well Being Freedom Services Ltd ©

One Down….

keep-calm-one-down-many-more-to-go-1

Well, that’s the first official day of the Summer holidays over!  How did you do mums??  Did your day resemble this below by any chance?!?!?

tired-mom2

Or was it more like this…….

funny-parenting-meme-04

For us our day went a little like this:

6:17am: Wake up
Tantrums.
Babies bickering.
Tantrums.
“Mummy I want a snack.”
Breakfast.
“Mummy I want a snack.”
Get us all dressed.
“Mummy I want a snack.”
Watched a film at the cinema which was actually quite good (forgot the 3D glasses so now have an extra 3 pairs to add to the billion others in the drawer of crap!)
“Mummy I want a snack.”
Endured a grumpy person.
Babies collected for a few hours (yes, this is the FIRST time in TWO years that I have arranged having small breaks during the Summer holidays!)
Quick lunch & work emails.
Childfree trip to B&Q for screws.
Childfree trip to the gym where I snorted out a massive laugh watching this video whilst on the treadmill (WARNING, not for the easily offended ha!)
Childfree swim.  Bliss.
Had an allergic reaction to something.
Collected some parcels (new camping equipment, yay!)
Got harassed on Gumtree messages by somebody called ‘Jade.’
Home for DIY.  Realised I got wrong screws.  Bugger.
Childfree trip to B&Q for screws.
Collected babies; one happy; one sad. *sigh*
“Mummy I want a snack.”
Medical appointment for one of the said babies.
“Mummy I want a snack.”
Back home for tea.
Tantrums.
“Mummy I want a snack.”
Tantrums.
“Mummy I want a snack.”
Babies up to bed.
Told how much they love me and missed me today. *awwww* 
Lovely cuddles and kisses with my babies.
Housework.
“Mummy I want a poo poo.”
Housework.
“Mummy I want a drink.”
Housework.
“Mummy I want a drink.”
Housework.
“Mummy I want a drink.”
8:23pm: I start work for the evening when I should actually be preparing for a hospital trip to London in the morning. Bugger.

Sound familiar ladies???

One day down.  43 to go!

cheers

 

Amy Griffiths, Well Being Freedom Services Ltd ©

To Love the NHS…???

decisions

 

So last week in South Wales, we saw the worst snowfall in a very long time, with a RED warning issued from the Met Office. This meant that schools, council offices, shops and businesses completely shut down & we were advised not to drive.

BUT hospitals didn’t have the luxury of being able to close their doors.  Patients still needed to be treated and fed, buildings still needed to be cleaned.  Patients out in the community still needed to be visited, and GP surgeries open regardless.

Now, I think it is fair to say that I haven’t had the perfect love affair with the NHS!  I’ve worked for the NHS; seen the best and very worst.   As a relative I’ve seen loved ones both saved and neglected.  As a patient I’ve had some of the most amazing care you could ever wish for.  I’ve also been mis-diagnosed and neglected, causing life changing and permanently damaging effects.

HOWEVER, over the past week I’ve been grateful to see the passion and dedication of many good NHS workers first hand. 

Family members and close friends are nurses & have put their patients above their own safety & family by travelling into work at all costs.

I’ve see my partner working long hours & giving up his own weekend to drive NHS staff to hospitals and around the community in a 4×4.  And then he has worked crazy 18 hour shifts to help manage the crisis that hit the area immediately after the snow began to descend.  From a selfish point of view I hated his ‘job’ during this time as it meant he wasn’t around to support with something quite significant at home.  But on the flip side seeing his passion for the cause made me love him even more.  The NHS need more people like him.

So whilst Facebook was full of selfish moans of shops being closed or running out of food, just spare a thought for all the dedicated NHS workers (domestics, caterers, porters, nurses, doctors, paramedics, managers to name just a few!) that put their own lives at risk travelling through awful conditions to ensure patients didn’t suffer!

Thank you

 

Amy Griffiths, Well Being Freedom Services Ltd ©

 

The Dummies Guide to Enjoying Christmas When Your Cancer May Have Spread…

cervical cancer awareness

 

So, I’ve thought long and hard about writing this blog; partly because of keeping my ordeal very private over recent months; partly due to old memories being re-lived; partly because I want to protect my babies; and partly because I am awaiting further surgery.

BUT January is Cervical Cancer Awareness month, and I am very passionate about encouraging as many women to get their smears tests done as possible, and for society in general to appreciate the long term consequences the illness brings to YOUNG women – YES CERVICAL CANCER IS A YOUNG PERSON’S CANCER and completely destroys the life young women dreamed of ever having.

So here I go……

Around 3-4 months ago I began suffering extreme pain.  The type of pain I walked around with for a good 18 months a few years ago prior to my cervical cancer eventually being picked up via a routine smear test (this was after all my CLASSIC symptoms being dismissed by medics!) 

I tried to ignore the pain the best I could, despite being secretly panicked.  However it eventually began to become unbearable and I gave in and telephoned my cancer nurse who made me an emergency appointment with my Oncologist.

My Oncologist was wonderful as always and could see I was in pain and ordered me an urgent MRI scan.  This was then followed by an urgent laparoscopic surgery on 11th December (exactly three years to the date since my original cancer surgery, so you can imagine that this was an incredibly difficult day for me).

The surgery involved a general anesthetic, four abdominal incisions, probes and a camera to effectively ‘dig’ around my insides to check if my cancer had spread, and also see if there was anything else which could be causing the pain.

Before being discharged from hospital, my amazing Oncologist came to see me armed with some pretty gross but fascinating photographs of my insides!  He explained that although he couldn’t see any obvious reoccurring tumours, he had taken some samples for testing and that I would have a three week wait for the results of.  Shit.  That was any small bit left of my Christmas cheer thrown firmly out of the fecking window.

He also found quite a lot of significant adhesions from my previous surgery which could explain the pain – basically certain organs in my body have decided to fuse to places they shouldn’t have.  Great ‘ey?  Having Ehlers Danlos Syndrome (a rare genetic connective tissue disorder) had dramatically increased my chances of adhesions and I am deemed ‘high risk’ for any type of surgical procedure.  Gotta love ya faulty inherited DNA 😉

I won’t lie (gosh, I sound like Nessa!); the past month has been incredibly difficult.  I came home from hospital in pain, weak, dizzy, exhausted, panicked.  But being a single parent, I just had to continue as normally as much as possible; so back on the school run the next day, looking after my babies, seeing their wonderful Christmas concerts, housework, studying, fighting infections, CHRISTMAS!

The three week wait for my results was absolute agony; not just physically, but mentally too.  I couldn’t really tell many people what was going on for various reasons – the main being the Christmas period and not wanting to cause upset to others or be a burden.

Well, the 3rd January FINALLY came around and I was sick with nerves all day waiting for my afternoon appointment slot.  The wait in the horrid, stuffy depressing Oncology waiting room (right next to Maternity of all places; really people, talk about adding insult to injury?!?!?) was made slightly more bearable by my lovely chap holding my hand and getting me to play eye spy bless him.  But as always I chose to go into my appointment alone……

I can’t begin to tell you how good it felt to be physically shown a paper report by my Oncologist with the words “NO MALIGNANT REOCCURRENCE FOUND” written on it!  I felt an instant peace come over me.  My cancer hadn’t spread!!!

My main worry over the past few months hadn’t been ‘just’ about the cancer possibly spreading, but more about how my kids would cope going through the same thing again.  A mum will always put her babies above anything else.  Always.

So, despite being given the ‘all clear’ (which is absolutely fantastic!) I still have a second bigger surgery to follow to try and unfuse my organs in the coming months, but after cancer everything else seems pretty insignificant in comparison.

I really don’t know how I would have gotten through the past month without a few amazing people taking such good care of me and my babies.  We love you xxx

And for every other female reading this GET YOUR SMEAR TEST because believe me the alternative doesn’t even bare thinking about.

smear

Grateful Reflections…

GoT_Christmas

 

Most people will think I absolutely love Christmas, afterall I am forever dancing around to the cheesy Christmas tunes embarrassing my babies and couldn’t wait to dust off the novelty jumpers & awful sickly festive DVDS!  But in reality, Christmas for me is a very difficult time, as it is for many others.

In 2006 I lost my Poppa on Christmas Day, followed by my wonderful Nanny 30th December a few years later.  These two deaths alone made me dread the Christmas period, but as a Mummy you learn pretty bloody quickly to paint that smile on and chuck yourself into the festivities to ensure your babies have the most magical time.

Then in December 2014 I had my cancer treatment.  As a mother it absolutely broke me being so unwell and not able to give my babies the Christmas they would normally have.  But equally, it was probably one of the most touching and special as we weren’t rushing around trying to cram everything in.  I also remember getting a pretty spectacular phone call late Christmas Eve; my wonderful Oncologist wanted to tell me personally I was cancer free.   I will always be indebted to that man for giving me more time with my babies.  Always.  

This year, the lead up to the festive season has been very difficult again, but for reasons I’m not quite ready to share just yet.  But my duty as a Mummy will always be to ensure that my babies have magical memories.  I of all people know how precious these are.

Despite the challenges surrounding Christmas, a text I got from a good friend prompted me to reflect and appreciate some of the wonderful people I have around me.  He called me ‘pigheaded’ because I have a tendency to shut down & not deal with certain shit.  Now, if anyone else would have called me that they would have been firmly told where to go ha!  But I think he is probably the one person who can get away with it & actually make me question my actions.  For that I love him, even if he is a car-nut chav 😉  And I probably don’t tell him enough how incredibly proud of him I am.

Then there is the Northern blonde bombshell who just says it like it is whether I want to hear it or not lol!  And the loveable cocky Glaswegian who drives me absolutely mad, but has a heart of gold.  The ginger swadie who I miss more than he realises.  And my wonderful ‘adoptive’ family who would do anything for my babies & have been there through thick and thin over the past 8 years.   I Love you all x

I think sometimes we get so blinkered fixating on just getting through each day that we forget to step back and appreciate those around us.  And for anyone else who finds Christmas hard, I’m sending you a hug & vodka 😉

And always remember…..

grateful

 

 

Amy Griffiths, Well Being Freedom Services Ltd ©

Spreading The Word #RareNotFabricated

IMG_20171015_153026_216.jpg

 

You will remember from my earlier blog here that I have recently become SWAN UK’s first Volunteer Parent Rep for Wales, covering the Cardiff and surrounding areas.

Well, in October I spoke at the Third Annual Rare Disease Patient Network Meeting, based in Cardiff. The day involved a range of talks from guest speakers ranging from genetic testing, data sharing, the connection between mental health and living with a rare disease, policy changes and both parent and patient experiences. The event went really well, a good mixture of professionals, patients and parents.

I wanted to talk at this event because I feel very passionate about ensuring that not having a diagnosis should not prevent accessing information and support services! I actually found the experience of talking easier than I expected. I purposely didn’t dwell too much on the early years as they were quite difficult times. Instead I focused more on being a good advocate for your child’s needs and how being a part of SWAN UK can be a really good support network when you don’t feel that you ‘fit’ anywhere else. I found it really rewarding to hear such wonderful feedback during the break, and to chat to some new parents who are keen to join our SWAN UK Wales network!

I hope from my talk that the professionals can take on board the anxieties some parents may have, and also include parents fully in all decision making processes to ensure that the correct needs of the child are met and that the relevant support services are put in place. I cannot wait to engage in more public speaking on behalf of SWAN UK! I want to do more talks like this in my role as Parent Rep as it’s really important that professionals work closely with parents (who are often the experts on their child’s needs!) to best support not only the SWAN child, but the family as a whole too.

Without a diagnosis it can be challenging to access the support and information you need. Many families don’t feel that they fit into the wider networks for parents of disabled children, and therefore end up feeling more isolated.

I am really looking forward to developing the undiagnosed network in Cardiff; it’s been a long time coming! I can’t thank SWAN UK enough for the support they offered my family in those early years, where as a parent I felt ignored, belittled and isolated at times.

I’m keen to ensure that SWAN UK families have a voice, and that a label should never restrict access to support services and now I have officially been named as Parent Rep for Wales, it is full steam ahead!

 

To find out more about SWAN UK follow their website https://www.undiagnosed.org.uk/

 Amy Griffiths, Well Being Freedom Services Ltd ©

A Busy Mum’s Summer in Pictures

So, the Summer holidays can sometimes fill a busy mum with dread BUT in reality between all the sibling squabbles and billion demands for a snack, perfect memories are made!  You can read my rather humorous recap of ‘Day One’ of the holidays HERE!

This year we had one of our BEST summers ever thanks to my clever planning ahead!  Our weeks were filled with laughter, holidays, daytrips, friends, family, good food, smiling monkeys, saucy tortoises, detoxing (me, not the babies!), training for a mud run (also me!).  

Here is what this busy mummy and her wonderful babies got up to this summer!

 

Amy Griffiths, Well Being Freedom Services Ltd ©

My NEW Exciting Role for Undiagnosed Kids!

swan uk

“Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it.”

 

SWAN = SYNDROME WITHOUT A NAME

How crazy is that??  Imagine having to live your life with a high possibility of NEVER having answers as to what is causing your issues?  For many (including my own family) this is a reality, even now in this age of vast medical & genetic research!

For most families getting a diagnosis remains just as important to them as their child grows up. Without one families can struggle to access the right support. They have no idea what the future holds for their child or if other children they may have in the future could be affected.

I joined this wonderful charity as a parent approximately 7 years ago after having my first child, and have continued to gain support after having a second child whom is also affected by a rare genetic condition.  I cannot thank the SWAN UK family for all the love & support they have given us over the years & the friends we have made along our journey.

Fast forward to July this year & I received an extremely humbling email from SWAN UK asking me whether I would consider applying for the role as the FIRST Welsh Parent Representative!  I was so excited I actually squealed!  Now I have been casually organising family events for SWAN UK for a number of years, but this was an opportunity to make more of a formal impact in the crazy world of Genetics, meeting professionals, recruiting new families along with supporting existing ones.  HOW THE HELL COULD I REFUSE THE ROLE???  I don’t think I’ve completed an application form so fast lol!

I’m extremely pleased to say I GOT THE ROLE!  (can you tell I’m excited yet???).  I have a few months training ahead, but cannot wait to get started!

 

Watch out South Wales, I’m coming to educate you ha!

 

i-am-so-excited

SWAN UK is part of Genetic Alliance UK, registered charity 1114195.

 

Amy Griffiths, Well Being Freedom Services Ltd ©

 

 

 

One Down….

keep-calm-one-down-many-more-to-go-1

Well, that’s the first official day of the Summer holidays over!  How did you do mums??  Did your day resemble this video below by any chance?!?!?

Or was it more like this…….

funny-parenting-meme-04

For us our day went a little like this:

6:17am: Wake up
Tantrums.
Babies bickering.
Tantrums.
“Mummy I want a snack.”
Breakfast.
“Mummy I want a snack.”
Get us all dressed.
“Mummy I want a snack.”
Watched Planet of the Apes 3 at the cinema which was actually quite good (forgot the 3D glasses so now have an extra 3 pairs to add to the billion others in the drawer of crap!)
“Mummy I want a snack.”
Endured a grumpy person.
Babies collected for a few hours (yes, this is the FIRST time in TWO years that I have arranged having small breaks during the Summer holidays!)
Quick lunch & work emails.
Childfree trip to B&Q for screws.
Childfree trip to the gym where I snorted out a massive laugh watching this video whilst on the treadmill (WARNING, not for the easily offended ha!)
Childfree swim.  Bliss.
Had an allergic reaction to something.
Collected some parcels (new camping equipment, yay!)
Got harassed on Gumtree messages by somebody called ‘Jade.’
Home for DIY.  Realised I got wrong screws.  Bugger.
Childfree trip to B&Q for screws.
Collected babies; one happy; one sad. *sigh*
“Mummy I want a snack.”
Medical appointment for one of the said babies.
“Mummy I want a snack.”
Back home for tea.
Tantrums.
“Mummy I want a snack.”
Tantrums.
“Mummy I want a snack.”
Babies up to bed.
Told how much they love me and missed me today. *awwww* 
Lovely cuddles and kisses with my babies.
Housework.
“Mummy I want a poo poo.”
Housework.
“Mummy I want a drink.”
Housework.
“Mummy I want a drink.”
Housework.
“Mummy I want a drink.”
8:23pm: I start work for the evening when I should actually be preparing for a hospital trip to London in the morning. Bugger.

Sound familiar ladies???

One day down.  43 to go!

cheers

 

Amy Griffiths, Well Being Freedom Services Ltd ©