CIDP Awareness and my personal journey

CIDP Awareness and my personal journey Fighting an Autoimmune Disease Chronic inflammatory Demylating Polonueropathy. C.I.D.P .
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Hospital FatigueToday I’m calling it what it is… Hospital Fatigue.The endless appointments.The treatments.The waiting ro...
24/03/2026

Hospital Fatigue

Today I’m calling it what it is… Hospital Fatigue.

The endless appointments.
The treatments.
The waiting rooms.
The conversations about blood results and medications that become part of your everyday vocabulary.

Living with an autoimmune disease means accepting that hospitals, doctors, and treatments will always be part of my life. Some days I face it head on with strength and determination. Other days… I simply need to walk in the opposite direction for a moment and forget that this lifelong battle exists.

Not because I’m giving up.
But because even fighters need to breathe.

I want to take a moment to acknowledge the incredible doctors and medical teams who have stood beside me through this journey. Your knowledge, compassion and commitment never go unnoticed. You carry people like me through the hardest days, and for that I am deeply grateful.

But today is also about honesty.

Living with chronic illness can be exhausting in ways people don’t always see. It’s the quiet fatigue of always managing something that never truly goes away.

Still — I refuse to surrender to it.

I will keep fighting.
I will keep showing up.
And I plan on living a long, full life — even if it means treatment is part of that life forever.

Some days I rest.
Some days I step away.
But I never quit.


The good and the bad of my CIDP road . It's not a journey , it's a s**t show on legs. But one l'm great to walk again wi...
08/04/2025

The good and the bad of my CIDP road . It's not a journey , it's a s**t show on legs. But one l'm great to walk again with .
🥰 Tania

07/04/2025

Hi Everyone, just letting you all know my name is Tania . Given the reply comes from CIDP Awareness Page l thought l'd let you all know who l am .
As lve always mentioned, this is just my own personal journey. The videos and photos l upload are my own personal treatment days recored by myself assisted by my medical team some days . I'm just wanting others with CIDP know l'm here for support also . And to help raise awareness to other's with this crappy disease. I get it , l get you , l see you 🥰 Tan

25/02/2025

Hi there , well it's been awhile since l've updated everyone. As they say no news is good new's. And we'll yes it is good new's. I get to finish plasma exchange this year. It's been 6 yrs of it , and given they said ld have it for 2 yrs l'm happy to be saying goodbye to it. I'm going to miss seeing the staff who've been with me since day dot . But lm so happy l've made friends out if afew of them .

04/06/2024

A huge thanks to the Kyle and Jackie O crew for making my mornings . Starting your day with a good laugh is a brilliant way to start treatment. Thanks guys for the chat on air this morning was great . Bloody Legends.

19/04/2024

A reminder this Blog / Page is my own personal journey. The photos l take myself , or my nurses and Doctors take them as l go along.

I can't offer medical advice, l can only share my own journey.

Every C.I.D.P patient's case is different. So please remember what l have available is what my Specialist's have carefully mapped out for me as l progress forward.

It's been a hell bender few month's. l've struggled a lot. Having a autoimmune disease doesn't offer you a hall pass on ...
19/04/2024

It's been a hell bender few month's. l've struggled a lot. Having a autoimmune disease doesn't offer you a hall pass on every day stress from society and it's normal expenses that go with it. Nor does it exempt us from other day to day problem's. So l threw the big girl nickers on and l've kept myself moving forward.

Today's treatment went well. But the leg pain is excruciating after it. Ice Packs , Heat Packs , Paracetamol and Rest. Ahh well s**t happens.

About a week ago l recieved some flowers from my health care provider Bupa. I'd been on the phone to a lady to adjust my insurance as l wasn't happy with it . l was having treatment during the call, she stepped up and made my policy fit me perfectly.

I've been with this particular provider for many many year's. l'm greatful to have them. These flowers made my day . Small gestures can often make a huge difference. So to Ranea, the lady from Bupa. Thankyou. You did make me smile.
And lm able to return to a very normal life after each infusion.

Just realised ld forgot to post my removed loop recorder that the Cardiovascular surgeon removed from my chest. Any wond...
07/04/2024

Just realised ld forgot to post my removed loop recorder that the Cardiovascular surgeon removed from my chest. Any wonder l hated having anything touch or be against my chest whilst it was in.

The whole process of treatment is sometimes difficult. One foot forward 10 back. Today was my first Plasma Exchange for...
03/01/2024

The whole process of treatment is sometimes difficult. One foot forward 10 back. Today was my first Plasma Exchange for the year. An 8.30am start ! Hmmm yes well it's currently 2.24pm and l'm about to have my gripper and plasma needles removed. A very uneventful day. Power port is blocked , Apheresis Device is blocked . Neither work , so it's off for a portagram , then possible angiostripper to unblock them both.

They Injected a product called Alteplase which is a thrombolytic agent approved for use in acute ischemic stroke, pulmonary embolism, acute myocardial infarction, and occluded catheters. In my case occluded port's. Normally after 1 hr it's all clear and systems go.. Today is not happening 😕
Well 2024 is still going to be a good year. It's just a hurdle l need to jump .

05/11/2023

You have great days , good days and days when you wake up and your body is screaming out . The electricity is absolutely ripping through your nerves. And your whole body has pain that's excruciating. Today's that day .

My body is in a phase where l can't take any pain relief as my liver needs a rest . So all l can do is heat packs , ice packs , and oil from Bali with massages .
But we get on with it .

Having an autoimmune disease like C.I.D.P tests you day in day out 24/7 . It's a constant battle with your body, yet whe...
02/10/2023

Having an autoimmune disease like C.I.D.P tests you day in day out 24/7 . It's a constant battle with your body, yet when you look in the mirror you don't see anything wrong. The spinal fluid tells the story , and the nerves destroyed send the electricity shooting around your body.

You learn to push through the pain even if it's so cruel and you feel you can't do it.

It's not worth complaining about otherwise the world would leave you behind in the cracks. You grit your teeth and pray the pain and shocks settle , you know the only other option is no longer having the treatment and giving up. But that isn't an option for me .

The doctors appointments, bloods , nerve conduction, ivig , plasma exchange, scans , physiotherapy. It's some day's too much. You sit in your shower and you cry. You cry until your fingers are wrinkled up. You get out , dry yourself off and get on with your day.

You walk to keep your legs moving , you do your face exercises in the mirror knowing tomorrow is another day, you lift your arms up and clench your fists because now you can. When people say " on bad days ring me " well if you did it would be every fu*(ing day and nobody needs to hear the same sh*t day in day out , anyone that says it's ok is not being honest. It's not about being strong , it's fight or flight. So you fight.

You get out and make memories, because you know that oneday your memory is all those you leave behind have left of you.

Like l've said once before , l don't think to myself " why me " because why not me . I'm no better than anyone else. I may not have the body of the girl l was before the relapse in 2018 , my chest might have scars left as a reminder of the surgeries , but my mind and heart are still the same ....

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