Wednesday, 25 November 2009

Tuesday, 24 November 2009

Maya understands words.

Maya says 'Mum'.

Finally at 13 months Maya can say "Mum". :)

Monday, 23 November 2009

Maya stands up.

I choose to rejoice in my child's achievements.

When I announced recently that Maya had finally said 'Mum' for the very first time (something I have been waiting for since other babies seem to have mastered this word a very long time ago) a friend and fellow parent said "You will start to regret she can say Mum, when she gets old enough to whinge."

When I told someone that I cannot wait for Maya to start talking so that she can actually tell me what's wrong or what she wants, a friend and fellow parent said "You will regret when she starts talking because she will then talk back to you."

And a few people I've mentioned to that I am looking forward to Maya learning to walk have told me "Oh but then you'll have to run after her all day". I also got this same comment when Maya learnt to crawl for this first time.

Seriously what's up with the negative replies? And I can't believe that some of these comments are from parents.

First of all, every stage is going to have positives and negatives. Every stage! I know that but I would like to focus on the positives.

Yeah sure when Maya was a newborn she lay still and I didn't have to run after her, she slept longer hours and she didn't talk back to me. But I don't miss the newborn stage AT ALL. I don't miss the utter lack of sleep, being woken several times at night, all the crying that newborns do and constantly trying to guess what was wrong. I was happy when Maya started sleeping more at night and when she was able to sit and then crawl. She was then able to occupy herself more and was much happier.

I also love that Maya can express herself a bit more through pointing and grunting. I don't always understand what she wants but sometimes I do get it right. Which is why I do actually want my little girl to talk one day so she can tell me when her tummy is sore or say "Mum I want some milk", rather than me guessing all the time. Sure I probably won't enjoy hearing "Mum you're a poopy head" but I reckon it's better than the tears or screams of frustration as she desperately tries to communicate her wants and needs. And how about the heart-warming words of "I love you Mum". I reckon they'll be pretty special words to hear.

I also want to see her walking. At the moment Maya loves walking and it's all she wants to do all day. However, she cannot walk on her own. She needs someone to hold her hands. And who's the person who spends most of their time with Maya. Yes me. So I spend a lot of time bent over helping her to walk, which leads to a sore back. I can't wait for her to walk on her own so that I can save my back.

Secondly, I am a parent who actually wants to see her child succeed and develop. Yes sure, as I already said, each stage brings negative things but she needs to go through each stage in order to progress and develop. She needs to learn to talk. She needs to learn to walk. And I choose to rejoice in her achievements and deal with the new challenges they bring.

Sunday, 15 November 2009

My new diet.

To help combat Meniere's Disease I am now on a strict no caffeine, no alcohol and low salt diet. The no caffeine includes no chocolate but I just cannot stick to that one. As for the low salt I am sure it probably doesn't sound that bad does it? Just gotta avoid chips and don't add salt to your food. I wish. No I now have to read every label of everything very carefully to make sure it meets the low salt standard of 120mg or less per 100g. So what does that rule out:
  • Bread and bread products like rolls, buns, muffins, crumpets, piklets, apple scrolls, etc (Bread is actually very high in salt. Lucky for me there are a couple of companies that do make a low salt bread alternative, however only one of them is edible and for a while they stopped making it altogether because not enough people wanted low salt bread. That still rules out being able to have rolls, buns, apple scrolls, etc);

  • Breakfast cereals (Most breakfast cereals are high in salt. There are a couple of low salt alternatives.);

  • Cheese!! (Cheese is extremely high in salt. Yes, all cheese.);

  • Asian cooking sauces like soya sauce, oyster sauce, etc;

  • Cakes (Self raising flour is very high in salt - so anything with self raising flour is out);

  • Convenient cooking sauces like pasta sauce (Everything now has to be made from scratch); and

  • What I miss most of all... take away & restaurant food! (I have thought of ONE take away possible - fish and chips because it is cooked from scratch and you can ask for no salt to be added. However, I cannot think of a single other possibility. I really miss having take away food as an option. It means no time out from cooking. If anyone can think of any other take away or restaurant options I'd love to hear them.)
Plus of course many other manufactured foods are high in salt while fresh foods like fruit and vegetables are low in salt. So my diet is much healthier than it even has been - eating plenty of fresh fruit and veges and making food from scratch with fresh, natural ingredients. Plus best of all.. it doesn't rule out one of my favourite foods - ice cream!

The truth is most people's diets are way too high in salt. High salt can lead to high blood pressure, heart disease and other health related problems. Sticking to a low salt diet seems to prevent the vertigo from Meniere's Disease from occurring for the majority of suffers. Doctors believe the reason is that Meniere's Disease is caused by fluid retention in the inner ear and high salt in a diet leads to fluid retention.

I don't really care why sticking to my diet stops the vertigo. If it works it's worth sticking with in my opinion. It's just a tricky diet to get used to. Salt is in nearly everything we eat. Even low salt alternatives are generally too high in salt. The low salt diet isn't catered to by manufacturers. So until they do I guess I'll be cooking from scratch - but health wise that's not a bad thing.

Friday, 13 November 2009

Basic needs.

The other thing about being chronically ill is that you realise not only just how important good health is but also how unimportant a lot of things in life are. Suddenly things I used to worry and stress about seem like such a waste of time.

As long as you have your health plus some basic needs like food, water, shelter, family and friends met, then what else matters. What does it matter if you are bigger than you'd like to be, smaller than you'd like to be, have a giant pimple on your nose, had a bad day at work, didn't get the job you wanted, scratched the car, can't afford the TV you want, etc etc.

Of course it's easier said than done and once basic needs are met people create new needs and wants and then feel bad when they are not met. Again I'm sure once time has passed after a long run of good health I may forget to appreciate the simple things in life and once again create new needs and wants. But I'd like to think maybe this disease has changed my perspective on life and that all that really matters is that me, my family and friends are all healthy and that we can afford our food, water and shelter.

Thursday, 12 November 2009

Thanks for the well.

One thing about being so chronically ill is that I really notice and appreciate the periods I feel well. Health is something people (including me normally) take for granted but in reality it is such a gift. We never know when poor health will strike. Did you appreciate or notice the fact that you felt well today?

Of course as soon as I have a good run of good health I will probably go back to not noticing that I am well, but I really hope it is something I continue to notice and appreciate.

Friday, 6 November 2009

Please donate to the Meniere's Research Fund.

Meniere's Disease has no known cause and no known cure. It is a debilitating, cruel disease consisting of:
  • Periodic episodes of vertigo (that are severe, incapacitating, and unpredictable)
  • Hearing loss
  • Tinnitus (constant ringing in the ear/s)
  • A sensation of fullness or pressure in the ear
Meniere's Disease also permanently damages the balance mechanism of the inner ear, making people feel like they are moving even when they are completely still.

There is no treatment that works for everyone with Meniere's Disease. People are either able to manage it or they are not.

There is research currently taking place via The Medical Foundation at the University of Sydney (called the Meniere's Research Fund) to finally find the cause and then hopefully find the cure.

Please consider a donation to this cause. Any amount helps and donations over $2 are tax deductible.

To Donate

(PLEASE NOTE: you need to specify that the donation is for the Meniere's Research Fund to ensure that the money goes to this cause):
  1. ONLINE - Go to: https://www.alumniandfriends. asp Then in the Donation Information section under Purpose select "The Medical Foundation" and then add "Meniere's Research Fund" in the "Other details" box below and this will ensure it gets to the Meniere's Research Fund.

  2. PHONE - (02) 9351 7315 Please note that you need to specify that the donation is for the Meniere's Research Fund to ensure it gets to that fund.

  3. MAIL - Print out this form http://www. nswmsg/donation.htm , fill it in and post it in.

Sunday, 1 November 2009

Ménière's Disease - Get me off this ride!

Seven years ago my left ear 'blocked' and I couldn't hear anything out of it. It drove me crazy. I went from GP to GP to GP and kept getting told that it was a virus and would go away. I was prescribed medications to relieve mucous congestion in my nasal and ear passages. Nothing worked.

Then one night, three months after my ear had blocked, I suddenly felt very 'odd'. Something was wrong. I felt like any slight movements made by me were magnified. I made it to the couch and then it happened - my world started spinning out of control. Like being on a fast roller-coaster ride stuck on a downwards path. I couldn't get off. I couldn't stop it. I couldn't speak. I couldn't move - any tiny movement, like moving my head 1cm, felt much, much bigger as though my head were actually doing a 360 degree spin on it's axis. Then the relentless vomiting started. No breaks. Vomit. Vomit. Vomit. I was in hell. How do I stop this ride?? Get me off!

Hours later a doctor arrived. An injection given to stop the spinning and vomiting and after half an hour I fell into a very deep sleep. I was wrecked for days afterwards.

Doctors then told me that I must have labryithtitis (virus in my ear). Seriously?? For three months!! Finally I saw a specialist and after some tests I was finally diagnosed with something that fit - Ménière's Disease. I was told - nothing you can do about that, no cure, no solution, no help. "Good luck with that".

I started a drug that does help some people, changed my diet and saw an osteopath and my ear finally drained after being blocked for 7 months. I could hear again!! I kept my diet for a long time, kept with the medication and my ear was fine. I was fine. Maybe I could beat this after all? I lived a full life again. Travel, work, slowly went off my diet and enjoyed a full life thinking I was fine.

Then towards the end of pregnancy last year my ear blocked again! A couple of times I woke spinning and had to call Greg home. I was scared about being on my own with our child in my belly - unable to eat, get up, do anything. Thankfully they weren't too bad and didn't last long. After Maya was born I had another couple of vertigo attacks. Again thankfully they weren't too bad and didn't last too long. Mostly I was OK. I felt fine - except for being unable to hear properly! I saw a specialist again and was told I couldn't take any drugs while breast feeding. Breast feeding Maya was so important to me. I was fine. I could manage. I would feed until she was 12 months and then start my medications again.

When Maya was 10 1/2 months old I drove home from mother's group, parked the car, got out, started walking around to get Maya out and realised something was very wrong. I couldn't walk. I was spinning. I collapsed. My phone was in the car. My BABY was in the car. My BABY was now crying in the car. I couldn't get up. I couldn't comfort her. Not only was I stuck back on that horrible roller-coaster ride from hell but my heart bled for my baby girl for whom I could do nothing for. Luckily my neighbours heard my cries for help and called Greg and the paramedics.

Since then I have my vertigo attacks pretty much weekly. Sometimes twice in the same day. Sometimes two to three times a week. That last for an hour or so each. That leave me exhausted and sick for the rest of that day and sometimes feeling unwell for another day or two. And that come without any warning. One minute I feel OK. The next I am collapsed on the ground in a world of spin.

I can no longer look after Maya with the same confidence I once had. I can no longer go outside the house on my own. How can I when I have no idea when an attack will strike? What happens if I have an attack while holding her? What happens if we are out on a walk together? I certainly cannot drive anywhere for fear of having an attack in the car and crashing. And some days I am too ill to look after her.

My mother comes over practically every day now. Some days to look after Maya. Some days because I am scared of being on my own with Maya now. Greg also takes days off to look after me and Maya and to drive me to all kinds of appointments. So far nothing is working and I have no idea if/when it ever will get better. I am doing all the same things as I did 7 years ago, that worked back then, but right now there is no change in my condition. So how do I beat this disease this time? I have no idea. My disease has progressed now and it is much worse than it was before. It is a disease I realise that will be with me for life - sometimes in remission, sometimes in action.

Vertigo is such a debilitating, humiliating, vulnerable, uncontrollable, awful position to be in - unable to walk, talk, move and stuck on a ride I cannot get off of for an hour or more. And I cannot stop the attacks from happening. I have no idea what life now has in store for me. Can I go back to work next year as planned? Will I ever be able to have another child? Will I be able to have a normal life again? Will I ever get better? Will my life keep coming back here over and over again?

I have to hope that things will get better and hopefully they will get better soon. But understandly this is an extremely difficult time for me frought with worries, suffering and feeling like I am less than I was. I want to be the active person I was before. I want to be able to leave the house without freaking out that I might start spinning. I want to be able to go to work again. I want to be active in Maya's life - walks, outings, play. I don't want to be a burden on people. I want my life back.

Get me off this ride!

Influences - Part Deux

Further to my thoughts on influences (previous post) - I've been wondering how much does ones own upbringing influence ones own parenting? And if a same sex parent has a greater influence on their same sex child/ren then ones own relationship with their same sex parent may have a greater influence on their parenting?

What I mean is has my upbringing and relationship with my mother had a greater impact on my mothering relationship with my child than my relationship with my father?

Of course people will see both "good" and "bad" parts of any relationships and try to emulate the "good" and change the "bad".

I'm sure there is a whole part of psychology I could go and read about all of this. If only I had the time.