Living with ME

Some links and articles about what it’s like to live with myalgic encephalomyelitis and my experiences with it-

My illness blog.

My Making The Invisible Visible interview.

Making The Invisible Visible Blogspot.

The Spoon Theory.

A Hummingbird’s Guide to ME.

I used to have a blurb here explaining what an average day for me is like, but I’ve realised that there isn’t really such thing as an average day in the life of chronic illness because it’s so unpredictable in nature. My chronic illness is always with me - it never goes away and, to my knowledge, I won’t ever get ‘better’ from it - but the severity of it does vary from day to day and because of that it can be very hard to encapsulate exactly what living with a debilitating illness is like. Fact is, even on my better days I can’t keep up with a healthy person, and I can never live a ‘normal’, unhindered life. Because of the erratic nature of the illness I can be perfectly functional one day and completely disabled the next, and the way the illness behaves is generally out of my control - I can spend 2 weeks resting leading up to a big event and do all the right things in the hope that I’ll be able to do whatever I have planned, but sometimes it’s fruitless.

When I do manage to keep plans, even on a good day I still experience a range of symptoms - a good day doesn’t mean I feel good, it means my symptom levels are at a 3 or 4 rather than a 7 or 8. If I appear to be doing okay or if I look well, it’s still not safe to assume that I’m feeling physically good - I’ve spent 10 years learning how to mask my symptoms and how to act ‘healthy’ because I don’t want to be a sick person all the time, and I don’t want my main focus to be my health. I also don’t want to constantly discuss it or feel like it’s the dominant feature in my life. It is incredibly significant to me and it effects me 24/7, but talking about it and thinking about it all the time is exhausting for everyone involved. One of the worst things about living with an invisible illness is that people assume they can gauge how you’re feeling by how you look externally, and it becomes exhausting debating whether to correct them or whether to just let them make their assumptions.

Living with a chronic illness is a constant battle - it’s a battle between doing what’s right for your health and doing what you want to do, between living in isolation and living in a world that doesn’t understand you, between putting yourself first and putting those around you first - it means treading a fine line between your physical health and your mental health, it means making decisions and constantly questioning whether they’re the right ones. The main thing anyone with a chronic illness can hope for is to be treated with patience, understanding and compassion by the people around them, and to live free of judgement regardless of whether they’re trapped in their bed for weeks at a time or pushing through their pain to spend a night out with friends. Living with chronic illness is just hoping you make it through each day without falling apart at the seams.

For anyone’s interest, these are the symptoms I experience on a daily or weekly basis-

- Nausea

- Headaches

- Tremors

- Orthostatic intolerance

- Light sensitivity

- Heat sensitivity

- Noise sensitivity

- Faintness and dizziness

- Low blood pressure

- Tachycardia 

- Joint pain

- Muscular pain

- Flushing and temperature irregularities

- Hypersensitivity to touch

- Gluten intolerance

- Lactose intolerance

- IBS and other gut problems

- Muscle weakness

- Depression and anxiety

- Brain fog and concentration difficulties

- Sleep disturbances and insomnia

- Sore throat

- Post exertional malaise