Tuesday, September 14, 2010


13th and 14th September 2010

Sydney had totally exhausted me, I felt so zapped of energy or spirit, I had school on Monday, it would have been easy just to turn around and say I just did not want to go but because I am determined and a fighter I found the strength to go.

At least the weather was not freezing cold, it was quite mild, a cool breeze hit my skin as we walked but it was not a bone chilling one thank goodness. Chapel was first as always on a Monday morning, we sang the song 'Lean on Me' as I looked at the lyrics and sang along I thought that my Mum has been the person that I have been able to lean on when I have not been strong and she has given me the strength to carry on. We learnt about the story of Esther and how she had been chosen to be the Kings wife, it was actually like a beauty pageant, he wanted the most beautiful woman for his wife. Her people were going to be destroyed and she chose to stick up for them even if it meant losing her own life. If we can have the courage to stand up and do good things to help others then God will be beside us helping us even if what we have chosen to do is difficult.

After Chapel it was time for PE and we were doing Cricket, Super 8's cricket, I was so excited, I had actually competed in a Super 8's Cricket competition when I was in Year 5 and I had enjoyed it. This however would be different for me because now I am in a wheelchair and don't have the same coordination skills I had then. The girls played against each other and the boys versed each other. I was fielding first, this is quite difficult in a wheelchair, unless a catch came my way it was too tricky to manoeuvre my wheelchair on the oval grass to field the ball. Then I got to have a bat, when you are in a wheelchair you don't get as good a swing as you would if you were standing but I must say the wheelchair blocked the wicket from being hit. I was able to get quite a few decent hits and I had a runner who did the running. Lastly, I had a turn at bowling, in Super 8's many people especially the girls can bowl underarm, or you can throw overarm which is what I chose to do, my first bowl was fairly weak but once I got the hang of it I felt I did really well. In my over of eight bowls three wickets were taken, two run outs and a catch so I was fairly proud of that effort. It could have been four but Mum dropped a fairly difficult on handed left hand catch.

Then it was time for Integrated Studies, we had to write a journal entry about the excursion they went to on Friday which I wasn't there or what we did on the weekend, we had to use descriptive language and emotive language, I wrote about my trip back home from Sydney. I told Mum what to write and she scribed for me, that way I was able to tell my story, if I wrote I would have only completed a sentence if I was lucky.

I was feeling so fatigued and started to also feel a little dizzy and nauseated, so I was glad when it was time to leave, we decided not to go back for the afternoon as it would have been too much on me. I also have come down with what appears to be a cold, I think I picked it up in hospital because so many of the staff were coughing and sneezing whilst we were there. My eyes were so droopy as I was pushed home in my wheelchair and I just collapsed into the lounge and had a good hours sleep before waking up and playing Upwords.

We had a telephone call from Speech Pathology giving my results from the test I had when I was in Sydney. In most of the testing I was borderline average, some I was below average especially in memory, receptive language and processing, my worst which was well below average was repeating sentences. She said that fatigue played a huge role in my life in regards to speech at the moment and my ability to memorise, she said it would need to be monitored, she is sending the report as it has some suggestions for school that may assist me, one of the things is that I will need more time than the average student to complete verbal tasks or need to refer to written notes to assist.

Guess what? I won the footy tips, I only found out when I came home and checked the games, Nana and Pop told me they thought I had won when the spoke to us on the telephone when we were in Sydney and they were right, I won by just one, it was so close, I actually feel a little sorry for Pop because now I have beaten him two years in a row, next year I will be on a hat trick!

I did some knitting in the evening but found my neck became really painful and stiff, all down my right side was also extremely painful and my ankle felt like a blazing fire as it burnt with pain. I did not sleep well with the pain even though I am taking the panadol that Sydney recommended four times daily. Seeing the pain clinic seems like a waste of time now as the tablets they recommended I was told not to take because of my hormonal issues. I also woke blowing my nose and sneezing, I have been fortunate not to have any colds through winter but this is really knocking me around and draining me of more energy.

Today even though the blossoms are abundant in the trees that line the streets the weather has taken a turn and gone back to Wintry conditions, the grey sky from the morning has progressively become an angrier grey and I feel that the rain is going to tumble from those heavy laden clouds very soon. When the weather changes my pain worsens, I guess that is what happens to people with arthritis also, I cried this morning because I felt so miserable not just with the pain but also my cold, I did not want to sit up for a while because I truly felt like I was going to vomit and I just could not stomach anything for breakfast other than a sweet cup of tea.

As the morning progressed I felt well enough to sit and then get up, I sat feeling very light headed in the lounge and worked on my final design to transfer onto my canvas to paint during the school holidays, it is the one I am doing for the auction next year, for the new Ronald McDonald House in Canberra. My inspiration has been Spring and the way it makes me feel, so I am hoping that it will turn out exactly how I am picturing it in my wind and in my sketches.

I was thrilled when the time came to go to physiotherapy, Rhiannon would be able to tell me exactly what was wrong with my ankle that was injured during physiotherapy in Sydney. I was going to try to walk a little into the treatment room but my ankle was just too painful and weak. Rhiannon looked at it and checked a few movements, she came back with the foot model and explained what had happened. When I fell, my ankle twisted, two bones in the ankle hit together almost like kissing and that has caused damage which will take just a little while to repair. I should not put full weight on it at this time but I have been given some exercises to do, one where I have to just sit on the edge of the bed or chair and without putting weight on it go onto tip toes and down, then I have one where I stand and I put just a little weight on it, my last one I pull my foot up with a towel but not too much that I have pain. Rhiannon worked on my knee and hip also which have been painful since the fall also, my left side needed attention too as it has tightened as if I stand it takes all my weight. Mum did ultrasound on my ankle and knee while Rhiannon was working on the other areas. She also put heat on my neck to give it some relief. We are both excited about my rollator coming which is supposed to be today sometime but as yet it hasn't been delivered. I will not be able to do too much though because of my injury so that is extremely disappointing. Rhiannon is such a wonderful and caring physiotherapist and if it wasn't for her then I would not be getting my rollator because the team in Sydney did not think of using something like that to try to give me a little mobility that would assist me to balance also.

I am not feeling very well again, it is probably because I am due for another dose of Demazin, that is what Mum is using to try to relieve my cold, I am actually beginning to feel really nauseous again, when you have a cold your nose often drains so that is probably what is upsetting my stomach.

Gavin went to Melbourne on the weekend and he met up with Elisa a girl who had contacted him after reading my book, she works at Angus and Robertson but more importantly she is a medical student and in one year she will be a doctor, she told Gavin that after reading my book that it had changed the way she looks at her work, she was so inspired that she is trying to get extra copies of my book sent to Melbourne and she is asking her lecturer to recommend that all the medical students read it. I think that she is going to be a fantastic doctor because she will take the time to think about how her patients are feeling. Wow, this is amazing, imagine my story making a difference to the medical profession.

On these days when I may get a little down because of pain, frustration or illness it is hearing news like this that gets me back on track and reminds me of my dream to make a difference, raise awareness, inspire others and give all of myself to my cause.


Anonymous said...

YAY, Dainere,

You ARE making a difference!! Great news about Elisa the medical student talking to her lecturers about your book. Yes, it is important for doctors to know how their patients are feeling, how they are managing, etc. Putting yourself in someone else's shoes is a very powerful learning tool. You are inspiring others indeed!!

I loved hearing about your P.E. Cricket is one of my favourite things. You sound as though you caught on to batting really quickly! And Mum can't be blamed for missing that very tricky one handed catch! Very hard to get to on your left hand side, especially if you are right handed! Your bowling sounded good, too.

Do hope the weather improves and doesn't turn cold again. The primary school my sons attended has the Year 6 children visiting Canberra this week and Floriade has started, too, so good weather would be great for that, as well. How is your garden going? My pansies are quite colourful still.

It is good you have Rhiannon to help you. Has the rollator arrived yet? Hope it isn't long until your ankle is well enough to be able to use it.

Your footy tipping ended up being very close, didn't it? I hope your prize is a good one! So you are heading for a hat trick next year... what have Nana and Pop to say about that?? I'm sure they'll do their best to end your winning streak!

School again tomorrow, I guess. (You were a real warrior to go on Monday.)I do hope you are feeling much better from that cold soon and that you have a more restful night tonight.

Thoughts and prayers,


Anonymous said...

Hi Dainere, yep you certainly are a fighter .I think thats a lovely way to start School Dainere , with Chapel, you mention the song Lean on Me , well Im sure you've also heard of Foot Prints , its about someone waklking along the beach , and when they needed help , they thought that here should have been 2 sets of footprints , and at the end, the explanation is given that you could only see one set of foot prints because the person who needed help was being held up by Jesus. It is called "Footprints In The Sand", by Mary stevenson,written in 1936, its a lovely piece of writing.

Good on ya Dainere for tackling the cricket .

At least you know where you stand now with the Speech pathology report , Hopefully people will take it into account , I always turn towards them with my goodside , even though I have this supa dupa BAHA, Which incidentally Dainere has had to go for repairs .

Fantastic about winning the footy tips . Sorry about this dreaded cold , cups of sweet tea , thats a great remedy for making you feel better, the weather here in Sydney changed as well , back to winter.

Did the rollator arrive??

Thats great news about Gavin meeting Elisa , Dainere ,it will be a great tool for the young medical students , as they need to know how people feel and what they go through , in order to be able to help in a better way. You continue to think of those beautiful Ranbows , remember how special they are.

I am reading Jesica Watson's book True Spirit right now , another amazing young lady like your self , only in a different way. Well Dear Dainere , i will continue to Pray and think of you . Lots of love Stuart xx

Anonymous said...


Hello there - geez you're a tough little nut...it's just so awesome. I do think that the mucous from a cold running into your stomach often makes it unsettled. Hope the demazin works so that at least it keeps your nose from dripping and your tummy able to withstand more than sweet tea. Although sweet tea is very soothing.

I was thinking about the pet 10 commandments I posted the other day and I hope they didn't upset you. If they did, I apologise, it wasn't my intention.

Good work on the footy tips and your cricket... I reckon you can pull off the hat trick... poor Pop.

Cat hugs coming your way from my 3 cats. Give your Tinkerbelle a big scritch under the left ear for me.

Live strong.


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