oooooWeee. It’s been a minute since I last wrote an update on here… and it has been driving me craaaaazy because I really want to be consistent and the goal I set for myself was to get into a writing routine 4 weeks after surgery, but unforeseeable complications have made that almost impossible.
I last left off updating on the surgery and the aftermath, but since then things have taken a little detour, which has slowed down recovery and progression. But let me start with the good news, (*hallelujah music*) since the leaking of CSF and blood during my intracranial pressure monitoring, I have seen a big difference in my pressure headaches. Although they haven’t gone completely, I’m currently not waking up paralysed by pain, which was happening on a daily basis – this is definitely a win in my book and possibly another piece to the puzzle, Thank You God! I’m still on 3 different pain killers including morphine, but this little improvement gives me hope!
During and after surgery, I noticed a massive change in my vision like double vision, blurriness, etc. I thought maybe it was because of the stress of the operation and having the sensor inside my head, and that eventually it would calm down, but unfortunately it got worse. After a visit to my GP I was told they were concerned that the anti-seizure medication I was on could cause some of these visual disturbances to be permanent and I was to come off of this medication straight away. Now, with this particular drug you have to be super careful about how you take yourself off of it because of its effect on the brain, and usually its takes between 3 – 6 months. I had to do it in 2 weeks. ?
I have to be honest, withdrawal has been tougher than recovery from surgery. I’m still “in it” and I never want to have to go through this again, so my big advice to anyone who’s listening.. always think carefully before you go on such strong medication because it’s a long road back.
Within this withdrawal, there’s been some quite scary complications, including some cardiac episodes and damage to my left eye. Over night I’ve gone from not needing glasses to getting the same prescription in my left eye as someone in their 50s or 60s. My left pupil is also not working correctly, one night it stopped working all together and wouldn’t even react to light. This is causing the doctor the most concern.
So at the moment my eyes are the more pressing issue, but until my brain gets used to being off this particular type of medication, they can’t tell if there’s permanent damage or why these complications are happening and if they are related. I’m also still waiting to go back up to Liverpool to be reassessed by another Neurologist, so I’m praying this happens soon and I can get one step closer to finally finding out everything that’s going on.
It’s not all doom and gloom though. Yeah it does feel like this has been the longest 18months ever, but God has really blessed me through it and taught me so much. I know that my God is bigger than any complication, any side effect and any damage, so I’m in the best hands.
I’ve also been on a serious mission to lose the weight I’ve gained from the medication and by being bed bound for 8 months. And anyone who knows me will know how much I miss my gym!! It’s not been easy dieting while battling severe nausea because all the things you should be eating, absolutely revolt you, but all credit to God I have been doing it and the results can speak for themselves. I’m also hoping that coming off a couple of the drugs will stop me from losing more hair and allow my skin to heal from all the sores. I just want to look in the mirror and see me again. I know it’s going to happen because I’ve seen glimpses.
The damage to my vision has been the main reason why it’s been difficult to get back into a writing routine, but I’m hopefully going to have some temporary help soon in the form of new special glasses! So if you see any typos or missing words… give me a pass from the grammar and spelling police for now – because I can hardly see!
I’m still housebound for the moment but I’m hoping this will change very soon as well and I can get out a little more when I get my strength back! I have 2 girls in particular who are at the top of my list!! Triple T time.
So that’s about it… I hate that this post feels a little me me me, and I promise I will be able to get back to writing about topics close to my heart in the very near future, so keep your eyes peeled… But I needed one place to be able to update family and friends, and those following my journey. Also, when I look back on these posts, years from now, I want to see God’s hand in all the details and remember all the ups and downs.
You can’t know where you’re going unless you know where you’ve come from.
Thank you for all the support, prayers and love.