Processing Me

Today I don't feel like doing anything. I just want to lay in my bed - if only these were the words from a pop song titled the Lazy song. It describes my life down to a tee right now.

There is so much going on in my head. I am slowly chipping away at all the information I am finding about Fibromyalgia. I am trying to come to terms with a "label" and find how it can help me.

I have found some really good support groups on Facebook:
Fibromyalgia Support Australia
Fibromyalgia Network {which is a world wide support network}
Hunter Region Fibromyalgia Support Network {NSW Australia}
Hunter Fibromyalgia Support Group {A closed group so that what you share here isn't shared with the rest of your facebook network. Giving you some privacy}

 These networks have proved invaluable over the last few days.  It has given me a place to ask questions, to vent, to listen, to provide others with support and mostly to not feel alone. The biggest thing in the last twelve months is I have felt like I have suffered with a silent and invisible illness. At times I have felt like I am losing my mind because the doctors couldn't find anything on tests, yet I just could not get better. I tried to get over it, I tried to get out more, to be happier, to run at life BUT all I got was sicker. I got good at hiding it from everyone but slowly I have disappeared more and more.

I know I have a great bunch of friends and family who are ever understanding and willing to help but it is hard to "get" what is going on. I'm sure there are days when they have all thought can't she just get over it and get on with it already! I myself have been one of those people thinking it. Unless you see the daily ups and downs of this disease and the how it smashes you around it really is hard to understand. I am good at putting on a brave face when I have to leave the comfort of my fort {our house} but within these four walls lately I have built a place where I fall apart and crumble. A place where I am no longer strong and the one with the answers. A place where I don't know who I am??

It is a relief to discover other people going through similar circumstances. There is nothing like reading someone else's story and thinking 'that is me' and suddenly not feeling so alien. Or hearing someone else share their story of hardship and thinking 'you know what? Today I had a pretty good day, I should be thankful.' It really helps to put things in perspective. [Which is something I haven't had a lot of lately.]

I have realised lately I have become really selfish and self centred  and I really dislike it a lot. It usually isn't until I leave somewhere and realise that I didn't help clean up, or I didn't do anything but talk about myself. I miss out on finding out how my friends are because I am so centred on me. I really really DISLIKE it. I do it with my friends, my kids and my husband..... I was not this person! Where have I gone??

I have also found great resources which validate all the things I am feeling and symptoms I have. Like this Ridiculously Long List of Fibro Symptoms - Take a look it might give you some idea about the "invisible and unrecognised" disease I now have the pleasure of knowing.

So for today - Today I swear I'm not doing anything, nothing at all.....

{suddenly this feels like AA}

On Wednesday I finally got to see a neurologist and finally got some of the answers I have been looking for. So now I have a firm diagnosis, something to define what is happening in my life. I'm not stumbling in the dark or wondering about the what ifs. It is something that can't be cured but it can be "managed". For now I am thankful that it wasn't something else, something degenerative. But it is still hard to come to terms with. Life, as I knew it, will never be that way again. And I think this is the part I am finding the hardest to deal with. It isn't just a broken bone that is going to heal, or an infection that is going to clear. I have a chronic disorder {is that even what they labelled it?} called fibromyalgia

I do a pretty good job at keeping it together, or at least making it look like it. But the truth is I don't have it all together and I'm not coping. My house would be the first tell tale sign for anyone who knows me well. Lately it has been strewn with dirty clothes and dishes, toys all over the floor, clutter all over the benches. Don't even ask me when I last time I moped my floors or scrubed my bathroom.

Yes this is me. Queen of clean and everything in it's place.
No I haven't gone to some intense therapy or finally given into the "it'll wait", "don't stress too much", "everything can't always be perfect" slogans.
My life has literally gone beyond my breaking point.

I can't tell you the last time I read my kids a bedtime story or didn't get angry and yell at them for asking me to tuck them in bed. I haven't met my kids teachers and we just broke for term one holidays today - I have had eleven weeks! serious soaking in the guilt of bad mothering.
Everyday I feel I fail them more.
I don't know how to react when I see their behaviour because I'm not well again or I haven't made it to something for school - yet again.
I don't know what to say when they yell and cry at me for always being sick and never taking them to do things anymore or having their friends over to play.
It breaks my heart to know I am not the Mummy I was.

So what has stopped me from all these things?
Have I suddenly done a reverse flip and learned to be the opposite of everything I ever was?
Because some days that's exactly how it feels.
 I don't know what happened to the woman who enjoyed life, looked forward to doing things with her kids, was proud of her house, spent every spare minute baking, sewing, crocheting or some other craft. What happened to the lady to looked forward to seeing her friends, couldn't wait to pick up a new book to read or see a movie? Where is the drive that taught me to write with both hands just to retain study information or my passion for music?
{yes I have pretending to try and still do all these things over the last few months to keep up appearances but it just ends in tears with me feeling exhausted and inadequate}

Instead I have been swapped for someone I don't even recognise. Someone in unbearable pain - constant headaches and migraines, burning and aching muscles, tingling and numb limbs, chronic fatigue, irritable bowel, a dairy intolerance, disrupted sleep, multiple chemical sensitivity. And those are just some the physical symptoms.

Then there is the days I can't think straight, or decipher words spoken to me. When I can't get words out because I stutter or jumble them up or can't find the word at all. When I can't concentrate to read, drive, have a conversation or even watch tv. Or when I am so emotional, angry, grumpy, sad, anxious, and the most common of my symptoms vacant.
Brain fog they like to call most of this except unlike fog it isn't just there for an hour or so in the morning before it clears {It can last hours, to days, to weeks - jumping between various symptoms or stuck on one}.

I'm sure there are only two people who see me at my worst. I know I have sometimes let friends in on a little but I never fully let my guard down. But for most people they wouldn't know any of this existed.
When I go out I suck it up and I pull it together the best I can. I hide behind dark glasses and sarcastic comments, when all else fails. When life is even to unbearable to pretend for those few hour I hide.
I stay home and I hibernate.
I shut myself out and I avoid at all costs.
Never letting anyone see the reality of this world I am in.

But the reality is it is getting too big for me to expect just one or two people to carry the load of. I see the worry and the wear on their faces and know I need more help. So this is just step one. Admitting I have a problem and I need some help and I am not okay anymore  - even though tomorrow I will still smile and still pretend to be. This is now my life not able to be cured but somehow needing to be managed.
{(without caffeine) which when you already feel extremely tired and crap and it has been the only thing to get you through the last few months it is a hard thing to hear}

the BIG whinge

They say the grass always looks greener on the other side. Currently we have lush green grass, due to an unusual amount of summer rain, but that is about where it stops.....
Life is daunting and uncertain.
I carry the weight of it all and it all compounds in my head at 3am when I am tossing and turning.
It suddenly hits me in the quiet moments when the kids are at school and Squeak and I are cuddled up on the couch watching a movie together.
The reality is in my head as I pay another medical bill, cancel a specialist appointment or as I try to avoid going to buy more medication that we can't afford right now.

As much as I love being a stay at home Mum this world we now live in makes it very hard for this to be possible. I know that I have been lucky enough to have this privilege for longer than a lot of other people now days. Reality is that we need an extra income now as I just can't see another way through. And in this lies a problem of its own - childcare. I didn't have children for someone else to raise them or look after them while I pursued dreams of my own. But now it isn't even about that, it is to the point where me working is about the only way to add that extra few dollars that is continually required; for school, living costs, groceries, petrol, insurances. Don't even start to talk about savings toward buying our own house or going on some luxury holiday - in my mind there is no chance. Or the fact that I have lost 16kg and a new wardrobe is nothing but a fairytale I dream.

Yes we could look at reducing our living costs as rent here is exorbitant due to the market demand but once we move other sacrifices come into play. The children would have to look at moving from an amazing school where they have made awesome friends. BUT Driving them back to school would defeat the purpose of moving to reduce costs.
We are at the advantage in our current property to rear our own animals for meat and to grow our produce - which in the long run will benefit both our pockets and health. The ability to know what is chemically in our food is necessary for my health. Unfortunately getting a garden establish requires time and MONEY. Long term benefits and gain YES! but short term it is just unachievable right now.

Jobs aren't something that is abounding for a mother of three with no skill or qualification. I know this is something I am going to face when ever I choose to take that step towards the working world and it is scary as hell. My health is also another concern as we still are no better off in answers as to why I get debilitating migraines, torturous nerve pain, weakness in my limbs, brain dysfunctions, creeping numbness with pins and needles and so much more.
Medication and maintaining a healthy lifestyle is what is helping me to even function in life {I am currently on day five of a migraine that has finally won putting me in hospital for stronger medication BUT which made me chronically ill due to a reaction I had to it}
It worries me to think of putting more stress on my body than it can cope with. We are currently awaiting specialist appointments but these again are just another financial strain.

I have become a Tupperware demonstrator in the hope to fill in a few of the money gaps but unless I get the demonstrations and only when they are of a certain amount in sales is there any benefit and gain. I am now imagining myself working at McDonalds or Hungry Jacks as it is about all there is available for someone of my skill. But whats the point in the extra $100 in our pockets for the stress?

I wish I was going to Ruawai this weekend to spend time with my family for my grandparents 60th wedding anniversary but I. just. can't. and its another one of those moments where you have to live with the choice of being in another country. In moments like this I feel the heartache of our decision to be here and when things are tough financially and in health I sometimes wonder if it is all worth it.

We moved here because we wanted a better life for our children and while Corey and I suffer the pain of being here the kids are doing really well. They love school and their friends. They are achieving above standard in their learning and sport. But would they do that anywhere? I question myself everyday.....
We know that we moved because we didn't realistically have a chance of bettering ourselves in NZ. Here I know we do. We didn't have parents who took our kids so that we could have time together or time out, so here it isn't much different. We had great friends who we relied on, and I miss many of them daily, but we are developing and growing strong friendships here.
Our biggest support was seven hours away - they are now roughly the same amount of time with a plane ride too. We have the landline phone now to keep in contact with everyone but still it barely rings. People are quick to say they wish they could help but the reality is there was a chance to and they never did so we aren't missing much.

Yes life is hard but I suck it up and I get on with it. Most people would have no idea because we aren't the kind of people to moan and groan. We try our best to fix our problems and find our own solutions without relying on other people.  Yes this is a BIG whinge but we are going to sort it the best we know how. Stumbling our way through and feeling that great sense of achievement when we know we got there by ourselves. I just needed to get it out of my head that is already exploding beyond my control.

Frustrated - Not the normal hearts and flowers post

• I am frustrated at the medical profession and their lack of empathy.
• I am frustrated at the heat.
• I am frustrated that I can't explain to anyone what I am going through.
• I am frustrated that I am unable to keep my house the way I like it to be.
• I am frustrated that all the tests come back "normal" when the quality of my life is anything but.
• I am frustrated that I can't just up and run away.
• I am frustrated that family is so far away.
• I am frustrated with the flies and not being able to use a Robo-can this year.
• I am frustrated with the cost of medications that seem to be a band-aid to problems not addressing why the symptoms are there.
• I am frustrated I am losing touch with my children.
• I am frustrated that I am changing.
• I am frustrated that people choose not to see or help.
• I am frustrated that the smallest task leaves me incredibly tired and fatigued.
• I am frustrated that I am trying and yet it seems worthless at this time.
• I am frustrated that I can't fix it, just get over it or suck it up {all of which I was good at}.
• I am frustrated we live so far from services and the toll it take to get places, physically and financially.
• I am frustrated enough I have to get this out, instead of keeping it to myself, which I have been doing and making no sense of things.
• I am frustrated that my body doesn't feel like it listens to me anymore.
• I am frustrated at all this illness {even though no one can or will name it} has taken from me.
• I am frustrated and scared and struggling my way through this.

I know this is usually the place where you might find the beauty and sparkles of everyday life. But my reality lately is all of the above. I haven't known how to approach it and haven't known how to write without mixing the two worlds. The truth is I need somewhere to write and get these things off my chest and if you choose not to accept this part of MY blog. Please just kindly skip this post and look next to time to check if there are rainbows and butterflies again.

Somehow life does go on in the midst of our darkness and we have to try and make sense of it before it drives us crazy. We don't have the support networks and help we could have if we lived in NZ, but the reality is we couldn't afford to live there with three young children. We are doing what we can to get on our feet here in Australia and unfortunately money does play a role in all of that.

The roads that we are heading down for help for my health is extremely costly for one. We are also blessed to have found a G.P who is doing all he can to point us in the right path for help - but he is only one man. We need more help than just him.

For now I have one word and that is frustrated. It covers so much of what I am feeling and thinking. If you don't like it, that is fine, you don't have to. I am the one who lives with the reality of this everyday and if I want to be frustrated by it, I think I have earned the right.

A pink cake for Miss Emily

Thursday was Miss Em's birthday and I believe you can't have a birthday without a cake. As Em and Mr M are new to our little town, like us, they too don't have the usual special people to spend days like birthdays with.  

SO....
I had a plan. A lovely BBQ dinner and a PINK (Em's favourite colour) birthday cake for dessert.

BUT .....
The BBQ was a little delayed to throw a spanner in the works, literally, thanks to the mechanic husband having to work late. Our house also has very poor air conditioning and I'm sure we managed to cook poor Mr M's brains while he had children climbing all over him and trying to entertaining him, as he was a man down; thanks to the stuck-at-work husband. Mr M ended up with a headache and looking rather pale.
In comes said delayed husband to save the BBQ day and Mr M from the crazed children who wanted to play with him like a new Christmas toy!!!

On to the BEST PARTS Miss Em came prepared with Plum pudding made by her super talented Nana. It was amazing! And custard.....
And THEN.....
The pink cake. I had a few helpers with the cake.

It is a Marble cake recipe by Women's Weekly {with a few extra special touches I have added}.

250g Butter, softened
1 teaspoon vanilla extract
1 1/4 cups (275g) caster sugar
3 eggs
21/4 cups (335g) self-raising flour
3/4 cup (180ml) milk
pink food colouring
2 tablespoons cocoa powder
2 tablespoons milk, extra

BUTTER FROSTING
90g butter, softened
1 cup (160g) icing sugar
1 tablespoon milk

1. Preheat oven to 180oC/160oC fan-assisted. Grease and line deep 22cm-round cake tin.
2. Beat butter, extract and sugar in medium bowl with electric mixer until light and fluffy. Beat in eggs, one at a time. Stir in sifted flour and milk, in two batches.
3. Divide mixture among three bowls; tint one mixture pink. Blend cocoa and extra milk in cup; stir into second mixture.
4. Drop alternate spoonfuls of mixture into tin.

     5. Pull skewer backwards and forwards through cake mixture {I used a toothpick...}

   
     6. Bake the cake about 1 hour. Stand in tine 5 minute; turn top-side up, onto wire rack to cool
     7. Top with frosting once completely cool.
Butter Frosting
Beat butter in small bowl with electric beaters until light and fluffy; beat in sifted icing sugar and milk, in two batches. Tint pink with colouring.

Jess Tips:
1. Omit vanilla extract and add coconut essence to the WHITE bowl and Strawberry essence + pink food colouring to the PINK bowl.
2. When making the icing put all ingredients in bowl together and beat until light and fluffy BUT also add strawberry essence.

NB: Cake can be stored for two days at room temp, in air tight container {if you can resist this long...} or frozen for two months.

Cake was enjoyed by all with two sets of candle lighting so that Jaybug and Squeak could both assist Miss Emily in blowing out the candles. Of which the only candle in the house was a great big number 5. 

HAPPY 5th BIRTHDAY EM!!!

Thanks for sharing your special day with us Emily xxxx

Thirteen things.... for 2013

1. Read a book a month - starting with something I wouldn't usually read {Bear Grylls - Mud, Sweat and Tears. }
2. Keep up-to-date with Project Life and post here {can't wait to start reading all the first posts in the coming week/s}.
3. Craft more, get a regular craft day.
4. Buy a new computer where the 'Y' key works - without me pressing it 20 times on average to get one Y!
5. Visit my family in Perth and explore the other side.
6. Reach my goal weight and maintain it.
7. Buy a DSLR {Canon 600D I am eye is on you}
8. Bake my way through a cookbook - I am thinking maybe Little Squares and Slices?
9. Take a girls weekend away - good food, company and shopping!
10. Do a fun run and enjoy it and run the whole thing.
11. Have a regular market stall for my crafty.
12. Complete the quilt for Jaybug and Squeak, that the fabric arrived for in December. {Of course I will blog}
13. My Blog - Every year, every month, every day, I think about how to make this space more like me. So I will be embracing my blog. Making a few changes. Finding ways to say the things I have been to scared to say here. Post more. Live more. Enjoy more. Capture more.

Stupid smart sheep

So I've been told sheep are smart. Well I'm just not sure whether they are so stupid that they have us fooled they are smart or so smart they have us believing they are stupid??
 
So it 37 {friggin pants on fire} degrees outside and the three Dorper {breed of sheep} musketeers decide to go on a farm side adventure. They duck under a few fences, visit a few well known tree lines for some shade, stop by the cows for a chinwag. - this all takes place over the course of a few hours just to mess with my day.
THEN they spot it! 
The green grass just the other side of the fence. 
Right next to.... 
The road side.

Great

Bloody

Great

Now I actually have to intervene.

So here's the problem:

1. I'm already 200m behind the three sheep.
2. The paddock they need to return to is where they are clearly going to be hijacking it from once they catch sight of me.
3. Another 200m down the road and there is a school (public embarrassment or help, not sure which?).
4. The road also splits into a fork.
5. I'm wearing gumboots, so can't run in these...
6. Frig squeak is at home with no idea I've bailed outside and taken off down the road (surely farmers do this kind of thing all the time right???)

So anyway long story short we stare it off. The leader makes a dash for it and takes the other two. Then stops giving me a false hope that we might come to some agreement over this little misunderstanding.
I take off my boots, realise the road will scorch my feet, so put my boots back on. the Dorpers {or DORKers as they are known by in our household} hear kids at the school and are distracted enough for me to get just past them enough to shoo them back up the road towards the house. 

The little buggers then speedily gap it under the fence and back into their own paddock like they have been there all along. Seriously.mad.right.now.and.hot.and.mad.

By the time I arrive back, dripping in sweat, they are happily drinking from their trough and I scowl
"don't worry boys it's gonna be much cooler where I have planned for ya".

Bloody sheep! If I didn't have the right to feel yuck with a migraine already I can tell you it's a double O for awesome now!