So finally I get to write an update about what’s been going on while I’ve been in hospital and how things have been since I’ve come home. I know a lot of my friends and family have been eager for a more detailed update and would also like to know what’s going to happen moving forward. I would have written this sooner, but honestly there’s been a few complications over the last 14 days, which has affected my vision and my ability to type, so sorry this is a little later than expected.
This is like 2 updates in one so I’d suggest you grab some honey roasted peanuts and a can of Canada Dry Ginger Ale now while you have the chance.
A lot of you may have read an introduction to my current health situation in (463 Days.) and I ended that post on a bit of a cliff hanger since I was going into hospital that week.
It’s honestly been a really difficult few weeks, it’s been a lot harder than I thought it would be. Which is strange for me, because I normally think the worst in these kinds of situations and then usually I’m pleasantly surprised at how it all goes, but this time unfortunately the reverse happened.
I was admitted into a very special Neurosurgical hospital up in Liverpool called The Walton Centre, on the 16th June. It’s a pretty long drive for us, 3-4hrs.. but it’s SO worth it because of the top consultants and specialised nursing staff they have. Not to mention, I have fallen in love with the Liverpool accent even though I never really understand what they are saying to me.. ?
I want to take this opportunity before I get too far into the story, to just say a humongous thank you to my Mom. She has honestly been so incredible and strong through out this whole thing. It hasn’t been easy for her to be in this situation, staying in an unknown city without my Dad. But she just get’s on with it! I really can’t thank her enough.. I know she’s probably going to say “I’m your mom, that’s just what we do”.. but I still fully appreciate the sacrifices she makes for me and how hard she works while also having to care for me at home and in hospital. Dad would be so proud of you. ❤️
A little bit about hospital life.
So, I was in a ward room with 4 other beds, and had the privilege of meeting some incredible women during my stay there. I will never forget being around such brave women facing life or death as well as so much pain, and yet still having such positive attitudes. They have been such an inspiration to me. Also, I got to know a lot of the nursing staff and made some really great friendships during my stay. (You know who you all are!) It’s amazing how much of a pick me up it can be, when one of the young women looking after you just happens to mention beauty bloggers Jaclyn Hill and Nicole G on YouTube and all of a sudden you find out you both strictly follow exactly the same 2 girls from America. ..When you’re really sick and recovering from surgery, there’s nothing better than being able to talk about something other than illness and pain. (Thank you Paige!)
One of the elements in the hospital world that you have to get used to are “Obs” aka Observations. Every 4 hours or sometimes less, the nurses will come and check blood pressure, oxygen saturation, pulse, body temperature, pupil activity, and strength/weakness in the arms and legs. You can imagine all of this activity gives you constant broken sleep but.. it is all for a good reason. I just felt like I could never quite allow myself to sleep deeply incase I suddenly got woken up and I jumped like a ninja knocking some poor nurse out. ?
Time to go.
The morning of the operation, we were woken up at the crack of dawn to shower and wash our hair with special hospital grade antiseptic stuff, which as you can imagine is totally void of any volume or conditioner. We then had to put on the sexy hospital outfits with thigh high hospital socks… I looked ridiculous. ?
All of a sudden it was my time to go down to Theatre and I actually felt quite calm about it all. I experienced this unexplainable peace that made absolutely no sense, but I knew where it was coming from. (“Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Philippians 4:7)
Augustine writes: “God alone is the place of peace that cannot be disturbed.” And he was right, God’s peace, the peace that I was experiencing, is not affected by the circumstances we find ourselves in or the feelings we have, it never cowers away. Instead it rests on us, undisturbed and unexplainable.
So I was wheeled into the Anaesthetic room where there’s a strong smell of needles, rubbing alcohol, and pure oxygen. I was greeted by 4 or 5 really lovely doctors and nurses who were all in charge of making sure I remained asleep and they quickly began the process.
Every time I go under General Anaesthetic, I pray the whole time as I go to sleep. You never know in operations, even the simplest of procedures could go wrong, and I always like to face that by talking to God as I go unconscious. Being in that situation makes you really see what’s actually important in life, instead of the fluff we sometimes make it to be.
After the operation.
Almost immediately I woke up in recovery, and I was in overwhelming pain. My throat and voice hurt so much from having the tube down my throat and I also had to keep telling the nurses around me by talking with my hands that my head felt wet, which was not normal. The wetness I felt was the blood and CSF fluid from the brain coming out of the wound… this would happen for a while. (I am 100% sure that this was some of the pressure inside my head being released through the hole they drilled into my skull.) People then started scurrying around me, always looking at my pupils, and saying that something didn’t look right. I guess with the amount of leakage I was having and the fact that my pupils were not equal and reactive was a red flag. They called one of the surgeons out of theatre and I was told I’d need to be monitored incase it got even worse. So I spent longer in recovery than any of the others having the same procedure, but that wasn’t really my main problem… The pain was. I have never felt such excruciating pain in my life. I honestly did not think it would be as bad or as intense as it was. I’ve been in pain before, I’d even say after having some other surgeries and issues that I’ve felt great pain, BUT it was nothing like this. I started thinking to myself how much pain can a human really endure. I could literally feel this deep, sharp hole going into my brain.
I finally got taken up to my ward and I was just going in and out of consciousness because the pain was so bad. Thankfully, after an hour they got it under some control, but it did end up lasting for a couple of days.
Intracranial Pressure Monitoring
During the next 3 days, I was hooked up to a monitor and laptop that recorded the pressure inside my head. (picture above) They were able to do this by drilling a hole into my skull and inserting a sensor deep into my brain. It was one of the hardest and most unpleasant 3 days I’ve had in a very long time. To top all that off, I had severe bladder retention during that time as well. – Sometimes when you’ve had a GA, it can put the bladder to sleep for much longer and it makes it difficult for the bladder to start working again.
Only those who have ever experienced not being able to pee like that, will understand the agony and pain that comes with it. But it’s kinda funny (but not really) that even going through this situation taught me a lot. I remember I lay there thinking there’s literally nothing I can do now apart from pray and to keep thanking God for how good He is despite the circumstances I was in. Some of you reading this may think, “Why on earth would that be that place you turn to during something like that?”. Well, when you’re in so much pain and there’s no where else to turn, (there’s even a point where doctors cannot help you – seriously), I knew deep down I HAD to keep focusing on God and trusting Him to get me through it. And He did. He answered my prayers.
Doing this taught me what a “sacrifice of praise” really is… Choosing to pray and keep thanking God for who He is and all that He’s done for me, despite how I was feeling and the painful situation I was in.
My Questions to God.
I’ll be real though… there were moments when the pain was at it’s worst, and I kept asking God, “Why me?”.
Why do I have to go through this? Why not all those people who I’ve been told have been talking about me behind my back? Why not that person who has tried to take me down? Why not those who intend to do me harm? Didn’t I just lose my Dad God? Why is it okay that I have to suffer so much? Why allow me to go through 3 years of non-stop pain, both physical and emotional? Why me God?
And you know… it’s totally okay to ask God, to question, to be confused, to be frustrated. Whatever your views on God are, He actually wants us to be 100% honest and transparent with Him, even in our darkest moments. God is big enough to handle it, He’s not fragile. You also can’t fool Him, you can’t put up a front with God because he knows your heart better than you know yourself.
So once I had a 10 minute pity party, I thought to myself.. “Why not me?” My life isn’t worth more than someone else’s. People suffer and go through stuff every day worse than this! But it’s down to me whether I’m going to choose to be stronger because of it or turn away and become weaker. I want to become stronger, more resilient, and wiser. I’m definitely not saying it’s easy or that I always choose this option and stick with it… But this is a resolve I always have in the back of my mind.
So after my brain was attached to a monitor for 3 days, I was finally disconnected, and I could actually get up out of my bed and walk to the bathroom! It’s the simple things in life.
The results showed that I did have spikes of high pressure, and even my mom said when they first brought me back the monitor was going to crazy… but thank God it settled a little (probably due to all the fluid released after the operation) and the high pressure spikes didn’t last long enough to require an immediate shunt in my brain. This was great news.. although bittersweet because there are still many unanswered questions about what is going on to make me so ill.
There were some concerns for my eyes still as I was having a lot of double vision and difficulty moving my eyeballs, so I was sent for what felt like 100 tests and scans on my eyes. But I was SO impressed at how thorough they were at The Walton and how despite there being like 50 people in the waiting room, I was wheeled in with my wheelchair straight away! During the two and half hours of getting all this done, I had the privilege of being chaperoned by such an incredible woman, we talked the entire time! (Thank you Liz!)
The brain MRI flow study I had the next day showed that the opening of my skull is actually wider than it should be, and so a part of my brain has slipped down and has started to herniate out of my skull. They have diagnosed this as a mild Chiari malformation. However, at present, they don’t think this is the cause of the pain and sickness… or rather they want to rule out a few more things first before going down that road. So for now I’m being sent back up to Liverpool to another Neurologist on the team for an assessment – checking the nerves and electrics of the brain etc. After that, the consultants will meet and decide whether to revisit this Chiari malformation or what needs to happen next.
Now those are just the facts I’ve been given. I’m still holding on to this truth, that I know God’s got this and I am safely in the palm of his hands. I truly believe that when Jesus died on that cross, he not only died for my sins, but for all my sicknesses as well. So I completely trust him. Some people may think that’s a bit of an odd way to think, but all I can tell you is that I have this unexplainable peace I feel deep inside of me. Is the day to day still difficult and painful? Yes. Does that mean I’m never going to experience suffering? No. But what it does mean, is that I know where my hope comes from.
So after being in hospital for 6 days, I pushed really hard to go home because I just wasn’t getting any rest there. Unfortunately since I’ve been back I’ve struggled a lot, especially with some side effects. These have been issues like vision problems (hardly being able to see or to move my eyeballs sometimes), difficulty typing (co-ordination) and thinking, severe nausea, dizziness and weakness and a lot of pain. I am still focusing on the positives and taking one day at a time, even though a lot of things are still up in the air. I wish I had some more concrete answers, but I honestly trust God with my life so I will endeavour to keep being active even from my bed. ?
I’ve already written what seems like a novel, so I’ll leave it there for this first update. But I will definitely be revisiting some topics I mentioned on here in future posts as well as more updates.
Congratulations for making it this far down the post. ?
Sorry if this hasn’t been as articulate or smooth as my other posts… It’s taken me 14 days to write this due to some side effects, but I wanted to make sure I got something out there for you guys. I’ll endeavour to be more active now that I’m home, but please bear with me. ?