The Price Tag of IBD Week 3: Hopelessness

I find myself writing this post feeling incredibly grateful. It seems like an entire lifetime ago that I felt the pain of hopelessness that comes with IBD. I have felt hopelessness since my surgery, but it was different, it felt temporary. For example on Christmas Day I had a good old cry because cooking Christmas Dinner is always my favourite thing to do at Christmas. My love language is food and cooking beautiful food for the people I love brings me more happiness that the presents themselves. However, this year I couldn’t do that, and it hit hard. But at the end of the day I knew I was fresh out of surgery, and that it was physically impossible for me right now. But I also knew that next year it would different and it would be my turn again, it was only temporary!

This is such a massive difference from the endless hopelessness I felt when I was living through the hell of my last IBD flare up.

I felt hopelessness deeply and on every level, it touched every part of my life, and absolutely nothing felt achievable anymore.

The simplest of things, for example if we ran out of milk, I couldn’t pop to the shop and get a pint. I had to wait for someone else to do it for me. I couldn’t make it to the shops, and I knew that, but honestly a five minutes car ride, two minutes in the shop and five minutes back. But I couldn’t do it, how hopeless is that!

Would I ever see the inside of a shop again?

My house was liveable, my husband managed to stay on top of the day to day stuff. In fact he did the most amazing job, considering he was working full-time, doing all the housework, cooking, cleaning, school runs, shopping and anything else you can think of. However the deeper cleaning and tidying was at the bottom of the priorities list, I could see it, but I couldn’t do it. How hopeless is that.

Would I ever get my house back to how we used to be?

When I say I ‘couldn’t’ do anything, I appreciate how that might sound to someone who hasn’t experienced the darkest depths of this disease. ‘Couldn’t, of course you could, you just didn’t’. I wish I had the words to explain to you how it feels to be able to do literally nothing. I could make it to the bathroom and back twenty times a day, but that was it. I had no energy left to do anything else at all. I had no strength to lift a pan to cook some spaghetti, let alone stand for long enough for it to cook.

If I bent down to pick something up off the floor I’d have a dizzy spell and fall over. I remember clearly this happening during the middle of the night. I got out of bed to rush to the loo, went dizzy and fell forward hitting my head on the mirror. It frightened the life out of Bernie (my husband), but it goes to show in some small part, how physically weak I genuinely was. How hopeless is that, 42 years old and you can’t even rush to the bathroom without falling over, or hoover your lounge carpet yourself, or cook the simplest meal to feed your family.

Another part of my life that was hugely affected by hopelessness was my work. I was so lucky to be able to continue to work, adjustments were made for me to exclusively work from home. My job revolves, in the main part, around building relationships, and that’s hard to do via Microsoft Teams. There’s a lot to be said for face to face encounters. Moreover if someone needed support for something simple like an interview, I could change their life by accompanying them to it. But nope, I couldn’t do that anymore, I had to rely on my team, put extra pressure on them, and also extra stress on the client. Because now they had to meet someone new and try and trust somebody they didn’t know to support them instead. Not ideal really for anyone, and for me, it just reinforced those feelings of hopelessness.

All that aside though, I think for me the most hopeless I felt was each time I received the news that I was failing yet another treatment. I’d go to each appointment full of hope and positivity, this is going to be the one that works for me. Inevitably a few days, weeks or months later there would be horrendous side effects making me even more unwell, or the blood tests would come back and it would be onto the next treatment. After those phone calls I would feel hopelessness most profoundly. Was I ever going to find a treatment that worked for me? Was this what my life was going to be like forever more? If I’m this weak at 42 will I be bed-bound by the time I’m 45? What quality of life do I have? What quality of life will I have next year? I’ve let everyone down, I can’t even view colleges with Pippa, or watch Beanie play a football match.

I remember my frustration bubbling over at one point. I was trying to get myself some lunch, quick and simple cheese, crackers and some pickle. I couldn’t even open the pickle jar! The hopelessness was all-consuming and there was absolutely nothing I could do about it, other than just go without pickle. No big deal in real life, but to me in that moment it was the biggest deal of them all. The depth of hopelessness had never been more apparent, and all over a jar of pickle.

If you’re reading this relating to it, thinking ‘this is my life right now’, I just want you to know that it does get better. Writing this feels like reliving a bad dream, it doesn’t feel real anymore. Even though the memories are there, and I know it was real, my life is so different now, and all due to that little life-saving bag that I have attached to my tummy. It all feels like a distant memory to me now, and one day, the hopelessness you’re experiencing right now, will do too ❤️.