Well Hello! Yes,it has been awhile. Didn't mean to be gone so long but even though I had stuff to say I couldn't work out how to say it,still kind of in that place but I'm gonna give it a go.
So anyway,I'm still around,still have MS!! Would have been nice to have hit on a cure and have a good reason to have disappeared "Um yeah sorry folks can't blog to busy kicking up my heels from the miraculous cure I've discovered!"
Still having good and bad days and bad bits in the good days.
My father in law passed away 5 weeks ago and my daughter had her baby 2 weeks ago,so I am now a Grandma.Life is good and sad and happy.It's been a very rough few months but my beautiful little grand daughter Grace Elizabeth has brought some joy back.
She is our rainbow after the storm.......
Sunday, 11 November 2012
Saturday, 11 August 2012
Not much to say
I don't really know what to say any more,It's kind of all just rolled into one day after another just doing the same thing and hoping that tomorrow will be a bit better than the day before.
I try not to think too much,I end up feeling crappy if i do,so it's better if I don't.
Had Tysabri yesterday,went well apart from the usual hassle with finding a good vein.Next week I need to go to the RAH for another JC virus blood test.I'ts an awkward hospital to go to,there's very little parking close by and means a fair bit of walking.Oh well,I'll get over it!
I think this blog might have passed it's use by date,I'm sruggling to write anything and I'm boring myself with what I can think of.
I suppose I could dig down to that bottom less pit of sadness that's inside me but I'm tired of being miserable.I'm sick and tired of being sick and tired and really don't want to take mself there unless it's really necessary
I started taking more Kali-Phos tablets theu out the day and that seems to have helped a fair bit with the tremors.I also upped my vitamin D dose,not sure if I needed to as I need to go to my doctor and get the blood test results but I figured it's the middle of winter and I haven't been outside much so I guess it won't hurt.
Oh yeah,I ordered a portable ramp online today,it's to go outside the laundry door so I can get the washing trolley in and out easier,What an exciting life I lead!
I try not to think too much,I end up feeling crappy if i do,so it's better if I don't.
Had Tysabri yesterday,went well apart from the usual hassle with finding a good vein.Next week I need to go to the RAH for another JC virus blood test.I'ts an awkward hospital to go to,there's very little parking close by and means a fair bit of walking.Oh well,I'll get over it!
I think this blog might have passed it's use by date,I'm sruggling to write anything and I'm boring myself with what I can think of.
I suppose I could dig down to that bottom less pit of sadness that's inside me but I'm tired of being miserable.I'm sick and tired of being sick and tired and really don't want to take mself there unless it's really necessary
I started taking more Kali-Phos tablets theu out the day and that seems to have helped a fair bit with the tremors.I also upped my vitamin D dose,not sure if I needed to as I need to go to my doctor and get the blood test results but I figured it's the middle of winter and I haven't been outside much so I guess it won't hurt.
Oh yeah,I ordered a portable ramp online today,it's to go outside the laundry door so I can get the washing trolley in and out easier,What an exciting life I lead!
Sunday, 5 August 2012
Back.....kind of
Not sure what to say,been pretty crappy the last few days.That eye thing is horrible,the pain would be bearable if my eye didn't keep leaking.I'm constantly having to wipe it and that seems to start it throbbing which makes it tear up which means I wipe it which starts it throbbing and on and on and round and round.Crazy!!
Then last night had bad tremors and lost speech again,tremors stopped after a few minutes but the speech loss lasted over an hour this time. That is scary,so very scary.Losing my ability to communicate is very scary and lonely,I was trying to point to stuff and do charades to make myself understood but each time I tried to use my hands the tremors would start.Or otherwise my hands would either clench into fists or go rigid and be locked straight.Had to laugh though,was busting for the loo so Robert helped me with my walker,managed to get there fairly okay but walking back to the lounge my legs started doing these weird bending and stretching actions.A bit like the Monty Python department of silly walks!! Knees would come up almost to my chest and then stretch way behind me,I cracked up laughing 'cept there was no sound cos of losing my sound.
This morning I'm feeling good and it's like nothing is wrong. Sure wish it was always like this.
Then last night had bad tremors and lost speech again,tremors stopped after a few minutes but the speech loss lasted over an hour this time. That is scary,so very scary.Losing my ability to communicate is very scary and lonely,I was trying to point to stuff and do charades to make myself understood but each time I tried to use my hands the tremors would start.Or otherwise my hands would either clench into fists or go rigid and be locked straight.Had to laugh though,was busting for the loo so Robert helped me with my walker,managed to get there fairly okay but walking back to the lounge my legs started doing these weird bending and stretching actions.A bit like the Monty Python department of silly walks!! Knees would come up almost to my chest and then stretch way behind me,I cracked up laughing 'cept there was no sound cos of losing my sound.
This morning I'm feeling good and it's like nothing is wrong. Sure wish it was always like this.
Thursday, 2 August 2012
Going into hibernation
Horrible stabbing eye pain is back:o(
Eye is leaking like a tap,I won't be around for awhile need to hibernate 'til the pain stops.
Feel like shit and just need a break,MS never goes on holiday
Eye is leaking like a tap,I won't be around for awhile need to hibernate 'til the pain stops.
Feel like shit and just need a break,MS never goes on holiday
Tuesday, 31 July 2012
Life is a roller coaster
You just gotta ride it.Hmmm,I'm thinking it's more like a ferris wheel.
A roller coaster has an end to the ride,you start off and the ride has ups and downs and twists and turns but it does have an end point,a destination of sorts. A ferris wheel just goes round and round in the same cycle,no end in sight,no destination,not going anywhere.Just this endless cycle of struggling to get to the top.It stays there for a second or two and then it starts it's slow descent downwards,it gets right to the bottom.Do you get off,or stay on for the climb to the top again.Okay the view on the way up and when you finally reach the peak again can be pretty awesome,but is it worth it,is it worth the descent and the time at the bottom,only to start struggling back up again.Round and round,no end in sight,just an endless cycle.
A roller coaster has an end to the ride,you start off and the ride has ups and downs and twists and turns but it does have an end point,a destination of sorts. A ferris wheel just goes round and round in the same cycle,no end in sight,no destination,not going anywhere.Just this endless cycle of struggling to get to the top.It stays there for a second or two and then it starts it's slow descent downwards,it gets right to the bottom.Do you get off,or stay on for the climb to the top again.Okay the view on the way up and when you finally reach the peak again can be pretty awesome,but is it worth it,is it worth the descent and the time at the bottom,only to start struggling back up again.Round and round,no end in sight,just an endless cycle.
Absolutely Exhausted
All this swimming,diving,kayaking,horse jumping,gymnastics basketball etc,etc,etc,has me totally stuffed,Need to rest up but I've still got the boxing and cycling to get through before the athletics start,I have decided to withdraw from the hammer throw this time round,don't seem to have the strength in my arms to get that thing any distance.Must be an MS thing.
Lucky for me the olympics is only on every 4 years,and being on the other side of the world there's something worth watching when I'm awake during the middle of the night,getting annoyed at dropping off to sleep in the early hours of the morning just before the swimming finals start.I wake up and it's all over!!
At the moment my vampire sleeping pattern isn't bothering me,least I get to see some of the sports.
Lucky for me the olympics is only on every 4 years,and being on the other side of the world there's something worth watching when I'm awake during the middle of the night,getting annoyed at dropping off to sleep in the early hours of the morning just before the swimming finals start.I wake up and it's all over!!
At the moment my vampire sleeping pattern isn't bothering me,least I get to see some of the sports.
Friday, 27 July 2012
Let's see what comes out
Firstly though a quote that I love
"Be Soft - Do not let the world make you hard. Do not let the pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place."
Not sure what's going on with me.At night I lay awake listening to Robert snore then I turn the fan on partly to drown out the snoring but mostly because I'm so damn hot that I feel like I'm on fire.Then during the day I'm so incredibly cold I have 2 heaters going and sometimes I sit with a blanket over me too.I usually go to bed to try to get warm and to get some sleep from being awake most of the night.
I'm not depressed though,surprisingly,I am a bit sad but it's normal sad,I'm not in the pit or even on the edge of it.
Just trying to be and not over think things,this will all work out if I let it and not try to force things or try to make it what I want.
Don't really know what I'm saying nothing makes sense,I think I'm over trying to understand MS and it's effect on me.It's all totally random and does weird stuff to me.The drugs they give you for the weird stuff do more weird stuff and I think I just want to stop trying to find answers.
Too many questions without answers,what works for some doesn't work for others.
I just want some peace and quiet and for my brain to stop whirring and playing tricks on me.
The sun is shining and it's glistening on a rain drop and there's a magpie wandering happily round the backyard.
"Be Soft - Do not let the world make you hard. Do not let the pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place."
Not sure what's going on with me.At night I lay awake listening to Robert snore then I turn the fan on partly to drown out the snoring but mostly because I'm so damn hot that I feel like I'm on fire.Then during the day I'm so incredibly cold I have 2 heaters going and sometimes I sit with a blanket over me too.I usually go to bed to try to get warm and to get some sleep from being awake most of the night.
I'm not depressed though,surprisingly,I am a bit sad but it's normal sad,I'm not in the pit or even on the edge of it.
Just trying to be and not over think things,this will all work out if I let it and not try to force things or try to make it what I want.
Don't really know what I'm saying nothing makes sense,I think I'm over trying to understand MS and it's effect on me.It's all totally random and does weird stuff to me.The drugs they give you for the weird stuff do more weird stuff and I think I just want to stop trying to find answers.
Too many questions without answers,what works for some doesn't work for others.
I just want some peace and quiet and for my brain to stop whirring and playing tricks on me.
The sun is shining and it's glistening on a rain drop and there's a magpie wandering happily round the backyard.
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