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

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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.
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Thyroid disease.. A thinky piece

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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 And Other Drugs – Movie Review

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Love and Other Drugs is one of the more surprising Rom/Coms I’ve seen in a while. For once the characters have depth and the storyline is actually romantic. We have also been spared the terrible one liners that seem to have taken over the genre of late, and for a very pleasant change …..The plot is believable..Yes Im serious it is actually believable.

 

Love And Other Drugs stars Jake Gyllenhaal as very charming and oh so devilishly handsome pharmaceutical rep Jamie. He is on the fast track with his career and uses his charm to get as far ahead as he can. But all of that changes when he meets the beautiful Maggie played by Anne Hathaway. Maggie is a free-spirited artist and almost the complete opposite to Jamie. Cue sweetness and gag worthy romance …but no not this time.This really is a great romantic film with very little of the token romance and a lot of beautiful acting.

This is of course a love story and yes it does have a lot of romantic moments but there are also a lot of heartfelt moments too. The story is that Maggie is a 26-year-old woman who has been diagnosed with stage 1 Parkinson’s disease, a tragic condition in an elderly patient, but made all the more tragic because of her age. Jamie falls in love with her knowing how sick she is and has to adjust to how life is going to be for them both if they continue their relationship.

The plot is simple, no surprises or great twists but it is the sheer simplicity of it that makes it so utterly beguiling. Anne Hathaway is at her absolute best in this role and it is easy to see why she has so many fans. She is stunningly beautiful, elegant and talented. And Jake Gyllenhaal proves his acting abilities know no limits in yet another surprising role.

The relationship sizzles on the screen and it is clear to see they enjoyed working together as their chemistry is astounding. The story line is sad and definitely one that will make even the hardest hearts melt. I cried and I laughed and my heart broke for the characters. I finished the film and I felt sad that it was over. I really enjoyed this movie so much more than I thought I would.

I like a good romantic film and im partial to a good laugh but this really is so much more than that. It is touching and sweet and just beautiful. If you havent seen Love And Other Drugs do yourself a favour and go and watch it immediately you wont be disappointed.

 

BlondiieC

xox