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!!

Things have finally worked out so that I can get out of the house and speak to people!!!  Wow… Human interaction

The Recreation Facilitator at my council took me to have a look at a drawing group at a local neighbourhood house, which is a go-at-your-own-pace group and uses whichever medium and focus the members want to bring.  Luckily there are no acrylic or other toxic items used, so it is safe for me to go without worrying about the chemicals.

He then spoke to the Disability Unit and arranged for a respite worker to take me to the group so that I can leave when I need as opposed to waiting for the community bus to come back and pick me up.

If I am having a bad day (which is about 60% of the time and can’t get out, at least I will have company because the respite person will stay and have a chat with me.

I am so excited and grateful to this man!!!!!

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)