Firstly thank you so much for the wonderful response to my last blog post about Why Im Choosing to Have my Bowel Removed. I had so many messages and emails of support and so many from people facing their own battles. Every message is so greatly appreciated.
Today Im writing about feelings. About how I feel dealing with Ulcerative Colitis and how it affects me mentally and emotionally.
On Thursday my consultant upped my steroids again, I had tapered down but started flaring again. The meds don’t seem to be working. Im feeling worse and worse each day… Im waiting till 2pm so I can call my specialist nurse for advise on what to do next.
So here’s what Im feeling today…
Fear – Im afraid of what is going to happen to me – afraid of the medications, the thought of surgery. Im fearful that people will get fed up of me always being ill.
Sadness – Man, I feel so sad right now. It’s a sadness so deep it feels like a punch to the gut. Im VERY good at pasting a smile on my face and being the silly, happy joker but this sadness is creeping right through even my fakest of smiles.
Frustration – Im frustrated with my body, I wish I had a magic wand that would just make me not be sick…
Envy – I suppose this leads on from frustration. I envy people who are well and just wish I could have a normal body.
Anger – Im angry that this is the hand I have been dealt – I want to shout like a toddler ITS NOT BLOODY FAIR!
Anxiety – My anxiety levels are sky high, I lay in bed at night worrying about EVERYTHING.
Confusion – With all these other feelings going on it is probably not unusual that Im confused. At times I feel like I just want them to operate. Today. Then other times Im terrified and wonder if there are any other options. Should I be looking at a raw juice diet? What if I were more spiritual and started meditating and doing yoga every day? Perhaps if I could just lose weight it would be better? Or maybe it’s because I am stressed? Logically I know that I have a disease and this disease needs treating with medication, I didn’t do anything wrong to get this but at times I can’t help but blame myself.
Guilt – This is my biggy. I feel so guilty. All the time. I feel guilty that Im not the mother I should be because Im ill in bed. I feel guilty that my kids worry about my health. I feel guilty that the steroids make me have flashes of anger and I tell the kids off when they probably don’t deserve it. I feel guilty that my husband doesn’t have a ‘normal’ wife. I feel guilty that my friends and family have to help me out with childcare. I feel guilty that Im not pulling my weight with the business because Im laid in bed. I feel guilty that my husband has to take on both our roles. I feel guilty that I ruin days out because I need to be somewhere near a loo and then spend most of the day in the bathroom. I feel guilty that we can’t plan to do things because we don’t know how well I’ll be. I could go on forever… Guilt is a shit feeling.
Love – I thought Id end on a nice feeling. My husband is fab, he deals with my illness so well. He doesn’t pander to it, or treat me like a sick person. He takes the piss out of me. He makes me laugh. He sits with me when the insomnia kicks in and listens to my random questions about giraffes at 2am. He sends me to bed when he sees I am struggling. He takes on the roles that would usually be mine without complaint. He pinches my bum and tells me Im beautiful even when we both know I look like shit. He sits in bed with me and we play dice for hours. He tells me everything will be ok. He comes to my appointments and makes sure my voice is heard. He say ridiculously inappropriate things and makes me howl with laughter. He makes me feel better. He loves me.
Thanks for reading xxx