I ‘chronicly’ Me: Life with Chronic illnesses

A lot of people don’t realise or understand how much chronic illness takes away from you. Now this is not a post for sympathy, it’s more about letting you in to how life with chronic illness was can be. It’s raising awareness to help you understand.

I am at the tail end of a massive flare of FND, which also triggered my other chronic conditions to flare alongside it. I’ve been unable to work, struggling to leave the house.

Let’s just put that into perspective a little…..just over 7 weeks, that’s 51 days, it’s 1224 hours in a flare.

5 of those 7 weeks with a persistently bad tremor, stemming from my torso up my neck and head. Just imagine that for a minute, your body is vigorously tremoring, 24 hours of the day, it doesn’t stop, not even when you sleep. Now imagine all those muscles, tensed up, rigid, excruciating pain at times. Can you imagine that? Can you feel the pain it would cause? I have chronic abdominal pain so this was maximised beyond what I’ve ever experienced.

On top of that my left side weakens, I required a walking stick to aid in mobilising, the left side of my body was not cooperating. My legs gave out at times, causing me to fall to the floor or be stuck somewhere leading to having to reach out for help.

With my fowlers syndrome, I ended up with a long term catheter for a few weeks as I struggled to self catheterise and ended up in retention with well over 1 litre in my bladder.

I’m now able to mobilise better, but it’s still a lack of cooperation from the left leg. My tremor has settled, although still evident, but that I am able to cope with. Things are settling back to ‘normal’ for me, although I maybe have to accept a new vision of normality, but only time will tell.

The fatigue from being chronically unwell is unreal. It’s not the same as being tired, which people often confuse the two as being the same. Fatigue can be so debilitating.

Throughout this time I’ve had fantastic support, but I have also sadly experienced judgement, disbelief and let down. These are challenges that those of us with chronic illnesses face.
We aren’t heard when we advocate for ourselves, a constant struggle just for us to be heard.
It’s so tiring having to explain things again and again.

BUT…..

🔴 We SHOULDN’T have to face judgement

🔴 We SHOULDN’T have to be disbelieved, to be questioned about the reality of our conditions and the symptoms they bring

🔴 We SHOULDN’T be treated unequally or unfairly

We do not deserve this and unfortunately many of us do and it’s like every time it happens, that brick wall gains another brick, growing taller, growing around you. You are left feeling ignored and dismissed and pushed further into feeling isolated.

But thankfully there are those that do understand and support you. They listen with empathy and they want to help.

I’m glad that I’m now able to return to work, slowly getting back into routine and seeing how I get on.

Keep fighting, keep going!

You’ve got this 😘💕

For my fellow fowlers warriors 💪🏻 This looks like an interesting event. It’s an online one and even better….its FREE to book! Fowler's Syndrome UK

February is Fowlers awareness month. This condition is rare, affecting 2 in every 1 million women!

My symptoms started spontaneously in late 2020 leading to several hospital admissions and after tests and procedures, finally being diagnosed with Fowlers Syndrome in 2022. I have no awareness of needing to empty my bladder and can’t pass urine without using a catheter.

Hey everyone! My name is Lisa and I live with multiple chronic illnesses.

I live with Functional Neurological Disorder, chronic pain and fowlers syndrome alongside other medical conditions.

I’ve decided to set up this page as a way to share my journey and connect with others who live with chronic illness. A supportive place, and a way to share and hear other people’s experiences living with chronic illness.

Please give me a follow and bear with me as I get this page up and running.

Much love

Lisa 🥰💜