I’ve been feeling like I can do this, get to full recovery in a month, but…

I’ve been feeling like I can do this, get to full recovery in a month, but…

It’s been harder than I anticipated. Maybe I rushed it. Maybe I didn’t rest enough. Or, maybe this time, brain surgery has taken its toll on me.

I’ve been feeling like I need to be stronger than I am, in all areas of my life: physically, mentally and spiritually. Thinking that if I’m not, somehow, I’ve failed.

We underestimate the time our bodies and, more specifically, our brain needs to recover from the trauma of brain surgery.

To be fair, the surgery didn’t go without any complications. I need to constantly remind myself of this.

After my first ETV, just over 11 years ago, I was off work for a little over two months (including hospital time), before returning. And, even that return to work, required more effort from me than I had to put in, before my operations. In time, I got back to where I was before, and even better, because I was harder on myself, always expecting more. I suspect my recovery took longer then because it didn’t go smoothly either, 3 operations over 3 days!

Coincidentally, I felt inadequate beyond return then too!

If my repeat ETV (5 weeks ago) went smoothly without any issues, I’d expect to be in a better state right now, physically and mentally. But, the fact of the matter is, it didn’t. I’m not a surgeon. I don’t know the full ramifications of a brain bleed. I’m just a patient who unfortunately had this happen during surgery.

Big deal or not, that’s debatable, depending on who you are.

The first week and a bit after being discharged from hospital, I woke up with headaches in the morning and pain at my incision site. I’ve been having a burning/pulling feeling around my burr hole as well. But, I’d assume that’s to be expected. Then, it all went away, just like that. No headache. No more daily dizziness, which plagued me pre-op. I felt good enough and confident that I could return to my day job so, on Monday, I did. The way I saw it, working from home should help with me easing into it, right?

But, I felt tired soon enough during the day, feeling like I need to rest. Waking up for work and sitting through a full day, felt like it was simply too much. Attempting to use my brain for something other than what I have been over the last few weeks, feels foreign. Then, a few days ago, I woke up with a strange dizziness and a familiar “swinging a cat and flinging it across the room” sensation (figuratively speaking, of course). This continued a few different times throughout the day and it hasn’t eased off.

PS. I’m the cat in this scenario!

In fact, it feels more like my brain is quick sand and every attempt I make at thinking or using my noggin, is being held back with a struggling sinking sensation. It leaves me feeling powerless to move and unable to make progress of any kind!

The fact of the matter is, I can force myself to just sit quietly and do nothing. Force myself to rest but, I can’t switch my brain off. The constant “chatter” of worry or things that need to get done runs races in my head. And, before anyone tells me to not do this, some things simply HAVE to be done and that which doesn’t, I’ve successfully ignored! (Like cleaning the house – not as important. I do what I can and look past the rest).

For example: This week, I picked up an enrolment form from the high school for my daughter for next year. It’s been 5 days and I haven’t been able to finish filling it in. Normally, it would take me an hour at most, with the form being handed back the next day. Not this time. I’m finding that I’m struggling to focus, concentrate and do simple tasks, requiring a bit more effort from my brain. Sigh..!

My concerns in life are constantly for the well-being of my family, more specifically, my children. I need to be well enough to work so I can earn a salary to provide for them. Knowing I have more surgery coming up to have half my thyroid removed is lurking in the back of my mind and weighs heavily. More especially, because I can feel this damned nodule against my oesophagus. How much of this can my body handle without it impacting negatively on me? However, in saying that, it’s not really me I’m worried about most…

One thing at a time! Rinse, repeat…breathe!

I have my post op MRI tonight at 8:20pm (Times sure have changed if this is what I’m doing on a Saturday night!) and my follow up consult with Dr Tollesson on Monday morning. Regardless of the way I feel, I’m hoping for a clean bill of health and that the strange dizziness of the last few days, is just something simple, like me not being true to my word of taking it moment by moment.

I AM my own worst enemy…for the most part🤷🏻‍♀️

Thankfully, I still have a job for which I am truly grateful even though I feel like I’m slipping cognitively. BUT, my view of life seems to have changed after this surgery. I don’t like the fact that I need money to survive and, in order to have that, I need to work.

If only the lottery will fall in my favour! (Says every person, who needs it, in unison!) At least then a month can turn into a lifetime to recover…Now that would be awesome!

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

4 Comments

  • Marianne Koenig

    June 12, 2021 at 11:53 pm Reply

    Hang in there. You said everything I have been feeling about my own recovery since my last shunt surgery. You are in my thoughts and prayers every day. Recovery I have found for me takes a delicate balance of keeping going, getting back to the routine but listening to my body and letting it tell me when it needs rest. Know that you are not the only one there are many you have helped and who love you praying for you and pulling for you.

    • Skyewaters

      June 13, 2021 at 11:47 pm Reply

      That balance is what I’m trying to find and think I have, mostly. It’s weird though. You think you’re fine until you’re not. I’m pulling back a bit and giving myself chance to recover.
      Thank you for your kind words💙

  • Jennifer C Lane

    June 12, 2021 at 5:52 pm Reply

    Hang in there… It can take longer than we would like sometimes. It sounds like you are doing well with all that you have been through. Thinking of you and wishing you well.

    • Skyewaters

      June 12, 2021 at 9:18 pm Reply

      Thank you! I’m trying.💙

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