I get so tired of the fight, all it’s detours and juncture points.

I get so tired of the fight, all it’s detours and juncture points.

It’s not always the same fight but regardless, I’m tired. To quote a fellow Hydro sister: “I know I am here for God’s purpose and He knows my days here yet, I am tired of having to force my physical body to do what my spirit wants to do.” It’s ironic how much I can relate to this. Struggling with my cognitive function currently, on and off dizziness, unresolved thyroid issues and waking early hours of the morning with (still) unexplained severe abdominal pain. These are just some of the physical challenges I face right now.

When you desperately want the physical pain to stop!

I had a pre-op consult for a hemithyroidectomy booked in May but, brain surgery #6 took priority, the week before. Therefore, it was rescheduled a few months out.

Upcoming appointments

  • Just over a week – Thyroid surgeon consult
  • Two weeks later – 3-month post-op brain and repeat Cervical C-spine MRI (Fingers crossed all looks good with my spine and I avoid any further surgery). This will be a follow up per se of my C5/C6 spinal degeneration
  • Three weeks later, consult with Dr Tollesson (Neurosurgeon) to discuss my results and schedule my 6 month post-op consult and MRI. After that, it’ll switch to annual follow-ups.

If it’s not one thing, it’s the next. My headaches almost feel none existent and have settled down significantly. This is positive! My GP suggested taking Vitamin B and Gingko Biloba, to help my brain with its cognitive struggles. It’s only been a week so, too early to tell but, I’m hopeful it will help.

Seeking understanding

Recently I questioned why we even need to have suffering and was told:

Suffering and setbacks are part of the journey Celeste. No one is exempt from pain. We don’t get out of it, only we embrace all of who we are with Joys and sorrow”.

Somehow, I struggle with this. It’s not what I want to hear. I can’t accept it. If I have to be honest, it makes me feel all the more lonely and cements my belief that no one truly understands.

Unless you’re physically going through something or have in the past, you won’t understand the next person’s pain (physical or otherwise), or challenges…

Lack of faith on my part? Maybe…or could it be more that there’s been a change in me?

I will say though, context is a great source for true understanding.

Fooling myself

I naively think that having only one traumatic thing happen in your life should be enough. That it’s simply unfair to have more than one because that’s your quota. Knowing that it simply hasn’t been the case in my life, somehow makes me feel like someone, somewhere, is sitting with a little voodoo doll replica of me.

How do you say it’s been a good life when ill-health takes centre stage at every turn? Or, when you repeatedly become a victim of trauma and events, outside of your control? Also, the older you get, the more issues rear their ugly head! I guess it’s safe to say, I won’t be ageing gracefully…

The realist wins every time

I’m not one to “keep polishing a turd”, expecting it to somehow miraculously turn into something it will never be. The realist in me simply won’t allow it.

If I have to validate that for myself, or anyone else who needs it, then so be it.

Too often we tell each other not to be so negative, to take the bad with the good and to soldier on. If you show just a little sign of “feeling down”, you’re labelled “depressed”. Believe me, I have enough reason to be but I’m definitely not!

Show me one person who smiles in the midst of an unending storm.

I haven’t lost it just yet hence you won’t be seeing my pearly whites!

In the current climate, everyone’s state of their mental health should be a concern, especially those who are visibly struggling with it all. More especially, those who aren’t showing any visible telltale signs. Telling someone in a nutshell, to suck it up and be more positive, isn’t helpful. If anything, it causes feelings of extreme loneliness and despair. Most people with Hydrocephalus will tell you what a lonely world we live in, as it is.

The reality of Hydrocephalus

I’ve had a few conversations with different people over the past few months, explaining how the surgery I had in May, is no guarantee that I won’t be having more. I’ve been asked; “How do you live your life like that?” My response; “I don’t have a choice”. If I had to be optimistic…no wait, I simply couldn’t. I’m a realist, as I’ve said before. The number of surgeries I’ve had to go through since diagnosis has left me void of ever thinking that way. I don’t trust it (the condition)!

Valid question

I have to ask; Anyone reading this, who has Hydrocephalus, how easy is it for you to keep living life NOT expecting more surgeries?

I keep hearing that I have to change my mindset, not think so much about my condition and start living life. That I expected the worst after my first surgery, now 14 years ago yet, here I am. Still alive. Hmmm

Maybe I’m doing something wrong. Maybe I’m just one of THOSE negative people. However, I’d like to think I’m not.

Believe me, I hear myself and it sucks!

Forever the Optimist

Well meaning people in my life are optimistic, have an optimum level of faith and walk with the constant thought that this is it. No more surgery. These are people who don’t have Hydrocephalus themselves, nor do they understand or know enough about it, just for clarity. I know better. I have to. The words NO CURE actually mean something to me.

The bottom line is, everyone has their own challenges to deal with, whichever way any of us choose to do that, is up to each individual.

My reality, right now

I’ve been left with some damage as I mentioned in a previous post and, it’s affecting my recovery. I still have moments where I struggle with something, which should be second nature, and break down in tears. But, these moments are becoming less. My life feels like it’s playing out in a slow motion movie, with one frame every hour. Painful!

It’s the kind of setback that leaves me feeling fearful of what the next operation might hold in store. Even this fear has been downplayed by those I chose to admit it to, leaving me to feel unheard, dismissed, heavy burdened and lonely (again)!

The thing is, we don’t simply walk in and out of these operating rooms and hospitals unscathed. If something should go wrong, there’s no telling if, or when, we’ll return to 100% “normality”. Also, should that percentage be lower, and fall outside the scope of our recovery, we have an added challenge to overcome. We have to find a way around it, to simply survive.

Sometimes, yes, surgery goes well and we live to see another day. We recover without any effects and slip back into the mainstream of life. I’ve been through that before and, naively, took it for granted that this time would be just like all the others. I was wrong!

It’s OK to say you’ve had enough…

(Others will definitely not agree with me on this, and that’s OK).

A conversation not too long ago, about wishing “You could go home i.e. Heaven”, arose. I fully understand the driving force behind this. I literally found myself praying the night before this, as I drifted off to sleep, saying: “God. Why didn’t you just let me slip away in May? It would have been so easy because I had the brain bleed and, I would have been unaware. It would have been easy enough.” (I know fully it doesn’t work that way but, it doesn’t stop me asking). In saying this, I know that my family would have felt the loss of me but, in that moment, it wasn’t about them. It was the culmination of it all (my entire life) and, I felt justified in my way of thinking.

I have never feared death, thanks to my upbringing, which is why I have no problem When death comes in the morning…

It’s not negative or selfish. I think we all have a right to say when enough is enough…and no, I’m not saying suicide is the answer. It’s a sensitive topic and I won’t minimise the long lasting effects of such a decision or act – for anyone involved.

It needs to be OK to say…Otherwise, people end up feeling like they have no outlet and inevitably, see no way out.

You never know what someone else is going through because you aren’t walking in their shoes.

I wish it weren’t the case but I’ve given up on myself. I feel broken and I have no idea how to fix any of it…

I’ve been fighting for the longest time, thinking I should be someone else’s version of me. Even now, I feel like I have to be more positive, find the silver lining and write something more encouraging and uplifting. I can’t do it. Not in this moment. I have my good days but I also have days where I see my situation for what it truly is. Feeling tired of the same old shit, over and over, is not wrong. That’s my conclusion and I’m sticking to it.

Time, an undefined commodity in the recovery of a brain injured person. Here’s how you can help!

If you’re on the outside looking in, wondering how you can help (anyone you know who might be going through the same thing as me), this would be my advice.

Patience, understanding, kindness and care are probably some of the more important things you can offer. AND, not giving up on someone when, and if, they’ve given up on themselves…I’m not saying it will be easy either so, brace yourself!

Just how long my recovery will take is undefined. The brain goes through quite a bit when you have surgery and, I certainly did this time.

Unfortunately, I have no doubt I will lose some more people along the way, people who simply don’t understand or feel like I’m “ignoring” them. This is simply not true. My circumstances currently dictate much of what you observe from the outside. I feel it too. I too am watching it all unfold, though it be in super slow motion.

And, I’m powerless to stop or change it!

I have hope..!

Despite all of the above, I’m hopeful my way of thinking and situation will change in time AND, that I will return to a version of me, pre-op…Without that hope, I don’t know where I’d be…

This post may have taken me more than 3 weeks to get to this point BUT, pushing the publish button means I’ve done it. No matter how long it takes me to do things these days, I’ll get to where I need to be!

PS. Still not depressed, just over it!

1 Comment

  • Sasha Lott

    August 7, 2021 at 8:50 am Reply

    Bless you, I totally get it, many won’t but I guess we keep fighting on, sadly it’s downhill all the way the older you get XXX it’s nice to read a viewpoint from where we are x

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