Shared experiences of living with pain

In preparation for a talk I gave about what it’s like living with pain, I asked a few questions on my blog to see what other people experience. Here’s a round-up of the answers people gave.

Thank you to all those who shared their experiences with me. 32 people took part and I’m grateful for the time and energy you spent.Read More »


Resources for professionals for understanding living with long term conditions

In my talk Living With Pain on 7th February, I referred to several studies and other resources. Here are links to these and some additional ones on living with pain and hidden chronic illness, and improving our care. Read More »

The burden of long term condition management

Living with a long term condition affects every minute of the day, every activity, and they require so much effort and planning to manage. A study on this came up with a marvellous infographic – a must see for health professionals to understand this burden.Read More »


M.E. information and support

Where to find information and support on M.E. Read More »


Health and medication queries

Not sure who to ask about a new symptom or health problem? Read More »


More power to you: M.E. patients found to be the least empowered

How can we become more empowered, and what do health professionals need to know to enable this?Read More »


Making the most of PIP

Disability iconBeing awarded PIP at long last has opened up lots of other help such as travel cards, a blue badge and discounts for those who help me when I’m out and about.Read More »


Reblogged: Enforced rest vs chill out time

Great quick blog explaining to healthy folks how our rest isn’t by choice and it’s not even a “duvet day”, it’s because we’re too ill to do anything, and trying to will result in even worse symptoms. Having a chronic illness isn’t a chilled out lifestyle choice, it’s debilitating.

My heart is set on living ...

I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it.

I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound ike an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun.

My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and…

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#WorldMentalHealthDay: Trauma and chronic illness

I believe youFor #WorldMentalHealthDay this year I’ve written about PTSD in general, and then more specifically about trauma due to experiences as patients with chronic illness.Read More »


10 Things to Remember When It Seems Like Things Won’t Get Better | The Mighty

When I shared this article from The Mighty on Twitter it seemed to resonate with others going through a tough time, so I thought I’d share it on my blog too. I recommend signing up to The Mighty’s email list as they’re always great articles by people living with chronic illness. 10 Things to Remember When […]