A PURPLE BUTTERLY IS ONE OF MY FAVOURITE THINGS, FOR THOSE OF YOU HAVE NOT NOTICED...THESE ARE THE REASONS WHY THEY ARE AND I FEEL IT IS FITTING TO SHARE WHY WITH THIS BLOG.
The butterfly is the symbol of metamorphosis and transformation.
The symbol of new life, letting go of old cycles and finding your true inner expression.
The butterfly calls you to expand your awareness, spread your wings and call forth your inner joy.
Allowing the wind to carry you forward to your goals and dreams. A time of self-discovery rebirth. The butterfly shows you the beauty within.
Wednesday 14
I woke this morning and the moment my eyes opened I knew it was going to be a bad
day. I had that feeling when my eyes struggle to stay open and it feels like my head is full
of fog. As I sat on the toilet I actually closed my eyes and drifted off for a moment.
Lucky I didn't fall in. Not having to work I was relieved and made myself a cup of tea. I
sat in my new recliner while the children got ready for school. I fought to keep my eyes
open and I had only been up for a ½ hour. I HATE THESE DAYS. It feels like you are
not even part of the world and you are miles away. No matter what you do you just can't
fight the fatigue. I said by to the children and as I got up to go to the shower I started
having spasms. When I have a day of spasms, which usually comes with the day of
fatigue and exaggerated symptoms I struggle. My body goes stiff from the waist down
and I can't stop the spasm. Eventually it eases and I am unable to move again. They hurt,
they burn and they leave you scared you will fall . I had a shower and my legs were
burning and paining. I could tell today the pain killers were not going to help. I had
organised to go and have coffee at mum and dads and visit with an old family friend and
a friend that used to work with my mother. Both people are and have been wonderful to
me and I am proud to call them my friends as I have gotten older. I would normally go
and lay down and rest but I really needed to see these people. I have not seen them since
I got sick and they were wanting to see me and show me their support. I went and had a
lovely time catching up. Jenny is the most lovely lady and was always a wonderful
supportive person to my mother. I never worried about her when Jenny was around. Ray
the other visitor is a long term friend of my parents. He was friends with them before I
was born and I spent most my childhood life growing up with Ray around and he has
stayed a close friend. He was down visiting from Darwin, he does not live there, rather he
is there for a time whilst on his trip around Australia. Today reminded me of where my
own parents should be now. They talked and organised with Ray for years where they
would meet up and travel together whilst on their trip around Australia. BUT NO, my
folks were still here and as I told you before, they haven't yet got to go. I collapsed two
days after they moved into their brand new van and they are still where they parked that
week. They won't go and it breaks my heart all the time. I know from a parents point of
view I couldn't do it either. Go leave a sick child that is. The truth is I am not a child but I
still would be lost without them. They have had plenty of people in the community tell
them to go have a few weeks away in their van for a small trip and that they would be
here to support and look after me, but nope. I can't blame them at the moment as they
have a new grandson and they don't want to “run away “ on him. They say they will go
when the time is ready.
So after sleeping and dozing on and off all the day, I got to the stage when the boys went
to bed that I couldn't fight it any more and I went off to sleep. It is now 12pm, midnight
and I am awake. I hate this. I will struggle now to sleep for the nest couple of hours,
I will eventually go back off to sleep and then when morning comes I will be tired.
Anyway we will see what tomorrow brings.
The next day I woke up and I am having a weak day with my legs today. Pain is still
worse than usual in my mid thoracic and legs but I have therapy today so I usually get
relief from that thank goodness.
It is Saturday the 17 th and we went to a Wedding Reception for Sally and Jeremy in
Ballina at the Shaws Bay Hotel. I had a 2 hour afternoon nap so I could make it through
the reception without yawning my head off and being irritable because I was tired. I
sat and watched people at the reception having a good time, dancing and laughing and
although I was enjoying myself, I realised something that has bothered me for quite some
time now. I don't feel attractive anymore. I went to some effort today, even wore a dress
and got a bit fancied up different to my normal daily attire and as I sat there it was like
a wave came over me, I hate it, I hate the fact that even though I had put in effort I still
didn't feel nice or attractive. It could be the aide, it could be the weight gain, it could be
many things and I need to work out what it is to start to make myself feel better. Quite a
few relatives told me how lovely I looked but it didn't matter, I still did not in any way
feel even nice or anywhere near attractive. I am soul searching after tonight to find where
this and other things are coming from.
Apart from the outward appearance I feel useless, even though I know I am not. I look
after myself, my children and I work three days a week. I am on a mission to work out
where this comes from also.
I feel like I have come to a point in my illness and life in general where I need to do some
changing and reassessing certain areas of my life. I can't go on the way I am something
needs to change to make my life easier, happier and more manageable.
I feel like I am just wearing myself out on the wrong things and that something is missing from my life.
I've been contemplating for a few days and today ( Monday 19 th ) I realised I need to
admit I feel depressed. I almost fell asleep at work today. I feel tired, sad, lonely, alone
and emotional, and that is even with all the support. I had that feeling wash over me
tonight while I was cooking dinner that I was suffocating, like the days I had in hospital. I
felt like I wanted to run outside into a big wide open space so I couldn't suffocate. A few
deep breaths and I started to calm down. Then I heard “mum, what is for dinner it smells
so good” from the other room and there it is. My one constant in life, my children in the
other room relying on me. God I love my boys and I feel like I am letting them down
as a mother at the moment because I am always sick and I am always tired. If I could
afford it I would give up the job I love to stay home and rest and be as strong as I could
for them, but that is not an option financially. So I must admit this past week I have been
struggling, no point hiding it anymore, and the hundreds of other people out there with
TM know how I feel. They truly get it. I feel for every person with this dreadful illness
because you are going through horrible stuff. I know and I get it. We need to find out
more so people don't have to live like this. I know we are not terminal and I know there
are many hideous illnesses out there but TM is still to be discovered to its full extent.
I have finished dinner and am in the lounge room for an hour or so before I go to bed. My
youngest Abel is here beside me, he is never far away. Caelan and Josh are out jumping
on the trampoline and I know they just see mum with bad legs. They don't get the full
extent of the illness so one day they will be able to read this and realise what I was going
through and hopefully not think that i ever ignored them, or couldn't be bothered with
them or was too lazy to do anything with them. I just can't. And as I just wrote that Abel
out of the blue looked up and said “I love you Mum”. That is why I keep fighting, right
there. I must go now the young man has made me cry.
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