Hello
Our Beautiful Blogger Arme.
Welcome
to our sixth official blog discussion everyone.
We hope
you are as comfortable as possible right now
For so
many of us, there are few places for us to turn. To turn to for many reasons,
be it need for understanding, escape from circumstance, etc etc.
As we
have spoken about in previous blog posts, most of us are not able to do the
regular 'self-soothing' acts that most regular people can. We can often not
ring a friend for an understanding chat, pound frustration out in a jog, eat a
tub of comforting ice-cream and so on.
Music,
is one thing I know some of us turn to, including myself.
Music
has that incomprehensible way of empathising with intimate feelings, even if
the song is about something completely different to the problem we are facing
at said time.
When I
began taking a particular medication, whilst trying to find an appropriate
dosage, I would have severe reactions to the higher dose. These reactions occur
during my regular life, but would happen all together and severely after taking
aforementioned high dosage.
I would
fit partially, have partial paralysis, loose vision, loose hearing, vomit, have
violent diarrhea, have clawed hands, have hyperventilation, amongst others etc.
Having
all this at once, and severely, was such a shock for my body each time. When
bodies go through things like this, they go back to that old 'fight or flight'
notion. But this is not actually always best for ones body. The best thing is
to relax, let the symptoms happen, so that when they finish, you can recover
quicker. If you do not relax when your body goes out of control and takes a
heck of a longer time to recover.
Jodi:
That is all so true Alison. Stopping yourself from getting too worked up is so
important when you're extra ill, but of course it is very difficult too! It is
a skill that takes a while to learn as well.
Alison: Absolutely.
Relaxing when your body is out of control is so much easier said than done. But
after lots of attempts, I did get better at it.
One
reason for this, is that I used music. I would sing quiet songs in my head.
Concentrating on them, trying to get my havoc breathing into the simple rhythm
of the music. A form of meditation in a way I guess.
Please
don't get me wrong here, I in no way believe simply relaxing can abate all M.E.
symptoms. What I mean is that if you panic on top of symptoms, they take even
longer to recover from. It is here where music can help.
This is
a practice that I have kept in place throughout my life ever since. No matter
the symptom or experience, I find it can help.
For me,
I mostly use praise songs nowadays. And at night I also listen to a very gentle
songs to settle me down, such as Norah Jones.
Jodi: I've
used music and relaxation/meditation CDs to get through very difficult times as
well, it can help a lot. It can help in ways that you just can't get from other
things, if you choose the right music!
Repeating
a mantra to yourself over and over and telling yourself all you have to do for
now is focus on repeating your mantra and breathing slowly can also help. You
have to keep reminding yourself that everything you have to worry about can
wait.
Alison: People
can also communicate through mediums such as music and poetry in a way they can
not simply through words. And this is such an important thing, for people whose
voices are often laboured, lost or outweighed, to feel they can actually
manifest their feelings, thoughts or beliefs. It can sometimes even mean the
difference between a life and an existence, which should never be mistaken for
anything other than incredibly vital.
Jodi:
Well said Alison, I completely agree with all of that.
Alison: Thanks
Jodi!
I also
love to sing. I am terrible at it but who cares, I don't have to listen!
Jodi: Me
too, Alison, sometimes. By which I mean I sometimes like to sing, but that I am
absolutely always terrible at it!
Alison: I
am not well enough to sing a lot, or certainly sing full throttle, and I have
so much scaring and also muscle degeneration in my throat that the quality of
my voice and vocal range is even worse. But the feeling I get when singing,
it's hard to describe, it's like it completes a part of me, that simple
expression can not usually touch.
I also
personally write poetry. I keep it a secret in my life, but I have mentioned it
in a previous blog discussion because I feel so passionately that you all know
that you are not alone.
Basically,
I had had the feeling all of my life that I should write. But when I would try,
my ego would be so ashamed at the lack of quality, that I would throw it away.
And then
my mother died. And I realised how vain I was being. That my poetry didn't have
to be beautiful, or change the world. It simply had to serve a purpose to me.
As the saying goes 'Screw the results, Relish the process'. And so I have
written ever since.
Jodi:
Painting to me is like that too. Sometimes it is about the end result and
sometimes it is the process you get more out of and that is actually the main
focus of doing it. There is a lot going on inside our brains when we create
things and express ourselves in these ways, absolutely.
Alison: Your
paintings that I have seen are so beautiful!!
I used
to draw, and also do watercolour painting. But since my severe relapse I've
just not been able. One doesn't have to do elaborate things, even colouring in
simple children's colouring books can be soothing.
I write
more honestly than I am elsewhere in my life. I write the things that I can not
say aloud, or even admit to myself. I
write about anything and everything, first person or abstractly. My current
life, my imagined life, experiences of my own or my families, or things that I
see happening on the news or even in TV shows.
Getting
my thoughts out of my head into a poem can stop continuously rotating thought
sometimes. We all know what it is like laying for hours, with something
difficult or stressful on our minds, yet we have so little way of externalizing
them. Emailing a friend, writing in one of Jodi's wonderful yahoo groups, are
great ways, but sometimes it helps to write poetry too. You know that phrase
about putting a thought in a box, locking it, and putting it the back of your
mind? I find that pretty impossible. So poetry helps me with this sometimes.
I think
maybe some of the things I write about are my way of dealing with things, or
processing my thoughts and emotions.
Jodi: It
sounds like an empowering, and also I hope enjoyable experience Alison. (And
thanks for your nice painting comments previously!) Expressing yourself in other
ways when you are so limited in speech etc. is vital when you are severely ill,
if it is at all possible.
To relax
I really like Mozart or other very mellow classical music, or good quality
non-verbal world music (such as 'Sacred World' or 'Journey into Light') or
meditation music. Weeding out all the 'marching to war, super-loud and full on
classical tracks can be hard though!
When I
am full of frustration at my situation or the situation facing a M.E. patient
friend of mine or the terrible plight of M.E. patients generally I like PJ
Harvey, Camille, The Pixies, The Breeders, Beck, The Smiths and lots more I can’t
think of at the moment and most especially the very raw and emotional bits of some
songs by these artists. It soon changes my mood for the better if not actually
making me smile. I wish I were well enough to listen to 'fast' music like this
a lot more often. It is annoying having your illness dictate to you what music
you can enjoy most of the time, along with so many other things. I'd listen to
lots more PJ etc. if I had free reign.
Alison; Thanks
sweetie. I wouldn't so much so much say empowering, more word and thought
purging, does that sound gross?! :-P
Absolutely
agree, having even your music, film choices dictated by your M.E. is beyond
frustrating to say the least!
Jodi; This
week I have just discovered a book of poetry called 'Love is a Dog From Hell' by
Charles Bukowski. It was written right around the year I was born and is very
raw in parts. I'm not a huge reading poetry fan but I'm absolutely loving it.
Last week I listed to a free recording of the whole 'The Raven'poem by Edgar
Allen Poe too. It was very well done, and almost as good as 'The Simpsons' version!
*smile* I recommend downloading it!
Alison: Thank
goodness for ipods/ipads/media tablets/computers, where you can literally have
thousands of songs, poems and artwork at your fingertips!
We would
love to hear via the simple comment stream below what roles things like Music, Art
and Poetry play in your lives, and what pieces of Music/Art/Poems helps you. We
love interacting with you all.
May I
take this moment to re-request that if you wish to remain anonymous, which is
perfectly understandable, can you leave a way for us to establish who is who, especially
for competitions so we can identify you individually and announce who the
winner is easier. You can use pseudonyms, codes, whatever you like. And
remember I (Alison) reply to every comment made, except competitions as I do
not feel it is fair, so check back a week or so after commenting. Your comments
help other readers know they are not alone, and help us know if our posts help
at all etc.
Thank
you for reading this blog discussion, and simply for being you.
So for
now., we hope you have as comfortable day as you can., knowing we admire you
all.
Best
Wishes, Much Love and Blessings,
The
Tinkerbelle and Hummingbird
M.E. Blog x x
A Poem
from the book Jodi referenced above;
'The
writing of some
men
is like
a vast bridge
that
carries you
over
the many
things
that claw
and tear.'
The Wine
of Forever
― Charles Bukowski, Love is a Dog
from Hell
Quotes;
'"Music
says it's OK to be human, OK to ask questions, OK to feel things
deeply." Twloha
"Music
expresses that which cannot be said and on which it is impossible to be
silent." - Victor Hugo
"Music
acts like a magic key, to which the most tightly closed heart opens."
Maria von Trapp
'Where
words fail, music speaks.' Hans Christian Andersen
'Music
expresses that which cannot be put into words and cannot remain silent'. Victor
Hugo
'Music
is the universal language of mankind.' Henry Wadsworth Longfellow
'Music
in the soul can be heard by the universe.' Lao Tzu
'Love is
a friendship set to music.' Joseph Campbell
'Music
is what life sounds like. '- Eric Olson
'Sometimes
the break in your heart is like the hole in the flute. Sometimes it's the place
where the music comes through." - Andrea Gibson
©TheTinkerbelle+HummingbirdM.E.Blog
