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…
adventures with a chronic illness
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I am scared.
“So I am scared of all of this. That I’m trying so hard to get some control of everything, I’m trying to not be angry but being angry is all I can feel. “
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Vedolizumab #1 & #2 – Do I dare hope..?
“The biggest thing today was how much care and attention I receive from my IBD team. And I really need to fight to keep that the same; given the NHS Trust’s changes.. “
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The road to Vedolizumab
“The best I can do is just hope for the best and deal with the worse, if and when it shows up.”
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Infliximab #14 – The Final One
“I’m willing to give it a whirl but how much of this is just putting off the somewhat inevitability of surgery? Its the big unknown and the big elephant in the room.”
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Misery DOES NOT enjoy company
I am feeling utterly miserable today. I don’t know what has gotten into me, but I don’t feel happy at all. Maybe it’s the 4am wake up call my subconscious gave me this morning, the belly pain that started up soon after my eyes adjusted to the sun coming up, or even the denial of why I was awake at that time. It could be the lack of activities I…
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Oh. Oh dear..
“I know, I am being hard on myself. And it isn’t too much of a big deal, but to me, it is. I should be a better patient. I’m good everywhere else, why is this so ‘difficult’ to do, manage, maintain?”
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GI Clinic – 21.07.15
“she – and many others – don’t understand how much of an emotional battle IBD can be. It can be hard to switch your mind off from what is going on, or what could happen… mentally preparing myself, is part and parcel of my disease.”
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Infliximab #13 – Not so unlucky for me!
“I take it as a win. The sniffles are a small price to pay for 7 weeks of good bowel behaviour in my eyes.”