Trini FND Journey

Trini FND Journey FND Awareness AdvocatešŸ§” for
Together we Rise šŸ”„
To help raise awareness, support others, and reduce isolation within the FND communityšŸ§”

I wrote this poem last year, but I wanted to put the words somewhere they could be read, not just heard.Living with FND ...
28/08/2026

I wrote this poem last year, but I wanted to put the words somewhere they could be read, not just heard.

Living with FND can feel full of contradictions ā€” things my body can do one day but not the next, things I can feel but canā€™t always explain.

I know Iā€™m not the only one who lives with this kind of uncertainty.

I hope that if youā€™re living with FND, or another condition that makes your body feel unpredictable, you can find a little piece of yourself in these words.

This is my reality.
This is my voice. ā¤ļø

(Just to say the words in this poem are mine written from my own experience living with FND. The image was created by AI so I could fit it into a clear post)

20/08/2026

Who knew my little Rolls Royce would become my kitchen essential šŸ˜‚ā¤ļø Being able to cook dinner for my family, even if I have to do it seated, is something Iā€™m so grateful for. It might look different these days, but Iā€™m still finding ways to do the things I love šŸ«¶šŸ¼

18/08/2026

Todayā€™s neurophysio session šŸ§ ā¤ļø

Today wasnā€™t about how far I could walk. It was about how far Iā€™ve come mentally.

My physio reminded me how much stronger I am in my mindset now. Iā€™ve stopped putting pressure on myself to ā€œbe betterā€

Iā€™m learning to listen to my body instead of fighting it.

Even after waking at 3am unable to feel or move my arm and struggling to move my leg today, I wasnā€™t scared. I knew my body has done this before, and it will settle again.

My physio was so proud of how far Iā€™ve come ā€” and now Iā€™m taking a 6-month break from neurophysio

For the first time, Iā€™m not fighting my body.
Iā€™m learning to live with it. ā¤ļø

11/08/2026

Letā€™s talk about anxiety ā¤ļø

Anxiety is something most of us experience, but for some people it can become so much bigger.

For me, pushing myself outside my comfort zone has slowly helped me build confidence. I still get anxious, I still get nervous and I still overthink ā€” but Iā€™m learning to do things despite it.

Making these videos has pushed me further than I ever thought I could go, and now Iā€™m taking another huge step by starting my Open University course.

If anxiety is telling you you canā€™tā€¦ PROVE IT WRONG. Tell it YOU CAN.

You might just surprise yourself.

If this helps even one person who struggles with anxiety or confidence, then making this video was worth it. ā¤ļø

10/08/2026

Trying for the first time it was lovely and very accessible for my wheelchair.

08/08/2026

If youā€™re watching this thinking, ā€œI donā€™t have the strength or energy to go outā€ ā€” I see you. ā¤ļø

I wasnā€™t 100% today, I didnā€™t have the strength to do my own hair, so I booked an appointment. I still have no voice, and getting ready took more out of me than people would ever know. It wasnā€™t easy but I found a way, I got my hair done, put on my makeup, got dressed, put on my jacket, and headed out for lunch with my hubby. šŸ„°

It doesnā€™t have to look the way it used to.
It doesnā€™t have to be perfect.
And you donā€™t have to do everything yourself.

Sometimes strength is asking for help. Sometimes itā€™s adapting. And sometimes your biggest achievement is simply getting out of the house.

So if youā€™re having one of those days where you think you canā€™tā€¦ donā€™t count yourself out just yet. ā¤ļø

Find a way that works for you.

Even the smallest step is still a step forward.

06/08/2026

šŸ§  I was reading some recent FND research todayā€¦

ā€¦and one message really stood out to me.

Researchers continue to support multidisciplinary care as an important part of treating Functional Neurological Disorder.

This means professionals working together, such as:

šŸ©ŗ Neurology
šŸƒ Physiotherapy
šŸ› ļø Occupational Therapy
šŸ§  Psychology
šŸ—£ļø Speech & Language Therapy
ā€¦and other specialists when needed.

I feel incredibly fortunate that I accessed this kind of support quite early after my diagnosis.

And Iā€™m still receiving specialist care today.

But I also want to be honestā€¦

For me, having the ā€œrightā€ team hasnā€™t meant a quick recovery or remission.

I still live with:

šŸš¶ Difficulties walking

šŸ—£ļø Episodes of losing my speech

šŸ˜“ Fatigue

āš” Tics

šŸ’™ And other symptoms that continue to affect my daily life.

Thatā€™s why I donā€™t think we should measure success only by whether someone reaches remission.

Because success can look different for everyone.

Sometimes success looks likeā€¦

šŸ’™ Learning to manage symptoms.

šŸ’™ Regaining small pieces of independence.

šŸ’™ Finding new ways to participate in life again.

šŸ’™ Having healthcare professionals who believe you and support you.

This research gives me hope.

Not because it promises a cureā€¦

But because it shows that FND is being taken seriously and that our understanding of the condition continues to grow.

Recovery isnā€™t one-size-fits-all.

Some people reach remission.

Some people continue to live with symptoms despite receiving excellent care.

Every journey with FND is different.

And every step forward deserves to be recognised. šŸ’™

FND Together We Rise CIC

I saved this quote on 8 November 2024, just days after my FND diagnosis, because I desperately needed to believe it.Toda...
31/07/2026

I saved this quote on 8 November 2024, just days after my FND diagnosis, because I desperately needed to believe it.

Today I found it again, and for the first time, I truly understand it.

My life isnā€™t what it was before FND, and it still isnā€™t easy. But Iā€™ve learned that where you are today isnā€™t where youā€™ll stay forever.

Recovery isnā€™t always about going back. Sometimes itā€™s about discovering strength, purpose, and hope you never knew you had.

Back then, I read it with hope. Today, I read it with gratitude. Time really can be a healer. šŸ¤

āœØ Quote by Anamika Makhija (Ana)

29/07/2026

First time going out on my own with the kids

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