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One year anniversary

 


Today marks two important milestones: firstly my Hickman line is 1 year old and I have managed to stay out of hospital for a year too!

I think this is the first Hickman line I’ve had that has made it to its first birthday, so this is quite a big deal. Most people have their lines in for years and years with no problems but in the past mine have blocked, split or become infected causing me to rack up a grand total of 17 lines in 10 years. But maybe my luck is changing…

And the fact I’ve been at home without any inpatient hospital stays for a whole year is a milestone I didn’t think I would see. 

2019-2023 was a particularly difficult four years where on average I spent more time in hospital than I did at home. And even when I was at home I was so ill I couldn’t get out of bed. There were some times during that period when I didn’t think I would live to see another Christmas because I was so, so unwell and I couldn’t see how I would ever recover. It was a long, hard slog and there were plenty of times I wanted to give up because surviving another day just meant more pain, more suffering and there didn’t seem to be an end in sight. 

But last year I was determined to be at home to see my kids go to prom and so I discharged myself from hospital earlier than the doctors advised. Since then I’ve taken baby steps forward and miraculously my bowel disease seems to be in remission. So many people ask me what I’ve done differently to make myself ‘well’ and the answer is nothing. Which is incredibly frustrating. Neither myself or my doctors have any idea what has caused me to be so unwell the past few years nor why I’ve been so well the last 12 months. It seems it’s down to plain old luck. 

But while I’ve been in this period of remission I’ve been determined to live. I’ve said yes to as many things as possible- gigs, theatre shows, cinema trips, outings with the kids, weekends away, a holiday abroad… most of which I could only dream of doing while I was lying in my hospital bed. 

I am not ‘fixed’ by any stretch of the imagination. I still have plenty of bad days where I cannot get out of bed and when the pain is unbearable but it’s just not every day now. Thank fuck. I know that there will come a time when my insides try to kill me again and I hear the tick, tock of the clock counting down in my head loud and clear but I have no idea when the bomb will go off. But go off it will; of that I am certain. It might be tomorrow or a month or even another year from now but until that happens I will do my best not let my illness rule my life. I will continue to say yes to things, I will make memories with my family and I will live. 

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