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.
Tuesday 31 July 2012
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.
Wednesday 25 July 2012
Crappy days,crappier nights
It's 6am I got up at 4.30 this morning after spending the night tossing and turning,chucking the quilt off then wrapping it back round me again.Nudging Robert so he'd turn over and hopefully stop snoring!
It's the middle of winter,it's cold really cold so why do I need to sleep with the fan on? I laid awake for ages last night arguing with myself about turning it on,I mean come on it's like 3degrees celcius outside you really don't need a fan on.Then I think,yeah I do.I think it was about 2 o'clock when I shuffled my way to yet another toilet trip and then went outside for a bit,geez it was cold!! but it felt so good.The dog looks at me like I'm crazy,maybe I am a bit. Then I went back to bed to warm up 10 minutes later I'm warm to the point of boiling again,so that's when I decided it was fine to put the fan on.Dropped off for a couple of hours and decided to give up so got up.Now I'll stay up 'til David leaves for school and probably sleep the day away again.
I don't have anything new just an increase in existing symptoms so I'm not sure if this is a full on relapse or just a reaction to doing way to much on my good days
I hope this all stops soon,I've got some steroids here,that if things don't start settling down soon I'm going to have to start taking.I'll avoid that for as long as possible,those things are evil.I can do without another dose of roid rage!
Okay,enough bitching,coffee is calling.
It's the middle of winter,it's cold really cold so why do I need to sleep with the fan on? I laid awake for ages last night arguing with myself about turning it on,I mean come on it's like 3degrees celcius outside you really don't need a fan on.Then I think,yeah I do.I think it was about 2 o'clock when I shuffled my way to yet another toilet trip and then went outside for a bit,geez it was cold!! but it felt so good.The dog looks at me like I'm crazy,maybe I am a bit. Then I went back to bed to warm up 10 minutes later I'm warm to the point of boiling again,so that's when I decided it was fine to put the fan on.Dropped off for a couple of hours and decided to give up so got up.Now I'll stay up 'til David leaves for school and probably sleep the day away again.
I don't have anything new just an increase in existing symptoms so I'm not sure if this is a full on relapse or just a reaction to doing way to much on my good days
I hope this all stops soon,I've got some steroids here,that if things don't start settling down soon I'm going to have to start taking.I'll avoid that for as long as possible,those things are evil.I can do without another dose of roid rage!
Okay,enough bitching,coffee is calling.
Tuesday 24 July 2012
BANG!!! Just like that
The good days are gone and the symptoms hit with a vengeance.Bact to needing the walker in the house,yesterday and this morning was walking almost with no limp at all.Was able to walk outside with no problems,not far,just round the garden but I was walking great.
Then this afternoon started to struggle,balance was off really badly and then the tremors started.Even laying down didn't stop them,nothing new just all the old stuff back to remind me I have MS.It is not me though.
Tomorrow is another day and hopefully a better day.
Then this afternoon started to struggle,balance was off really badly and then the tremors started.Even laying down didn't stop them,nothing new just all the old stuff back to remind me I have MS.It is not me though.
Tomorrow is another day and hopefully a better day.
Monday 23 July 2012
Please don't
Please don't read one posting of this blog take one word out of context focus on that one word and then twist it and condemn me for it. Please take the time to get to know me before any judging of me takes place.
Read my words as they are written,not with the inflection you choose to place on them.
That's all I've got today,being open and honest is over rated.Sure I'll bounce back,don't let the turkeys get you down Alison.
Just went to start the coffee machine and thought I needed to come back and write some more.
Thank you to those people who understood what I meant and very special thanks go to Jackie,for getting me,for knowing what I meant by yesterdays post.Thank you.
See,I can do this I can focus on the positive and not the negative! Might take me awhile and I have to get the negative out of the way first but I can find positives!!!
Read my words as they are written,not with the inflection you choose to place on them.
That's all I've got today,being open and honest is over rated.Sure I'll bounce back,don't let the turkeys get you down Alison.
Just went to start the coffee machine and thought I needed to come back and write some more.
Thank you to those people who understood what I meant and very special thanks go to Jackie,for getting me,for knowing what I meant by yesterdays post.Thank you.
See,I can do this I can focus on the positive and not the negative! Might take me awhile and I have to get the negative out of the way first but I can find positives!!!
Sunday 22 July 2012
Write first,then think of a title
Haven't been able to get my thoughts out the last few days,I've had so many emotions whirling around in me and I didn't feel that I could talk about stuff seeing as it was all about someone else. I need to get it out though and so here goes.
My friend Jackie,has been one of my greatest supporters and has encouraged me with my blog every step of the way.With out her continuing to cheer me on I probably would have given this up months ago,she is an awesome lady and I am so glad we connected online.
Here's the thing though,Jackie has just been told she was misdiagnosed.Yep,that's right,"Ooops,sorry" You don't have MS Jackie,you actually have 2 tumours in your brain.Excuse me? What the fuck? So Jackie has been walking around for the last 7 months with tumours and not MS. All her symptoms have been caused by these things mimicking MS Symptoms and doctors who diagnosed her wrongly have been treating her with drugs that have made her feel worse.
I am so fucking angry I could scream,I can't believe that medicine is such an inaccurate science as to misdiagnos some one so wrongly. To treat someone with drugs for one problem that made what was really wrong even worse and then want to chuck different drugs at her still treating the wrong thing.
Fortunately? The tumours are non cancerous,imagine if they were,untreated for months growing with no treatment to stop them,only drugs for another disease,making things worse.
So now Jackie needs to take high dose steroids to shrink and bring down the swelling(caused by MS drugs) of the tumours before beginning radiation treatment,all the while having to trust doctors who got it wrong in the first place.
I'm angry for her,I'm angry at the doctors.
I'm so very glad that it was discovered before too much damage was done.I am rejoicing and so glad that she doesn't have MS and in a bit once all the treatment is done Jackie will be well.
I am ashamed to admit a tiny bit jealous,that Jackie will have her life back( I hate admitting this,but need to be honest) of course what she now has to contend with is no walk in the park and I hope that I can be as caring and supportive as she has been to me.
I'm also scared that maybe she won't need our friendship anymore.I was so grateful to meet someone I connected so well with, our shared MS experience drew us together and I'm worried that once that is gone will our connection? I felt I'd met someone who truly "got" me,I sure hope that won't be gone.I don't want to be lonely again.I know how selfish this all makes me sound but my overriding emotion is joy.I can't put into words the happiness I feel that Jackie doesn't have MS.
My friend Jackie,has been one of my greatest supporters and has encouraged me with my blog every step of the way.With out her continuing to cheer me on I probably would have given this up months ago,she is an awesome lady and I am so glad we connected online.
Here's the thing though,Jackie has just been told she was misdiagnosed.Yep,that's right,"Ooops,sorry" You don't have MS Jackie,you actually have 2 tumours in your brain.Excuse me? What the fuck? So Jackie has been walking around for the last 7 months with tumours and not MS. All her symptoms have been caused by these things mimicking MS Symptoms and doctors who diagnosed her wrongly have been treating her with drugs that have made her feel worse.
I am so fucking angry I could scream,I can't believe that medicine is such an inaccurate science as to misdiagnos some one so wrongly. To treat someone with drugs for one problem that made what was really wrong even worse and then want to chuck different drugs at her still treating the wrong thing.
Fortunately? The tumours are non cancerous,imagine if they were,untreated for months growing with no treatment to stop them,only drugs for another disease,making things worse.
So now Jackie needs to take high dose steroids to shrink and bring down the swelling(caused by MS drugs) of the tumours before beginning radiation treatment,all the while having to trust doctors who got it wrong in the first place.
I'm angry for her,I'm angry at the doctors.
I'm so very glad that it was discovered before too much damage was done.I am rejoicing and so glad that she doesn't have MS and in a bit once all the treatment is done Jackie will be well.
I am ashamed to admit a tiny bit jealous,that Jackie will have her life back( I hate admitting this,but need to be honest) of course what she now has to contend with is no walk in the park and I hope that I can be as caring and supportive as she has been to me.
I'm also scared that maybe she won't need our friendship anymore.I was so grateful to meet someone I connected so well with, our shared MS experience drew us together and I'm worried that once that is gone will our connection? I felt I'd met someone who truly "got" me,I sure hope that won't be gone.I don't want to be lonely again.I know how selfish this all makes me sound but my overriding emotion is joy.I can't put into words the happiness I feel that Jackie doesn't have MS.
Thursday 19 July 2012
Confusion
So much going on in my head and I can't get any of it out.Nothing will come,don't know why.Well actually I do but it surrounds my feelings about something that I don't think is my place to talk about.
Sometimes I wish I didn't value integrity so much.
Anyway,had a few busy days and now paying the price but I'll pay, it was so good to get out and be part of something that could change the lives of disabled people in Australia,just hope that politicians will stop talking and actually do something.And that if there's a government change the incoming party doesn't shelve it.If your Australian go to http://everyaustraliancounts.com.au/ to get more info you can also read about it at http://www.ndis.gov.au/ I'm not into politics but I am into helping to make the lives of people with disabilities and health problems easier and a better quality.
Maybe that's the direction my life is heading,speaking up for those who have trouble speaking uop for themselves(might need to learn to spell first! Yes i know there are typos in this!) Maybe I need to become some kind of advocate for disabled people,start shouting about lack of access and stuff.Hard to have policy that is all about inclusion when people can't even get in the door!
How would I do this,how would I go about it and would I need any qualifications.
Sometimes I wish I didn't value integrity so much.
Anyway,had a few busy days and now paying the price but I'll pay, it was so good to get out and be part of something that could change the lives of disabled people in Australia,just hope that politicians will stop talking and actually do something.And that if there's a government change the incoming party doesn't shelve it.If your Australian go to http://everyaustraliancounts.com.au/ to get more info you can also read about it at http://www.ndis.gov.au/ I'm not into politics but I am into helping to make the lives of people with disabilities and health problems easier and a better quality.
Maybe that's the direction my life is heading,speaking up for those who have trouble speaking uop for themselves(might need to learn to spell first! Yes i know there are typos in this!) Maybe I need to become some kind of advocate for disabled people,start shouting about lack of access and stuff.Hard to have policy that is all about inclusion when people can't even get in the door!
How would I do this,how would I go about it and would I need any qualifications.
Monday 16 July 2012
Not nice
I am a lot of things but nice is not one of them.I'm too judgemental,I can be manipulative.I can be very selfish.I like things done my way and get annoyed at people who want things done their way. I think too much,I like my own company way too much. I know I need to have more contact with people so I get a different opinion and perspective,but I don't want to,I would rather sit and moan than take action and actually change things.I'm lazy,I take the easiest option.
I'm not nice at all.
Oh and I'm not saying this so I can manipulate people to say nice things about me or write messages of support,this is just how I feel today. I might not be nice but I am honest about myself and my failings.You need to face the truth about yourself before you can do anything about it.I'm just too lazy to do anything,even trying to think differently requires too much effort.
I'm not nice at all.
Oh and I'm not saying this so I can manipulate people to say nice things about me or write messages of support,this is just how I feel today. I might not be nice but I am honest about myself and my failings.You need to face the truth about yourself before you can do anything about it.I'm just too lazy to do anything,even trying to think differently requires too much effort.
Friday 13 July 2012
Thinking
The doctor yesterday has got me thinking a bit(uh oh!) Do I do all that I can to look after myself?Probably not is the answer!
He asked about my spasms and stuff and did I take anything for it,I have been prescribed Tegratol when the burning in my feet was at it's worst but I don't take it. He suggested a I see a pyschologist for the depression and stuff but I've seen someone before .
I hate that you go see someone and it takes awhile to prise the lid of the box where I store all my crap,then when I start to be able to talk the hour is up and I've got to cram everything back in and go about my life.It's easier to leave the lid on and not start,than to start to look at some of that stuff and have to stop.
I think I've come a long way since I began writing this blog and so this is my therapy,I can open the box when it suits me and examine what needs examining for as long as I need too.If I was to see someone I would need someone who wasn't on a time constraint.I think I need to just open the box and keep going and going and going,til there is nothing left in there and that's going to take a hell of a lot longer than an hour once a week!
I did take the Tegratol maybe 3 times but the list of side effects put me off,I don't want to take something for one problem that has the potential to cause a myriad(I like that word,hope I used it in the right context!!) of others,then I'll need to take something else to combat the side effect problems and be for you know it I'm a walking(shuffling)drug cocktail.
At the moment I'm doing fairly okay,yes I have annoying,sometimes painful symptoms and yes,I'm a bit screwy with my emotions,but for the most part I'm handling things fairly well.
I think as long as I keep facing my demons instead of avoiding them,running away,I'll be alright.I need to keep writing here,even on those days when I really don't have much to say.
He asked about my spasms and stuff and did I take anything for it,I have been prescribed Tegratol when the burning in my feet was at it's worst but I don't take it. He suggested a I see a pyschologist for the depression and stuff but I've seen someone before .
I hate that you go see someone and it takes awhile to prise the lid of the box where I store all my crap,then when I start to be able to talk the hour is up and I've got to cram everything back in and go about my life.It's easier to leave the lid on and not start,than to start to look at some of that stuff and have to stop.
I think I've come a long way since I began writing this blog and so this is my therapy,I can open the box when it suits me and examine what needs examining for as long as I need too.If I was to see someone I would need someone who wasn't on a time constraint.I think I need to just open the box and keep going and going and going,til there is nothing left in there and that's going to take a hell of a lot longer than an hour once a week!
I did take the Tegratol maybe 3 times but the list of side effects put me off,I don't want to take something for one problem that has the potential to cause a myriad(I like that word,hope I used it in the right context!!) of others,then I'll need to take something else to combat the side effect problems and be for you know it I'm a walking(shuffling)drug cocktail.
At the moment I'm doing fairly okay,yes I have annoying,sometimes painful symptoms and yes,I'm a bit screwy with my emotions,but for the most part I'm handling things fairly well.
I think as long as I keep facing my demons instead of avoiding them,running away,I'll be alright.I need to keep writing here,even on those days when I really don't have much to say.
Today
Today was Tysabri day.Got up just after 6am so I had time to go on facebook before getting ready(gotta get my priorities right!) I drove to the hospital(yes,me) we left around 7.30 am,my appointment is 8 am.No dramas driving apart from me worrying that something would go wrong and I can't reach to get the parking ticket out of the machine,I need extendable arms!
Had a good nurse who found a vein first up this morning,sometimes my veins decide to hide and there's a bit of trouble getting the needle in but today was good. Anne-Marie from my online group has her infusion at the same time,it's nice to see a friendly face and have a chat,makes the time go faster.
Near the end of it I had a doctor ask me if he could ask me a few questions for part of an exam he was doing,turned into an hour long consult! Plus he wanted to do all those neuro tests to check my reflexes and stuff,how I walked and my eye sight.He'll be a very good and thorough neurologist when he qualifies,had a good manner too,seemed genuinely interested in all I had to say.Some doctors come across as disinterested at times,this guy was good.
But it meant I was out a lot longer than I expected,we didn't get home til almost noon.I was buggered!! Slept most of the afternnoon,feel pretty good now my legs seem stronger,Tysabri is doing great things for me,hoppefully it continues.I like that there are no side effects for me and it's just a once a month thing and I love that it only costs me $5.80 a month!! Gotta love that health care card!!
Had a good nurse who found a vein first up this morning,sometimes my veins decide to hide and there's a bit of trouble getting the needle in but today was good. Anne-Marie from my online group has her infusion at the same time,it's nice to see a friendly face and have a chat,makes the time go faster.
Near the end of it I had a doctor ask me if he could ask me a few questions for part of an exam he was doing,turned into an hour long consult! Plus he wanted to do all those neuro tests to check my reflexes and stuff,how I walked and my eye sight.He'll be a very good and thorough neurologist when he qualifies,had a good manner too,seemed genuinely interested in all I had to say.Some doctors come across as disinterested at times,this guy was good.
But it meant I was out a lot longer than I expected,we didn't get home til almost noon.I was buggered!! Slept most of the afternnoon,feel pretty good now my legs seem stronger,Tysabri is doing great things for me,hoppefully it continues.I like that there are no side effects for me and it's just a once a month thing and I love that it only costs me $5.80 a month!! Gotta love that health care card!!
Wednesday 11 July 2012
Sometimes it's not MS,sometimes I'm just an idiot!
Got up this morning and my eyes were all fuzzy,I figured it was just one of those things and would pass after a few minutes.I did all the normal morning stuff,put cat biscuits in the cats bowl ,stopped the dog from eating the cats food. Even though Chuckie hates this brand of biscuits he doesn't like Klaus eating them either,so stopped the brawl between them.Still got fuzzy eyes but they've been like this before and eventually it clears. I do a quick checklist...No tingles no hot spots no weird pains anywhere,it's just the "normal" stuff that has become how my body works.Hmm,okay just blurry eyes I can deal with that.I turn the computer on rub my eyes again to try to clear them and that's when it hits me,the reason I can't see properly,the reason my eyes are all fuzzy and blurry.Yep,I forgot to put my glasses on!!!! Dumbarse! Amazing how quickly fuzzy and blurry clears up when you're wearing your glasses.Think I'll need to add "put glasses on" to my mental checklist!
So.....
Just in case you didn't realize it I have MS! Multiple Sclerosis,yep I've got it and it's time for me to move on and start living with it not fighting against it.
It's time for me to start living with an unpredictable,confusing chronic illness and start living the best life I can.
Getting angry and depressed,being unaccepting ,waiting to get back to "normal" needs to stop.It's not helping me,it's not making life easier,it's making it harder not just for me but for those who love me.
I have it and I'm still me.
It's time for me to start living with an unpredictable,confusing chronic illness and start living the best life I can.
Getting angry and depressed,being unaccepting ,waiting to get back to "normal" needs to stop.It's not helping me,it's not making life easier,it's making it harder not just for me but for those who love me.
I have it and I'm still me.
Tuesday 10 July 2012
Does it have to have a title?
No,I don't think so not if i don't want it to or can't think of one! Maybe I need to type first work out where I'm headed with what I'm sying and write a title after but when I do that I always forget to put one before I publish.Perhaps today needs to be "really don't have anything to say but feel the need to type and express myself!" Cos that's what kind of day it is not good but not bad,not sad but not happy not angry or depressed but none of the flip side emotions either.Just a day,just another day in paradise!
Days like this I have nothing to say but still need to talk I guess thes are the days when I need to try and get out and talk to people with skin on,talk to people who can respond straight away.Try to get a bit of human contact for real not just thru a computer screen.
Days like this I have nothing to say but still need to talk I guess thes are the days when I need to try and get out and talk to people with skin on,talk to people who can respond straight away.Try to get a bit of human contact for real not just thru a computer screen.
Sunday 8 July 2012
People are.....hmmm odd is probably the politest term
When people find out someone has an illness they usually react in similar ways. In my experience I've noticed people can be shocked( of course,so was I) or sometimes dismissive.Or otherwise they know someone whos' cousins next door neighbours grandmas half sisters dad had MS .Now this is where it gets interesting, they either tell me some horror story based on misinformation,gossip and trying to sound clever or otherwise tell me I'm lucky it's not something worse and regale me with tales of someone else they know who also has MS and is a triathlete, climbs mountains and will be representing Australia at the London Olympics in Roman/Greco wrestling or synchronised swimming(is that REALLY a sport?)
I'm not exactly sure what they hope to achieve with any of these reactions or how I'm so to respond. The OMG so and so died from that!!! I had an interesting conversation with an in law of an in law ( makes sense to me!) He asked me why I used a walker so I told him I have MS and my legs are dodgy,sometimes my balance is off and the walker keeps me stable and means I can walk further and stay on my feet for longer.He says "oh okay my grandma had that she was in a wheelchair when she could get out of bed and had no bladder or bowel control" me.... "um,oh wow how tough for her" him "yeah she died" me... lost for words.... " I'm hoping that the treatment I'm on will help me stay as healthy as I can for a very long time" I then very quickly looked for an escape,found a friendly face and got away from him as fast as I could. I think that maybe these people are trying to be supportive? and don't think before they speak or otherwise they're just dumb.
The one's who tell me how fantastic someone else is doing leave me feeling not good enough,like if only I tried more or ate the "right"foods or had a different perspective I could achieve monumental physical feats too.
The ones who do the most damage though are the ones who just disappear from your life,without a word.Stop making contact,avoid contact,don't return calls when you make them,cut calls and visits short when they are made.I think that says more about them and their issues than it does about me,I need to remember that when I get down from missing people.
Hmm,yep,people are definately odd!!
I'm not exactly sure what they hope to achieve with any of these reactions or how I'm so to respond. The OMG so and so died from that!!! I had an interesting conversation with an in law of an in law ( makes sense to me!) He asked me why I used a walker so I told him I have MS and my legs are dodgy,sometimes my balance is off and the walker keeps me stable and means I can walk further and stay on my feet for longer.He says "oh okay my grandma had that she was in a wheelchair when she could get out of bed and had no bladder or bowel control" me.... "um,oh wow how tough for her" him "yeah she died" me... lost for words.... " I'm hoping that the treatment I'm on will help me stay as healthy as I can for a very long time" I then very quickly looked for an escape,found a friendly face and got away from him as fast as I could. I think that maybe these people are trying to be supportive? and don't think before they speak or otherwise they're just dumb.
The one's who tell me how fantastic someone else is doing leave me feeling not good enough,like if only I tried more or ate the "right"foods or had a different perspective I could achieve monumental physical feats too.
The ones who do the most damage though are the ones who just disappear from your life,without a word.Stop making contact,avoid contact,don't return calls when you make them,cut calls and visits short when they are made.I think that says more about them and their issues than it does about me,I need to remember that when I get down from missing people.
Hmm,yep,people are definately odd!!
Jonquils from Dad
Forgot to put this in my last post,Saturday my Dad came over and he gave me a bunch of jonquils that he had picked from his garden before ho drove up here! How lovely and thoughtful is that! I love jonquils,they come out not long before daffodils do and let you know spring is on it's way. Daffodils are my favourite flower,they're so bright and happy and smiley.
Anyway Dad bringing me the jonquils was so cool and made me remember that it doesn't matter how down I get on myself my Dad loves me and thinks I'm wonderful!
Anyway Dad bringing me the jonquils was so cool and made me remember that it doesn't matter how down I get on myself my Dad loves me and thinks I'm wonderful!
Befuddled
When I go to bed at night as tired as i am my brain decides to switch on and keep me awake.I think of all these things I need to get off my chest and blog about.I remember stuff I need to do cos I forgot to do it during the day
Eventually I'll fall asleep for 2or 3 hours,then when I get up I can't remember anything that I wanted to write about or any of those things that I need to do!
I have it in my head today that there is something really important I need to do,but I have no idea what it is,the time 2.30 seems to be prominent but I'm not sure if I'm meant to be somewhere or someone is coming over.
I know I need to make a phone call but to who and what about,has me completely confused.
I've tried writing stuff down and making lists but then I misplace my list,I think this is what loss of cognitive function is.
It's only 5 past 8 but I think I might go back to bed and write this day up as a loss.
Eventually I'll fall asleep for 2or 3 hours,then when I get up I can't remember anything that I wanted to write about or any of those things that I need to do!
I have it in my head today that there is something really important I need to do,but I have no idea what it is,the time 2.30 seems to be prominent but I'm not sure if I'm meant to be somewhere or someone is coming over.
I know I need to make a phone call but to who and what about,has me completely confused.
I've tried writing stuff down and making lists but then I misplace my list,I think this is what loss of cognitive function is.
It's only 5 past 8 but I think I might go back to bed and write this day up as a loss.
Thank you
Started to read this again last night,bit if late night reading hoping would help me sleep! Lot of people have been cheering me on and despairing with me along the way.Giving me encouragement and support when I've needed it,showing me kindness and compassion and giving me strength and courage when I've needed it.Thank you so much for believing in me when it's been too hard for me to believe in myself.Thank you.
Quiet thoughts
With not much to say,not sleeping well lately but resting a lot.Don't have too much motivation to do anything,some days it's an effort just to get dressed.
Oh well,this too shall pass.
I'm trying,I am and I will find some energy again.
Oh well,this too shall pass.
I'm trying,I am and I will find some energy again.
Saturday 7 July 2012
Friday 6 July 2012
The Party's over
It was MY party and I cried if I wanted too.Actually this pity party didn't involve too many tears,think i might be all cried out for awhile.I was just incredibly miserable,down and low.Compounded I think with being so isolated and cut off with the phone and internet being off so much,Robert and David are great but being cut off from my online MSers who know what I mean when I mention symptoms really did my head in.
I think too that last weekend was very busy and then having the driving test Monday all just made everything come up at once.Monday was also the day the MS Network magazine arrived with my story in it,which has been good,But just a lot of stuff going on,good stress,bad stress,which made me totally stressed out and led to symptoms flaring and ultimately my meltdown and pity party!!
Didn't last as long as usual and I was able to recognize what was going on and find a bit of courage to fight back,anyway I think i kicked out all the gate crashers,there are a few selfs left but it's Self esteem,Self worth.Hopefully they stick around for a bit,a party with those guys would be pretty good i reckon.
I think too that last weekend was very busy and then having the driving test Monday all just made everything come up at once.Monday was also the day the MS Network magazine arrived with my story in it,which has been good,But just a lot of stuff going on,good stress,bad stress,which made me totally stressed out and led to symptoms flaring and ultimately my meltdown and pity party!!
Didn't last as long as usual and I was able to recognize what was going on and find a bit of courage to fight back,anyway I think i kicked out all the gate crashers,there are a few selfs left but it's Self esteem,Self worth.Hopefully they stick around for a bit,a party with those guys would be pretty good i reckon.
Thursday 5 July 2012
The Pity Party
The words gotten around that my place is a great place to throw a pity party. Misery loves company so all the selfs turned up to be miserable together.
Self absorbed,Self indulgent,Self loathing,Self pity,Self-ish.Low Self esteem rocked up too,So many selfs I can't remember everyone's name.They were all there doing what they do best,bitching and moaning and complaining,feeling grumpy and doing there best to outdo each other with how horrible life is.Yeah some wicked party was happening.
I think it's starting to wind down now,I think they might be all partied out for now,all I need to do is clean up the mess those party animals made.Might take awhile,need to get the carpet dry from all the tears that were shed.
Self absorbed,Self indulgent,Self loathing,Self pity,Self-ish.Low Self esteem rocked up too,So many selfs I can't remember everyone's name.They were all there doing what they do best,bitching and moaning and complaining,feeling grumpy and doing there best to outdo each other with how horrible life is.Yeah some wicked party was happening.
I think it's starting to wind down now,I think they might be all partied out for now,all I need to do is clean up the mess those party animals made.Might take awhile,need to get the carpet dry from all the tears that were shed.
Wednesday 4 July 2012
Bad day
Still feeling really cruddy,My insides are all jumpy and nervy.and I am not at all happy.Think I forgot to do something but have no idea what it is if I even did forget.Wondering if this is an MS thing or just me.
Everything was going so well and I felt good,now I'm just blah,it's like that awful feeling when you hear a noise in the middle of the night but can't identify what it was,so you lay there in the dark freaking out that someone has broken in.Well I do anyway,the internet has been fairly stable for a little while now,hopefully it's okay now.
It's just a really bad day and my head is buzzing and I have pins and needles in my right hand,my right side is supposed to be my good side.I wish I understood this stupid disease better,maybe i wouldn't be so focused on every little change and freak out that it means another relapse,my back teeth are metallic tasting too.
Oh,crap,think I'll go to bed and hide,I'm miserable.
Everything was going so well and I felt good,now I'm just blah,it's like that awful feeling when you hear a noise in the middle of the night but can't identify what it was,so you lay there in the dark freaking out that someone has broken in.Well I do anyway,the internet has been fairly stable for a little while now,hopefully it's okay now.
It's just a really bad day and my head is buzzing and I have pins and needles in my right hand,my right side is supposed to be my good side.I wish I understood this stupid disease better,maybe i wouldn't be so focused on every little change and freak out that it means another relapse,my back teeth are metallic tasting too.
Oh,crap,think I'll go to bed and hide,I'm miserable.
Tuesday 3 July 2012
Where did it go?
Where did my peace go?Where did my happiness go? Where did my positivity go?
The bloody moronic dumbarse government people I have to deal with sucked it right out of me,Just like the dementors in Harry Potter they've sucked every bit of goodness out of me and left me feeling completely crappy,shitty and totally pissed off and frustrated,and i don't care if I'm spelling stuff wrong,get over it.
Internet and phone have been erractic or non existant for days,Phone company will be here some time before Friday BASTARDS,I don't even have my internet with them but because it's their infrastructure causing the problems I hardly get on line until they get their arses in gear and come and fix their cables or whatever the problem maybe'Last time it was cos birds have pecked the cables at the junction bit,months they told us nothing was wrong,'til someone finally came out and checked.My phone doesn't work properly.so I can't get online to talk to people and i can't ring anyone up either.Some days I'm online and on the phone at the same time,now i can't do either I'm feeling ver isolated.
This morning I had to speak to someone at centrelink about my pension,What a joke!!! Between the phone problems their automated phone service I found myself yelling at the automatic voice! You know your getting frustrated when the polite phone voice makes you want to scream!! But seriously,an hour on hold to finally speak to a real person?? that was after 2 hours of trying to get thru,plus finally getting online doing what i needed to do to report earning only to have a message come up telling me to contact them cos there was a problem AAARRRGGHH!!!! That's what I've been trying to do!!
Then I finally get to speak to someone and my words start sticking and i can't talk properly and i sound like an idiot,so then she starts speaking to me in that overly calm,pitying tone that drives me crazy.I hate this fucking disease so much,I hate how it's tearing me apart bit by bit.I hate how it's taking away my ability to communicate effectively.I just fucking hate it so much.
Today is a really bad day and I want my peace back,maybe this is me maybe I should stop kidding myself and accept that it's not MS I am after all just a bitch.
I hate everything today.I hate MS
The bloody moronic dumbarse government people I have to deal with sucked it right out of me,Just like the dementors in Harry Potter they've sucked every bit of goodness out of me and left me feeling completely crappy,shitty and totally pissed off and frustrated,and i don't care if I'm spelling stuff wrong,get over it.
Internet and phone have been erractic or non existant for days,Phone company will be here some time before Friday BASTARDS,I don't even have my internet with them but because it's their infrastructure causing the problems I hardly get on line until they get their arses in gear and come and fix their cables or whatever the problem maybe'Last time it was cos birds have pecked the cables at the junction bit,months they told us nothing was wrong,'til someone finally came out and checked.My phone doesn't work properly.so I can't get online to talk to people and i can't ring anyone up either.Some days I'm online and on the phone at the same time,now i can't do either I'm feeling ver isolated.
This morning I had to speak to someone at centrelink about my pension,What a joke!!! Between the phone problems their automated phone service I found myself yelling at the automatic voice! You know your getting frustrated when the polite phone voice makes you want to scream!! But seriously,an hour on hold to finally speak to a real person?? that was after 2 hours of trying to get thru,plus finally getting online doing what i needed to do to report earning only to have a message come up telling me to contact them cos there was a problem AAARRRGGHH!!!! That's what I've been trying to do!!
Then I finally get to speak to someone and my words start sticking and i can't talk properly and i sound like an idiot,so then she starts speaking to me in that overly calm,pitying tone that drives me crazy.I hate this fucking disease so much,I hate how it's tearing me apart bit by bit.I hate how it's taking away my ability to communicate effectively.I just fucking hate it so much.
Today is a really bad day and I want my peace back,maybe this is me maybe I should stop kidding myself and accept that it's not MS I am after all just a bitch.
I hate everything today.I hate MS
Monday 2 July 2012
Busy few days
Saturday was David's formal and the limo pick up was here,so quite a few kids in suits and their camera happy parents took over my house for a little while!
He looked very grown up and chose a purple striped tie,cos purple is my favourite colour.Awww! I didn't know he'd done it,how lovely was that,he thought of me!
Sunday was my birthday and I had the best day,was so good 'cept for my Mum being sick and not coming out to lunch with us but my sister was here with her 2 boys so that almost made up for Mum not coming.Sarah came over later with Luke and not only had she made me a cake but lemon cheesecake as well!! Now I had lost some weight,hmm reckon I've put it all back on plus extra!
Then yesterday I had the practical driving test that I've been dreading,not cos I have trouble driving or anything but because of someone judging me and maybe me not living up to my expectations of myself.Anxiety was threw the roof and I was so nervous,was so worried that something I've been doing for 3o years was going to be taken away from me.I've had so many things change since MS i didn't want to lose this too,especially as i chose not to drive for so long as I knew I wasn't up to it.I didn't want to have a stranger tell me that the effort and work I've done to get back to driving was in vain.
Anyway,I passed!! WooHoo!! Apparently I don't use my mirrors enough and I tend to speed a bit but I was so focused on what was in front of me and doing everything right i forgot to look behing me and look at the speedo .Usually you get in your car and just drive and do all the things you're meant to do,having someone sitting next to me with a clip board and check list is very unnerving!
But i came threw it and officially I am a very good driver! I think before much longer I will need to stop driving my manual and get an automatic but not yet,i love my car and I'm not ready to give it up yet.
Today I'm going to rest I'm knackered!!
He looked very grown up and chose a purple striped tie,cos purple is my favourite colour.Awww! I didn't know he'd done it,how lovely was that,he thought of me!
Sunday was my birthday and I had the best day,was so good 'cept for my Mum being sick and not coming out to lunch with us but my sister was here with her 2 boys so that almost made up for Mum not coming.Sarah came over later with Luke and not only had she made me a cake but lemon cheesecake as well!! Now I had lost some weight,hmm reckon I've put it all back on plus extra!
Then yesterday I had the practical driving test that I've been dreading,not cos I have trouble driving or anything but because of someone judging me and maybe me not living up to my expectations of myself.Anxiety was threw the roof and I was so nervous,was so worried that something I've been doing for 3o years was going to be taken away from me.I've had so many things change since MS i didn't want to lose this too,especially as i chose not to drive for so long as I knew I wasn't up to it.I didn't want to have a stranger tell me that the effort and work I've done to get back to driving was in vain.
Anyway,I passed!! WooHoo!! Apparently I don't use my mirrors enough and I tend to speed a bit but I was so focused on what was in front of me and doing everything right i forgot to look behing me and look at the speedo .Usually you get in your car and just drive and do all the things you're meant to do,having someone sitting next to me with a clip board and check list is very unnerving!
But i came threw it and officially I am a very good driver! I think before much longer I will need to stop driving my manual and get an automatic but not yet,i love my car and I'm not ready to give it up yet.
Today I'm going to rest I'm knackered!!
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