Disability Pride Isn’t About Loving Your Disability
Disability Pride Isn’t About Loving Your Disability; it’s about finding ways to live your best life despite symptoms and abilities that make it harder. Taking steps to make life possible, coping with the ups and downs of life, and not letting anyone make you feel less because of it. I have been caring for my mom, who has Multiple Sclerosis, for the last few weeks as she has been really struggling. To be honest, it has really highlighted how much my own disabilities affect me and make it difficult. There have been moments when I have just felt so overwhelmed with frustration and fear that I cannot take care of…
Finding Zen: How Hobbies Support Mindful Living
Life often feels like a constant buzz, with endless to-do lists and digital notifications pulling us in every direction. Finding a peaceful moment can seem like a luxury. But taking time for ourselves isn’t just an indulgence; it’s vital for our mental well-being. Hobbies offer a powerful way to get back to ourselves, helping us disconnect from stress and reconnect with a sense of calm and purpose. The Power of Play for Adults As we get older, we often leave the idea of ‘play’ behind in childhood. We trade playgrounds for presentations and free-form creativity for structured tasks. But rediscovering the joy of play through hobbies is one of the…
Changing Routines So They Don’t Tire You Out
I love routine and having set things at set times but changing routines so they don’t tire you out is important too. Being flexible when our chronic illnesses flare or change can make a big difference to how we can feel during the day and how much we can do. I have this year, spent a lot of time changing things, and that has needed to happen again this last week as my mother has been sick. So, let’s chat about this and make sure we take care of ourselves in the best way possible. When Helpful Routines Become Exhausting For me, routines are how I make it through the…
How To Stay Calm Under Pressure
Occasionally, we all experience feelings of fear and anxiety. Sometimes they seem to appear out of nowhere and other times we know exactly what’s causing them. It could be a presentation at work, a difficult conversation, a mistake you’ve made, or simply being thrown into a situation that feels unfamiliar. Whatever the reason, anxiety has a way of making everything feel bigger than it really is. Your stomach starts doing somersaults, your hands feel shaky, and suddenly it’s difficult to focus on anything other than the thing that’s worrying you. While it’s much easier to calm yourself down when you’re at home in your comfort zone, that’s not always possible.…
You Are Worthy of Love
I think so many people struggle to believe that you are worthy of love when you are disabled, and much of this comes from the messages we absorb as we are growing up in this society. We worry that needing help makes us selfish or a burden, and that our illnesses make us hard to love. There is also a feeling that we should be grateful for any support we receive, and if I am honest, these are things I struggled with myself. It has taken me a long time, and a wonderful husband to realise that needing care makes me no less worthy of being loved. My illnesses are…
Finding Small Joys on Difficult Days
I used to measure my good days by how much I got done; I pressured myself to pushing against my symptoms to ‘achieve’ and it became exhausting. I have since learned that peace, comfort and rest are so meaningful, and finding joys on difficult days is so important. Some days, joy looks less like achievements, and more like listening to my body, resting before needed, and slowing down. The Quiet Shift: Stopping the Fight In last week’s blog post, I spoke about the reality of ‘good days’ when it comes to chronic illness. This week I want to tackle the shift that occurs when I started finding small joys on…
What a “Good Day” Really Means With Chronic Illness
As someone who has lived with chronic illnesses for over twenty years, I know that ‘good days’ often come with people assuming I am well. People saying I am looking better, or I seem well today do nothing but show people assume our symptoms come with on and off switches. Today I want to chat about what a good day really means with chronic illness, and how it feels from our side of things. A Good Day Doesn’t Mean Symptoms Disappear A good day is not feeling well, and I think this is the confusion that many people in society have because they know and understand feeling better after being…
The Softest Version of Self-Care on Low Energy Days
In our society, self-care is often seen as something that needs to be done, bought, aesthetic or aspirational in some way. But on low spoon days, this can feel like another burden that has to be done instead of something nice to feel good. We need to redefine self-care and what it means when we live with fatigue, burnout, menopause, neurodivergence or emotionally difficult times. To those of us with chronic illnesses and disabilities, it needs to look less like fixing ourselves, and more like building the softest version of self-care on low energy days. Redefining Self-Care I think too often, we think of expensive routines, or constantly upgrading our…
Wanting to Feel Seen When You’re Chronically Ill
I have had people talking over me and behind me when I’m in my wheelchair, had to say no to plans with friends because it isn’t accessible. I have even gone out with family, only to realise they didn’t book accessible seats so I couldn’t see at a concert. That deep and aching feeling of not being considered or our needs being met. Wanting to feel seen when you’re chronically ill is something we have all felt, we aren’t alone in this. The Experience of Feeling Invisible I used to be a very different person, I lived alone and had a job I was proud of, I worked hard and…
Chronic Illness, Identity & Letting Go
There has been a lot of change in my life, I guess that’s why using the name Beverley Butterfly makes sense! But right now, as I step into menopause, and look back to see how chronic illness, identity and letting go affected me I often wonder how I became this version of me? Chronic illness does not just affect our bodies, it reshapes our identity and we grieve and unmask and find ourselves. The Quiet Identity Shift of Chronic Illness It’s funny but our identity changes slowly, it’s not a wake up one morning and realise you are disabled. It took me years to understand that I was, and more…
