I have recently discovered the joys of drawing! I have been looking for things to occupy myself with, which don’t involve any chemicals, energy or too much concentration (other than tv…).
I am certainly no artist, but really enjoy taking time out to really look at something of beauty and its’ lines, colours and shape. It gives me time out of my head – which let’s face it with too much time on my hands becomes a CRAZY place to be :-p
The great thing is that I can come and go with no minimum time really needed. If I forget where I was or what I was doing halfway through it’s no big deal, I just start somewhere that looks interesting again. Not like when reading and I loose concentration through the same paragraph I have been trying to make sense of 5 times…
I can only do it every now and then as the concentration does create ‘payback’ and my brain goes on strike for a day or two afterwards, but I am enjoying it. When I can be bothered hooking this thing up to the scanner I might put some up.
Sometimes I think I don’t know what I am missing until I have it for a while and it goes again…
Mum came down from Northern NSW for a week and it was SOOOOO good to see her!!! Mick and I had our engagement picnic on Sunday 17th, which was great but FAR too exhausting… (an hour and a half in the park with some friends and family) and we had mum here for the rest of the week.
It was so nice to have her around, not only because I miss her but also because it meant I had company most of the time. It also meant that I did not have to worry about getting food etc, allowing me to recover from the picnic. Mostly it was just nice to have my mum around and feel as though I was being ‘taken care of’ and I was safe with mum around.
Mick dropped her at the airport on Saturday Arvo and I cried all night and Sunday – I really wish we lived closer to each other.
I feel a bit of a sook, although I guess most people like having their mums around when they’re unwell…
Love ya mum!!
xoxo
Yesterday as I was having my regular ’shut down break’ I was contemplating how fantastic they are and decided to write a poem to that effect…
For a bit of back-ground, a ’shut down break’ is the name I have given a technique used to help with pacing. It requires using ear plugs and an eye pillow – or other methods of eliminating sensory input and lying down for 15min like this. I do it a few times a day and it really helps with the sensory overload.
Oh how I love
My Shut Down Break
For making me feel good.
With ears plugged up, and mask on eyes
I rest just like I should
My brain it slows,
My madness goes,
My heart restores its’ beat.
My muscles take the hint to ease
From lead back into meat
The pounding in
My head subsides
To marching band of four,
A darn site less in size and strength
Than what it was before
The twitching in
My muscles slows
My breath resumes its’ role
Of in and out, and up and down
Relaxing as it goes
My blood exclaims
“oh that is right
From head to toe I go,
For quite some time I clear forgot
What was my proper role”
Perhaps by now
My point is clear,
The shut down break is grand.
It stems the overload and grants
Me back a fighting chance.
I read a really interesting post by lilwatchergirl called “It’s not easy being green and disabled” and I have been thinking about it ever since.
Ever since I became very sick over 18months ago, it has been concerning me how much impact my life now has on the environment. Previously I would walk as much as possible instead of driving, take public transport into the city, only have the heater on when it was REALLY cold (That’s what a jumper’s for…) and try not to use too many appliances unnecessarily.
Now I have the heater on most of winter and air conditioner on if the temperature is above 30 degrees… If I get too hot or cold my symptoms increase to the point of either being very painful and even dangerous. For example in the heat I can’t even stand up without falling over.
Because I am at home on my own all day I have the television or stereo on all the time and also the computer often – even though I’m not always watching it it makes me feel less alone. If I go to the corner store I have to have my partner drive me down as I can’t walk that far or drive myself.
So I do the small things that I can do – open all blinds so I only use the lights I need to, by default I don’t use the car a lot as I get very motion sick lately, and don’t have the energy to be out for very long.
I eat organic food as much as possible, no processed foods – we make all our food from scratch (when I say ‘we’ I mean Mick as he does all the cooking) 
and we buy all our vegetables from a local veggie shop which means it is locally grown, not driven or flown a million miles! That has to save a lot of petrol and chemicals and factory consequences…
It is a bit challenge for me not to blame myself and feel guilty for the use of heaters, TV, etc but I try and remember that it is not because of pure indulgence or laziness and at least I am evaluating whether or not I need these things.
I am glad this topic has been brought up because it is a challenge and one which is often overlooked by society when it comes to living with a disability or illness.
I have come in contact with some awesome women over the last few weeks, who were not only professionally brilliant, but also very respectful. A great change from the general treatment I encounter with the medical profession.
A woman from the local council’s Disability Unit came to visit a week ago, to assess my eligibility and needs for support. They are very restricted by policies (Due to lack of resources, anyone who has an “able bodied” person in the house is ineligible for in home support in terms of cleaning etc – a whole post in itself)
However, this woman was very supportive and understanding of the challenges faced by myself and my partner who works full time as well as being my sole carer – A very stressful and exhausting position. She acknowledged the need for me to have social contact as I am alone all week, and quickly set about arranging for a respite worker to visit me for an hour a week. The most amazing thing was the amount of time she spent to speak to me about how we are coping.
The second amazing woman is the new dentist I have been seeing. The prospect of a bunch of fillings and cleans was very daunting for me, as these experiences are one hazard after another particularly with the Multiple Chemical Sensitivities. She listened to my concerns, discussed the options and we decided to try as much work as we can without anaesthetic and she replaced the normal mouthwash with distilled water.
Last but not at all least, our Health Insurance Fund has a fantastic program called the Total Health Program. Health Professionals keep touch with members who have chronic health conditions, and help set goals and manage their recovery. The woman who speaks to me is incredible! She is one of the most knowledgeable people I know about CFS, is understanding and supportive as well as having a lot of information and resources to support both myself and my partner.
She also really helps by reminding me of the progress and achievements I have made over time – something that is so very easy to forget when coping with illness.
It’s like a breath of fresh air!!
Have you ever felt so alone you wonder if you’re real?
Have you ever met someone who is everything you wish you were and can turn your life upside down without knowing it?
Have you ever felt like someone just can’t understand you no matter what you say or how you say it?
Have you ever wondered where all your friends went?
Have you ever wondered if you are loosing your mind?
Have you ever felt so worthless you don’t feel like getting up?
Have you ever felt so gross you feel as though no one could love you?
Have you ever wondered what you are doing here?
Have you ever wished you had more control of your life?
Have you ever wished you could just stop feeling what you are feeling?
Have you ever prayed for more strength or understanding?
What did you do?
