I have MS I am NOT MS

Bit of a set back

2014-06-10T22:20:00.001-07:00

Disappointed that i've needed to start taking steroid tablets.Been struggling physically for a few days and was unable to walk for a bit Sunday,I'm hoping that by taking the tablets now I can avert a full on relapse.It's been a little over 3 years since the last big one that caused permanent damage,the Tysabri infusions are doing their job well.
There has been a few minor issues in that time but I've just taken the tablets for 3 or 4 days and it's settled down any inflammation going on,I think though this time could be a bit different. I've had a couple of months of emotional turmoil like I've had before the other big ones,it's hard to explain without sounding like a pyscho,I have become very withdrawn and needing to be alone but very lonely and sad and positive that everyone is against me and doesn't want to be around me.Which could quite well be true given that when i'm like this i'm a pretty crappy friend.I get very paranoid and forget that just because i think something doesn't mean it's true.
I have isolated myself partly because I don't know how to be and partly because it's hard for me to get anywhere and i hate asking for help all the time,it's just easier to be home.I don't even want to talk to anyone on facebook anymorw cos i'm tired of dragging people down with my sadness and i hate faking happiness.It makes me feel like i'm lying to people and i don't want to do that.
Anyway hopefully the steroids work cos if I'm nuts now I dread how bad I'll be on a sreroid infusion!! Avoiding it at all costs,no sleep,crazy thoughts,too much energy without the physical capablilty of expending it,last time round i barely clung on,i don't want to do it again

Still blank

2014-06-02T07:45:00.001-07:00

I decidedI do need to write but i don't want to share,that might seem a bit silly but what I mean is I won't be putting it on facebook.If people stumble upon it then so be it,I guess they were meant to see it,I just wAnt to be able to express myself when i need to but as it's just gone midnight it won't be now!

Blank

2014-05-31T05:36:00.000-07:00

Been doing a lot of thinking so thought it would be good to come here and get it out.Soon as i start typing my brain goes blank! Oh,well guess i don't need to vent as much as i thought

Should i continue?

2014-03-22T01:58:00.001-07:00

don't know is it worth airing my thoughts trying to make sense of them? Some people would say yes,me,i just don't know .
I kind of want to be done with it all.all this thinking and struggling to just be happy with who i am and where I'm at.
This MS business just does my head in,it just kind of wandered into my life and turned everything upside down,changed everything and how thingswere meant to be.it just takes and gives nothing back.If it were a friend it wouldn't be.
I am jealous of those I know who have it and can walk with out help,I am jealous of those who can work,I am jealous of those who are able to accept it and make a new life for themselves.Yep,I'm jealous.
At least i can be honest and admit it,that's a positive maybe.
I've been very down the last few weeks and angry.I feel like I've stagnated in my thinking got stuck.
This makes no sense.
I accept to some degree that i have MS and i can't change that and i hate it,maybe that's where i can find peace and acceptance,I have MS and I hate it.
That's where I'm at hating the disease hating what it's done to my life and body and I'm okay that I hate it

Hopefully this works

2014-03-19T07:04:00.000-07:00

Hmmm,where to start?
A very wise friend asked me what had happened to my blog,good question.I kind of abandoned it i guess.Got sick of writing the same thing over and over again,then I just didn't know how to write what i needed to write.Life got busy with life and i lost touch with expressing myself.
Last few weeks have been very tough so here i am trying to write my way out of my darkness.
At the moment i hate everything,most of all me.I don't know why and it makes me angry cos i thought I'd stopped doing this to myself.
I'm stuck and don't know how to get unstuck,I'm overthinking everything,not sleeping,feeling old,feeling oh i don't know,heavy?weighed down? Not sure what it is.
I think part of it is that i thought I'd get better,not be free of MS but at least be walking on my own.I've been relapse free for close to 3 years now and I've recovered from the last one with permanent damage to my mobility.
I think I'm angry about that,I know i shouldn't compare(but i do) myself to other MSers but using the walker makes me feel old and quite frankly a pain in the arse.It's always in the way.I've tried to be positive about it,it means i can walk further and faster,get less fatigued all that stuff but honestly i don't like being not quite 50 and using a walker like someone in their 80s.
Yeah,yeah,I know there's people worse off than me,there's also a lot of people a lot better off than me

Been awhile

2012-12-26T18:55:00.002-08:00

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

2012-11-11T04:33:00.003-08:00

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

2012-08-11T02:42:00.002-07:00

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

2012-08-05T15:06:00.002-07:00

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

2012-08-02T00:34:00.001-07:00

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

2012-07-31T14:36:00.003-07:00

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

2012-07-31T06:04:00.000-07:00

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

2012-07-27T19:27:00.002-07:00

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

2012-07-25T13:53:00.001-07:00

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

2012-07-24T06:28:00.001-07:00

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

2012-07-23T13:01:00.002-07:00

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

2012-07-22T15:21:00.003-07:00

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

2012-07-19T19:40:00.002-07:00

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

2012-07-16T14:55:00.002-07:00

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

2012-07-13T22:42:00.001-07:00

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

2012-07-13T04:07:00.001-07:00

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!

2012-07-11T17:50:00.000-07:00

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.....

2012-07-11T04:56:00.002-07:00

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?

2012-07-10T00:39:00.001-07:00

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

2012-07-08T23:32:00.002-07:00

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!!