I’m definitely NOT on LSD. I am, however, on prescription drugs and anyone following the blog will know how much I hate them. I share my experience and thoughts on this aspect of my journey because I think it’s really important to be honest about it.
I am currently taking an anti seizure medication morning and night, and a steroid medication morning and afternoon. The doses I take of each have both been changed at various stages since my initial diagnosis, and continue to be.
My aim has always been to take as few medications as possible. I also understand that some are necessary.
In many ways, finding the medications balance has been, and remains, one of the hardest parts of my brain tumour journey. I don’t like feeling like I am not in full control over my body or my emotions. Plus I have overhanging trauma from the sheer mess that was made over the ‘phenytoin toxicity incident’.....
It’s not easy to trust medications when you’re extremely sensitive to them, know some of the statistics around their abuse, and have already been accidentally poisoned.
I lived with my brain tumour prior to diagnosis for many years; I just didn’t realise it. I served it with an eviction notice when it started abusing my hospitality in January last year (2017). That eviction notice was delivered from February to October through surgery, radiotherapy and chemotherapy. If this pesky tumour is absolutely determined to stay in residence then I intend to live with it for many, many years.
I understand this may necessitate some use of prescription drugs for my own safety and to ensure I’m giving myself the best chances possible. It remains impossible for me not to struggle with taking them though. I am ridiculously sensitive to them and every change, no matter how slight, is extremely difficult for me.
I am currently reducing steroid medication. Yet again, after 16 months I find myself still taking a drug that’s not recommended be taken for more than three..... Yes, it’s a low dose, but it’s 16 months and has been changed up and down enough times to make my head (literally) spin.
The latest reduction has had positive impacts and negative impacts. More energy sometimes, but also much less at other times. Less fluid retention in my joints, but more pain in them instead. Higher highs, lower lows. I’ll spare you other details...!
Thankfully I remain resolute about my ability to take each hit as it comes. And I’m exceptionally well supported, in particular by my poor hubby. I wake him every morning at 03.30am as I begin to toss and turn. If we’re lucky I manage to settle myself enough to stay in bed until after 05.00am. His patience knows no bounds. Both yesterday morning and this morning I was up at 05.30am, hanging washing out on the line and getting myself some breakfast. You know it’s bad when the dog doesn’t even get out of bed when you walk into the kitchen!
As ever, ongoing thanks to all my shining stars who continue to keep my mood up and sit behind me on the rollercoaster. But biggest thanks of all to my husband, who sits beside me right at the front of the coaster, holding my hand.
We’ll get there. We’re getting better at riding that coaster..... Taking it slowly, breathing deeply, holding hands. Xx
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