3 Too Many

 I’ve now decided that sleep and I are distant strangers again. And while I was granted a couple of hours “rest” on Saturday night, it just isn’t enough to get you through a day. The other trouble is still trying to pick out what is sleep and what really is seizures. It just so really pissess me off see I can be there in the moment then, gone. Honest out is that quick! Then within that there is the fact I can still hear process and function. Then the other timeout I have where slightly longer and wham everything gone for all money. And the frequency it’s happening? Well give you an idea, I have gone out at least 6 times since starting to write this! This is what scares me so much. The mirror incidents – yes it was 2 mirrors all up so 14 years bad luck (add it to the bill) and a glass, but anyway, how long before the injury comes with it – shaving slices a side? They warned me to cross roads only at crossing points, be careful swimming, etc – you know the basics you give a 10 year old not a 45 year old man! I thought they were joking. I’m not laughing.

 

On top of this I am having a terrible time with balance and reflexes. There is talk of getting a walking frame to assist me on bad days. Do you know what that is like to even try to process in your mind? I can stand and I can walk I just get ‘wobbly’ some times. And as for the breathlessness, that is yet another kettle of fish. I guess what I am trying to get to is that yep I pack the sulks as good as anyone, be short and very aggressive, and say or do things that are immature and while I can blame tumors, it is not an excuse no more so than having it pinned out or slammed back at me, can we try to achieve a mellow ground to live upon. If you can’t handle what is happening to me then don’t read the blog. You’ll find out on the wind when I get to write my last one. I need to focus my life now on achieving all I can for those that are left covering this new path on this messed up journey. Everyday I am learning something new about me – every bloody day. Feel free to join the journey of what I do learn some times – it can be interesting. This is a general message for you all as something that becomes very evident as the journey goes (and I was told this by several people at the start that those you think are the closet to you and understand you will be the ones who dig deepest into your heart as that can’t handle it).  I have so far lost a lot, more than I care to measure, and from this point on I will no longer be wasting energy on saving my losses as they will be taken wrong. For you folk that will be stopping reading the blog (not that I want you too) – ” Live in peace with a full heart”

 

Now those that want to blog on. Just lets say not even a crap sleep – just no sleep so feeling a little fragile today!!!  OK?!?!?! So nothing new there. I have had about 3 hours sleep in days days to be truthful.  Up at 5am, funny when I last remember looking at a clock at 4:30am going to sleep.  Not too early and meds and a cuppa tea go down as usual. Help Sue get moving as her back is causing agony too, – just not fair this pain that is getting dealt out.  It’s going to be a warm day so no point missing out (already going to miss enough dropping on and off washing done and out. Chores to tackle around the house – yay get a chance to annoy a couple of teenagers! Oh vengeance is sweet.  Actually the whole house is sleeping in except me, so I just shuffle on in silence.  Only one engagement today, and that is Murray and Elaine or old neighbors are stopping by about 2 pm so will be fantastic to see them.  The family get up and get ready for the day.  No stupid acts today after the shower like yesterday, where I was that messed up that I got out of the shower didn’t dry (cause I thought I had already done that!) and put on my moisturiser (yes – I wear it – and???) and deodorant then went – shit, dumb ass! Yep life is really interesting with me at the moment. An adventure in every hour. So watch out work – less than 24 hours too gain your sanity before I ruin you again   Then get ready for the day. Decide to head to Riccarton House market for a look for last minute Xmas gifts. Find no gifts but go for a walk through the bush sacnutury for tghe Kiwi – amazing a Kiwi encloursue in the middle of suburbia).   Had a brilliant walk – slow  but fun.  Goodness it is getting hot!!  Midday and already 28 degrees.

 

I had a read about a wee fella 5 year-old (brain as well – son of a guy I went to high school with actually) – Lachie Sutherland.  He head spent some of Saturday at the beach having a ball as he has just finished another round of treatment. What a real trooper! Chris – hope you don’t mind, but the fight that Lachie has and puts into effect gives me energy to regroup for my battles. I ache about the house moaning because my body hurts, but he is running around the beach carefree lines in still – so what. It shows that to be an adult and to let that child inside out can be such a good thing. I will now take a leaf from the Lachie Sutherland school of cancer fighting! Hope the treatment keeps working and keep up the fight.  It gets tough – really I do know.

 

Muck aground getting through the day. Try to convince the boys to give me a haircut and not a slashing but takes some effort and they don’t do it.  Very criusy day altogether. Fantastic too see Murray & Elaine again. Both are looking very healthy and happy.   Cook dinner then intend to blog it out, but rest for 3 hours and then  bed time already for the night demons to come to visit. Oh well, just another messed up day in my messed up life. Really hope that all have had a brilliant time and loads of fun today. Thinking of you all always. Thank you for all the incredible awesome support. I can’t ask for any better. Keep cool till after school.

 

Kia Kaha.