How I hate them! I feel like I'm in a coffin or being buried alive.Such an awful,awful machine.I know it's a necessary evil but how I hate the way I feel inside it.
I've been trying not to sleep so when I get inside it the tiredness and exhaustion I'm feeling will over ride the panic I always feel.Think I'll take an anxiety tablet too,maybe I'll be so relaxed I might fall asleep,Yeah,as if!!
I'll go thru my usual routine ,same music.I listen to an 80s mix,takes me back to a time when I was young and free and had no worries except did I have enough money for drinks Saturday night!
I'll try to imagine that the breeze blowing on me is from the cool breeze blowing off the ocean as I lay back on my lounger waiting for the hot drinks waiter( the radiographer! least there's one good reason to go) to bring my next cocktail!
The noise,I'm yet to work that into my day dream it's hard to incorporate the noises into my dreaming,doesn't really fit with lazing on the beach.I just try to ignore it.
Neurologist visit is in 2 weeks,fingers crossed and hoping there's no new lesions and really,really desperate for the ones I already have to be healing.
Thursday 31 May 2012
Tuesday 29 May 2012
I'm sad
Sad,just sad.Not depressed,just sad. No blackness descending on me,not sliding into that pit of despair,just sad.
I think this might be a normal feeling,not taken to extreme,just normal sadness.It probably sounds weird but I think I kind of like feeling normal sadness,maybe it means I'm becoming normal!
I think this might be a normal feeling,not taken to extreme,just normal sadness.It probably sounds weird but I think I kind of like feeling normal sadness,maybe it means I'm becoming normal!
Where I'm at
Does anyone know? Cos I sure don't.Up,down,round and round.
Weekend was wonderful was so great to get away from every day.Except it showed up how much more recovery I need to do.At home I'm very confident and move around my house with ease,in a new place I struggle,will be a very long time,if ever,before I will be able to go outside without the walker or stick and walk any distance.
Makes me sad to know I won't ever go bush walking again,I used to love getting out in nature and feeling the peace enter me.
I was watching all the different birds that were in the trees surrounding our cottage and I really wanted to go walking on the property and see what other wild life was out there but I had to be content with just looking from the patio. That was okay,it rained a fair bit so it was good to be inside watching the flames from the fire place.
Lying in the spa looking out the window at the view of Mt Lofty not too far away but way to far for me,made me think of one of my favourite places to be, Mt. Lofty Botanical gardens.Maybe someone will invent al off road walker or something and bush bashing will be possible!!
Last time we went walking about a month before the attack that caused all the damage,we went to Morialta Falls,it was unbeliveable. Walking across the path just a few feet from us was a koala moving from one tree to another! Okay,so I'm Australian,I've seen and held koalas before.They are my favourite native animal,but seeing this one in it's natural environment was different somehow.I kind of felt a bit as if we'd invaded his home or something.It was really exciting to see him though.
I know that those walking times are over now and I know I'm going to miss them,makes me sad.
I did have a really great weekend,the sadness will pass and hopefully I'll find something else to replace what I will miss.
Weekend was wonderful was so great to get away from every day.Except it showed up how much more recovery I need to do.At home I'm very confident and move around my house with ease,in a new place I struggle,will be a very long time,if ever,before I will be able to go outside without the walker or stick and walk any distance.
Makes me sad to know I won't ever go bush walking again,I used to love getting out in nature and feeling the peace enter me.
I was watching all the different birds that were in the trees surrounding our cottage and I really wanted to go walking on the property and see what other wild life was out there but I had to be content with just looking from the patio. That was okay,it rained a fair bit so it was good to be inside watching the flames from the fire place.
Lying in the spa looking out the window at the view of Mt Lofty not too far away but way to far for me,made me think of one of my favourite places to be, Mt. Lofty Botanical gardens.Maybe someone will invent al off road walker or something and bush bashing will be possible!!
Last time we went walking about a month before the attack that caused all the damage,we went to Morialta Falls,it was unbeliveable. Walking across the path just a few feet from us was a koala moving from one tree to another! Okay,so I'm Australian,I've seen and held koalas before.They are my favourite native animal,but seeing this one in it's natural environment was different somehow.I kind of felt a bit as if we'd invaded his home or something.It was really exciting to see him though.
I know that those walking times are over now and I know I'm going to miss them,makes me sad.
I did have a really great weekend,the sadness will pass and hopefully I'll find something else to replace what I will miss.
Thursday 24 May 2012
Anniversary
Today is mine and Robert's 28th wedding anniversary and we're going away for the weekend.We're going to a cottage in the Adelaide Hills called "The Nest"
My very dear friend(who's also called Alison!) who I've been friends with since we were 10 years old,wanted to do something special for us so she bought a voucher for us to use when ever we wanted.i thought it would be fantastic to get away for our anniversary so we're off this afternoon.
Hopefully some time away from every day will help me get my mind sorted.
My very dear friend(who's also called Alison!) who I've been friends with since we were 10 years old,wanted to do something special for us so she bought a voucher for us to use when ever we wanted.i thought it would be fantastic to get away for our anniversary so we're off this afternoon.
Hopefully some time away from every day will help me get my mind sorted.
Wednesday 23 May 2012
Rage
Bear with me today,this is probably going to be long and rambly and jump around a bit but it does have a point.
Laying in bed last night,trying to sleep,feeling so full of rage and not knowing why,it suddenly hit me that I've felt like this before,another time in my life when everything was turned upside down.
After I was raped I was so angry it was indescribable,I wanted to rip him apart with my bare hands,I wanted to stick my hand down his throat and rip him inside out.The rage I felt I was probably capable of it,the intensity of those feelings terrified me,scared the shit out of me.Everything was out of control including me and my feelings and emotions,how can you want to rip someone to shreds and then be a loving Mum to your children?Sarah was 4 and Adam was 2 at the time,they needed me.How could I possibly love them as much as I did and have these rageful feelings inside of me too?In my mind I couldn't,so I shut it down.I tried to rein in the anger and put it in a box,and put the lid on and shove it to the back of the cupboard labelled"Never open".Trouble was there was so much shoved in that box thart occasionally the lid would pop open,spilling out all it's vile contents.So I started to deal with it by turning the anger on myself,easier to hate myself and be mean and nasty to me than let it fall on anyone else.So down the road of depression I went,I realized last night at some ungodly hour "Ugly" is anger and"Fat is depression.When I say I feel ugly or fat, I'm actually feeling angry or extremely sad,bordering on rage or depression.
I've been feeling this way off and on since the MS diagnosis,Duh! Massive life change,Out of control,Afraid.
I can't put the feelings in the box though,over the years it's fallen apart and a new one would be to big for the cupboard.
So now I have to find a way to deal with all of this,Hating myself,hurting myself doesn't work.I tried to stuff my feelings yesterday by eating crappy foods but it didn't work like it used to.Stuffing and cramming my feelings down by eating didn't work.
What now? How to deal with all this,in a healthy way that lets me feel the stuff I crave,without being terrified and out of control by the other stuff.
If I work this out I think I might find my way thru that wall I've been stuck at.
Laying in bed last night,trying to sleep,feeling so full of rage and not knowing why,it suddenly hit me that I've felt like this before,another time in my life when everything was turned upside down.
After I was raped I was so angry it was indescribable,I wanted to rip him apart with my bare hands,I wanted to stick my hand down his throat and rip him inside out.The rage I felt I was probably capable of it,the intensity of those feelings terrified me,scared the shit out of me.Everything was out of control including me and my feelings and emotions,how can you want to rip someone to shreds and then be a loving Mum to your children?Sarah was 4 and Adam was 2 at the time,they needed me.How could I possibly love them as much as I did and have these rageful feelings inside of me too?In my mind I couldn't,so I shut it down.I tried to rein in the anger and put it in a box,and put the lid on and shove it to the back of the cupboard labelled"Never open".Trouble was there was so much shoved in that box thart occasionally the lid would pop open,spilling out all it's vile contents.So I started to deal with it by turning the anger on myself,easier to hate myself and be mean and nasty to me than let it fall on anyone else.So down the road of depression I went,I realized last night at some ungodly hour "Ugly" is anger and"Fat is depression.When I say I feel ugly or fat, I'm actually feeling angry or extremely sad,bordering on rage or depression.
I've been feeling this way off and on since the MS diagnosis,Duh! Massive life change,Out of control,Afraid.
I can't put the feelings in the box though,over the years it's fallen apart and a new one would be to big for the cupboard.
So now I have to find a way to deal with all of this,Hating myself,hurting myself doesn't work.I tried to stuff my feelings yesterday by eating crappy foods but it didn't work like it used to.Stuffing and cramming my feelings down by eating didn't work.
What now? How to deal with all this,in a healthy way that lets me feel the stuff I crave,without being terrified and out of control by the other stuff.
If I work this out I think I might find my way thru that wall I've been stuck at.
Out of sorts......to put it mildly
I am so angry at what I have no idea but I'n so angry I can feel it coming off of me like steam.I want to punch someone,anyone.I am in the foulest mood and it just keeps getting fouler.This goes way beyond grumpy or angry.I'm so angry I can't think of a big enough word for it.
And that makes me angry,I want to blog my way out of this but I can't find words to express what I'm feeling.
It's ugly what I'm feeling. Big,fat,ugly,trogladyte,swamp donkey troll ugly.Whatever I mean when I say I feel ugly,that's what I'm feeling.
And that makes me angry,I want to blog my way out of this but I can't find words to express what I'm feeling.
It's ugly what I'm feeling. Big,fat,ugly,trogladyte,swamp donkey troll ugly.Whatever I mean when I say I feel ugly,that's what I'm feeling.
Tuesday 22 May 2012
:o(
I don't want to be an inspiration.I don't want to be anyone's hero.I don't want to be"so strong" "so brave" I don't want to be told "I don't think I would cope if I was you" I don't want to be admired. I don't want MS Someone give me my life back.
I want to be uninspiring,I want to be weak,I want to be a coward I want what I can't have.
I want to be uninspiring,I want to be weak,I want to be a coward I want what I can't have.
Sunday 20 May 2012
Planning ahead
Been thinking a lot,not always a good thing with me! Been thinking about my future and what it might have in store for me.
I know I can't control it and if stuff is going to happen it will happen but I need to be prepared as well.I need to make sure that if I do get worse,that the house is set up and ready so I can stay home and not put to much more pressure on the rest of the family.
I saw a youtube video yesterday about a woman named Tina with MS.She is a lot worse than I am,a lot worse and I give thanks that I can do most things for myself but it also showed me what could be.
In a way it scared me but it also made me grateful for what I have,for the love I am surrounded by,for the people who care about me and will make sure that I won't experience the isolation and loneliness that Tina does.
I need to make sure though that Robert is up for what ever MS throws at us,he bears the brunt of this disease being the closest to me.I still need for him to look at me with love and as his wife,not with pity and as someone who needs care.
If he doesn't think he can do it that is okay I want him to be with me because he wants to be with me,not because he fills obligated or that people would think badly of him if he needed to go.
Yes,we made vows to each other,but sometimes reality is to hard to bear no matter what vows were made.
Yes I have MS but first and foremost I am a woman who loves and wants and needs to be loved.I do need some care regarding the MS but at this stage I just need caring as a woman.Does that make sense? I know what I want to say,not sure if it's coming out right.
I need to live for now but plan for the future.
I know I can't control it and if stuff is going to happen it will happen but I need to be prepared as well.I need to make sure that if I do get worse,that the house is set up and ready so I can stay home and not put to much more pressure on the rest of the family.
I saw a youtube video yesterday about a woman named Tina with MS.She is a lot worse than I am,a lot worse and I give thanks that I can do most things for myself but it also showed me what could be.
In a way it scared me but it also made me grateful for what I have,for the love I am surrounded by,for the people who care about me and will make sure that I won't experience the isolation and loneliness that Tina does.
I need to make sure though that Robert is up for what ever MS throws at us,he bears the brunt of this disease being the closest to me.I still need for him to look at me with love and as his wife,not with pity and as someone who needs care.
If he doesn't think he can do it that is okay I want him to be with me because he wants to be with me,not because he fills obligated or that people would think badly of him if he needed to go.
Yes,we made vows to each other,but sometimes reality is to hard to bear no matter what vows were made.
Yes I have MS but first and foremost I am a woman who loves and wants and needs to be loved.I do need some care regarding the MS but at this stage I just need caring as a woman.Does that make sense? I know what I want to say,not sure if it's coming out right.
I need to live for now but plan for the future.
Thursday 17 May 2012
Happy
I got my license back!! I went in to the motor reg. office and the guy who served me was as confused as me! I told him I didn't understand why I needed a test if the doctor had declared me medically fit to drive,he didn't understand it either! So he made a phone call and came back and told me that I got to have it!! As I have the certificate then I get to have it back,he sends all the info to be reviewed and then they'll contact me as to how I go about the practical test but as I am medically fit I get my license.
The test is to check my co-ordination and whether any restrictions need to be put on it.Like only a certain distance I can drive,stuff like that.But now I get to decide if I'm going to drive or not,I have a little bit of control back of my life.
The test is to check my co-ordination and whether any restrictions need to be put on it.Like only a certain distance I can drive,stuff like that.But now I get to decide if I'm going to drive or not,I have a little bit of control back of my life.
Wednesday 16 May 2012
I'm okay
Whatever the weird thing was the other night was gone in the morning,Must have been one of those strange things that turns up when I'm tired.
I've actually been walking fairly well the last couple of days,only needed my stick when I went to the doctors and only had it "just in case".Round the house I'm doing great,a bit wobbly at times but nothing like it used to be.
So I went to the doctors to get my medical clearance to drive and good news is I am medically fit to drive.Bad news is he thinks I need to have a practical test to check my co-ordination.I'm pissed off .
After the last attack I knew I couldn't drive so I didn't,then when my license came up for renewal last year,I didn't go and get it cos I couldn't afford it.
Now I can afford it and am almost back to where I was before the last attack and I need a driving test? I've been driving for over 30 years.I'm not stupid,I'm not going to do something that could put me ot anyone else at risk.
I know my limitations better than anyone and I know better than anyone else what happens with my symptoms when I push past my limitations.
It's not like I'm going to turn into a rev head and start doing burn outs down the street,I just want the option to drive if I run out of milk or something.I definitely can't walk to the shops.
I hate that other people have control of my life now,I hate that strangers get to determine what I can and can't do,I am not mentally incompetent and need people to help me make good choices.I am a sensible,rational woman(most of the time!)
So tomorrow after my infusion I'm going to motor reg. to find out what happens next.
I've actually been walking fairly well the last couple of days,only needed my stick when I went to the doctors and only had it "just in case".Round the house I'm doing great,a bit wobbly at times but nothing like it used to be.
So I went to the doctors to get my medical clearance to drive and good news is I am medically fit to drive.Bad news is he thinks I need to have a practical test to check my co-ordination.I'm pissed off .
After the last attack I knew I couldn't drive so I didn't,then when my license came up for renewal last year,I didn't go and get it cos I couldn't afford it.
Now I can afford it and am almost back to where I was before the last attack and I need a driving test? I've been driving for over 30 years.I'm not stupid,I'm not going to do something that could put me ot anyone else at risk.
I know my limitations better than anyone and I know better than anyone else what happens with my symptoms when I push past my limitations.
It's not like I'm going to turn into a rev head and start doing burn outs down the street,I just want the option to drive if I run out of milk or something.I definitely can't walk to the shops.
I hate that other people have control of my life now,I hate that strangers get to determine what I can and can't do,I am not mentally incompetent and need people to help me make good choices.I am a sensible,rational woman(most of the time!)
So tomorrow after my infusion I'm going to motor reg. to find out what happens next.
Monday 14 May 2012
Uh oh
Something weird is happening,feels like my body wants to twist to the right side all the time.When I walk it feels like my body is straight but I've actually noticed that my body is twisted and I'm sideways.When I straighten up and walk so my body is facing forwards and my legs and feet are pointing front ways it feels like I'm twisted.If I keep my body how it wants to go then my head is fine but if I make myself stand properly I get very wobbly with my head.This has been happening for a couple of hours,if it's still happening tomorrow night might need to contact neuro.
Sunday 13 May 2012
FACTS vs.Feelings
So I tend to be ruled by my feelings but my feelings are not always true to the facts,Just because I feel something doesn't actually mean that it lines up with factual evidence.
For example sometimes I "feel" fat,fat is not actually a feeling.The fact is,yes I am overweight but I do not cause minor earthquakes when I walk.I need to work out what I am really feeling when I term it as fat.
Sometimes I "feel" ugly,ugly is not a feeling.The fact is small children do not run screaming in horror when I pass by,therefore I am not an ugly troglodyte swamp donkey who needs to be hidden away from decent society.I need to work out what I am really feeling when I term it as ugly.
Sometimes I feel worthless.FACT is I am a human being,therefore I am worthy and worthwhile.
Sometimes I feel unloved.FACT is I am very much loved and need to recognize it.
Sometimes I feel stupid.FACT is stupid is not a feeling(or is it? Not sure) See now I feel stupid,anyway whether it is or not,I'm not actually stupid,I'm human I make mistakes.
I need to learn to stop being ruled by my feelings so much and try to learn to tap into my logical rational side a bit more often.I need to look at the FACTS a bit more closely before I react with my feelings.
For example sometimes I "feel" fat,fat is not actually a feeling.The fact is,yes I am overweight but I do not cause minor earthquakes when I walk.I need to work out what I am really feeling when I term it as fat.
Sometimes I "feel" ugly,ugly is not a feeling.The fact is small children do not run screaming in horror when I pass by,therefore I am not an ugly troglodyte swamp donkey who needs to be hidden away from decent society.I need to work out what I am really feeling when I term it as ugly.
Sometimes I feel worthless.FACT is I am a human being,therefore I am worthy and worthwhile.
Sometimes I feel unloved.FACT is I am very much loved and need to recognize it.
Sometimes I feel stupid.FACT is stupid is not a feeling(or is it? Not sure) See now I feel stupid,anyway whether it is or not,I'm not actually stupid,I'm human I make mistakes.
I need to learn to stop being ruled by my feelings so much and try to learn to tap into my logical rational side a bit more often.I need to look at the FACTS a bit more closely before I react with my feelings.
Saturday 12 May 2012
Thank you
Not thinking too clearly at the moment but I didn't want to wait before saying thank you.Thank you to everyone who reads this and takes the time to e-mail or inbox me on facebook,post on the link or makes contact in any other way.Thank you for caring,thank you for reaching out to me and trying to help me find my way out of the pit. I am so grateful and appreciate every one of you and will try to take on board everything you all said.
The sun got up again today,guess I will too.
Oh and Happy Mothers Day,to all the Mums.May your day be stress free and someone else wash the dishes!
The sun got up again today,guess I will too.
Oh and Happy Mothers Day,to all the Mums.May your day be stress free and someone else wash the dishes!
Friday 11 May 2012
Lyn,this one's for you!!
Okay,sinking back down again.the physical stuff i can try to adapt to,it's all the emotional drama,I hate.I'm tired so very tired of all these negative feelings that keep coming up,will this well ever run dry?
What about me?
It isn't fair.I've had enough now I want my share.
Can't you see I want to live
But you just take more than you give.
What about me?
This is the chorus to the song What about me? Originally sung by Moving Pictures in the 80s and covered by Shannon Noll on Australian Idol.Both versions are great,it's sort of my anthem at the moment,MS sure does take more than it gives.
I'm having a woe is me day,feeling very sad and sorry for myself.I want to crawl into bed and hide away from the world.I'm feeling very isolated so want to isolate myself further.
I hate listening to myself moan and whine but I don't know how to stop,guess I need to go back over all that cognitive therapy stuff the psychologist gave me when I was seeing her.All this counsellors and psychologists and all the work I've done seems to be for nothing.When my first thoughts are those of negativity and sadness,instead of joy and happiness.I wish I could be someone else instead of me,I wish I could open my head up and scrape out all the bad stuff(fix up the lesions while I've got it open).Don't want to do this anymore,it's all too hard.I must have done something pretty damn evil and awful in another life to have all this stuff dumped on me in this one.
I so hope there's a heaven I think I deserve it,living on earth has been pretty hellish.
I have to count my blessings and get myself out of this funk.1,2,3,4, okay blessings counted.
What about me?
It isn't fair.I've had enough now I want my share.
Can't you see I want to live
But you just take more than you give.
What about me?
This is the chorus to the song What about me? Originally sung by Moving Pictures in the 80s and covered by Shannon Noll on Australian Idol.Both versions are great,it's sort of my anthem at the moment,MS sure does take more than it gives.
I'm having a woe is me day,feeling very sad and sorry for myself.I want to crawl into bed and hide away from the world.I'm feeling very isolated so want to isolate myself further.
I hate listening to myself moan and whine but I don't know how to stop,guess I need to go back over all that cognitive therapy stuff the psychologist gave me when I was seeing her.All this counsellors and psychologists and all the work I've done seems to be for nothing.When my first thoughts are those of negativity and sadness,instead of joy and happiness.I wish I could be someone else instead of me,I wish I could open my head up and scrape out all the bad stuff(fix up the lesions while I've got it open).Don't want to do this anymore,it's all too hard.I must have done something pretty damn evil and awful in another life to have all this stuff dumped on me in this one.
I so hope there's a heaven I think I deserve it,living on earth has been pretty hellish.
I have to count my blessings and get myself out of this funk.1,2,3,4, okay blessings counted.
Tuesday 8 May 2012
Powerful words(not mine)
Having MS ...
Having MS means many things change, and a lot of them are invisible. Unlike being hurt in an accident, most people do not understand even a little about MS and it's effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me:
Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm still not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.
Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not "look sick", but we are.
Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!
I want to believe
I forget that people read this,which is a bit stupid of me seeing as I'm the one who shares it on facebook! But I'm always surprised when someone takes the time to message me that they've liked something they've read(I want to not spell read that way,it;s the same way you spell read,which to me is stupid,surely 2 words that sound different and have different contexts should be spelt differently?Maybe I'll spell it as RED,but that looks dumb cos that's a colour,shut up Alison.You confusing everyone including yourself!) Or otherwise that something I wrote has helped them in some way.I'm amazed that people have taken the time to let me know they love the way I write and shocked that my thoughts are inspiring.
I want to believe them,I want to push past my disbelief in myself and not dismiss it as "They're just being nice" I would love to just be able to accept the compliments at face value and not devalue the words that someone took the time to write out and send me.
Why do I always find it necessary to put myself down? Why can I not believe that good things said to me are true? I think I am such a failure at life and I think I set myself up to fail.I think I do this on purpose rather than try my hardest and not succeed.At least then the reason I failed is cos I didn't try hard enough,whereas if I DO try and fail,well the only excuse I've got is that I'm just not good enough.Pretty screwed up way of thinking right there.
I want to believe in me.I want to believe the people who say positive things to me.I want to believe.I think for now,wanting to believe will have to be enough.
I want to believe them,I want to push past my disbelief in myself and not dismiss it as "They're just being nice" I would love to just be able to accept the compliments at face value and not devalue the words that someone took the time to write out and send me.
Why do I always find it necessary to put myself down? Why can I not believe that good things said to me are true? I think I am such a failure at life and I think I set myself up to fail.I think I do this on purpose rather than try my hardest and not succeed.At least then the reason I failed is cos I didn't try hard enough,whereas if I DO try and fail,well the only excuse I've got is that I'm just not good enough.Pretty screwed up way of thinking right there.
I want to believe in me.I want to believe the people who say positive things to me.I want to believe.I think for now,wanting to believe will have to be enough.
The tupperware party
I was invited to a Tupperware party,haven't been to one for years and with a cupboard full of unused Tupperware did I really need more? This was different though, it was being held as a fundraiser for MS,so I decided I might go.
I started to tick of the boxes of why I wouldn't go,never been there before,don't know anyone,too far away,don't know the way,how would I get there..... The list went on and on,so I started to make plans of how I COULD go.Asked Sarah if she wanted to come with me,that solved a number of problems,I have a lift and will know someone,we looked on google maps to find the way and really 15-20 minutes really isn't too far.So I was set,screw you anxiety and panic attacks,I'm going out!!!
Then Sarah realized she had another appointment at around the same time so wouldn't be able to take me but could meet me there and bring me home,okay slight panic starting to rise.So I asked my Dad if he would be able to take me, no problem.Panic dies down a bit.I'll still be walking into someones house who I've never met,but I can at least try,can't I.I mean it's a Tupperware party for goodness sakes at a ladies home who I know from an online MS support group,I'm not entering the bowels of hell( Although it IS a Tupperware party some just may consider that the gate way to hell!!) I reckon if I did an online search I could probably find someone who knows someone who cousins best friends grandmas uncles niece entered a life of wanton debauchery after attending a Tupperware party! Hmm,wanton debauchery?This could be interesting!
So the day begins,I've woken up feeling pretty good,no symptoms going haywire just the usual run of the mill stuff that goes on. Sarah pops in to try to tame the frizz that used to be my hair(note to self,organize a hair cut) and helps me put a bit of make up on to calm the redness of my face.Having MS has make me a little vain,I tend to worry about not looking like a troglodyte when I go out now.I look okay,would be happier if i could lose 20 kilos on the drive there. Miracles happen sometimes!
Dad and I set off and he lets me know he's checked the map at least 6 times already,hmmm and I wonder where my anxiety comes from! I like these times driving with Dad it's nice spending that bit of time with him one on one,just chatting about nothing and everything,I think we've solved most of the world's problems while he's been driving me around where ever I need to go.
So we get there and find the right place,Yay! Our constant map checking and making sure we had the right address has paid off,okay now to navigate to the front door and cross the next hurdle...meeting strangers.I'm stressing out and just want to go home.but I can't Sarah is meeting me here and I can't disappear on her.
I know this all crazy and hate that I am like this,I wish I could just be like normal people and enjoy new people and different experiences but this is the way I've lived my life since the rape.This is how I made myself feel safe,how I was able to function fairly well and give off the appearance that I was not constantly terrified and about to lose the plot.I think that maybe if that man had been caught that this terror and need to be safe and in control wouldn't have lasted as long as it has but he wasn't he's still out there somewhere and every where I go without even realizing it now(it's not a conscious thought process,it's automatic) I am looking for him.He hurt me and my family in such a vile,evil way and he got away with it and is living his life as though what he did doesn't matter.I hope he rots,I hope he gets worms that eat him from the inside out,I hope he writhes in pain with no relief,I hope he never finds love or joy or peace.I hope he knows how evil he is.(Oops,sorry,off the subject a bit)
Dad leaves and I'm here on my own feeling rather foolish for the amout of anxiety I've put myself through this is a normal house with normal people.I'm the first to arrive(typical,I get everywhere too early) so I sit myself down,other people arrive and most of us are women with MS and although as a concept, I know other people have it,this is the first time I've actually met anyone else with it.And you know what,I'm not the only one in the room with a stick or a walker,I'm not the only one with tremors or speech troubles,I'm not the only one,I'm normal!! How amazing is it to not stand out,how amazing it is to fit in,how amazing it is to meet people who know what I'm talking about,who truly understand what I mean when I mention tremors or buzzing or any of the other things that MS brings. I am not alone and that is just such an overwhelmingly awesome feeling,that I really have no words to describe.
It was a really good day,I spent too much! Tupperware has changed a bit and I NEEDED the stuff I bought!!
I'm proud of myself,for getting out of my comfort zone,for facing some demons,for not letting the anxiety and panic win,for being courageous,for being afraid but being willing to face it all head on.I am proud of myself.
I started to tick of the boxes of why I wouldn't go,never been there before,don't know anyone,too far away,don't know the way,how would I get there..... The list went on and on,so I started to make plans of how I COULD go.Asked Sarah if she wanted to come with me,that solved a number of problems,I have a lift and will know someone,we looked on google maps to find the way and really 15-20 minutes really isn't too far.So I was set,screw you anxiety and panic attacks,I'm going out!!!
Then Sarah realized she had another appointment at around the same time so wouldn't be able to take me but could meet me there and bring me home,okay slight panic starting to rise.So I asked my Dad if he would be able to take me, no problem.Panic dies down a bit.I'll still be walking into someones house who I've never met,but I can at least try,can't I.I mean it's a Tupperware party for goodness sakes at a ladies home who I know from an online MS support group,I'm not entering the bowels of hell( Although it IS a Tupperware party some just may consider that the gate way to hell!!) I reckon if I did an online search I could probably find someone who knows someone who cousins best friends grandmas uncles niece entered a life of wanton debauchery after attending a Tupperware party! Hmm,wanton debauchery?This could be interesting!
So the day begins,I've woken up feeling pretty good,no symptoms going haywire just the usual run of the mill stuff that goes on. Sarah pops in to try to tame the frizz that used to be my hair(note to self,organize a hair cut) and helps me put a bit of make up on to calm the redness of my face.Having MS has make me a little vain,I tend to worry about not looking like a troglodyte when I go out now.I look okay,would be happier if i could lose 20 kilos on the drive there. Miracles happen sometimes!
Dad and I set off and he lets me know he's checked the map at least 6 times already,hmmm and I wonder where my anxiety comes from! I like these times driving with Dad it's nice spending that bit of time with him one on one,just chatting about nothing and everything,I think we've solved most of the world's problems while he's been driving me around where ever I need to go.
So we get there and find the right place,Yay! Our constant map checking and making sure we had the right address has paid off,okay now to navigate to the front door and cross the next hurdle...meeting strangers.I'm stressing out and just want to go home.but I can't Sarah is meeting me here and I can't disappear on her.
I know this all crazy and hate that I am like this,I wish I could just be like normal people and enjoy new people and different experiences but this is the way I've lived my life since the rape.This is how I made myself feel safe,how I was able to function fairly well and give off the appearance that I was not constantly terrified and about to lose the plot.I think that maybe if that man had been caught that this terror and need to be safe and in control wouldn't have lasted as long as it has but he wasn't he's still out there somewhere and every where I go without even realizing it now(it's not a conscious thought process,it's automatic) I am looking for him.He hurt me and my family in such a vile,evil way and he got away with it and is living his life as though what he did doesn't matter.I hope he rots,I hope he gets worms that eat him from the inside out,I hope he writhes in pain with no relief,I hope he never finds love or joy or peace.I hope he knows how evil he is.(Oops,sorry,off the subject a bit)
Dad leaves and I'm here on my own feeling rather foolish for the amout of anxiety I've put myself through this is a normal house with normal people.I'm the first to arrive(typical,I get everywhere too early) so I sit myself down,other people arrive and most of us are women with MS and although as a concept, I know other people have it,this is the first time I've actually met anyone else with it.And you know what,I'm not the only one in the room with a stick or a walker,I'm not the only one with tremors or speech troubles,I'm not the only one,I'm normal!! How amazing is it to not stand out,how amazing it is to fit in,how amazing it is to meet people who know what I'm talking about,who truly understand what I mean when I mention tremors or buzzing or any of the other things that MS brings. I am not alone and that is just such an overwhelmingly awesome feeling,that I really have no words to describe.
It was a really good day,I spent too much! Tupperware has changed a bit and I NEEDED the stuff I bought!!
I'm proud of myself,for getting out of my comfort zone,for facing some demons,for not letting the anxiety and panic win,for being courageous,for being afraid but being willing to face it all head on.I am proud of myself.
Saturday 5 May 2012
Keeping this thing quiet
It's been awhile since I had a bad attack,like a real bad one where they pump those vile steroids straight into your blood stream.Had a a few where I've needed oral steroids, but touch wood,nothing seriously serious for over a year(careful Alison,don't jinx it!) Mostly I've been trying to recover from the bad ones I've had and get used to all the changes in my life and body that the bad ones caused. You know I never actually realized until a few minths back that MS is always with you.By that I mean the every day symptoms,you know the tingles the numbness,the random pain spots(doctors out there listen to the people who LIVE with this shit MS DOES cause pain),the burning feet when they're cold to touch.( Yep,last night feet felt like they were on fire again,but to touch them they felt cold??) Some freaky,weird disease I've got! Anyway there's all this stuff that some time during the day will pop up,so that even on a good day there'll be some reminder that you wear the MS label.
I guess I though that you had it, took what was prescribed and then started to heal,I didn't realize that I would have ongoing problems and struggle to walk and need an old lady walker whenever I went out.I didn't understand in the beginning,that I would have symptoms all the time and those symptoms could change.No wonder I've had so much trouble accepting this,soon as I get used to one thing it changes to something else.How is a bossy, control freak supposed to live with something that refuses to be bossed or controlled? and tries to boss ME around and control me?
I have to try to keep it quiet,I have to live my life in a way that doesn't rattle it's cage to much,I try to eat right(big fail on that one) I hardly ever drink alcohol(don't have too much trouble there,I'm not a big drinker,unless someone mixes margeritas!) I take a lot of vitamin and mineral supplements. I try to make sure I get enough rest and I have the Tysabri infusion every 4 weeks.
So far it seems to be all working,every day I'm getting a tiny bit stronger and less wobbly on my feet,I can walk a little bit further with out support( don't think I'm up for a marathon or even walking to the letter box yet!) But I am getting better and a lot more settled.I don't have the rage inside me that I once did,I seem to be calmer with myself and less agitated all the time.I;m not as frustrated with myself when I can;t do something and need to ask for help.
I just hope it all keeps working,another bad attack will do my head in big time,that's the biggest problem for me.Not so much what it does to my body but what it does to my emotions,what it does to my thoughts and feelings.That's what I fear most.
I guess I though that you had it, took what was prescribed and then started to heal,I didn't realize that I would have ongoing problems and struggle to walk and need an old lady walker whenever I went out.I didn't understand in the beginning,that I would have symptoms all the time and those symptoms could change.No wonder I've had so much trouble accepting this,soon as I get used to one thing it changes to something else.How is a bossy, control freak supposed to live with something that refuses to be bossed or controlled? and tries to boss ME around and control me?
I have to try to keep it quiet,I have to live my life in a way that doesn't rattle it's cage to much,I try to eat right(big fail on that one) I hardly ever drink alcohol(don't have too much trouble there,I'm not a big drinker,unless someone mixes margeritas!) I take a lot of vitamin and mineral supplements. I try to make sure I get enough rest and I have the Tysabri infusion every 4 weeks.
So far it seems to be all working,every day I'm getting a tiny bit stronger and less wobbly on my feet,I can walk a little bit further with out support( don't think I'm up for a marathon or even walking to the letter box yet!) But I am getting better and a lot more settled.I don't have the rage inside me that I once did,I seem to be calmer with myself and less agitated all the time.I;m not as frustrated with myself when I can;t do something and need to ask for help.
I just hope it all keeps working,another bad attack will do my head in big time,that's the biggest problem for me.Not so much what it does to my body but what it does to my emotions,what it does to my thoughts and feelings.That's what I fear most.
Simple pleasures
This morning I had a shower,not just any shower but a shower standing up,on my own!(Sorry for the visual of a an overweight,middle aged woman in the shower) It was amazing! Yes,I have showered prior to this but that was sitting down on the shower chair,and it was good but for some reason standing up,it feels so much better.
It's another one of those little things that you take for granted,until you need help for it,then when you can do it again it's just so awesome.
Never would have thought that having a shower would be worth talking about! Guess it beats me having my usual moan fest.:o)
I read over past posts yesterday Far out!! I moan a lot!! Whatever possessed me to start something that revealed what a miserable cow I am? Honestly Alison are you for real? Why the hell are you sharing with people you don't know what a grumpy whiney negative person you are,this is stuff I don't talk about to the people closest to me,why am I letting people who don't know me have access to it? This MS sure has addled my brain!!
It's another one of those little things that you take for granted,until you need help for it,then when you can do it again it's just so awesome.
Never would have thought that having a shower would be worth talking about! Guess it beats me having my usual moan fest.:o)
I read over past posts yesterday Far out!! I moan a lot!! Whatever possessed me to start something that revealed what a miserable cow I am? Honestly Alison are you for real? Why the hell are you sharing with people you don't know what a grumpy whiney negative person you are,this is stuff I don't talk about to the people closest to me,why am I letting people who don't know me have access to it? This MS sure has addled my brain!!
Wednesday 2 May 2012
Maybes
"You come to a realization that 'this is who I am, this is my life, and I've got to make the best out of it.' I don't think people are giving up; I think people are moving on to live their lives. They're tired of waiting. We are refocusing on life, because you can't just sit around and wait." —Alan T. Brown, in an article about redefining "cured" featured in "The Daily Beast"
I read this quote this morning and it helped me understand my "stuckness" a bit. When I first hit that wall I panicked a bit how the hell was I supposed to move on now?I had this massive obstacle in front of me with no idea how to overcome it. Maybe I just need to refocus,maybe this stuckness is part of acceptance,maybe I'm not meant to move on yet,maybe I just need to sit and let the realization,that this is my life sink into my bones.Maybe just sitting here is not giving up but quietly accepting the massive changes my life has taken.
I think I do need to sit and wait for a while,just while I allow myself to fully accept my life now,I think when I fully do that,then I will find a way over,around or through the wall.
I read this quote this morning and it helped me understand my "stuckness" a bit. When I first hit that wall I panicked a bit how the hell was I supposed to move on now?I had this massive obstacle in front of me with no idea how to overcome it. Maybe I just need to refocus,maybe this stuckness is part of acceptance,maybe I'm not meant to move on yet,maybe I just need to sit and let the realization,that this is my life sink into my bones.Maybe just sitting here is not giving up but quietly accepting the massive changes my life has taken.
I think I do need to sit and wait for a while,just while I allow myself to fully accept my life now,I think when I fully do that,then I will find a way over,around or through the wall.
Take it easy
I've been doing a lot the last few days,cleaning,cooking,going out.I haven't been sleeping well so yesterday I thought it would be a good idea not to sleep during the day so I'd be really tired at night and hopefully sleep instead of thinking.
Anyway,I pushed myself a bit too hard I think and suffered for it,last night was strange,went to get up from the table and couldn't.This has happened before,so I just wait it out 'til my legs decide to work and then try again.After about 5 minutes I got up and started to speak to my son and was having a lot of trouble getting the words out,I could see the words clearly in my head but they came out all jumbled and stuttery,this has happened before and we've got pretty good at charades and ESP!!! Somehow he's become very good at knowing what I need,I stopped trying to speak and took a few deep breaths to try to control it.This has always worked before,when I went to speak again,nothing would come out.As hard as I tried I couldn't talk at all,scared the hell out of me. Only lasted a few minuts but it really unsettled me.
I did sleep for about 6 hours straight last night and woke up this morning with no speech problems but the pain in my eye is back,I think I need to be a bit easier on myself and stop trying to do so much. The chocolate mousse tart with the pecan and almond base I made was awesome though!
I need to be kind to myself and stop trying to prove to myself that I'm okay.Well I am okay,but I need to accept my limitations and not try to push beyond them to prove that I still have value as a person.
I do have value,just because I am alive,I am worthwhile,I just wish I could believe it.
Anyway,I pushed myself a bit too hard I think and suffered for it,last night was strange,went to get up from the table and couldn't.This has happened before,so I just wait it out 'til my legs decide to work and then try again.After about 5 minutes I got up and started to speak to my son and was having a lot of trouble getting the words out,I could see the words clearly in my head but they came out all jumbled and stuttery,this has happened before and we've got pretty good at charades and ESP!!! Somehow he's become very good at knowing what I need,I stopped trying to speak and took a few deep breaths to try to control it.This has always worked before,when I went to speak again,nothing would come out.As hard as I tried I couldn't talk at all,scared the hell out of me. Only lasted a few minuts but it really unsettled me.
I did sleep for about 6 hours straight last night and woke up this morning with no speech problems but the pain in my eye is back,I think I need to be a bit easier on myself and stop trying to do so much. The chocolate mousse tart with the pecan and almond base I made was awesome though!
I need to be kind to myself and stop trying to prove to myself that I'm okay.Well I am okay,but I need to accept my limitations and not try to push beyond them to prove that I still have value as a person.
I do have value,just because I am alive,I am worthwhile,I just wish I could believe it.
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