How did you get sick?

Hello my loves,

I have been posting a lot in the Bridget's Birthday Wish Facebook Event  to raise awareness of chronic illnesses and to share my story. Originally the event was a way of me celebrating my 30th birthday in a meaningful way, but I soon learned it was an opportunity for so much more. It's inspired me to share more of myself and my daily struggles. I realised I'd hidden myself away on social media and wasn't sharing my life anymore in fear of people labelling me as "negative" and looking for pity. The event has re-ignited my passion for spreading awareness of how debilitating these chronic, invisible illnesses are, helping those who are newly sick to navigate their new world and helping families and friends learn how to best support their sick loved one. 

A few days ago Kathryn asked: 

"You said that 10, even 5 years ago, you would not have expected your life to be like this. Would you mind sharing a brief timeline, when things started to go wrong, when they got really bad, when you realised this might not be going away any time soon, and how you felt at all these stages?" 

Originally I had written over four pages of my story answering this question. I realised by page four that no one is going to read a blog post that long, and I hadn't even gotten to the part where I was struck down by my illnesses in 2012. I've decided to continue writing my story out in the hopes of maybe one day turning it into a book. But for now let me try and answer Kathryn's question without rambling on. 

I think I've always been sick but I've only realised that in the last few years . I truly believe it's in my genes. I never felt like a normal kid, and I certainly wasn't a normal teenager. At the age of 8 my teacher told my Mum concerns as I would always need to lay down after lunch. At the age of 15 I was suffering exhaustion and it was put down to my insulin resistance diagnosis. I barely went to school because simply getting ready for the day wiped me out. I will always remember this one day in particular that I had gotten ready for school and ended up laying on the floor being exhausted and wondering how the heck I could climb the mountain of completing a full day of school. Mum took one look at me and told me to go back to bed. Thats not a normal thing. A fifteen year old shouldn't be THAT tired. Looking back on it now I believe that maybe my fifteen year old self was suffering from a flare of M.E. and maybe my eight year old self was also having a flare. 

From the ages of 20-25 I had a pretty decent time. I was still coming home and resting after work like I mentioned, but my newly found confidence from losing weight from my lapband was a natural high I was living off. In 2011 I took myself over to Europe for a 6 week holiday and managed pretty well with the crazy busy schedule. But I can say that as soon as I came back from that trip my entire life changed. I got back from Europe realising there was more to life. I quit my job to focus on my teaching degree and started tutoring children for experience in teaching older kids. I bought a new car, a new laptop and had a new relationship. I still have those first two, but the last one not so much! I rounded out 2011 feeling free and independent. 

Then 2012 hit. THE year. The year I will never forget. The year that changed my life and me to the core. 

A lot of personal emotional stuff happened during that year. I don't want to dive down that well in this post, but if I go ahead with sharing my full story later I will go back to that year and the hurt and betrayal I experienced. I do strongly believe that the emotional turmoil of 2012 highly contributed to me getting sick. It shattered me and caused a lot of trauma. 

Physically it was bad also. My Lapband had slipped, causing me to aspirate onto my lungs. It took months for someone to finally diagnose that I had double cystic pneumonia- and it was bad. I spent months recovering at home, with nurses at my house pumping me full of I.V. antibiotics. The first five months of 2012 I spent with pneumonia and it had left me really drained. But it didn't end there. In the July I had my Lapband out. It had almost cost me my life and I was glad to get rid of it. The Lapband really screws up your metabolism so I knew that if I had my Lapband out I'd gain all the weight back. So in the September I had a gastric sleeve done. I'm going to do a seperate post on all of the weight loss surgery drama, but long story short instead of losing loads of weight after the sleeve, I gained. Turns out taking part of your stomach out REALLY wrecks your body. 

So by the end of 2012 I'd had emotional trauma, physical trauma and two surgeries. And thats only where the chronic illness journey began. At the end of 2012/beginning of 2013 my body just gave up. I spent two weeks in bed unable to do anything. It was then that my life changed, even though I didn't realise it. I brushed it off for months, stupidly thinking it was just bad sinus  (causing the headaches and fatigue) until about March 201. Mum and I will always remember the moment I said: "Mum, does sinus make your body ache?". With that began the journey of tests, diagnosis and finally answers as to why my body had overnight stopped functioning the way to used too. My doctor (he wasn't my doctor until after I was chronically ill) believes that the combination of everything in 2012 contributed to me getting chronically sick- especially as there are studies to link bacterial viruses to M.E. I truly think my body just couldn't handle anything else and my body broke. It was too stressed physically and emotionally and it couldn't handle it all. 

I'm not sure if there was a moment I knew that things weren't ever going to be the same again. There was no dramatic moment, middle of the night realisation or crying episode. For me, the first 2-3 years were a haze that I don't remember much of. I accepted my new fate better then most people would've, and now I truly think that being chronically ill was something I knew I was all my life, and when I was finally diagnosed my life made a little more sense. 

2017 has been a hard one for me so far. I'm turning 30 in August and I think for the first time since 2012 I've really focused on what I've lost. Maybe it has taken all this time for me to realise this isn't going away, that my life will always be different than I expected it to be.  I've learnt this year that its ok to be sad and to recognise that this sucks. IT SUCKS. But the key is to move past that and create a life within the boundaries of my chronic illnesses. 

I'm sure Kathryn didn't expect my long winded answer, but without her realising it she gave me the drive to write again. I'm looking forward to sharing myself more. To not let the comments get to me, and to hopefully raise awareness of chronic, invisible illnesses and help those living their lives with them. 

Gentle hugs, 
Bridget 

Want to help me celebrate my 30th birthday? Come and join in the fun! Click the link below: 

Bridget's Birthday Wish 

Bridget's Birthday Wish

On August 3rd I am turning 30. If you'd have asked me 10 years ago, or even 5 I would've expected my life to look a heck of a lot different. See by society's standards at 30 I should have some sort of successful career, maybe married and a child or two. Instead, I'm housebound, unable to work and suffering several chronic illnesses including Fibromyalgia, CFS/ME, Chronic Regional Pain Syndrome and chronic back issues including a Grade 2 Spondylothesis. These conditions leave me in pain from the moment I wake, to the moment I sleep. I spend my days trying to do basic tasks at home, having to rest after simply taking a shower. I also suffer from extreme fatigue so some days getting out of bed is like climbing a mountain. 


I definitely didn't expect my life to turn out like this.

So where does my birthday fit into this?
We all like to celebrate birthdays, especially the milestone ones, in a special way. Normally you'd probably throw a party with friends and family. Unfortunately that's not something I can do with my health, and none of my friends live near me. I still wanted to celebrate the day in some way and that's where the idea of having my friends and friends of friends send me birthday cards began. I figured spending my birthday opening cards filled with birthday wishes would take what could be a melancholic day into a day of smiles and love.

Why am I creating my own event? Why isn't someone doing it for me? Well my friends are also sick, and I didn't want them to have to do this for me, even though they offered. I also want to be able to interact with everyone and say thank you to everyone who participates.

So that's my birthday wish.
I want to be able to lay in bed and spend the day opening cards from all over the world. To connect with people- new friends and old. Please help me celebrate my life, my journey, my battle to simply survive each and every pain filled day. Please send me a card and share this event with your family and friends.


You are welcome to send cards early, as I will be keeping them to open on my birthday. If you can add "for your birthday" or something birthday related on the back I can make sure I don't accidentally open it early.

Facebook Event Link

Send to:
Bridget Parker
58 Panorama Avenue
Charmhaven
NSW 2263
Australia

#HAWMC Day Six

Hello lovelies, 

Today's Prompt:

Superpower Sunday! If you had a superpower –

what would it be? How would you use it? 

What a fun question! For me, I'd love to be able to teleport for the most selfish reason possible! The question didn't say it needed to be so I could save the world so I'm going to have a superpower so I can go and visit all of my friends all over the world! 

I have made some amazing spoonie friends from places in America, the United Kingdom etc and I find it sad that for the majority of us, we won't get to meet. I don't have a lot of friends nearby and all I want to do is lay on a lounge and watch movies with my spoonie friends!

Hopefully one day I'll be able to meet some of them. It's such a wonderful connection you have when you find out someone is a spoonie!

I'm all caught up on the challenge now so I will hopefully be able to write a little more and put a little more thought into each day. 

Gentle hugs, 

Bridget 

#HAWCM Day Five

Hello lovelies,

Today's Prompt:

Are you all about 180 characters or less? Do you enjoy shooting the perfect photo? Or perhaps love sharing posts on Facebook.What’s your favorite platform to get your voice heard and why? 

Social media.... what an interesting thing. I personally use Facebook, Twitter, Snapchat and Instagram. I believe they all have different purposes and completely different ways in interacting. I also think they have different "feels" to them. For instance, for me recently, I've found Facebook has become a rather negative place. It's become very political and anger fueled with sharing things I'd rather not have thrown in my face first thing in the morning! I find Snapchat fun and playful with all the different filters. 

Recently I've been using Twitter a lot. I like having to be creative in short characters. I also have met some lovely people on there. 

Instagram is another one I love. I have several different IG accounts for different things. 

Honestly I couldn't decide on a single platform, because I do think they all work differently. I love having this blog platform to share my thoughts and feelings and then sharing the post on all my social media. 

Gentle hugs,

Bridget 

#HAWMC Day Four

Hello lovelies, 

I'm almost caught up for #HAMWC! Just a few more to do!

Here's Day Four!

Write a letter to yourself for the day you were diagnosed, knowing you all know now. 

Dear Bridget, 

Oh sweetheart.... 

I remember the day we were diagnosed. I remember feeling happy because I finally got the acknowledgment that it wasn't all in my head, that I was actually sick and I finally had an answer. I had no idea that life would change this much though and that I'd be sitting here in bed 4 years later still on this journey. Going into this I think I had my blinders on, I was so focused in being diagnosed that I didn't really think of the future. I suppose thats life though, no one wants to think about where they'd be 5 years from now in a negative way. But life has changed. Please sit down to read this part because it might be hard....

You will still be sick. In fact, it's going to get worse. You'll add new illnesses to your health story and break your foot so badly it'll impact you daily for the rest of your life. 

Your friends will leave you. People can't handle you being sick. They only want the highlight reel and not the behind the scenes. It's going to hurt and be hard but you will get through it. You'll find the Spoonie community and after all these years finally meet "your people".

Speaking of your people.... Sami's just come back into your life as you were diagnosed. I remember being in the passenger seat messaging Sami to confirm your diagnosis. Oh how she was so important in helping you in the early stages of being sick. But my love, her health journey ends, so devastatingly to you. It'll rock you to your core and change you. You'll miss her every single day. The universe will help you though, Tara will come into your life and you'll have a new best friend who supports you every day. It's a friendship that will mean the world to you. 

You end up having to stop studying your Bachelor's Degree and finishing your tutoring business. It doesn't happen all at once, that would be too hard to handle. Instead its a slow ending goodbye in which you slow realize you can't handle working or studying without being so incredibly exhausted and sore. You'll miss it. But you have to do what is best for your health.

Reading this you're probably thinking- what else is there to life then? Yes, there's no work, no studying- but you become part of such an amazing community that you work to advocate for in ways you never thought possible. 

And you know what? You are still standing sweetheart.

Through the absolute struggle the last 4 years have been, you're still here and you're working so hard at not only living the best life you can, but a life in which you are working towards awareness for other's. I'm not here to tell you how to cope with your illnesses, tips or tricks or how to survive the heartache, I'm here to tell you in the end it will all be ok. You are waking up every day with a purpose. It's different from the life you lead 4 years ago, but in some ways it's more authentic. You've learnt to stand up for yourself, to actually have hobbies instead of working 24/7, how to just "be". You've become a pretty cool grown up who may have a hard life, but makes the most of it. 

#HAWMC- Day Three

Hello lovelies,

Here's Day Three!

Find a quote that inspires you and free write about it.

I feel like Fear is chronic illness. It's the first thing I thought of when I read this quote.

When we first become sick we are afraid, navigating through this new life with no idea what's happening or what is going to happen. I remember forgetting who I was because parts of myself weren't recognizable anymore. I was sitting in a boat and taking on water, holes all over and panicking. My goal was to simply manage to still float, scooping the water out as much as I could. Life at the start is an unknown. 

But then...

Then you get into the groove of being sick. Going back to the analogy, you learn how to patch up the holes in the boat. You're no longer merely surviving, but able to float, without that desperation of worrying about sinking. Sometimes you'll still worry, and sometimes you'll still take on a little water when you flare/ go through rough patches. But you're in this chronic illness phase of "maintenance" that makes life a lot easier. You learn how to live. 

Or you don't.

That's where I believe this quote comes into play. 

It's the fork in the road, or for this post's purposes, the fork in the river (are we on a river, or the sea? I guess that's for you to decide). You've overcome the early stages of being sick- been diagnosed, learnt about your triggers, learnt about pain management and the routine that is taking medications. 

This is where you need to decide, as the quote says- to run or rise. Or for those people still on my boat, to sink or sail.  It's not a conscious thought at all, it's an emotional reaction to the situation. For me, I decided to "Rise". I decided that I wanted to not only live a chronically ill life but to use it to my advantage and educate people on what life is like living with the notion of not getting better. I'm not saying that every day I wake up happy and positive and ready to shine. Far from it. But I don't allow myself to sink into that black hole that can so often come from being unwell. I refuse to focus on the negatives- the pain, the isolation and the fears. I'm not going to use my illnesses as excuse nor "Run" the other way and not tackle life head on. 

Life changes being sick. My 2011 Bucket List is so unattainable now that I am sick. The goals and dreams I had, had to change as I changed. But I focus on the now and not the past. I don't allow myself to get caught up thinking about how my boat went off path, or how its looking a little worse for wear then the other boats my age. 

I refuse to sink. I refuse to run. I refuse to do anything other then be me and be the best version of me that I can given my journey.

Gentle hugs,

Bridget 

#HAWMC Day Two

Hello lovelies,

Let's get right into Day 2! 

What's the blogging process look like to you? 

There are certain things I like to do to keep organized with my blog. The thing is, lately I haven't been blogging because I've been flaring. Had I gotten ahead in my blogging schedule I might've been able to keep it up. But before my mini break here's how I would plan to blog. 

Write a list of blog post ideas I have. 

Whenever I have an idea I jot it down right away. I keep all my ideas in one place. Having them all in one place also helps for planning out the week and making sure I have variety in the three blog posts for the week. 

Plan your blogs for the week

I love to planner, and love my planner so I write down the blog posts I want to do for the week to keep me motivated, ensure I have variety in my posts and focus on those posts to ensure they are published in time. 

Blog three times a week

I like to blog Mondays, Wednesday and Fridays. I read its a good idea to blog numerous times a week to get people engaged in your blog. 

Blog about different things.

I like to have a little variety of topics to post about. I find writing about spoonie issues take more time and takes a lot more concentration and there is absolutely no way I could write about spoonie things three times a week. I have a lot of interests and find it fun to do quick and easy posts on coloring books and make up, as well as the meaningful ones on spoonie topics. When it comes to those spoonie posts I only write when I feel inspired, I absolutely cannot write unless I feel motivated and creative. 

In regards to the process of writing a post, I never usually write a post in one go. If its a post needing a lot of photos I usually do those first- taking the photos, watermarking them and uploading them to my computer. Being a spoonie I find it very draining to blog so I often save the post and have rests in-between writing. 

I'm sure others have their own style in blogging, but thats mine. 

Gentle hugs,

Bridget