So I normally write about the kids, but I’m going to ramble about my latest hospital visits this time.
In a week I had an Esmolol Challenge to test for reactions in taking beta blockers, a gastroscopy and a Cystoscopy. I had positive results from both of the first two tests but when it came to the Cystoscopy I have to admit I came out devastated.
I am 28 years old, the last thing I wanted to hear was that from now on I will need to self catheterise due to the muscles in my bladder failing to work properly. No medication or surgery will fix this. This is another wonderful side effect of Ehlers Danlos Syndrome Type 3 a genetic collagen defect I was born with. If I’m honest I felt like I have been kicked while I am down this week, life is stressful and I am feeling depressed about my health in a way I never have before. I want to keep a positive attitude but excuse my bad language. Why the bloody hell should I anymore? My body is behaving much older than my mind and I feel betrayed.
Betrayed by my joints, betrayed by my heart rate but mostly recently betrayed by my bladder. Not to be brutal or disgusting but I don’t want to put a plastic tube into my urethra up into my bladder 3 times a day for the foreseeable future. This will eventually lead to a permanent catheter a long way down the road. Do you want to know what the worst part is? I’ll tell you. The doctors suspect I passed this condition to two of our children, so this could be their future too. I have mentioned I feel guilty before but this goes way beyond that feeling. I want a rewind button, I want to not have possibly given them this future. I wouldn’t change having them but I would change my guilty feelings. It’s like a weight that’s getting to heavy to bear. There comes a time when you need to share this kind of burden so that’s what I’m doing now.
So forgive me while I sulk for a few days or weeks, I’ll get used to the new changes for my health and until then I just need to be sad and stamp my feet like a toddler and scream it’s not fair. If im snappy or I cancel plans with you don’t think it’s you because honestly everything feels so hard to do right now and I promise I am doing my best. Above all I love you all and I’m grateful for having you in my life.