It’s been a busy week, work, radio show, hospital visits and finding out that my next surgery is going to be a tad more complex than I originally thought. I wrote about it in my last blog, so I won’t bore you again but basically, it is going to be a long op with an even longer recovery.
I am really struggling with pain, I take a lot of painkillers every day, spend a lot of time laid in bed and pretty much have a hot water bottle strapped to me at all times. There are a lot of things worrying me right now, but the main thing that is upsetting me is that I just want to dance.
I know this might sound stupid, I should be concerned about the upcoming op rather than having a boogie, but honestly, I’d give anything to just be able to have a full on, throwing myself about the room, bounce up and down, shake what your momma gave you dance. I’m a terrible dancer, but I love it, I enjoy having a good old boogie and I miss it!
I’m so fed up of the limitations of my body, the pain is constant, gnawing and just being stood upright for more than 10 minutes is really painful. I want to walk my dogs, I want to ride a bike, I want to go swimming, go to yoga, work in the allotment, but most of all I want to dance. I don’t care if it is in a club or a bar or just in my kitchen, I want to dance my heart out without feeling like my insides are going to burst out of my belly.
There are a lot of struggles when you have a chronic illness, the ulcerative colitis was debilitating for years and then I thought the ileostomy would be the answer to all my prayers. It has just been one thing after the other, going through j-pouch surgery and then 18 months of chronic pouchitis till I had to have it removed along with my butt hole was such a challenge. Now the past few years, my life is just taken over by the hernias and the pain.
Since September last year, when I got my newest parastomal hernia, life has been getting progressively harder. I now have two hernias, the parastomal one is huge and it’s a constant dragging pain, the smaller one is actually a lot less painful most of the time but then every now and then (if I cough, sneeze, strain) the hernia comes out and it’s like being stabbed.
I can barely walk most days, sometimes I feel much better and I am able to walk a little and get out of bed but I know those days are followed by worse pain. This week, after hearing about how complex the operation is going to be and that I have a 75% chance of complications, I just thought ‘fuck it’. I have pushed myself and been out with friends for three days in a row, painful, exhausting and fuelled by painkillers, but I just wanted a little bit of normal, a bit of fun, just some time away from my bed.
I’m trying to not let this all get me too down. I mean, I am accepting it and being reasonable, but I have come off my antidepressants and so I am very aware of my mental health right now and monitoring if my sadness is within ‘normal’ ranges, if that makes sense. And so I can’t let myself sink, I need to keep my chin up and be accepting of my life but also keep positive for the future.
There are many things that keep me going when things are tough, my family, friends, work. But the one thing I keep thinking is that I am going to kick ass at this recovery, I’m going to follow the rules, rest, exercise, take time off work, no lifting etc blah blah blah and then this WILL BE a successful op, I will be totally sorted and by Christmas 2019 I will be dancing, arms in the air, ass shaking, wiggling hips and dancing my heart out and it will be all ok.
Because I have to try and think positively, even if inside I am terrified that things will go wrong and pissed off that this is what my life is like. I need to focus on something, and to be honest, there’s not much point in thinking too big, honestly, I will just be happy when I can dance again.
What is the one thing that if I could wave a magic wand right now, you would be able to do?