Manifesto Noun; A public declaration of policy and aims, especially one issued before an election by a political party or candidate. Man-ILL-festo Noun; A public declaration of aims from a diseased person, a mishmash word I just made up which has no basis in reality. If you know anything about me, or have read almost anything I’ve written, you’ll know that I love a pun. I’ve you’ve read my book Go Your Crohn Way, you’ll have established it contains over 5015435 puns (that’s an approximation only). Some people lovethe puns, some hate them. They are the marmite smeared across my pages. But as ..read more

I’ve written a little in the past about the similarities I find between coming to terms with a chronic illness diagnosis and the stages of grief. It’s been on my mind again recently for different reasons: the idea that just as grief rears its weepy head every so often so does the same feeling of loss that comes with having an incurable illness. Lately I’ve been missing my beloved Grandmother quite a bit and recalling how I felt when she passed away.   *I didn’t at any point say this blog was going to be a rollercoaster of non-stop fun so get off now I’ve you’re not tall enough to com ..read more

When you have a bowel disease the relationship with food can be, at the very least, a complicated one. In my mind and in my heart I LOVEfood. I love the smells, the sights, the tasteof it. I love the comfort it brings, the happy memories it evokes, the new experiences it allows. But my stomach HATESit. My stomach physically despisesit. Rejects it faster than a 3-legged-puppy at a dog shelter. (Which is something for the record, I would never do) And therein lies the issue – the one place where food should find its happy, nourishing home before starting its journey into the sewage system, is st ..read more

Chronic illness is used as such a ‘catch all’ phrase these days. It covers a myriad of illnesses, diseases and disabilities. But then couldn’t all of those words be used in the same vein? Don’t all chronic illnesses ‘disable’ us in one way or another? Make us feel ‘diseased’?  Chronic, as it relates to illness, is defined as ‘persisting for a long time or constantly recurring’. Its meaning is clearly definable but the number and variety of conditions it covers is certainly not finite. Health, and especially frequently poor health, naturally hits highs and lows. Sometimes those lows last ..read more

In the early days of our relationship, when my BF and I used to argue (and we used to argue a LOT), I’d often fall down. Flat out flop unconscious. I’d pass out and he’d have to rouse me. It was in equal parts humiliating and frustrating. I didn’t wantto do it – it was out of my control, it was like my body would literally shut down at the first sign of stress. This didn’t happen all the time of course, just occasionally, and he’d naturally be panicked, worried (and confused). Perhaps suspicious even; that I was somehow doing it on purpose; faking it. I wasn’t. But I entirely understand why h ..read more

Eight years ago today I was in hospital on one of my increasingly common ‘investigatory’ stays.  I was incredibly ill, confused, and afraid and certainly without the first clue what Crohn’s Disease was. I would eventually be diagnosed with the disease approximately 2 months later, followed by my first surgery in the Jan of the following year. To say it was a trying time is to put it milder than an IBD patient’s curry. I’d been advised I had arthritis in the early part of this same year and was barely getting to grips with that when this new pain began to strike. So loooong story short, w ..read more

A few days ago, a horrific attack happened in Manchester. I don’t need to describe the events again as I’m sure you have all read about it in painful detail, and really, I don’t want to; it’s so greatly unpleasant and upsetting. Our threat level in the UK is currently ‘critical’ and although I know those are cold hard facts that I know to be true, it still feels as if we are watching this all unfold in a sort of live action movie.  It’s almost too impossible to comprehend the level of depravity and evil some people are capable of, and practically on our own doorstep.  What does come ..read more

Something said to me in passing recently got me thinking about the general ‘outrage’ experienced almost daily in living with chronic illness.   Personally I’d say I’m a bit of an old hand at this ‘illness’ lark, so I’ve experienced my fair share of insensitive, thoughtless or just plain mean, comments linked to my condition.   The most recent of these was uttered by someone I am friendly with and who I respect and even likeas a human being.   (Names withheld to protect identities/avoid them being chased down the street with flaming torches)   This person commented ..read more

In a few days my friend Ari is coming all the way from Argentina to holiday in Scotland (and see me). She’ll be staying with my partner and I for lots of the trip and we will even go away on a little mini holiday of our own in the middle. This will be the first time we’ve ‘met’ face to face after talking on the internet for maybe 3 or 4 years. We chat EVERYDAY. That’s rare in this day and age (and certainly for me) probably because I don’t feel that interesting or engaging most of the time. Yet this friendship is easy, fun and loving. It puts me at ease and there are no judgements on either ..read more

I’ve been thinking a lot lately about how much a chronic illness can change a person. Typically this phenomenon isn’t unique to a diagnosis of illness of course; a person can ‘change’ for countless reasons. But one of the most substantial is a sudden and drastic alteration to our life. An unexpected shock. A bombshell. Of course not all diagnoses of illness follow this ‘bombshell’ route – many of us are eventually diagnosed with something after a long and protracted period of sickness. Symptoms build and we experience all the ups and downs and confusion that goes alongside being continually i ..read more