Been awhile

So here I am again,life has been life and I want to start talking again.But not just the bad parts cos life is not just bad,my personality though I tend to focus on the negative.So I'm gonna try seeing all sides of life and focus on everything, it will be easier for me to bitch and winge and moan but I also want to embrace the goodness in me and my life.
I could write a list quite easily of all my bad points I want to give myself a break and find the good ones,so when I can I will be blogging again it will be back and forth between stuff that's happening now and all the things that have happened since last I wrote.
Life is good and MS is still part of it but only part of it.

Still breathing

Well Hello! Yes,it has been awhile. Didn't mean to be gone so long but even though I had stuff to say I couldn't work out how to say it,still kind of in that place but I'm gonna give it a go.
So anyway,I'm still around,still have MS!! Would have been nice to have hit on a cure and have a good reason to have disappeared "Um yeah sorry folks can't blog to busy kicking up my heels from the miraculous cure I've discovered!"
Still having good and bad days and bad bits in the good days.
My father in law passed away 5 weeks ago and my daughter had her baby 2 weeks ago,so I am now a Grandma.Life is good and sad and happy.It's been a very rough few months but my beautiful little grand daughter Grace Elizabeth has brought some joy back.
She is our rainbow after the storm.......

Not much to say

I don't really know what to say any more,It's kind of all just rolled into one day after another just doing the same thing and hoping that tomorrow will be a bit better than the day before.
I try not to think too much,I end up feeling crappy if i do,so it's better if I don't.
Had Tysabri yesterday,went well apart from the usual hassle with finding a good vein.Next week I need to go to the RAH for another JC virus blood test.I'ts an awkward hospital to go to,there's very little parking close by and means a fair bit of walking.Oh well,I'll get over it!
I think this blog might have passed it's use by date,I'm sruggling to write anything and I'm boring myself with what I can think of.
I suppose I could dig down to that bottom less pit of sadness that's inside me but I'm tired of being miserable.I'm sick and tired of being sick and tired and really don't want to take mself there unless it's really necessary
I started taking more Kali-Phos tablets theu out the day and that seems to have helped a fair bit with the tremors.I also upped my vitamin D dose,not sure if I needed to as I need to go to my doctor and get the blood test results but I figured it's the middle of winter and I haven't been outside much so I guess it won't hurt.
Oh yeah,I ordered a portable ramp online today,it's to go outside the laundry door so I can get the washing trolley in and out easier,What an exciting life I lead!

Back.....kind of

Not sure what to say,been pretty crappy the last few days.That eye thing is horrible,the pain would be bearable if my eye didn't keep leaking.I'm constantly having to wipe it and that seems to start it throbbing which makes it tear up which means I wipe it which starts it throbbing and on and on and round and round.Crazy!!
Then last night had bad tremors and lost speech again,tremors stopped after a few minutes but the speech loss lasted over an hour this time. That is scary,so very scary.Losing my ability to communicate is very scary and lonely,I was trying to point to stuff and do charades to make myself understood but each time I tried to use my hands the tremors would start.Or otherwise my hands would either clench into fists or go rigid and be locked straight.Had to laugh though,was busting for the loo so Robert helped me with my walker,managed to get there fairly okay but walking back to the lounge my legs started doing these weird bending and stretching actions.A bit like the Monty Python department of silly walks!! Knees would come up almost to my chest and then stretch way behind me,I cracked up laughing 'cept there was no sound cos of losing my sound.
This morning I'm feeling good and it's like nothing is wrong. Sure wish it was always like this.

Going into hibernation

Horrible stabbing eye pain is back:o(
Eye is leaking like a tap,I won't be around for awhile need to hibernate 'til the pain stops.
Feel like shit and just need a break,MS never goes on holiday

Life is a roller coaster

You just gotta ride it.Hmmm,I'm thinking it's more like a ferris wheel.
A roller coaster has an end to the ride,you start off and the ride has ups and downs and twists and turns but it does have an end point,a destination of sorts. A ferris wheel just goes round and round in the same cycle,no end in sight,no destination,not going anywhere.Just this endless cycle of  struggling to get to the top.It stays there for a second or two and then it starts it's slow descent downwards,it gets right to the bottom.Do you get off,or stay on for the climb to the top again.Okay the view on the way up and when you finally reach the peak again can be pretty awesome,but is it worth it,is it worth the descent and the time at the bottom,only to start struggling back up again.Round and round,no end in sight,just an endless cycle.

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.

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.

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.

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.

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!!!

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.

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.

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.

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.

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!!

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.

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.

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!!

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!

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.

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.

Message to myself

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.

Tired

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.

Same Shit Different Day

That's it.That's all I've got

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.

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

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!!

Driving Test

Monday,I have to go for a practical driving test.Bit annoyed about it,my doctor signs the form to say Yes,Alison is competent to drive,but do a driving test anyway.I'm either competent to drive or not,don't hedge your bets and pass the buck to someone else.
In the meantime I've been driving,geez people are wankers on the road! Not really sure if I really want to be out there,argh who am i kidding.I love that I'm driving again.
Not going to far as yet,been to the shops a couple of times and took David to Parabanks for a hair cut and get shoes for his formal.
That's really all I want it for do Mum stuff,go shopping.I'm not about to start a new career as a long distance truck driver or a race car driver.
I hate the thought of some stranger judging me and possibly taking something away from me that I've worked so hard to be able to do again.
That's probably what I'm so bent out of shape about,being judged and falling short of my expectations of myself.
Hmmm,interesting little insight into myself.

Moving forward

I started this facebook page,to express all that I am.I'ts a collection of different pictures that mean something to me or make me laugh.They might have made me think or felt comforted.Whatever,it's a way for me to rediscover all that is me,there will be some MS stuff on it cos let's face it,I'm not getting away from this anytime soon! But it's for me to enjoy me again,there will be a lot of humour on it,sarcastic,dark humour.As well as silly stuff,anyway just stuff that makes me laugh.
I don't really know what I'm doing with it,computer stuff is not one of my strengths! It's fun learning though 'cept when I get really frustrated!
Cos I have trouble talking at times this will be a way for me to show myself all that I am and sometimes cos my hands don't work so good typing is hard so finding and displaying the pictures helps me unlock me.

Nothing today,except this wonderful poem written by Tammy Malkowski

Thank you Tammy Malkowski.It's like you looked inside me and wrote what I couldn't.



How MS Feels (A Poem)

My hands shake as my words slur,
But it’s not what you think.
I trip and I sway,
Though I haven’t had a drink.

I could fall at any moment. 
And this never leaves my mind
But I’m trying hard to manage
As I’m on this MS ride.

My legs look normal
But feel like rubber.
My arms look strong enough,
But melt like butter.

I have slept for hours,
But my eyes still droop.
I want to walk straight,
But my head loop-de-loops.

You think I’m paying attention,
But my mind has wandered away.
I want to speak clearly,
But I’m stuttering today.

I try to read your email,
But I am seeing double.
I want to come with you,
But walking gives me trouble.

I may need your patience
And your compassion too.
But never your pity
For all I have to do.

I need you to be kind.
And try to understand.
I’m living a new life
Doing the best that I can.

I am making an effort
To be someone who
Is making a difference
In my own life too.

Give me a chance
Be on my side
I am still me
Even with all the drama inside.

My body has changed
But my heart is the same.
I still have a beautiful life
Even when playing the MS game.

The thing I need the most
As you try to understand
Is the comfort and confidence
That I still have my friend.

by Tammy Malkowski

Almost ready to let go

I think i'm almost ready to let go of this.I have it yes,no denying that.I'm not going to get rid of this,best to learn a new way of living.
I need to find a way to have MS and also have me,it's hard cos a lot of the things I liked to do before are too hard for me to do now.Finding new interests is tough too,symptoms flare up and it makes it hard.
I need to try to get out more and not be so on my own as much,I think that would help me to stop being all about MS like I am at the moment.
I've lost touch with most of the people I knew well before all this though and it's kind of hard to meet new people when you don't go out much!!
I know what I need to do actually being able to do it is another thing entirely.

Remembering who I am(Inspired by Jackie)

I get obsessed with things,anyone who is a facebook friend of mine will know that for the last few months mt home page has been full of MS awareness stuff.I trawl the internet looking for any info I can that may help me make sense of how my life has changed but that is part of me.I get obsessed with things and when I have sorted things out so I can understand it for myself then I can put it away and move on to my next obsession!! This one though will always be with me,this is not something I can make sense of and put away,unless a cure is found I will always have it so I need to work out a balance between my obsession and remembering that there is more to me than just MS.
My friend Jackie,a lady I have never met but has become very dear to me reminded me that this blog is called I have MS I am not MS and that I need to live that way.
Jackie is a wonderful person who has encouraged me all along the way with my blog,she makes me feel good about myself and has this ability to help me not get stuck inside myself so much. Thank you Jackie,you're a star and I love you :o)
So other than MS what is there? My weird,quirky sense of humour,my compassion,my caring for others,my love for my family.
I'm not thinking clearly at the moment,but I will remember who I am and learn how to live with this and not be it.

Too much whining

Inever intended for this to be a place for me to bitch moan and complain!! Seems to have become that though,I'm having a hard time focussing on anything but MS at the moment.It seems to have become my latest obsession(I wonder why!) I trawl the internet looking for some insight into making myself better,stronger,I guess I'm still looking for a miracle,I've joined countless MS pages,support groups.I google for answers that are unanswerable.I hope i can let go of this soon and just get on the best life I can,it's wearing me out.
I want my previous obsession back,Indian food was so much more fun and tasty!! Finding and tryingnew recipes was a much better use of google I think.

The cycle moves on

This grieving process just goes on and on but I have noticed that I don't feel each emotion as deeply as the cycle goes thru them.
A good thing I think,maybe I'm getting my shit together finally.I can only hope.That's going to be my next tattoo .I saw this awesome picture the other day,it was the word hope with an MS awareness ribbon entwined and the top of it used as the O in hope.I'm going to get COURAGE on one of the ribbon strands.It's going to be on the inside of my right leg,just above my ankle.
Not much else to say,life goes on bringing with it what it brings.
Some bits hurt,some are numb,some are tingling,some are fuzzy.
Life with MS,hope for a cure.

I'll work out the title later

A random thought from nowhere popped into my head while I was going through my morning ritual of fighting the need to get up for the toilet or to stay snuggled in bed.It's such a cold,grey,drizzly,miserable morning I wanted so much to stay snuggled but as usual my fear of my dodgy bladder won out so I got up!! Even when I'm laying there thinking "Just 5 more minutes" I know full well I won't give myself that luxury,My bladder wins every time! Or more the not wanting to lose control wins out.
So any way back to the thought(hope I can remember it) I realized that some times we give power of parts of out lives to people who don't even know we have. People do things to us in our lives,that can have a profound affect on our lives and change who we are and meant to be,but they have no idea what they have done to us.
There is someone in my life who hurt me a long time ago,way back in time when dinosaurs still roamed the earth( I will not mention this hurt or who it was,so please don't e-mail or facebook message to ask about this) that impacted me in ways that I am still untangling,but they have no idea.They probably don't remember what they did or that I changed as a result of  their action.
That I became afraid,mistrustful,jumpy,negative,critical etc.etc.etc.That other people have seen the worst of me and helped me pick up the pieces of my brokenness.
I took on a secret that I shouldn't have to protect other people but who was protecting me?? And why did I think I needed to protect the person who hurt me? I won't reveal that secret but I won't let that person have power over me any more,I deserve not to hate,or be afraid.I deserve to live my life the way I was meant too.I deserve not to be held down any longer by someone elses actions.
This has impacted me for way too long and that person will not have the ability to have power over me any more.I'm taking it back,claiming me back and they don't even know what they did.

Neverending

Does it ever stop? More pain.Just when I think it's over,the pain starts somewhere else.
It really saps my strength and makes me feel down again.
I don't want to have to keep taking pain killers,my poor liver needs a break,but I don't want to live my life in bed trying to get some relief from what ever part of my body has decided to hurt.

Up too early

Think I'm going to have a "bed" day today. Apart from Sunday,I've been out every day since last Wednesday and I think it's catching up with me.I think I've probably pushed myself past my limits and my body doesn't like it very much.
Sucks a bit when you try to be "normal" and you end up struggling for days after.
Oh well,no use complaining,such is life with MS,normal is not really an option.Maybe I need to re-establish what my definition of normal is.
Today I think I'll be spending the day in bed.

more chatting

The reason I started this blog is soon to happen!
So in case you can't remember the reason I started to blog was because I was asked to write my story for my states MS magazine.I didn't believe I had much to say(hmmm,how many posts am I up to now?!) or that anyone would be interested if I did manage to write anything.I thought my negative and cynical nature would turn people off,turns out some people like sarcasm and cynicism!!
Anyway I started blogging to try to get my thoughts in order and work out if writing anything for the magazine was something I could do,it's no work of literary genius but nest months copy of the MS magazine will have my story in it!!! WOOHOO!!! I actually finished something I started.
I'm excited cos I did it and didn't talk myself out of it,tell myself  no-one would be interested in anything I had to say or it would be boring or not positive enough.That my negativity and self criticism would drag people down.Most of the stories are from inspiring people who haven't let MS get in the way of achieving stuff in life and I thought a boring middle aged lady who really hasn't achieved much of anything in life before MS and certainly nothing since MS would not be an inspiration to anyone. Actually I did try to talk myself out of it and I DID tell myself those things but somehow,with the help of this blog I managed to get a bit of a tale out.
Now I'm worried cos people will read it and maybe all my fears will be realized,too late to back out now though,it's done and ready to be printed. AARGGH!!
So do I continue with my blog or do I retire from putting my thoughts out there? I'll have to thing about it,it's helped me so much maybe it would be good to keep it up.

Just a chat with myself

So after yesterdays bit of a dummy spit I spent the day with my friend of nearly 40 years and got out of my house,out of my head and got a fresh perspective on things.
Just getting out of my usual routine has done me a power of good,I need to do it more often I think.I need to talk to :"real"people more often really push myself out of my comfort zone and get out of this really comfy computer chair and not isolate myself so much.
Of course,the MS stuff poses a barrier there,transport,walking,blah blah blah,but I think a bit of creative thinking and maybe asking for help and not feeling I'm a burden and a pain in the arse to other people might help over come some of those problems.

Bit of a rant this morning

** Foul language to follow**
i am really pissed off with all this so called "cures" out there.You know the ones,eat this,don't eat that.Take this vitamin,take that supplement.Use this bit of equipment,Jump up and down 3 times and kiss my arse.Oh yeah,don't forget to send me all your money and your first born child
The one that got me so angry though is from a "doctor" Apparently he developed this supplement for his daughter-in-law and she now has no symptoms.It's a miracle!!! Now I'm not questioning his medical degree and really this was just the straw that broke the camels back,so it's not really him I'm so angry at.But at the whole industry out there that sucks into people's illness and desperation for a cure,to make money for themselves.Bastards!
And they always qualify their claims with"You have to WANT to get better" "You need to BELIEVE you'll get better" There is another one but I'm too angry and lazy to go look it up!
So the reason your "miracle" didn't work is because I don't want to get better? yEAH OKAY,COS i REALLY ENJOY TINGLLING BRAINFOG FORGETTING STUFF NOT BEING ABLE TO WALK MORE THAN 20 METRES ON MY OWN. Yep that's right the reason your fucking crackpot plant shit doesn't work is cos I didn't believe it would.
MS is so much fun that I don't want to get better I don't believe I'll get cured,I want to stay the way I am,with my body going haywire all the time.It was so much fun the other night when my hands locked up and the tremors started and I couldn't get the fork to my mouth.
Fucking stupid dumbarses with your crazy claims sucking money of people who are already struggling financially with the cost of their disease and the fact that we may not be able to work and earn more.
Here's a clue,money grubbing arseholes,if your "cure" is so great,if it can do so much good,if it can give people back their lives.Then GIVE IT AWAY!! Let people have it for free,give it to the medical fraternity for testing,don't tell people they won't get better unless they want to.We all want too.
So much for my Happy,happy.Joy,joy positive vibes!

Bugger,Shit,Damn

Spoke too soon,woke up this morning feeling like crap.That horrible stabbing eye pain is back and I just feel so sick,UGH!!!
Will it ever stop? I start to feel good and my body turns on me bringing me down again. I need a break,I need a little bit of time to make the positiveness in me stick before I have to face my next hurdle.
Nope,not going to happen,I don't want to feel bad any more,I don't want to start down that anger road again.I only just got off it.This is not an option,I do not want to feel resentful and bitter.
I suppose it's good that I recognize it's happening,suppose that's positive.

Life is pretty good

So before something else bad happens need to quickly blog some positivity!
Life at the moment is going well,despite our recent difficulties our marriage is back on track and we are happier than we've been in a long time.Maybe living apart for those few days was good for us,helped us both to see what is important and what matters most.Gave us both time to think and realize what we both need.
I have a wonderful family,Sarah and Luke are having a little girl in October.Adam and Stacey get married in December and David turns 18 and finishes high school this year,hopefully with a score high enough to get into vet science at uni next year.
MS continues to drag me down but now that I've begun to get my head straight the physical stuff is not so difficult to bear.Don't get me wrong it's still tough when I can't get my words out or I start tremoring or the numbness creeps up my hands,I'm not sure what's worse,numbness or the pins and needles.But because I'm more together with my emotions it seems to not upset me quite so much.Course if anyone wants to wave a magic wand and cure me,I won't say no!!
I have met some amazing people online from joining a few support groups,one of which is specifically for MS people in my state.I've been lucky enough to meet some of the people from this group for real and to meet and talk to people who actually know and understand what I mean when I describe some of the weird symptoms I have has been,oh crap,I can't think of a word that properly describes how I feel. It's less lonely,less isolated,I kind of feel normal if that makes sense.
Okay,head is starting to droop and hands are tingling,time to stop.

Sleep,what's that?

Cough,cough,cough,cough,cough!! Add a few sniffs.Blah,I feel like crap! Very tired but start coughing as soon as I lay down so not much sleeping being done,be glad when I feel better physical health wise so I can start enjoying feeling better emotionally.
I was going to mention a few people who've been incredibly supportive and encouraging of me since I started blogging but I'm worried I'll miss someone out so I'm just going to say a huge THANK YOU from the bottom of my heart.Without all your continued caring I would have given this up before it made a difference in my way of thinking.
I will always be extremely grateful of you all and appreciate everything you do and say.
Okay might try sleeping again,I can't feel this crappy for ever right?

Neurologist visit

Today was the first time since I got on this ride that I left the neuros office with some good news!
Latest MRI showed no new lesions and the existing ones are a tiny bit smaller YEAHH!!! If I could,I would do a happy dance! I'll have to be content with dancing on the inside,with my luck I'd probably fall over and break something!! Don't want anything to take away this good feeling,all the symptoms I've been having are because of the throat infection and signals not getting thru properly,not another relapse which I was scared of.
So whatever I'm doing I need to keep doing,not sure whether it's the Tysabri or all the vitamins,or the ambotrose powder or the New Zealand sea water I just started drinking(yuk,not bad in cranberry juice) or a combination of everything but I'm not changing anything.Something's helped halt this from advancing any more and I want to make sure that keeps happening.
WOO HOO!!! No new holes :o)

Yucky throat

So my throat is infected and inflamed,potato didn't do the damage it's all these people who will insist on sharing their germs with me! Feels like there's a ball of razor blades in there,no wonder I've been struggling a bit the last few days. Every MS symptom I've ever had has come back full throttle all at once,except for my legs.For some reason they feel stronger,all the numbness and tingling is in my arms and hands and my head fees like I need to take it off and put it back in the right place.
Forms are all done,doctor is trying to get it so I don't have to keep doing the progress claim forms every 6 months.I've been assessed as total permanent disability and been paid out a lump sum because of it.Don't understand why the same insurance company needs medical proof that I still can't return to work every 6 months when they already have paid out on the TPD claim.
Despite feeling yucky cos of my throat mentally I'm feeling pretty good.I think the acceptance is starting to stick and I don't have anger at the core of me any more.
It's weird,I feel strange,different,lighter almost.

Not much

Off to the doctors today,no dramas health wise.Just need a form filled out so I can put in my on going claim for income protection insurance. Although I might ask him to check out my sore throat,not sure if  I've caught the cold everyone has had,which would explain all the random sore bits in various parts of my body and the fuzzy head.Or whether that bit of potato from last nights tea that was way too hot to swallow and kind of got stuck a bit on it's way down did some damage! Whatever caused it,my throat hurts!
Neurologist tomorrow to get the last MRI results,I think I might have active lesions if no new ones.I've had a lot of symptoms flare up recently some that I haven't had for awhile.Been waking up with both hands numb,I did think maybe it was a pinched nerve in my neck but this is one of the things that happened before my last big relapse.Couple of other things as well,that I haven't had for awhile,makes me a bit nervous,still trying to recover from the last biggy,don't want to start over again.
Friday is Tysabri day,I get to sit in a recliner for 2 hours,watching TV,drinking coffee, with a needle stuck in a vein.With a bit of luck they might find a good one this time!
Most nights I lay in bed and think of stuff just lots of random rambling thoughts pass thru my head and I think"I must blog that" by the time I finally sleep then get up I've forgotten those amazing thoughts I had,frustrating.
All my genius thoughts and solutions to all the worlds problems stay locked in my head cos I have a memory like a sieve.Think I might be a bit full of it this morning!!

Acceptance........we'll see!

I have MS,yep that's right I do.I have MS,whether I choose to accept it or not,I still have MS.
It's still going to be in me wreaking havoc on my body and life,I can choose to fight the diagnosis,fight that everything has changed or I can accept it and start making a few changes to make my life more liveable more enjoyable,
Instead of fighting against it,refusing to admit that I struggle sometimes,I need to start fighting FOR me not against me.
I need to speak up when I can't manage something,there is no shame in asking for help.I am asking for help not for everything to be done for me.
I can still be a fighter,still be a warrior,wear my tattoo with pride but I need to be a warrior for me not against the disease.Will probably make for a calmer,more peaceful feeling inside me.
I have this,until they find a cure.I need to live the best life I can until that cure is found.

Still around

Been awhile,so much going on but didn't have the words to say anything.
Since I last typed,I left my husband and came home again!
Yep,it''s been an interesting week and a half,still not sure if I can talk about what's being going on but I do seem to be finding a new attitude,I seem to be losing my negativity,I seem to be remembering who I really am and what is most important.
I think I am losing all the anger,bitterness and resentment that has kept me going for so long.
I think that all the pain I locked up inside of me since the rape was loosened because of all the grief I have been feeling because of the MS diagnosis,to become whole and accepting of  my new life,I believe I have needed to confront the old and all the hurts and face what I didn't think I was capable of facing.
Turns out I am and when you do that some of the stuff you are so afraid of losing if you do that,you don't end up losing at all.
I know this sounds very confusing but it makes sense to me.Maybe!
Think I'm still processing it all,Robert and I still have a way to go but we are together as we should be,as we're meant to be.

Life goes on

Been off with the fairies the last few days,a lot happening,life is taking a different twist and I don't feel like talking about it.
Went to an MS fundraiser on Sunday which was wonderful and was great to meet some of the people from an online group I'm part of.
It's a bit weird meeting people for the first time when it feels like you've known them for years.
There were lots of people and it was very loud so unfortunately,claustrophobia,anxiety and panic reared their ugly heads.I didn't run away tho,I did stay just spent a fair bit of time outside.Meant I didn't catch up with some of the people I wanted to meet but that will happen one day.
Inferiority,insecurity,not feeling good enough are some things that I need to work on.Believing that people won't like me if they''really" knew me is something else I have to get over.
And I so need to stop being so damn negative and critical of myself.

MRI today

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.

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!

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.

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.

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.

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.

: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.

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.

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.

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.

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.

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.

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!

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.

Powerful words(not mine)

• I read this in a support group I belong to,I think other people might need to read it too.
  
   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!
  
  

  Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bic2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.
  
  Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.
  
  Another statement that hurts: "You just need to push yourself more..." Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. MS causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.
  
  When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my MS at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.
  
  When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 000. MS does not wait, nor does it forgive... when we say "please ... now!" it means now.
  
  If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there something that cured, or even markedly helped, all forms of MS the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.
  
  In may ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible...
  
  I need you to understand me!

  • • 
      

      
      
    • 
      

      
      
    • 
      

      
      
    • 
      

      
      
    • 
      

      
      

      
      
  • 
    

    
    

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.

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.