The most important daily reminder to myself; “You’ve just had brain surgery! Take it easy on yourself”

I repeat this as soon as I catch myself being too hard on the one person who doesn’t need it: ME

Brain surgery does not leave you unscathed…the after effects are real and, under the right circumstances, can have a negative effect! It’s what you do after the fact that matters most…

Celeste A. Marriday

Hopefully this is not the downward spiral of Skyewaters…

I’ve been quiet for a while, I know. Some people have noticed, others may not have – and that’s ok.  To those who have reached out to me with texts and messages, I’m not ignoring you. Sorry I haven’t responded yet, that’s not normal for me. I’ve always prided myself on being responsive and answering my emails, messages or missed calls – a case of treating others as you’d like to be treated (kind of). However, I’ve noticed a significant difference since I’ve had my surgery. Being like a duck has been taken to a new level, even for me! The juggling act of life I’ve been so good at, for so long, seems to be dying a slow death. I feel “slower” than normal in that regard (mentally and physically), my brain feels like it’s in extreme slow motion and none of it is within my control. So, don’t give up on me, instead, bear with me as I navigate this new normal!

I can certainly see how we end up missing out on opportunities in life, or lose some key people in our lives, as a result…

Brain surgery brought relief!

There’s no doubt in my mind the surgery I had was needed. The benefit of going through with a shunt placement has not escaped me. When I had a chance to discuss my surgery with Dr Tollesson in the hospital, he told me that when he went in; “The pressure was high, but not very high”. This validated that I had made the right decision. You see, there was a point when I started questioning if my symptoms were serious enough to warrant surgery. If maybe I should just hold out and keep riding the wave, like so many other times before. Also, as mentioned in a previous post, my ETV was open before surgery and the options I had was to either have it widened again, or have a VP Shunt placed. However, after the brain bleed last May, when I had my ETV redone since 2009, I felt anxious and fearful to the point where I wanted to avoid that happening again (no matter what). I felt conflicted!

A shunt is not my first choice but…fear dictated my decision! Also, not everyone with Hydrocephalus is a candidate for an ETV, many don’t get to choose. I am, because I have aqueductal stenosis (caused by viral meningitis when I was 16 and 23).

All I know is, when I woke up without a headache, dizziness and nausea, I knew having brain surgery was the right decision!

The simple pleasures, recovery and returning to “normal”

7 days is how long I had to wait before I could wash my hair. Something which feels so good once you finally do!

6 weeks before I can drive, I have 1 full week to go! (This has been challenging for Ms independent). I also have my post-op follow-up appointment with Dr Tollesson at the same time. Before that happens, I have an MRI and Shunt X-Ray to check that everything is as it should be with “Sophy” my shunt.

1 week since my discharge from the hospital before I went back to work, with 2 weeks of light-duty. (The challenges continue in this regard).

The effects of it all left me feeling very tired in the beginning and I struggled to get back into the routine of waking up for work each day. I still get tired from time to time but it’s getting better.

I went back to cooking and light cleaning within a few days of being discharged from the hospital! (Something I probably should have given more time but, that’s a battle I would not win with myself).

As discovered last May, Opioids are no good for me, which made managing my pain in hospital, very challenging. One of the doctors told me I should just start taking CBD Oil as he didn’t see how I could go without pain relief with this condition.

The biggest discomfort I have right now is a “stitch-like” pain that comes and goes, sometimes waking me or just randomly throughout the day. I’m not sure what’s causing it and have wondered if it may be either the shunt tubing or possibly scar tissue. However, further investigations into ongoing gut issues with an endoscopy tomorrow, may just yield some results on that front.

Like the princess and the pea…

Finding a comfortable position to sleep was harder than I anticipated. The first few weeks were the worst, however, that’s improved. I now manage to sleep on my right side, though not for too long, as I can feel my shunt, and it’s simply not comfortable. If I sleep on my right side for too long, my head hurts when I turn over. Thankfully, I found that placing my head in the empty space (where the shunt valve is) between the two pillows on my bed, is somewhat helpful. That way I’m not resting or putting any pressure on the side of my head.

Self-love, self-care and setting small goals

Given what I had just been through, I knew I needed to practice some self-love and, more importantly, self-care. I set small goals for myself each day. At first, taking a walk in the back yard with my dog Jesse who (undoubtedly) missed our early morning walks. I knew I needed exercise but didn’t want to chance hurting myself or causing myself undue pain or discomfort. She tends to walk me at times, pulling the leash! More importantly, I knew I had to be careful with the incision on my abdomen (very similar to my c-sections but not as bad – I’ve had 3). I had to smile, getting out of bed one day, when my eldest son told me to; “roll onto your side and gently pull yourself up as you slide your legs off the side of the bed”. I remembered this trick after giving birth to all of them.

I also set small goals for myself in the form of writing whatever I wanted to do that day up on my whiteboard and feeling accomplished when I wiped it off. It didn’t matter what it was as long as I done something that helped me feel better about myself, and my situation. I also took time to rest as much as I possibly could. If it meant going for a 10-minute walk every day, watching a movie every day, giving myself permission to let the dishes pile up or order takeaways for dinner, then so be it.

A month later and I’m moving faster, taking longer walks and I’ve even started listening to the Mindset mentor while taking Jesse for her morning walk, just to nourish my mind. I listen to anything motivational really, ensuring I take care of ME!

Hopefully this post gives you something to think about, and helps you realise the importance of doing what you can, to help your own recovery along. It’s not always easy and our situations aren’t the same, which is why you have to do what’s right for you. The only one who knows what that might be, is YOU!