Gail Oliver

My name is Gail & I am a member on the Committee of the GBS/CIDP Association.

Can you briefly share your experience with CIDP?

I have CIDP. My journey with CIDP started in 2017 early January when I started having tingling painful sensations in my feet and legs at night, so after some weeks with these symptoms my GP suggested it was nerve pain, and I started taking Lyrica medication.
My symptoms persisted so I was then referred to a Neurologist, who after much examination suggested a nerve study test, which showed some nerve damage. After a follow up consultation, I was advised to return in 12 months follow up consultation.
The nerve pain persisted, however with medication I was able to live normally but with very uncomfortable pain in my feet at night.  In mid-October of 2017 I was feeling extremely fatigued and my legs felt heavy, and my balance concerned me.  
During the next few weeks, I had regular GP visits. My poor GP was at a loss with trying to sort out my symptoms. My husband is a golfer, and his friends had organised a golfing week in Bowral and wives were included, so trying to forget my very annoying health symptoms I was keen to go, as there are lovely shops and great coffee and pastries for us girls to enjoy!  Unfortunately, on the second morning I totally collapsed and was unable to walk my legs felt like logs. .

What was your toughest challenge you faced during your recovery and how did you over come it?

Returning to Sydney and my GP I was admitted to Norwest hospital, where my CIDP journey started in earnest.  The Neurologist organised extensive nerve conduction study, MRI and lumbar puncture and what seemed like endless tests. Eventually I was diagnosed with CIDP, which I remember saying “what the hell is that”…
The information regarding the disease was virtually nil only that I would need a loading of IVIG.
February 2018, I started IVIG infusions to help my immune system to build good antibodies, which would not cure my disease, but hopefully prevent further nerve damage. The week of treatment was very difficult, as a side effect of the IVIG for me was Aseptic Meningitis which was an experience I would never want to go through again. After the initial five infusions I now am on monthly infusions.

Has your GBS/CIDP journey changed your life in any way?

I am so grateful for the IVIG infusions, as they help and enable me to live a somewhat normal life with limitations with balance and getting fatigued and avoiding stairs and uneven surfaces.
As I stated earlier I had no idea about CIDP, but I started researching and reading as much as I could and that’s when I found  the GBS/CIDP Association. Hallelujah I spoke with the wonderful Trish who is the phone contact with the Association and that phone call changed my life for the better, as Trish invited me to the meeting which was pre covid so we met at Ryde Rehab Hospital, where I met other CIDP sufferers who were on a journey similar to myself and were happy to share their experiences, which were so helpful.

What inspires you each day?

My journey started 7 years ago and in that time I have learnt to live my best life with limitations and I am so grateful to have a wonderful family who support and love me everyday my friends are also a great source of fun and friendship even though they don’t really understand my condition, so I just say I have wonky legs and go off balance a bit.

Do you have anything else you would like to share?

Becoming a member and joining the GBS/CIDP Association is my way of helping those newly diagnosed or those trying to navigate their disease with much more support and clarity than I had at the beginning when we support each other and offer guidance and care we all can help make this world a better, kinder place for all.