Having one of those days where you feel like you're being ignored, left out, cast off, held back or treated with disdain?
Well, I'm pretty sure I've felt all of these at some point (and all at once at a few doctor appointments!).
But, after giving myself a few hours to wallow in the unfairness of it all and sometimes have a frustrated cry (complete with full on ugly sobbing
!), I like to focus on the truth. My truths.
1. I'm ill - my mother had me tested ( sorry, love The Big Bang Theory!)
2. I can't help it or do much about it
3. I know my body and health better than anyone else
4. Other people's opinions are worth as much as you let them.
A quote from a singer talking to the audience at a concert I went to once ... 'You are not the opinion of someone who doesn't know you. You don't have to be perfect, get everything right or know everything, you just have to be you'.
This really resonated with me. As a perfectionist who strived to keep everyone happy and 'played well' for too long, it struck a chord. To hear someone who seemed to have it all have the same emotional struggles as me was enlightening.
So, as someone who loves to be positive I wanted my blog entry today to be about good media attention for ME/CFS. Take a look at some of these:
The huffington post ran an interesting piece today about the danger of invisible illness and comparing the spending on ME research with the funding for male pattern baldness treatments. http://www.huffingtonpost.com/entry...is-more-dangerous_us_5798d772e4b0e339c23fff38
Let's do it for ME, is a UK community that fundraise for the charity Invest in ME. A young girl wrote to Micheal Bond the writer of the Paddington Bear books to tell him about their Adopt a bear fundraising and he wrote back in support. Their website has some lovely stories https://www.facebook.com/ldifme/
Lastly an article regarding a conference in the UK discussing diagnosis and the future of research and treatment. http://www.thecanary.co/2016/06/08/people-mecfs-long-told-head-scientists-disagree/
On those days where I feel like it's me against a doctor, relatives, colleagues or the world I like to remember Ally McBeal. Honestly, stay with me!
In the 90s tv show the lead character had a theme song. She sang it in her head to give her confidence, like a little pep talk. I used this all through school when I had to walk through the halls I sang Eminem's Without Me in my head ( it has a great beat to confidently strut to!).
Nowadays, I like to channel a bit of Katy Perry, not everyone's cup of tea and very bubblegum pop but I'll leave you with the lines that make me feel empowered:
I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything
You held me down, but I got up (hey!)
Already brushing off the dust
You hear my voice, your hear that sound
Like thunder, gonna shake your ground
You held me down, but I got up
Get ready 'cause I've had enough
I see it all, I see it now
I got the eye of the tiger, a fighter
Dancing through the fire
'Cause I am the champion, and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion, and you're gonna hear me roar!
Well, I'm pretty sure I've felt all of these at some point (and all at once at a few doctor appointments!).
But, after giving myself a few hours to wallow in the unfairness of it all and sometimes have a frustrated cry (complete with full on ugly sobbing
!), I like to focus on the truth. My truths.1. I'm ill - my mother had me tested ( sorry, love The Big Bang Theory!)
2. I can't help it or do much about it
3. I know my body and health better than anyone else
4. Other people's opinions are worth as much as you let them.
A quote from a singer talking to the audience at a concert I went to once ... 'You are not the opinion of someone who doesn't know you. You don't have to be perfect, get everything right or know everything, you just have to be you'.
This really resonated with me. As a perfectionist who strived to keep everyone happy and 'played well' for too long, it struck a chord. To hear someone who seemed to have it all have the same emotional struggles as me was enlightening.
So, as someone who loves to be positive I wanted my blog entry today to be about good media attention for ME/CFS. Take a look at some of these:
The huffington post ran an interesting piece today about the danger of invisible illness and comparing the spending on ME research with the funding for male pattern baldness treatments. http://www.huffingtonpost.com/entry...is-more-dangerous_us_5798d772e4b0e339c23fff38
Let's do it for ME, is a UK community that fundraise for the charity Invest in ME. A young girl wrote to Micheal Bond the writer of the Paddington Bear books to tell him about their Adopt a bear fundraising and he wrote back in support. Their website has some lovely stories https://www.facebook.com/ldifme/
Lastly an article regarding a conference in the UK discussing diagnosis and the future of research and treatment. http://www.thecanary.co/2016/06/08/people-mecfs-long-told-head-scientists-disagree/
On those days where I feel like it's me against a doctor, relatives, colleagues or the world I like to remember Ally McBeal. Honestly, stay with me!
In the 90s tv show the lead character had a theme song. She sang it in her head to give her confidence, like a little pep talk. I used this all through school when I had to walk through the halls I sang Eminem's Without Me in my head ( it has a great beat to confidently strut to!).
Nowadays, I like to channel a bit of Katy Perry, not everyone's cup of tea and very bubblegum pop but I'll leave you with the lines that make me feel empowered:
I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything
You held me down, but I got up (hey!)
Already brushing off the dust
You hear my voice, your hear that sound
Like thunder, gonna shake your ground
You held me down, but I got up
Get ready 'cause I've had enough
I see it all, I see it now
I got the eye of the tiger, a fighter
Dancing through the fire
'Cause I am the champion, and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion, and you're gonna hear me roar!
