I feel like all my blogs are doom and gloom, I swear we have good days.
Although, I'm not going to pretend Crohns is easy to live with, I'm not going to glamourise any of this.
One of the really frustrating things is the hospital stays and Ben being unwell. We've already established that. But what people do forget is how many plans get cancelled each time he is unwell.
So this year everyone has had a taste of this. It's not fun is it? Looking forward to holidays, festivals, Christmas events, nights out then suddenly not being able to do them.
We've had to cancel a Holiday, Boomtown Festival and a few other events we both had tickets for. As much as I really feel for Ben, and what he goes through is horrific. I can't tell you how disappointed I feel each time. I don't want to get excited for things incase we have to cancel.
That's the thing though isn't it? There is such a taboo over expressing how you feel as the one that is well. Usually the comments I get are: "Well you don't have to cancel the plans" or "Least your not sat in the hospital"
Okay, well here's the replies that aren't just eye rolls:
I appreciate I dont have to cancel all the plans if Ben is in hospital, on a fair few occasions I’ve invited someone else. However sometimes that is not an option or I simply am already not in the mood because i was excited for Ben to enjoy said event.
When you get excited for something, and then your favourite person can no longer go and you really can’t imagine someone else in their place at that time and then it gets cancelled for ill health. It‘s heartbreaking. 💔
it breaks my heart, and demotivates me. Most of the time I do not want to rearrange because I spend the time feeling guilty or simply wishing Ben could be there.
This doesn’t mean to say I don’t do anything when Ben is in hospital because there has been some excellent events I've been too and whoever I am with has really supported me and helped me have a good time. However those events are usually spontaneous or my friends simply dragging my ass out.
I know, okay, I fricken know that it’s not me sat in hospital or in pain. THAT DOESNT CHANGE HOW IT MAKES ME FEEL.
It is not easy trying to work, stay calm, stay ”happy”, stay positive, see Ben in that way and look after him when he is in a bad way and somehow find time for myself. It is exhausting, It IS difficult and it is incredibly stressful.
At least if Ben is in hospital he is getting the right care and support. Whereas I am just hanging on by a thread trying to take on the world without my sidekick.
So yeah I might not be in hospital, but sometimes I feel that‘s alot easier than trying to balance everything myself plus trying to earn enough money to save incase Ben needs it. SSP isn’t great guys. Its damn right exhausting.
Ben missing out on events is absolutely gutting and I suppose that's why I try and do so much with him on our time off work together To ensure he has great memories to cover the bad ones.
I am so SO bored of hearing at least its not you In hospital. Im bored of hearing it guys. Just because ben is the one physically in pain, doesn't mean how I mentally feel or the exhaustion I feel doesn’t matter.
Living with an illness some times means missing out, but its fine. Honestly it’s absolutely fine, I'm not angry that we miss out sometimes. Im angry with the reactions of people. I am allowed to be disappointed and hurt guys,
How would you like it if i said that holiday of yours that was cancelled because of Covid doesn't matter because someone has it worse?
Living with an illness means we will cherish and appreciate everything good alot more , we make an effort to do nice things and make memories together when Ben is well. That counteracts the bad. ❤️❤️
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