What it really feels like to have an autoimmune disease. The ugly truth..

Well after some indescribably wonderful responses to yesterday’s blog post I’ve decided to share a little more. To explain a little more. To hopefully enlighten those around me a little more about what I go through. To be fair I cannot complain if I’m not willing to try and help people to understand.

A normal day in my house starts off like this.. I wake up to my gorgeous daughter coming and waking me up. That’s the best bit of my day! Her little face is the motivator to drag my sick sorry self out of bed. But not before I pull her into the bed for cuddles of course.

But once she has enough its “Get UP MAMA!!!!” Try explaining to a three year old that you can’t quite get going as fast as she can because your sick. I don’t want her to be told “mama can’t baby,because she is sick, or slow down baby mama can’t go that fast” I don’t want her reality to be that her mother is sick and can’t do what “normal” mothers do. I don’t want her to grow up with a fear of her mama being sick.

She gets up and races off into the kitchen with our two dogs and our kitten to explore the fridge for whatever strange thing she has decided she wants for breakfast today. I however am sitting on the side of the bed calling out directions like “careful baby don’t touch that” or mamas coming just a sec” because I can’t jump up out of bed to chase her. It’s not because I don’t want to or because I want five more minutes sleep. I actually can’t!

My body won’t  let me, this is a newish development which is making life with a three year old HARD! When I sit up my hips and back ache like I’ve slept on a pile of bricks, my knees almost can’t bend so you can imagine trying to stand!! When I finally get to standing, my ankles and toes ache like they are broken, and don’t forget my hips and hands and shoulders, they are all stiff too!

Then I hobble and I mean hobble out to the kitchen as I can’t really walk properly for about an hour after waking, it takes that long to loosen up. I go about my morning, I make baby’s breakfast, I make coffee and I hobble to the couch where I sit flexing my sore legs till they start to loosen up and feel strong enough to stand on I get up and start my day. This takes about an hour.

About two hours after waking the exhaustion starts to take its toll, I may have had nine or ten hours sleep but it won’t be enough, its NEVER enough! I feel so tired at this point that the slightest thing gets to me. I drop something and have to bend to pick it up and I start to cry because the effort to do that is so tiring I want to go and lay down.  On a good day I can, on a good day Miss 3 is at Kindy and I’m home and can sleep if I need to or on an extra good day my partner is home and he can take care of her while I go back to bed for a while.

But most days it isn’t like that most days since before my daughter was born its a case of keep going because  if you stop you won’t start again. It’s a non stop day till she finally crashes after twelve to thirteen hours of near constant activity. In which I’ve not only done my job as a Mum, I may have also in that day gone to work, cleaned the house at least twice, I’ve made three meals two snacks and plenty of drinks. I’ve washed clothes and made beds, I’ve done food shopping and entertained a three year old. I’ve done all of that while I’ve felt like I am crushed under the weight of sickness.

The best way I can describe it is like what a normal person feels like when they have the flu. Except that’s how I feel every day! You can imagine how hard it is when I get the flu! Which thanks to having no immune system I get for months one end with no breaks. I was so sick last winter I spent three months so sick I should have been in bed. But as any mother knows that’s just not possible when you have a child.

By the time she is in bed I am so sore even sitting down hurts. My whole body aches from head to toe and I’m so tired I have difficulty breathing. My knees are so sore the pain radiates up and down my legs and my back is so sore I can’t sit or lay down without pain. I try to snatch a few quiet hours in which I do as little as possible. This is my “rest” time. I inevitably fall asleep as the moment I stop moving I’m so tired I pass out.

Then I wake up and so begins another day. Another day of exhaustion. Another day of pain, another day of missing out on being healthy, another day where I am constantly reminded that I’m not like everyone else. At thirty one I am old! I am sick! And it won’t get better, only worse. There is no miracle cure for what I have. No magic pill that makes it better.

There is only ways to manage it. And even the medicine that manages it doesn’t keep the symptoms at bay it merely stops it from getting worse. It doesn’t take away the pain or the exhaustion. It doesn’t perk me up and make me feel good. It just stops my body from making more antibodies that are attacking my thyroid.

That’s what Hashimotos is. It started out that my thyroid glad was under active. Then in an effort to fix itself my body makes antibodies, but instead of helping,the antibodies attack the thyroid and are effectively killing it. So what was once not working well is now trying to kill itself. The medicine try’s to stop that from happening. It doesn’t fix me though, it doesn’t make me feel better it just stops the rot so to speak.

I’m not writing this to complain or to make people feel sorry for me. I’m writing this to help people understand what I go through every single day. I’m medicated and its this bad. This is as good as its going to get. It’s a struggle every single waking minute of every day.

People who live with this debilitating disease feel sick all the time! They feel tired and overwhelmed every day. They feel pain that never stops. They suffer mostly in silence because people don’t understand. They don’t know how hard it is. So I’m trying to explain it. No I don’t have cancer, I don’t have aids. But I do have a disease that will never get better. I have a disease that makes every day activities that most people take for granted really difficult for me. I have a disease that makes it difficult to fall pregnant, that makes it difficult to breast feed, it makes it hard to carry a baby to term. It makes it hard to breathe, it makes it hard to exercise. It makes it hard to do the simplest things. Some days it makes it hard to live. It makes it hard to function.

Do I wish I could change it ..YES! Do I wish it wasn’t me… Yes! Do I wonder why me…yes! I wonder all those things and more. So next time you ask how I am wait for the answer because when I say I’m ok, I don’t mean I’m great I really mean I’m ok. Just ok. Because I won’t tell you everyday how I really am because I don’t have the energy to keep explaining it. So read between the lines because even on a good day I’m far from good and a good way from being great.

Advertisements

Thyroid disease.. A thinky piece

I read an article today about Cancer and the ways in which people get it wrong when talking to people with Cancer. It got me thinking…. I have a sickness, its serious, it will shorten my life, it affects my ability to conceive, my ability to breast feed, it robs me of many opportunities on a daily basis; yet no one talks about it….ever!

Its not a well  known disease, its doesn’t sound scary, it doesn’t have a lot of outward signs or symptoms. It doesn’t get a lot of coverage in the media. It doesn’t even really get acknowledged as a life affecting disease, but it is!

I wonder is this because it doesn’t sound scary? Or because it doesn’t look scary? I don’t know and honestly I don’t care, because let’s face it a disease that affects daily life in may complex and varied ways. Yet if I say I have Hashimoto’s thyroiditis the standard response from many people has been… Well at least you don’t have Cancer. What that’s my alternative? Cancer? like you’re sick but its ok because it’s not Cancer? Do you see how ignorant that sounds just reading that statement? Cos it felt very ignorant bearing the brunt of people saying it.

No I don’t have Cancer, I have an autoimmune disease, its life affecting, it may kill me and it makes the simplest daily activities difficult beyond words. But all of that is irrelevant because I don’t have Cancer? Gee thanks for the pep talk jackass!

Sorry if I sound enraged, funnily enough that’s one of the myriad symptoms of my illness. Rage, depression, extreme lethargy, shortness of breath, nervousness, intolerance to cold and heat, dry skin, hair that’s falls out in clumps so much that I worry I may have bald patches soon, joint and muscle pain, weight gain, difficulty losing weight, a puffy face, should I keep going or have you heard enough so far?

This is a disease that once you have it increases your chances of more autoimmune  diseases such as Lupus, rheumatoid arthritis, chronic fatigue syndrome, and a whole bunch of other fun illnesses too. Yet when I say I have it people blow it off because you know it’s not Cancer. Now don’t get me wrong I’m stoked I don’t have Cancer, believe me I have enough to deal with already with my health.  But the next person who diminishes my lifelong illness as less important because thank god it’s not Cancer will feel the wrath of a person with extreme rage and believe me it won’t be pleasant!

I am writing this in the hope that me person might read and think twice before diminishing someone’s experience of a really serious illness because its not only hurtful it’s thoughtless and ignorant.

Love, Loss and Red Nose Day …

This weekend just gone I read an article by Rebecca Sparrow about losing a baby and it prompted so many thoughts. How would I feel? What would I do ? How would I cope ? Who would  turn to for help ? Would life always be just a little bit grey ? Would I turn away from people who loved me or let people in ? The questions were endless but the one that stuck with me was, Where do you look when your whole world is turned upside down ?

Rebecca told her story today and it inspired me to find the answer to those questions for myself for my friends and for other women who have suffered that deep and lasting loss. No one can ever fully understand the grief that others feel, we can try but that loss is so personal, so deep and unrelenting that until you find yourself facing down that gun barrel you never know how you will feel.

We all know someone who has suffered,we have all suffered ourselves. We probably all know someone who has suffered the incredible tragedy of losing a new life. But have we really stopped and asked ourselves the questions that need to be asked ?

I think so many of us want to reach out but we don’t know how. Sometimes it’s not what we say but just being there that counts. And sometimes it’s knowing when to step back and give the much-needed space for healing. I sat here this morning watching my daughter play. She is two years old and watching her play and chat away to herself fills me with a joy that is unparalleled.

So then how is the grief of missing those moments ? The tender small snapshots of life. Not the big events but the times where you find yourself smiling at the little jokes they tell or the impromptu kisses. The firsts, the first real cuddle, the first time they smile, the first time they say I love you.

For mothers who lose babies they will never have those moments and for mothers like Rebecca, they have the heartbreak of knowing what they are missing and having to help themselves through their grief and their children.  To explain to older children why they don’t have a little brother or sister on the way or worse why their new baby brother or sister didn’t wake up today. How do you begin to explain that ? How do you find the words ? Where do you even begin ?

Many people, myself included may not realise that the SIDS foundation helps parents who have suffered this unimaginable loss. It is not just for parents who have been affected by Sudden Infant Death Syndrome but for parents who have lost children through stillbirth and miscarriage . These dedicated people have the answers that so often people can’t find. They are the professionals dedicated to helping out those who have suffered the greatest loss. The are the brave people who pioneer research to stop this unthinkable tragedy from happening.

If you don’t know what to say or what to do then check out the SIDS website, ask how you can make a difference. Give generously to this cause that helps aid in the sufferance of so many people. Or give some time. But remember that the best thing you can do is simply to say ….I care about you and im here when your ready !

For any information or fi you want to read Rebecca’s beautiful article I have posted links in the comments below. I hope everyone takes the time to read Rebecca’s story it really is powerful and so very brave !

 

BlondiieC

xox

 

 

 

There is plenty you can do and one simple one is uploading a picture to the red nose day website, for every  picture uploaded up to 15,000 Renault will donate $1 up to $15,000 dollars thats a huge donation for simply taking the time to upload a picture. I have included my pic, I have also made it my profile pic on Twitter and Facebook to help raise awareness of this very worth cause.

Danielle Crismani of Baked Relief – Interview

I recently had the pleasure of interviewing Danielle Crismani of Baked Relief fame, for those of you who have been living under a rock for the past five months Baked Relief was a charity relief effort started by Danielle Crismani during the recent Brisbane floods.

Baked Relief started with a tweet and grew exponentially with people all over Brisbane offering their support and their cooking skills. The purpose of Baked Relief was to help out the helpers. The kind-hearted people of Brisbane who gave of their time to go out and help clean up the streets and the homes of people affected by the flood damage.

Danielle was inundated with people wanting to help out and lend a hand even if it was just to make a cake or some sandwiches to feed the growing number of people volunteering all over our beautiful city. Her story inspired many people from all walks of life to get involved.

We at TLC Books held a bake sale and raised almost $700 for flood relief and the responses we got from that were truly inspirational so I was interested to hear more about Danielle’s experiences too. I hope you enjoy hearing a bit more about her story and that it inspires more people to get on board and help out in any way they can.

First off tell us a bit about yourself personally ?

I am a mum to three children. Corey 13, Addison 11 and Liana nine. I work full-time in a government-owned corporation and have reformed packet cake cooking into ‘baking from scratch’ action in the office. I love renovating timber houses. Anything relating to the country and the beach make me happy. I have an extremely supportive ex husband and a wonderful man I belong with. Life is good.

Did you grow up with a love of cooking/ baking ?

We lived with my grandmother most of my childhood and she was an amazing baker. Her cheese cakes, caramel tarts and fruit mince pies were always talked about. She would start preparing for Christmas with me during the September school holidays. Everything was made from scratch. Ironically I was never allowed to take control of the beaters. It is a constant memory of her sporting a house dress and an apron and being covered in flour.

I didn’t start really baking until about four years ago when I was gifted a Kitchenaid and a set of Nigella Lawson cookbooks. WOW! didn’t that change my life.

How did you come up with the idea for Baked Relief ?

I was stuck at home. I wanted to do something. I am no way fit enough to sandbag but thought if I baked something and took it down the local SES that would help. Little did I know how well received that little batch of lemon muffins would be. Thats how baked relief started.

It went viral within a matter of hours, were you surprised by how huge it all became ?

At the time I was amazed at how quickly it grew. But when you really think about it, there were so many people who wanted to do something, to make a difference and help someone else out. They were just looking for a way to do that. Baked Relief provided that.

Are you continuing your work with Baked Relief in different areas now that the massive clean up is almost finished from the floods ?

There has been so much more required than I could have ever imagined. Like cooks loosing all of their cookbooks, Brisbane restaurants suffering due to people staying home and not spending money on dinners out, that everyone’s kitchen goods would be lost and their love of baking could not be fulfilled. That’s where we have continued to help out. Projects just come up as we see the need by talking to families who have been affected.

What has been the most exciting or proud moment for you since that first post about Baked Relief ?

Hearing an elderly woman say, with tears in her eyes, that baked relief gave her a purpose. There have been other proud moments, but that is one I will never forget.

I’m sure working with relief efforts you would have seen some amazing things in the fall out from the Brisbane Floods what is a memory that stands out for you ?

Walking Turner Avenue in Fairfield was the most confronting image of the Brisbane flood. The mud, the smell but the hundreds of people working like busy bees cleaning, laughing and making community happen.

Who are your personal idols or heroes ?

My Grandmother who in the 1974 floods baked for Fairfield and surrounding areas during the clean up and recovery. Nigella Lawson of course is an idol. If it wasn’t for her I wouldn’t have begun baking four years ago. And very recently Premier Anna Bligh. I think she will go down in history as a woman to be admired. I have also seen some amazing work meeting women and men during this baked relief journey which have brought me to tears many times with their amazing stories of overcoming life’s challenges. Everyone has a story!

What is your dream for Baked Relief long-term ?

The long-term mission is to continue to empower people to make a difference in their own world. Random acts of kindness, paying it forward, encouraging teenagers to get involved in community. For the moment this has been through immediate and short-term support to flood affected families and communities. In the longer term it’s about creating a more philanthropic society of support.

              

             And Finally what are you working on now ?

We are working on the cookbook for cooks project where we are encouraging people to clear out their cookbook collection and donate a few books which they no longer use or need. We are assisting families by providing gift vouchers to local (often flood affected) restaurants and look at assisting families with helping to get their kitchens set back up again. We are also looking for sponsorship and support to keep this work going.

If you want to make a difference to your own life, start by making a difference to someone elses.

You CAN change the world one cupcake at a time!

A big thank you to Danielle for taking the time to answer my questions, I hope she inspires everyone who reads this as much as she has inspired me. ( all photos courtesy of ABC via Baked Relief official website)

This slideshow requires JavaScript.

Autism Awareness Day April 1st…

Today is Autism awareness day, and while im sure everyone gets tired and worn out from this day and that day and this charity event and that charity event I think that Autism is something you can shelve your boredom or disinterest for, just for a minute.

Why should you ? Because Autism affects so many people, it’s an often ignored seldom discussed illness, yet I can guarantee that on at least one occasion someone who reads this has seen a child acting up or being naughty and judged the parents and the child. Not just judged them but judged them unfairly. Does it occur to you that perhaps that mother who looks tired and stressed and is ready to tear her hair out, is not dealing with a child who is being naughty or acting up but that maybe that child has Autism ?

I know for a fact that very few people see a child misbehaving and assume illness as the cause, no most people click their tongue in disapproval, they shake their head and question why that mother isn’t doing more. As a mother I know the frustration of a tired child who is bored with being at the shops or just wants to go home, I know that look that people give you. The look that says UGH can’t you make your child behave. That is a horrible feeling. Now for a minute imagine how that feels for a mother of a child who has Autism, she is being judged and commented on but no one bothers to consider how hard her days are everyday, or how tired she is of being judged. How exhausting it is to raise a child with special needs.

Well spare a thought for her, spare a thought for the child that has difficulty negotiating social situations, A child that has trouble learning and paying attention and a child that will have to live with Autism for the rest of their life.

Autism affects 1 in 160 people in Australia there is no known cause and there is no way to cure it. But it is not just the child that suffers Autism that suffers, it’s the parents and the carers, the people who tirelessly take care of these children and do everything they can to make life easier and more enjoyable for the sufferer.

So what can YOU do to help ? Well you can learn more, educate yourself, join the national register, help raise much-needed funds for Autism awareness and research. You could attend an event to support Autism and help raise funds. Whatever you do, for one minute put yourself in the shoes of the people who suffer this debilitating illness and try for a minute to hold back your judgements and your ideas. Try to help instead of shaking your head. It doesn’t take much to get involved but imagine the difference we could make if we all gave a little ?

Its time for Australians to reach out and help each other, stop judging start helping. If you want to get involved I have included the information here to help you out. Please don’t sit back and do nothing you could change someones life!

BlondiieC

xox

http://www.autismawareness.com.au/get_involved

Feel a Boob Day..

Ok so today is national feel a boob day, yes yes boobs and touching and feeling, but not in that way. Ok so now that I have your attention, it really is National Feel a Boob day and this is a cancer awareness program so don’t giggle, listen cos this is important.

Thousands of women are diagnosed with Breast Cancer every year, 1 in 7 women will be affected in their life time so don’t waste time feeling scared or prudish. Its time to get amongst it. We don’t want to lose any more people to this horrible disease. It doesn’t take long but it could save your life.

Do you know how many cancer deaths could be prevented by doing this simple check ? Far too many ! So get involved feel your boobs for strange lumps, or bumps. Dont feel comfortable checking yourself ? Not sure what you should be checking for ? Or worried that there is something unusual there? Ok then off to your Doctor for a check up, Its only fifteen minutes out of your day but it could save your life.

But don’t just check yourself, Not hats not enough pass on this message to everyone you know. Sisters, Mothers, daughters, friends,cousins and everyone else as well. Spread the message and lest save some lives.

Oh and don’t forget about the special men in your life either they can get breast cancer too. YES MEN CAN GET IT TOO. So boys its up to you, check your girlfriends too. But please ask their permission first. Checking is not groping ok 😉

Seriously now though, cancer kills so many people a year and its a tragic waste of life. So let’s get talking about it, spread the word and get the message out there.

Ok I have to go now, I can’t tell you all to do it and not do it myself. So its off to check for me and it should be for you too so stop reading, step away from the computer and check your boobs it might be the smartest thing you will do all day !

BlondiieC

xox