There has been a real shift in the way disabled people, chronically ill people, and benefit claimants are being spoken about online, in the media, and sometimes even in everyday conversations. It is harsher. Colder. Like there is this growing anger directed at people who are already struggling just to get through the day.

I keep seeing words like “scroungers”, “lazy”,

Every year, the moment the weather starts warming up, people get excited. Social media fills with pub gardens, beach trips, barbecues, iced coffees, and endless comments about “finally getting some proper sunshine.”

Honestly, I get it.

But living with chronic illness during a heatwave feels like existing in a completely different version of summer than everyone else.

While other people are enjoying the heat, my body is fighting it constantly.

You know, there's this whole emotional side to taking medication that I feel like we don't really get to talk about enough.

Sure, folks discuss side effects, doctors go over dosages, pharmacists remind you about timing or interactions. But the actual feeling of looking at a pile of pills and realising, 'Okay, this is my everyday now,' that's what often gets left out of the conversation.

And honestly, lately, that's what's been hitting me hardest.

There is something deeply unsettling happening at the moment around disability in the UK. You can feel it online, in newspaper headlines, in comment sections, and sometimes even standing in a supermarket car park trying to mind your own business.

Ever since all the recent conversations around PIP, benefit cuts, disability assessments, mobility cars, and

Holidays now come with planning, pacing, and a fair amount of trial and error.

When you live with ME CFS and fibromyalgia, you do not just pack clothes and toiletries. You pack for energy management, pain relief, sensory regulation, and the unpredictability that comes with chronic illness. Over the years, I have refined what I bring, and these are the items I now consider essential.

There is something about the bathroom that people do not talk about enough when it comes to chronic illness. It is one of the smallest rooms in the house, yet it can demand so much energy. Standing, bending, reaching, balancing, heat, steam, noise, bright lights.

I have had days where washing my hair has taken everything out of me. Days where I have sat on the floor because standing felt impossible.

There is a version of me that still exists in memory, the one who could pack a bag in twenty minutes, book something spontaneous, and just go. No planning around energy. No second guessing whether my body would cooperate. No quiet fear sitting in the background.

Living with ME CFS and fibromyalgia has changed that completely. Travel is no longer just about where I am going. It is about how much it will cost me physically, how long recovery will take, and whether the experience will be worth the inevitable crash that often follows.

Living with ME CFS and fibromyalgia has changed the way I speak to myself more than anything else in my life. Not in a motivational quote kind of way, but in a quiet, often fragile, very human way. When your body becomes unpredictable, when your energy disappears without warning, and when even simple tasks can feel like climbing a mountain, your internal dialogue can either become your harshest critic or your gentlest support.

For a long time, mine was not kind

March has been one of those months that has quietly crept up on me and then completely taken over. It has been filled with appointments, tests, referrals, follow ups, and more waiting than I ever feel prepared for. On paper, I have managed quite well. I have shown up. I have answered the questions. I have done what needed to be done.

But underneath that, something else has been building.

That familiar feeling of appointment fatigue.

There is a version of me that existed before chronic illness. I can still picture it clearly. I moved quickly, thought quickly, and parented in a way that felt instinctive and responsive. I was always doing, always planning, always showing up in the ways I believed a “good parent” should.

Then came ME CFS and fibromyalgia, and everything I thought I knew about parenting quietly unravelled.

Pacing is one of those things I had to learn slowly, and honestly, often the hard way.

When I was first told about pacing with ME CFS and fibromyalgia, it sounded simple enough. Rest before you overdo it. Stay within your limits. Avoid crashes.

But no one really explains what that actually looks like in real life.

Living with ME CFS and fibromyalgia has changed many parts of my life in massive ways, but the part I have worked hardest to protect is the relationship I have with my husband, my sons and my daughter. When your energy is limited, when pain flares up without warning, and when even simple daily tasks can feel overwhelming, it can be easy to slip into guilt

There is anger, disappointment and frustration that comes with finally getting a medical appointment and then walking out realising you forgot to say half of what you meant to.

If you live with a chronic illness, you will probably recognise this feeling. You wait weeks, sometimes months, for an appointment with a doctor, surgeon, or consultant.