When the music just isn’t doing it….

busy-brain

Does your brain ever feel so busy that you are sure it’s about to explode?  Usually a good dance to loud music or exercise (on my good health days) really helps to clear the noise and get clarity on my thoughts.  Music is a wonderful tool for the brain, I live for music!  I wrote a previous blog about it’s therapeutic qualities which you can read here.  But lately neither exercise or music have worked.

It’s been a very difficult few months; health flare ups, massive issues with my youngest baby’s education (or lack of, but that’s whole other rant!); studying; exams; life.  I’ve been running on an empty-autopilot state for the past few months, under huge demands, not really processing much, just fire-fighting situations and trying to get through my exams.

If you follow me on social media, then you will know that despite everything going on (and being a single mummy to two wonderful quirky kids!) that my hard work paid off – I am now a fully qualified Fitness Instructor, YAY!  This means I can better meet the needs of my clients, rather than simply focussing on good nutrition.  But I will write more about that another time, sooooo exciting!

Anyway, back to my busy brain……side tracked again!  So when music and exercise fail to clear my mind sufficiently, I jump in the car and head to one of my special places to reflect and sort the crap.  I have four main special places which help me to reflect:

  1. Cardiff Bay – this is not so much the ‘place’ but who I feel close to when I am there; miss you always xxx.
  2. Caerphilly Mountain – this is a few minutes from where I live so I head there quite often if I need a quick ‘fix’ and can’t get to Cardiff Bay.
  3. My Aunty’s grave in Gloucestershire – although since moving away I haven’t had much opportunity to visit.  I need to make more time, I’m sorry.
  4. Torquay – before the babies came along, any sign of trouble or overwhelm and I was straight in that car!  Sometimes I didn’t even pre-book accomodation, just knocked on hotel doors until I found space.  These days I have to be less spontaneous due to said babies.  But we still enjoy heading to the ‘English Riviera’ once a year, although not much peace these days to reflect!

So, today I was meant to be going for a swim during my two hours of childfree time as it helps my Lymphoedema and EDS.  But instead I got the pull to grab the dog (we are looking after the most gorgeous doggie this week for a friend!) and head to Cardiff Bay.  I’ve hardly slept in weeks, so this busy head needed to empty!

It may sound odd, but when I reflect I am able to visualise a spreadsheet where I can sort all my tasks, thoughts, feelings etc into tables and columns to give me more clarity on situations.  It doesn’t necessarily always stop my brain being as busy, but stops a lot of the rushing around and muddling that can happen when i’ve been running on autopilot too long.

I envy those who successfully manage to meditate each day.  I just don’t have the alone time or patience for it, so for me I have to ‘reflect’ on the go which probably isn’t the most productive way to sort a busy brain, but hey life and shit happens.  So a calming walk around the Bay was the ‘meditation’ I really needed – I won’t dwell on the part where I had to pick up the biggest dog shit from right outside Starbucks – thanks Douglas for your audience witnessed crap! 

Welcome to my random life 😉

 

Amy Griffiths, Well Being Freedom Services Ltd ©

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 ©

Still Kicking Cancer’s Butt – Yay Go Me!

Warrior

This afternoon’s ‘office’ (Friday 14th) is sat on the step of the harbour lock at Cardiff Bay, overlooking the water.  Those close to me will know the significance of this place.  I can feel him sat with me, silently…..and then eventually telling me to get off my phone lol!  We miss you xxx.

Anyway…….

What a week!  The lead up to my Oncology check ups are always very difficult.  I tend to shut myself off from people, chuck myself into exercise (when well enough), work, studying, DIY and dance like a buffoon around the kitchen to try to dull the wait.  Sometimes it works better than others. I’m glad today is over for another six months.

Anyway, yes thats me TWO years and 7 months clear of cancer now!!!  I can’t quite believe it!  Wow, a lot has happened in those two years.  That doesn’t mean I’m ‘free’ from the aftermath of cancer mind; people forget that cancer treatment is only the very first step (but that’s another blog post!).  For me I have a love/hate relationship with my cancer.

I hate my cancer because:

  1. Of the unbearable fear it caused incase I had to leave my young kids without their mummy (anyone who knows me, knows I am a complete tigress when it comes to my babies!)
  2. Of the pain my children suffered.  I will never forget the day I had to tell them.
  3. Of the time it stole from our lives.
  4. My decision to have more kids was ripped away.
  5. I’m left with permanent daily complications.
  6. Of the chance of recurrence.
  7. I had to go through major and risky surgery – and suffered a big bleed on the operating table (I thank my wonderful surgeon each day for saving me!)
  8. I’m sometimes angry about the medical neglect and delayed diagnosis.

BUT, I also LOVE my cancer too (odd ‘ey?!) because:

  1. It’s allowed me a freedom I’ve never experienced; like proper life changing freedom!  Hard to explain, but I’m finally free.
  2. I’ve learnt to love hard and proper – never mediocre & no apologies.
  3. I’ve learnt to commit hard and proper to people, work, life – never mediocre.
  4. I can now walk away from things that don’t benefit us.
  5. I’ve learnt to appreciate the simple, thoughtful things & gestures in life.
  6. I’ve mastered the art of saying ‘no’ to people.
  7. I’m stronger, more confident and happier than ever.
  8. It’s also made me more spontaneous, ambitious and adventurous than ever.
  9. I now have a zero tolerance of bullshit. No exceptions.
  10. It’s made me more honest, open and blunt like never before (and I wont apologise for it, sorry!)
  11. It’s taught me that ‘failure’ and ‘adapt’ are two very different things.  I never fail.  Ever.
  12. I will never take a ‘passive’ role in our medical care ever again.
  13. It’s taught me that you are responsible for making your own happiness in life.
  14. It made me both limit and value those people I now welcome into our lives – feel privileged if you are still part of our ‘team.’  We Love you!  For those of you no longer in our lives, it’s probably due to number 9 on this list! *scrolls back up lol!*
  15. Finally, and most importantly; I’m a better mummy to my beautiful babies. (Ok, I was already pretty amazing before, but you know!)

So you see I have FAR more reasons to LOVE my cancer, than to hate it. I know that will seem odd to many people.  Wow, it feels odd to even say it; really wasn’t where this blog was originally heading!  Yes, there are days where I struggle to see the positives it’s given me.  But today isn’t one of those.

Cancer; you may have taken loved ones, but I can guarantee you will never take me…….I’m just too damn awesome for you baby!



Amy Griffiths, Well Being Freedom Services Ltd ©