It’s been a while since I’ve been able to string two sentences together, read on to find out why…
My last surgery (at the beginning of May) and recovery have been unlike anything I’ve experienced before. My expectations weren’t high however, truth be told, I had a feeling something might go wrong. Exactly what that would be, I did not know nor did I anticipate a brain bleed.
My brain has definitely felt the effects of internal blunt force trauma, more specifically, my brain cells feel dead. Literally. In fact, it’s still ongoing. I fell backwards twice since being discharged. Sitting on my haunches proved to be more challenging than I knew, due to my lack of balance. Maybe it’s because I was stuck in a hospital bed for 14 days, who knows.
My first night home, I fell backwards into the kitchen cupboard after going down to say hello to my dog, Jesse. The second time I fell smack bang into a shelf behind me, at the grocery store, after bending down to smell some candles on the bottom shelf. Hitting my back and knocking the back of my head hard on a shelf, caused me to feel like a complete idiot! Thankfully I wasn’t alone but it left my 17-year old son visibly scarred. I can only imagine looking like a drunk to anyone who witnessed it. It’s been a sluggish, almost sloth-like return to, dare I say it…”normalcy”? It feels foreign to me. I feel changed and not for the better.
A few days ago, I thought some more about it all and how I’ve been affected. It reminded me of the journey thus far. From diagnosis to first brain surgery to feeling the effects of short term memory loss. Every step a learning curve, rude awakening and a step further away from the me I know. Having to relearn some basic things, finding coping mechanisms and strategies to deal with the cognitive challenges. A struggle and all round battle from the start, none of which has been easy and seems never ending. Truth be told, nothing could ever have prepared me for any of it.
I feel like I’ve been left with a different kind of burden and I can’t figure out how to cope, survive or get through it.
It’s hard and so very frustrating!
A previous surgeons words ringing true in my head, annoying but constant: “Each time we operate, we do more harm than good…”. He was the one with a god-like complex, his words now, feeling like an “I told you so moment”.
I have no doubt these operations cause harm, out of the six I’ve had, this has been the worst in terms of recovery and effect.
Since my surgery, I’ve felt like there are those who might be thinking “Why did you push so hard?” Or “Did you really need this surgery?”. And, even though some of this might all just be in my head (pun intended), some conversations I’ve had and comments I’ve read, have certainly led me to it.
The brutal reality of it all
Being diagnosed with Hydrocephalus, bearing the weight and burden of the condition and having the responsibility of knowing when there are signs of treatment failure, is enormous. How could anyone expect me to treat it any other way? To break it down simply, all the signs and symptoms were there a few years ago, probably since 2012/13. No one listened and even if they did, they didn’t hear what I was saying. Therefore, the onus was, and always will be, on me to recognise it and find someone who will listen but more importantly, hear what I have to say. It’s been a struggle to get to the pre-op stage. Thanks to my latest experience, it took a well-trained pair of eyes to see that the ETV stoma (hole) was too small and the reason for the symptoms I have been experiencing. There was one other doctor who thought out loud saying; “It could be failing intermittently” but, they never explored that theory any further. Despite my eye tests showing that everything was normal, the escalating effects became visibly clear to me.
We lose too much…
I feel like I’ve lost quite a bit since I’ve been diagnosed. I simply refused to lose my eyesight too! After the intermittent vision loss episodes over the last few years, I’ve been feeling like I am at the mercy of something much bigger and stronger than me. Some days it feels sinister, toying with me and laughing at my dis-ease. Sure, it could have gone either way during surgery but the fact is, I survived it. I didn’t lose my life. Thankfully, my surgeon was skilled enough to control the brain bleed I suffered.
The only thing I could control up till now, was to seek a private consult (again) and agree to have the surgery, when presented with the option. However, the fact is, it’s not a choice…not when you think of the alternative. Some would argue that if I didn’t have the surgery, I could very well just have carried on as I had been. But, that would have meant living at the mercy of unbearable pressure headaches, sleepless nights, vision loss and the unknown of whether my eyesight would just go completely one day. OR worse.
(Despite knowing the truth of this condition). The finding on my last MRI left me with a sinking feeling: “Third ventricle widely patent. Aqueductal stenosis as before”. Aqueductal stenosis (the cause of my Hydro) does not just go away or fix itself & just because my ETV has been redone, I’m not miraculously cured either!
It’s not fair and certainly no way to live. There is no quality of life. (A point I would argue strongly now, with the same surgeon with his god-like complex).
Do I fear having more surgery?
Of course I do! If anything, this surgery has brought home so much of the reality of the condition to me, that it scares me to think about the future. I’m struggling to function, especially cognitively. Thoughts get stuck in my brain, which feels like quicksand. Responding to messages or emails takes days or weeks. (I used to pride myself on responding almost immediately because it’s the right thing to do). Just putting this blog post together has taken me almost 3 weeks, something I would normally do within an hour or two. I feel the physical effects of not being able to push my thinking forward or get anything done. I feel powerless, helpless, physically weak but, mainly…incompetent and inadequate.
The emotional roller coaster
I’ve been feeling more emotional than I care to admit. Crying uncontrollably comes so easy (when I allow myself the time), and there’s just no particular trigger required because it feels like my world has changed. It almost feels like PTSD (post traumatic stress disorder), which I assume is an after effect of surgery. This is not a foreign feeling as I recall feeling this way before. It’s gut wrenching and can leave you feeling all sorts of nastiness.
But, I smile. I partake in life that simply carries on around me, with those in my life, 100% oblivious. Even if I say it, I’m told to stop being so hard on myself, that I’ll be “OK” and that all I need is time. (All well meaning, I know). Regardless, it’s time which requires patience, something God has not blessed me with! And, what if it takes too long or longer than others expect..? I have responsibilities, a job and so much more depending on me…
My biggest fear
My brain is my money maker! I fear not being able to pull through this, affecting my ability to provide for my family. There are no guarantees and quite frankly, I fear never being the same again. (If I had to be honest, regardless of whether I recover fully, physically, I probably will be changed in some way). It’s scaring the crap out of me.
I just don’t know if this is an injury that will heal in time or, if it’s an injury that requires me to make some life adjustments..? Before it’s too late. What I do know is, trying to make those changes feels virtually impossible at this point in time. Reading that a brain bleed kills off your brain cells doesn’t help with my level of comfort in any way.
Am I ok?
People are kind enough to ask how I’m doing but, truthfully, I don’t feel like I can answer them. Nor do I want to, as I shy away from it prematurely. I appreciate the care and concern but how do I explain any of the above in a way that they can understand? I’m struggling. FACT! I know I’m not OK but for now, I’m working my way towards being OK with that. The struggle I find myself dealing with is both outward and inward.
What I’m doing to cope
I’m used to juggling 10 balls at a time successfully. After my last surgery, that’s been reduced to -1 and it takes me an undetermined amount of time to complete anything, hence my feeling of incompetence and inadequacy. However, I constantly remind myself that I am far from that and WILL get through this. I HAVE TO!!!
- I force myself to do one thing at a time until it’s done.
- Allowing myself to take longer, to rest when I need to and to take time out.
- If that means sitting in the sun, listening to the birds around me or going for a five minute walk, then so be it.
- If it means allowing myself to let the emotions surface and cry my heart out, without feeling like I’m weak, then so be it.
- I find one thing of interest to get me going, serving as a resuscitation of sorts for my brain, then try to follow through.
- My GP recommended taking some Vitamin B and Ginkgo Biloba (whether it’ll help or not, time will tell. At this stage, I’m prepared to try anything).
Only those who truly know me, will understand how difficult all of this is…
A day might turn into a week or longer but, every slug gets to where it needs to be and so too does every sloth. Putting one foot in front of the other gets the job done. If that’s what I have to do, and the pace I need to follow, then so be it…