How it is.

How it is.

This week is Crohns and Colitis Awareness week, I wrote this as part of my contribution.

I read a post recently about how if you want to write passionately then write about things that mean something to you, about things that challenge you, about things you wouldn’t normally write about because they’re too close to you.  I suppose it basically means write with your heart on your sleeve.  Unfortunately, for me that means writing with my arse on my sleeve.  I’ve not posted much recently because my whole mindset and everything has been taken up with feeling  either in pain, worried sick or sleeping too much because I don’t want to be awake. Ulcerative Colitis is nasty and has kicked me quite hard recently.  Anyway. I will do toy posts and happy posts and pictures of craft things and wierd recipes again soon, I just need to make sure my head is in the right place.

The kids are fine, Darlek performed carols with the choir today at a local church along with kids from a load of other schools.  She smiled all the way through, knew all the words and looked so grown up amongst all the other children.  Sausage sat next to me smelling like a sewer (he had an accident just before we got there) and tried to cover my mouth with his hands because he didn’t want me to sing. I know I don’t have a great singing voice, but I was a teeny bit put out.   It was also a bit distracting when he mimed pulling my ears off mid ‘Oh Come All Ye Faithful.’  That’s the nice bit.

This is the bit that makes me feel a bit wobbly.  Stop here if you don’t want to hear about how I’m coping with things below the surface.

Do you ever feel like it’s all just a bit much? Today for example, my ulcerative colitis is acting up, as it has done for months now.  Sat on the loo, blood drip, drip dripping like a tap just before it starts flowing properly. Sharp stabbing pain where the sun don’t shine. Nuzzling a nearby jumper because it eases the pain somehow. Spend ages waiting for the blood drips to slow down so I can run off and find a camera so I have actual proof of how bad this is so I can show it to my consultant. Bleed all down my legs, find a blood clot on the wall somehow which needs wiping off. Take a photo of a loo that looks like red paint has been poured down it. Listen to the kids downstairs and wonder how much blood you can lose before you become queasy or faint and hope that my 7 year old daughter knows how to dial 999 or what my parent’s phone number is at least. Flush the loo, and then flush it again because it’s still a nice shade of sunset and the kid’s will wonder why the loo is a funny colour. Stand up, make myself look presentable, wipe the blood off the loo seat. Go downstairs. Carry on as normal. Thank god this is only once a day.

16 responses to “How it is.

  1. Reading on my phone from a youth hostel with next to no signal, hoping this comment makes it through to let you know that I’m reading, I’m here, you haven’t scared me off, I care.


  2. I’m here too. It makes me sad to hear that you are suffering so much, but I’ll always be here to give you a pointless cheesy grin.

    Like this


    Ooops, here comes another one


  3. Sorry, Kay, you’re stuck with me. I don’t concentrate on the good bits and run away when a bad bit comes along. And I’m sorry I can’t be the fairy with the wish for you – I would if I could.

  4. Virtual hug from me too. Really sorry you’re having to go through this

  5. Thanks all of you, I have an appointment with the consultant on the 20th December, so I’m hoping to find out a bit more about things then. I debated whether or not to post this and thought that I’d lose readers, but this is about life, not about numbers and this is what I’m going through and this is what I feel – so buggerit. I will not check my reader stats, I will not censor my thoughts and I will continue to post honestly. I shall try not to be as graphic as that in the future, it can’t be pleasant to read, I just want people to understand things from my point of view. It is Crohns and Colitis Awareness week too, so this fits in with that theme too really. I really appreciate your messages and your kind thoughts, I’m honestly ok for most of the time, I just have moments when it’s all a bit much that’s all. x

  6. Very moving post. I’m dealing with Crohn’s myself, thanks for raising awareness! Kind thoughts from Paris, France xxx

  7. Hey Hon,

    I will be thinking of you on the 20th. I hope your consultant can help you.

    Not every day is a good and happy day. We all have a difficult moments. I’m glad you wrote about yours.

    I know exactly how hard it was for you to write this post. You did it well.

    Hugs xx

  8. It does you good to write it down and put it out there too people, its one of those hidden illnesses, so this is the only way people can understand. I hope you get some more direction and action from the consultant xx

  9. I think it is good that people like you make people like me appreciate what it actually means to have these illnesses. Well done on sharing in awareness week, And Im sorry your stuck with me as well…somebody that starts a sentence with and

  10. Sat here with tears rolling. Lifes a bitch as they say 😦 It makes me very sad to think of you suffering like this, it really does. Hope to God your consultant can help you xxxx

  11. Honestly though, it is just once a day. My blood levels as taken by the GP, are fine, so it seems I’m coping with the blood loss. It just scares me every time so I do worry about things, but no doubt more than I should do. I’m not in constant pain, just every now and then it all gets a bit much. Life is going on as normal though, and I’m not at death’s door by any means. It’s amazing how resilient the human body actually is. This week I’ve felt a little bit less exhausted so I’m feeling more positive. Thanks all for your comments, they mean a lot. :O)

  12. You’re a very brave lady for sharing this. Like the others I haven’t been scared off. If anything I feel a bit more inspired to share some real life posts from time to time on my blog. Reading real posts like this can really help others from feeling so isolated and alone when they are going through tough stuff x

  13. oh my goodness Kay, this is awful. I hope you get the care and attention you deserve. xxx

  14. Hi Kay,
    Thank you so much for sharing. I’ve just been diagnosed with Crohns and as awful as it is it nice when other people are brave enough to share their own experiences. I feel inspired to talk about it more myself. Thank you for making me feel like i’m not alone, and I hope you feel that you are not alone too. xx

  15. I remember those crime scene days. Scary. Tbe worst I was I was doing that about 15 times a day. Maybe more as I refused to count bc I was too exhausted. At my sickest I needed 4 units of blood to get me close to normal and I was still slightly low. Sometimes it feels like a dream. Had my colon out in May. I had enough of not living my life bc I was barely alive. I couldn’t keep saying no tp my little girl bc I was too tired. Feel better.

  16. It’s not fun is it. When I was flaring and ended up in hospital it was about 10 times a day. I’m just thankful I’m not that bad anymore. Wish I knew what was causing it though, seems far too dramatic for just a fissure and hemmies – rather worried that I have issues that aren’t being resolved by the meds. Which is scary as I’m already on immuno-supressants etc. Ah well, if worrying made it all better I’d be fixed by now. Thanks so much to everyone who has commented, xxxx

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