Humility

On Monday I threw my back out by rolling over when I woke up.  If I’m to tell the whole story, it really begins on Sunday when Mick’s parents came around for lunch.  Usually I don’t spend any more than half an hour to an hour on our couch because it doesn’t support my back well at all, however with visitors I had no-where more supportive to sit if I was to spend any time with them.  The stress on my back meant that after sleeping and seizing up, it only needed to move and it went out.

This happened as Mick was saying goodbye on his way to work.  The pain was so intense that I was gagging and couldn’t move.  All day was excruciating, despite taking Nurofen+ but the most difficult part was not being able to move.  I had a respite worker come around for 2 hours which was helpful and she helped me to the bathroom and back, and into bed again.

This is not a one-off.  Every time I come close to chemicals – cleaning products, fragrances, cigarette smoke etc I loose all ability to move my muscles, get a terrible headache and nausea etc.  Not to mention the times when I have done too much and ‘crash’ (too much can be talking on the phone for 30min or standing in the kitchen for more than 5min.)

It is a lesson in humility.  For someone who is used to being independent, it is quite an experience to be so dis-abled that you need someones help to use the bathroom.  Showering and dressing etc. is one thing, but there is a different element of helplessness when it goes that far.  It is a feeling you can’t imagine unless being in the position yourself.

Millions of people experience this every day of their lives, and for those of us who have an “invisible illness” it can be made harder by the fact that people don’t even acknowledge that we are unwell.  Mick’s parents will never know the impact that their visit had on me (which is fine by the way because I am still too embarrassed to discuss it that openly with them).

We never know what someone else is experiencing, which makes it so important to be compassionate regardless of what we think we see!!!

 

Daring to Stare!!!

Ok, I know I am trying to be positive, but I have to get a beef off my chest.  Last week Mick and I thought we would attempt to go out for lunch.  It has been a long time since I’ve been out to do something nice – last time was our engagement picnic which was a bit full-on!  We went to a nice little cafe which is away from any main roads and serves organic food.  We have been there before and thought it would be the safest option.

The people at the cafe were great despite the fact that they were full, and we found a table around the corner where there are only 3 tables and I could sit in my wheelchair.  We were having a nice time with our coffee when a couple sat at the next table and the woman was wearing perfume, so I quietly put on my mask.  It is very good at keeping small amounts of chemicals from bothering me.

We were still enjoying ourselves although it was a bit difficult to finish my coffee However my mood quickly dropped when I noticed that the woman who had recently sat down was staring at me.  Now I think I’m a fairly reasonable person, and I know that people will have a bit of a look as it’s not exactly common to see someone in a wheelchair with no hair wearing a giant mask over their nose and mouth.  But staring, seriously!  The best bit, was that she was talking to her friend who then turned around to stare as well for a good couple of minutes before turning back to her who STILL had not looked away.

It is one thing to have a look and see what is happening around you – another completely to stare in such an obvious fashion.  I felt so embarrassed and wanted to go home.  We stayed a bit longer and luckily they moved to a different table where I couldn’t see them at least so it didn’t end up so bad after all.  It’s not as if I need any more encouragement to feel self-conscious and upset about being in everyone’s way when we go out, but I guess that wouldn’t occur to people who see me on the street.

Anyway, other than that it was kinda nice to go out.  We had to go before I finished my food because it took a long time to come and I was exhausted by the time it did – also a group of people sat in the place of the couple and proceeded to chain smoke which comes even through the mask so we called it a day.  I crashed for a good few days afterwards but it was nice to be out and maybe next time we will order our food before we leave home.

In good news:

I have found a drawing group who are so welcoming and nice – now to work out how to get around the fact that the respite worker isn’t allowed to lift my wheelchair in and out of the car so they can’t take it… It just cracks me up!!

 

Birthday Celebrations

I turned 28 yesterday – Very mixed emotions going around my head regarding my birthday…

If I think about it, a lot has happened over the past year: Mick and I got engaged, we moved house, I learned a lot about managing the CFS and have learned a lot about myself.  Really some big achievements if I think about it.

However I have also experienced a lot of loss: moving from a house I felt comfortable and safe, realising I will probably not be able to return to the very demanding job of kindergarten teaching at least for a long time, having all the specialists tell me there is nothing they can do anymore… and the list goes on.

I am coming to terms with my new role in life (sometimes I wonder if I have one lying in bed most of the day), and trying to work out what my life means to me at the moment – big questions.  On top of that, being unwell makes me much confident in myself in so many ways… the most obvious being my appearance as I do not have the energy to keep up a lot of the “beauty grooming” such as shaving, eye brows etc and have had to shave my head.

I had lunch with Mick’s and my families on Sunday, which was really nice – although exhausting.  I nicked off in the middle for a ’shut down break’ (see below) but I have still crashed as a result!  I do really appreciate his family being so welcoming and caring, especially at the moment.  His mum gave me a ‘afternoon tea set’ and Mary Poppins the sing-a-long version which was so thoughtful considering my current lifestyle.

I guess birthdays are always a time for self-evaluation and I am trying to see the achievements I have had considering the challenges I have faced… Not easy for a perfectionist :-p

On the plus side, Mick got me pastels and good paper for my birthday, so I have been spending the little energy I have had experimenting and having fun… Yay!! (with my tea set of course)

 

Missing Mum!

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

 

Ode to the “Shut Down Break”

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.

 

Environmental Impact of Disability

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.

 

Have You Ever?

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?