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.