But wait,there's more!

Geez,this is taking so long and I haven't even got thru the first day yet.I'm beginning to wish I'd never started this whole process,it's taking me back to feelings I really don't want to feel again but for some reason I know I need to do this.maybe then I can finally accept that I have this horrible crap and be free of the anger.


A nurse comes into the room closely followed by Moe,Larry and Curly,previously known as  Huey Dewey and Louie,she looks at me,looks at my name boldly posted above the bed.Picks up my chart,winks at me turns to the doctors,hands over the chart and politely points out that the patient they are looking for was here all the time.Okay so no more hiding or avoiding,I have to do this and no time like the present.
They start to explain what they're going to do and it is suggested that I sit on the edge of the bed and bend forward as far as I  can,this is not easy as half my body has no feeling and I have no balance or strength to hold myself up.Robert hunches down in front of me and gets me to wrap my arms around his shoulders as he holds me round the waist to steady me.Unfortunately at some point I squeezed so tight I cut the blood supply off to his head and he nearly passed out!.
The doctor(must be Moe,he seems to be the one in charge of this whole catastrophe),starts to inject local anaesthetic around my lower back,where they're going to do the lumbar puncture.I can begin to feel myself going into a panic attack and I'm fighting hard to regain control,but all my usual techniques are forgotten as I'm so damn tired and stressed and frightened.My sugar levels are really low as it's been hours since I last ate and I start to cry.
They prepare everything and start to push the needle into my back,but it's not quite the right spot so withdraw and start again.I lose the plot and start to sob and weep loudly now,I've completely lost any semblance of normality,poor Robert is hunched down in front of me trying to hold me up and comfort and calm me,but I'm now in full on panic attack mode and start wailing.(Anyone trying to sleep in that ward,must have thought someone was being murdered) They try again and the pressure is incredible,I'm screaming,"It hurts!It hurts!" So that needle gets withdrawn and they put some more local anaesthetic in the spot.I am completely overwhelmed by the panic now and it triggers a massive flash back to the night some one broke into our house while Robert was at work and attempted to strangle me,then raped me.I have lost my mind.I hear the noise but don't realize it's coming from me,I am lost to reliving the evil that man did to me.I feel another needle go in and feel the pressure and the pain,then a voice some how cuts into my terror,One of the doctors says"Oh come on,it's not that bad!" Robert looks at me,kind of shuffles back a little bit  and is glad that he's not the one about to be the subject of my rage.The air is thick with vile language coming from me I call him every name I cam think of and my anger is so intense I invent a few too,all 3 doctors are now backing away as I let fly with every bit of emotion I've been feeling all day.One of them very sensibly decides to put the whole disaster on hold and they call it quits and disappear as fast as they can.I'm sobbing,this damn thing still isn't done all I have to show for it is bruising and pain,that lasts for days.The nurse is wonderful,she's angry that they've put me thru this and says they should have stopped after the first attempt and taken me to x-ray to get a propper placement,it's obvious my spine is curved and they needed help to do it properly..She offers me a cup of tea and trys to find me something to eat(Please no egg!).Sarah turns up and Robert needs to go home he's almost as exhausted as I am,I think it's round about midnight or 1 am now and I've been awake nearly 24 hours,barely eaten and have just about gone stark staring mad and I still don't no what's wrong.The tea is amazing tastes like heaven and I need a smoke so Sarah finds a wheel  chair and we go off.I don't want to go back.I don't want to do this any more but I do and try to get some sleep Sarah leaves and I lay there in the dark,alone.

I need a break,recounting this bit was very hard.

On and on we go

Frustrating reading this,isn't it? All the stops and starts,the amount of detail that doesn't need to be there,the over use of exclamation marks and diversion to a different topic.Yep,really frustrating.Imagine how frustrating it is living like this!! Me telling a story..... "it was Monday,no hang on,I think it was Tuesday or maybe it was Monday cos I went to the doctors Tuesday and I wouldn't have gone out twice in one day Hmmm,maybe it was Wednesday" See what I mean? People are very polite though and although they feel like screaming and strangling me,most don't!  For Pity's sake Alison,it doesn't matter what day it was just get to the point already!!!


Okay,continuing on. We get up to a 2 bed room,the other lady is asleep,actually she's semi comatose,poor thing. Get sorted out,obs get checked yet again.Still have no strength in my left side and if I raise my arm it just falls back down.This is scarey,you know?! It's now about 10.30-11 pm and I've been up since 4.15 a.m..I've been poked and prodded,had all sorts of tests,been in and out of different machines,spoken to so many people I've lost track of who is who,I've told them all exactly what's been happening countless times and still I'm none the wiser.I think at one point I told a cleaning lady what was going on,she was the most empathetic and compassionate of all the people I've spoken too,that's how I know she wasn't a doctor,she actually CARED and listened.
3 doctors march in,.the one from emergency is not with them.I think he gave up on me and passed me over to Huey,Dewey and Louie!
They want to see the lady who needs the lumbar puncture.I'm exhausted,fed up and can't take much more so I say " Oh her? I think she left! Yeah,I'm pretty sure she went home!!!" They believed me! It was so funny! The one at the front turned around to march out of the room and knocked into the other 2,who backed up and nearly fell over each other.Robert and I just looked at each other and burst out laughing!! I think we just needed to break the tension and have a tiny bit of normality,for a couple of minutes it was just us,being just us.

Sorry,got to stop.....stay tuned we're nearly done

Wanting to get this done

It's early but I've got heaps to do today so I just want to write as much as I can while I'm feeling fairly well.I'm getting a cold,so this could be my last good day for awhile.
We continue to wait,different people come in during the day,to check obs and do various tests,I can barely stand,do you really think it's possible for me to rise onto my toes?! There seems to be lots of knowing glances and head nodding going on but no-one thinks I'm important enough to let in on what's going on.The day drags on,I've rung Sarah and filled her in with the little I know and she goes into big sister,filling in for Mum mode and picks David up after school and they come to visit for a bit.I've rung work and let them know I won't be in the next day but I should be good for Saturdays shift and I'll ring back if things change,I think at this point I'm just totally fed up and want to go home and pretend nothing is wrong. Looks like I'll be staying in overnight so Sarah,Robert and David leave to get some tea,and some stuff for me,and go pick my car up from work..
** I've got to the point now where I've lost the order of what happened when and who I've seen and spoken too so this will get a bit jumbly and confusing**
I think I've talked to Adam on the phone,or otherwise Sarah rang him.It must have been so hard for him to be away from home and getting this information,sketchy as it was.It's hard to know what's the best thing to do,ring him with only half details and leave him worrying or wait 'til we know for sure,but then he might feel that he's forgotten or not important enough to keep in the loop.
Anyway a doctor shows up again to tell me the neurologist(who I haven't seen) thinks they need to do a lumbar puncture,oh joy. I immediately go into panic mode(hey I've seen that done on enough shows to know it's not nice!!). I tell him no worries but you'll have to wait 'til my husband gets back,I need some support and I'm not doing it alone.
I ring him,and my Dad so as I can get some clarity into my freaking out mind.Doctor shows up again and says he can only wait 10 more minutes as his shift is nearly over.Oh my God!! How inconsiderate of me to not want some stranger(yes,I know he's a trained medical professional) poking needles in my back while I'm on my own)
**Due to another issue,I have a real problem with men I don't know,I particularly cannot stand men I don't know being behind me** I really need Robert with me,not because I'm being a bitch or difficult but because I know I will go into full on panic attack if he's not.
Robert gets back and I disappear outside with him for a smoke! I'm stressed,I'm preparing myself for something I don't want to do but know I need to do,so I need a smoke. Get back and an orderly is there to move me to the ward I'll be in over night,cool hopefully no-one lets the doctor know where I've disappeared too!!

**Need to stop,writing this bit out is really hard and I need a break.I'll be back later**
Hmm,I thought I posted this all ready,like this morning when I first wrote it!! Oh well,it's been a full on day and I don't feel like doing anymore now so I'll just post as it is

and a bit more

The MRI is over and I get back to "my" bay in emergency,I'm now able to walk a little better,well I can stand and kind of move my legs in something similar to what people call walking,so I decide I've been here long enough and it's been hours since I last had a smoke,I'm going to have one! Robert is annoyed at me cos i won't just lay down and wait for the doctor but he's been with me enough years to just go with it,besides he wanted one too!
As well as wanting a smoke I'm also now starving,It's now about midday and I've been awake for ages and haven't eaten,we go back inside and Yay! I get a lunch tray,Yay until I look at what they gave me! Soup that smells a bit tomatoey and 2 half sandwiches,one of which is egg.UGH egg,I can't stand egg sandwiches,The other is some kind of meat with this weird smelling relish on it.Fortunately there's a coffee!! and some peaches with custard on it.Robert had the sandwiches,I had a couple of spoons of soup and dug the peaches out from under the custard and that coffee was divine!!!
One of the doctors turns up with some good news,some of the test results are back and I don't have an anuerism or a brain tumour!! Well that's fantastic and I din't realize how scared I was 'til I wasn't anymore,but what do I have? Still need to wait for more results and some other doctors to look at things.so I get moved to the not so urgent part of emergency

I was hoping to finish this tonight but my head is buzzing si I need to stop now,hopefully I can get this done tomorrow

The saga continues

So when I left the story a couple of weeks ago,we were on our way to the hospital,I'm trying not to panic but I've watched enough medical shows to know something bad is happening to me.(Who needs doctors when you've got E.R.,All Saints,Grey's Anatomy etc.etc.?!) I really should be a doctor the amount of medical knowledge these shows have taught me!! Do you think I could Recognized Prior Learning credit,based on watching too much T.V.?!
Anyway,we get to the hospital,Robert stops right outside Emergency and goes to get a wheel chair,I don't need a wheel chair,I can walk.Yeah,right,sure you can.I hang onto the car and kind of shuffle and hop on my right leg as far as I can,then have to admit defeat and get in the wheel chair.We get to the triage window and I start explaining what's going on,next second the nurse is in front of me getting me to smile and lifting my arm,getting me to stick out my tongue,*Uh oh,they think I've had a stroke* I'm saying "I'm okay,I'll be fine" I get wheeled straight round to the back area,Wow,no waiting,this has to be serious. I get put in a bay and straight away I have nurse sticking needles in me taking blood and sticking round discs on my chest and I'm attached to a machine that goes Beep! There's someone else trying to get me changed into a gown,which really pisses me off,just leave me alone okay.I get taken to x ray,then have a cat scan.I get back to the bay and I'm busting for the toilet,so one of the nurses wheels in one of those commode chairs.The look of disgust on my face! I'm not using that! For one thing no-one's bothered to pull the curtain closed and there's people walking past all the time and of course everyone looks in to the bays as they walk past so there's no way I'm going to use it,even if the curtain is closed I'm not going to.I don't care if there might be something seriously wrong with me,I refuse to go to the toilet behind a curtain,with anyone marching in at any second.For another thing there's no toilet paper,what,you think I'm going to drip dry?! Anyway  the nurse helps me get to a real toilet with a lock on the door,then stands there waiting,I'm thinking Get out! Please get out. I just want a couple of minutes to myself,I finally get to go on my own with the door locked and the nurse outside,knocking on the door asking if I'm okay.Umm,yeah,kind of,I'm left handed,I do everything with my left hand.This thing what ever it is has affected my left side,all of a sudden I've got to do simple things with my right hand,it's actually not very easy.Even tearing toilet paper from a roll is something that needs to be thought about(Go try it,next time you go to the loo,try doing what you normally do with your non dominant hand,it's hard).I get back to the bay and more doctors come in and I tell my story yet again,I get poked and prodded a bit more,lift my arms and legs(Not).Do all these other tests to check for strength and balance.Then go for an MRI( I'm pretty sure the devil himself invented that machine,horrible,evil thing it is)

Okay need to stop for a bit,hands are giving me trouble and this is taking a lot longer than i thought it would,I'll write more later

I wonder.....

When I was 13 I got the opportunity to go to New Zealand for 3 weeks with a group similar to Girl Guides that I was involved in.
It was amazing,we went to the North Island and I saw so many fantastic things,that I hope one day to go back and see if much has changed in 34 years(My guess? Yep,lots!!)
A couple of days before flying home we were in Auckland staying in a hotel and we walked into the city one night to get ice cream.We had to walk up hill to get back to where we were staying and I remember this awful heavy feeling came over me,everything seemed to take an almighty effort to do,even lifting the ice cream to my mouth was to hard.I chucked it in a bin cos I knew I couldn't eat it AND try to walk up the hill,I remember feeling that there was no way I could move my body properly and all I wanted to do was lay down and not move.I kept going and the effort of just moving my legs for each step was incredible,I looked up to see how much further and my eyes were "funny" I could see but it wasn't clear like normal.Everyone I was with were having a good time talking and laughing about the stuff we'd seen and done and I just wanted to cry but that was too hard to.If I started to cry I knew there would be no way I could get up the hill.
One of the women we were with noticed how quiet I'd become and asked me if I was okay,I told her I was fine and just tired,she walked beside me with her arm round my shoulders  and the extra weight was almost my undoing.I trudged on and got back,crawled into bed,with my clothes on,I couldn't waste time to get changed,I just needed to rest and slept for hours.They had to wake me the next day and I was normally the first one up,ready to go.
I kept getting asked if I was okay and I would say I'm just tired and I've got a cold.I did have a cold a few days before hand but it had cleared up.Why didn't I say anything? Probably cos I was 13 a long way from home,with people who although really great I didn't know that well and I was scared and wanted my Mum!
I spent the last 2 days we were there sleeping heaps and resting when I wasn't asleep.
The heaviness lifted and by the time I flew home I was almost back to normal and the excitement of seeing my family and talking about the trip made me forget about the heaviness and how weird my eyes went.
I'll never know, so it's a bit stupid to speculate,but I wonder if this was my first encounter with MS?

Grateful

I can't seem to get out of this sadness and I'm sick of blogging misery so I'm going to try to be grateful for once.
After blogging my financial woes yesterday,I just wanted to acknowledge how grateful I am to live in Australia,I am eligible for disability support pension and although it doesn't come anywhere near the wage I used to earn at least it's something.What I receive each fortnight is based on my husbands wage so I really don't get much but I do have a pensioner concession card,this means I get medication extremely cheaply and even without the concession card because of the P.B.S. (Pharmecutical Benefits Scheme) the cost would not be astronomical.   I am able to claim concessions for my council rates,electricity,phone and a couple of other things I forget,once again it's not shit loads but it does help a bit.
So if nothing else I am grateful that if I had to get this crappy disease,at least I got it in a country that makes life a tiny bit easier.
Not much but it's all I've got.