27/08/2025
THE REALITY YOU CAN'T SEE
BEHIND MY SMILE...
For every person out there, chronic illness looks completely different so I thought I'd share some of what I can go through on a daily and weekly basis and amidst a current crash. I've opened myself up and at my most vulnerable here so please bear with me add be kind...
In an average day there is a constant level of pain that varies and often so intense. It's distracting and can often have you bent over with intolerable overwhelming waves of it. It's so debilitating that when these waves happen my hands will actually stop functioning, i'll drop things if I'm doing something.
The tingling, numbness, lack of dexterity and general weakness are always apparent. Sometimes this stops me from even holding a drink or cutting up my own food. For me, I hate it, it's embarrassing and never should be.
Exhaustion isn't something that happens now and again. It's something that happens every time I wake up. Indescribable exhaustion that means I can't function. It's like trying to move 50 times the amount of your body can cope with. It's ever lasting with reduced cognitive function, a constantly fuzzy brain - brain fog. It's knowing that when I do something or get to go out, during and after my body screams and screams until I give in. A day, a week , a couple of weeks in even more pain and exhaustion.
Forgetting words or the names of every day things. Not being able to form sentences to have conversations or just not being able to speak because of a momentary disconnect in the brain. It is people getting frustrated because you can't communicate or it takes more time. People think you are stupid.
There's memory loss. For me it means total loss of anything I could have done 6 months/a year ago or a minute before. Having the same conversations, asking the same things, forgetting to take meds or taking double because I forgot I'd already had them. It's being out and forgetting where you are or where you are going, even forgetting you are out with people. A lot of the time a prompt is good enough or checking my phone to see what my to do list is. Luckily these moments are fleeting but none the less, disconcerting. Only 12 or so months ago I was tested for dementia because it's got to a level where I borderline on parameters through tests for it. Luckily it doesn't seem to be. Mostly friends and family are patient with my repetition but I can definitely see/feel the moments it frustrates them. I hate that I make them feel that way.
With a reduced immune system I am constantly fighting viruses and infection of some sort. Going out is an educated risk. For a normal person a 5 day summer cold is over and done with. For me it's 2 months of being really poorly and often bed ridden for part of that time. It's losing my voice for months on end or a huge flare up as my immune system fights everything in my body.
Leading on to allergies... One day I can touch or eat something and be fine, the next time I touch or eat the same thing my lips start swelling, I'm feeling more unwell than usual, my skin reacts and my body rejects everything... to the point of needing to be in hospital and being very sick. Every day is an allergy lottery! 🤣
The pain and troubles I get with my kidneys has been a constant for nearly as long as having ME and Fibro. Maybe I'll share this another time but also has a big impact on my life.
Not forgetting my digestive system. Chronic illness causes me to not want to eat for days and other times my appetite is larger than a mountain. Forcing yourself to eat because you don't process energy in the same way is not pleasant. It's a need to fuel the body and keep my blood sugars stable. Feeling nauseous or sometimes being sick because you can't stomach it is a huge strain on my body.
Palpitations, low heart rate, high heart rate, feeling dizzy. All things that happen with unregulated automaton. Showering, raises my heart beat to 150/160bpm. Standing, the same. BPM through the roof, perfuse sweating and feeling really unstable. I call them 'in the moment crashes' and it takes me a good while to recover from these. It's horrible!
For me, 3 years ago a right leg paralysis. Losing my ability to walk. Thankfully it's improved with time and I'm back to being able to walk a few feet and turn to get into my wheelchair etc. They are looking into possible functional neurological disorder for this currently.
It's the loss of use in my urinary and bowel tract. Both come in waves for periods of time. Both incredibly mentally and physically uncomfortable at the age of 47...
Along with weak muscles, poor mobility and motor skills, this is why I use a powerchair, to maintain my independence.
I have lost the left field of view in both eyes. This was about 6 years ago. Another thing they cannot diagnose but know it's there and happening as shows up in tests, just like the paralysis. It never goes. And varies from day to day with how much I can see and how much of the world is blurry. Possibly to do with the FND? They are trying to link it.
Everyday is a battle but it's a day I'm here and I'm alive. That I'm very grateful for. I have my kids (all grown up), my hubby and my friends. Life is good. Life is what I make it. Whilst I only use social media to post on my page and instant message, it allows me to be normal if I choose. It allows me to take time over conversations and write it down so I can remember what I've said or what I was half way through saying. It is also a life line in times where I am bed ridden and the outside world seems so far away. When other times it's an unneeded distraction with notifications when I'm feeling really ill. In those times, it takes me a while to reply, look, speak to anyone.
Emotionally, it brings it ups and downs but I'll save that for another post as I try to raise awareness from my corner of the internet.
I think above all of this, one of the worse things about chronic illness and all of this, can be people's attitudes because they can't see physical signs or symptoms. You aren't believed, told "everyone gets exhausted". "Have you tried exercise", "you don't look ill", "at least you look well", and many more such unclever quotes from people. All things said that make you feel like total s**t. All things we've all tried, worked through and still can't function.
Chronic illness is often invisible, often frowned upon by 'normies' who fail to want to understand. I've been told I'm "a total fake - as are most people with invisible illness". It doesn't matter that tests show the lack of function or problems. Because they can't see it, it doesn't exist. It's incredibly degrading! Lazy, attention seekers, deranged, all things often said in person and on social media but you learn to look over it.
Chronic illness does rule your life and it's a fight every single day to show up, be present and be there for my kids and hubby, no matter the capacity I'm there... even if it's just sitting up in bed and having a conversation or other times being able to get out and properly enjoy life, I'm there...
And in this more main stream version of showing disability, accessibility and chronic illness I want to share honestly and openly how most of us are affected.
When i can, I use my voice and platform to make change and bring positive conversation about chronic illness, disability and accessibility. Together, as one voice we are stronger and we are a supportive community. This is why i love about you all!
If you take one thing from this, let it be this: Chronic illness is real, even if you can’t see it. It’s relentless. But so am I. And to those who lift me up every day (family, friends and those you who follow my journey) — thank you. You help me keep fighting.
Loves
🩷 Jayne 🩷
Photo: Jayne sat with Spooky the black cat - sat on her, having cuddles
