Hello 2016..?

I started 2016 in pain, surprise surprise!

I slept through all the new year celebrations, awaking groggily in the morning, trying to find some strength.

Why would I need to find strength knowing it was a Bank Holiday weekend, I hear you ask? Well, I’d received a letter the day before; a consultation with a new doctor at my hospital, a surgeon I found out once I’d Googled him (something I don’t like doing but curiosity was killing me) and I was going into over drive as to why and boggled by the short notice. Was something wrong? Was I going to need a surgery? Was 2016 already crapping on me? I was shocked, surprised and most of all scared. More than I was a couple weeks ago.

Next to rock up, surprisingly quickly after this contemplation, was my anxiety. I had come to terms with my previous nerves over the Christmas break, slowly but surely and was feeling positive that Vedo #4 – that was arriving three weeks ahead of schedule – would definitely help. But needing to have a surgical consult had thrown me out of sync. Was this just precautionary? Was it just part of the process of events? Did they know something I didn’t? Were they just covering their backs? I had no answers to this over the weekend and I was an emotional mess by the time I came to my infusion on the Monday morning.

This would be my top up / booster infusion at week 10 then again on week 14 – the scheduled eight weeks since the final loading dose. I’d spent some of my weekend researching what possibilities could come from my upcoming consult and was feeling more confident that surgery could be a real positive step towards getting my disease under control. The failed attempts at my canullation only reinforced this; how could I continue to be given this medication if all my veins have crapped out? The one useful one is always used for the pre infusion blood tests and my hands are so scarred, let alone my forearms and elbow creases. I was starting to loose it. This is just getting ridiculous! What other options have I got left?! When will my body start to response and give me a fucking break?! When will be able to start living again?!

Without really considering it or even consciously knowing it, I’ve been shying away from life, saying NO more than say YES and wanting to be at home instead of out enjoying things. Most days this is down to fatigue and pain but more and more often this is because I don’t want to because I’m waiting. Waiting for my body to be kick started and I can hit the ground running.

I feel this way more days than I care to admit. It’s happening right now. I’m off work with a bug and I just wish it would go away and I  could go back and hit the ground running. That is all good and well but the voice in my head tells me “maybe you’re just not ready, one more day off won’t hurt.. I promise. Better to be well than just half-arse ing it.. right? You know I’m right..!

Stupid bitch.

 

 

 

So what have I got to look forward to, I hear you ask?

My questions over what surgery they could consider for me, that’s next Tuesday.

Nottingham to go to in a couple weeks, an adventure  I’m sure but not your typical “back packing around Europe” adventure. To me, these are all big things. But in reality they aren’t. I’m trying to belittle them to let them not have so much influence and impact on me, but its hard. A surgery is a big deal, it would be my first. Nottingham could have a new treatment that could be very dangerous. I have to weight up the benefits over the risks and find the right balance at the right time. And I can’t do that alone.

I must be the most self absorbed and boring sick person going at the moment.

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1 comment

  1. So sorry to hear that you are having such a hard time. I strongly recommend that you read ‘Breaking the Vicious Cycle – Intestinal Health through Diet’ by Elaine Gottschall. My son was diagnosed with Crohn’s disease nine years ago. He had severe fistulating Crohns with anal abscesses. He followed this amazing diet and as long as he maintains it, he remains well and does not need to take any medication. She also set up a website, with the same name which is full of really useful information. This book and website may give you hope that there are other options – it certainly gave me hope that my son could regain his health!
    Feel free to email me if you would like more information.

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