Navigating the Stress of Disability Reforms: A Day of Self-Care and Reflection

Today, the weight of the disability reforms hit me hard. The rhetoric surrounding disabled people needing to "try harder" or "fit in" is exhausting, and the pressure to justify my existence, let alone my needs, feels overwhelming. I found myself spiralling into a state of stress, and I knew I needed to step back and take some time for myself. British Politics pisses me off at the best of times, and this wasn't the type of PMQs sesh I could take the piss out of, and it sent me into a panic attack. Irrationl. It left me feeling like a rat in a cage, and I had to spend that restless energy somehow!

I started with a short walk, just enough to get some fresh air and clear my head. Then, I went to the spa—one of the few places where I truly feel at ease. I am incredibly grateful to be a member, as it allows me to access the sauna, which always helps with my breathing, especially now. My chest is still full of mucus from the flu, and the warmth of the sauna seemed to loosen it, providing some much-needed relief.

While at the spa, I was reading Caraboo: The Servant Girl Princess by Jennifer Raison, and I haven’t been able to stop thinking about her. Mary Baker, or "Princess Caraboo," created a new life for herself, if only for a little while. She must have been so afraid of the workhouse—an institution designed to shame and punish the poor under the guise of help. And now, I see that same rhetoric returning in today's policies. The idea that disabled people must prove they are "worthy" of assistance, that we must suffer visibly to be believed, is deeply unsettling. The echoes of the workhouse mentality are growing louder, and it terrifies me.

A strange interaction in the spa only heightened my anxiety. A complete stranger started asking me intrusive questions—about my membership, where I was born, where I live, and even what my workout routine looks like. I finally had to say, "I don't have one of those—I have CVID, and right now I'm in a flare after recovering from the flu. I'm still on antibiotics, to be honest." The conversation left me feeling paranoid and uncomfortable, so I left as soon as I could.

I can't believe I mocked the Stanley Cup trend, but in actuality, it's lovely to have a 1.2 litre cup to take on my walk! It even makes me feel more "Aesthetic" while just drinking from it at home, and I have noticed I have been drinking more water, which probably helps with weight loss. 

Once home, I highlighted my script for Vision: The Musical, in which I have a small role. It’s an honor to be part of this production, especially as a chronically ill person traveling to Lourdes—a place where St. Bernadette is credited with miraculous cures, even though she ultimately died of an illness herself. Even now, people go to Lourdes seeking healing, and sometimes, against all odds, they find it. Maybe even me?

On a brighter note, I’m happy to share that my mostly plant-based Pescatarian diet has been paying off! Since starting, I’ve lost 4 kilos and feel healthier overall. I’ll definitely be keeping it up, no matter what.

In the evening, I watched With Love, Meghan, Meghan Markle’s new Netflix lifestyle show, and surprisingly, I really enjoyed it. She shared a recipe for a single-skillet spaghetti dish, which I absolutely want to try. Here’s the recipe for anyone who’s interested:

Single-Skillet Spaghetti Recipe

Ingredients:

• 200g spaghetti
• 1 can chopped tomatoes
• 2 cups vegetable broth
• 1 onion, finely chopped
• 2 cloves garlic, minced
• 1 tsp olive oil
• 1 tsp dried basil
• 1 tsp oregano
• Salt and pepper to taste
• Parmesan (or vegan alternative) for garnish

Instructions:

1. In a large skillet, heat olive oil over medium heat and sauté the onion and garlic until fragrant.
2. Add the chopped tomatoes, vegetable broth, and dried herbs.
3. Bring to a simmer and add the spaghetti, stirring occasionally.
4. Cook until the pasta is tender and most of the liquid is absorbed (about 10-12 minutes).
5. Season with salt and pepper, then serve with parmesan on top. Enjoy!
   
   
   

Tomorrow, I have a respiratory appointment, and I needed to prepare a sputum sample for it. The stress of all this was compounded when I woke up to a private number calling to confirm my attendance. At first, I thought it was odd, but then they told me that my immunologist had spoken to them out of concern for my health—she’s such a legend! I also requested a letter detailing the flu and the Pseudomonas infection I’ve had for the past month as proof for Livelines UK. Hopefully, with their new 15-hour quota and mandatory shift structure, they might move toward PAYE employment rather than treating us as freelancers while demanding employee-like commitment. That would be a small but meaningful win. Anyway's tomorrow evening, I am definitely asking my brother to cook me this meal! It looks incredible for a "low-spoons but still forced to function" day! 

I’ve also been looking into Traditional Chinese Medicine (TCM) to help manage my condition. I find its holistic approach intriguing, and it might offer some relief where conventional medicine falls short. I’ll be researching it further to see if it could be beneficial for me, especially fatigue wise, and when drs tell you that your BMI is over and come what may, you must lose weight, and move as much as you can, even if everything hurts, and it's not sustainable, something has to give, so maybe thai chi? Old people do it with Arthritis and other horrid things, even when they themselves can't hold down a 50 hour a week retail job like the average person my age. I am also looking into Tracy Anderson's Heartstone workout. LOVE, LOVE, LOVE what I see so far, but the weights are bloody expensive and Boujiee! £200?
Maybe I can put it on Klarna as an investment in myself? 👑 

This is supposedly to train your energy, and encourage mindful movement, in a gentle way for fluctuating conditions! Whether you believe in crystal healing or not, no worries, I still think they're such inspiring movements! (But I am a crystal girlie!) There is no way I am able to afford this in 1 lump sum tho! 🙏

Finally, I want to reflect on mindfulness and the impact of what we consume—especially in terms of media and music. For Lent, I have given up secular music with lyrics, focusing instead on classical music. I’ve realized how much pop music, with its often chaotic or emotionally charged lyrics, can add to my stress levels. It’s important to be mindful of what we fill our minds with because words have power. Choosing to surround myself with gentler, kinder influences has already made a difference in my mental state.

I am deeply grateful to be able to work from home, allowing me to manage my health while still pursuing my ambitions. Living in such a beautiful rural area is a privilege—one that I don’t take for granted. The fresh air, the quiet, the sense of space—all of it helps me find balance. Having access to this stunning hotel and spa, where I can truly relax and breathe, is something I cherish. I know that most aren’t this lucky, and I never want to lose sight of how fortunate I am to have these comforts in a world that isn’t always kind to those with chronic illnesses.🧿🙏

When these old Victorian lamps are lit up, it looks like an enchanted fairy garden! I love the way the owner kept so many of these gorgeous original features, but it also made me think about how many people all those years ago walked here, lit by these lamps and how messed up Victorian history is, as a whole, and how grateful I am that for the most part, we have evolved past this, to things like penicillin, as Influenza A used to kill people in that era, all the time, espcially with the chest infection I had!- and how we mustn't let go of our empathy for eachother, and go back to those Dickensian ideals.  .  

If you’ve been struggling with the weight of the world lately, I see you. Take a breath, take a moment, and take care of yourself. Even in uncertain times, we can find small joys, whether in a warm sauna, a good book, or a simple meal shared with loved ones.

Let’s keep going, unfiltered.


Clare ❤️