What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

The frustrations that come with chronic illness

I've decided! It's hard living this life, if I really take the time to stop and think about it, which is why I usually don't.

It IS unfair, and it is NOT the life that anyone should be living.

I choose to plod on each day (and sometimes it really does feel like a plod) and get the things I need to do done and then I'd just like to be able to sleep.
But you can't always sleep can you... 
Whether it's the meds, the pain, the anxiety or the depression, the 'healing power' of sleep is not always achievable.

I have learnt to adapt. I have learnt to be 'OK' when really, of course, things are not. 
I hate the feeling of weakness when I have to 'give in' and take pain meds. 
I hate the constant feeling of fatigue which makes me feel snappy and mardy, which makes people tread on eggshells around me so as not to be in the 'line of fire'. 
I hate that my muscles and my joints ache when I've done nothing more than sit on my butt all day.
I hate that I can't control my own body, my pain, the need to run to the toilet and the anxiety that it causes. 
I hate that some days, no matter how hard I try not to get to that point, that I crumble, cry and can't help thinking... Stop the world, I want to get off.

But most of all, I hate the reaction of other people.

The look of pity in peoples eyes - I want to tell my story, I want people to understand the enormity of this disease but I cannot deal with being felt sorry for, that's not the purpose of sharing.

The stupid remarks from people that don't understand at all but feel the need to offer advice... Because I've lived with this for 8 years and clearly this novice is more equipped to deal with it than me.  

And the people's reactions that hurt the most are the ones that I care about and that care about me. I have reached the point where I am making people angry because I'm not telling them what's going on. I get fed up with saying the same thing because it feels like nothing changes and I've had many people before that have got fed up of hearing it.

I feel like I have nothing new to say so what's the point in saying anything? And what's the point in boring people with it when it when in reality, complaining about it isn't going to make me better.

I feel an enormous amount of guilt for living this life and involving other people in it. I can't deal with upsetting people. Life is enough to contend with at the best of times without people having to worry about me, which means that I can't let anyone close to me because those that already are, are living with this disease too.

And I suppose, after all of that, all of the thoughts and feelings of upset and anger, part of living this life means accepting it. 

It is what it is. 

And what it is... Is all I've got.