Some days, much like today, I just feel like giving up. If I were connected to a life support at this moment in time and were able to, I would pull the plug myself.
I’m not in pain (Thank God) but can’t say I feel good either. I woke up this morning at 4 am and tossed about for just over an hour. When I eventually had to get up, my body would not co-operate. I forced myself out of bed and physically, as if the rest of my body didn’t get the message from my brain the first time, fell back down onto it. I thought it was just me feeling tired from waking up so early but…
I ambled along and forced myself forward and onward into the day. However, I struggled with my cognitive skills and just everything in general though I fought against the current with all my might.
I’ve been feeling dizzy and nauseous the whole day, almost like one who’s had a triple dose of Tramadol and Morphine combined. What the hell is going on! I feel like screaming and yet I know that won’t do any good.
Coming back to wanting to pull the plug…Why? Well, I’ve just had enough of Hydrocephalus. I want to throw in the towel and say “There…You won! Just let me keel over and exit out of this life“.
I hate not knowing if something is wrong. Doing a Google search to try and make sense of what I’m feeling doesn’t help when I read about ETV closures that were treated too late and leading to the sudden death of the patients…Yes, some might say “Don’t do that!” But, this is a reality I must face regardless of the fact that it might not happen to me.
I hate having to wait 2 whole weeks to see a surgeon just to get his opinion on what’s “possibly” going on. Having to wait even more time for him to do one test or the other and tell me one of two things:
1. Nothing is wrong or
2. You need an operation.
There is no middle ground with this condition…
Will I get sicker? Will I lose even more energy and will to live while I wait? I’ll probably feel better in a day or two and wonder what I was even going on about. This is a roller coaster ride for life and I have a non-refundable golden ticket with front row seats.
I just want to give up…I have no will to fight you anymore.
Belinda
March 24, 2016 at 8:26 pmI am so sorry that you have this condition skyewater, my beautiful 18 month old nephew has the same condition and I watch the daily struggle of his parents as to whether he is having a bad toddler day or if it has to be another trip to the hospital……reading your post has helped me so much in understanding their inner turmoil that they go through. I have joined the hydro support group to gain a better understanding of how this condition works and how everyone copes with it (or struggles too) as there seems to be such limited public awareness in Australia yet so many people seem to have it!!! Thankyou so much for sharing your journey and feelings. It’s helped me a lot and for that I say a massive massive Thankyou and I really hope that there is a better way to manage this condition in the future to alleviate so much anxiety that everyone suffers.
skyewaters
March 24, 2016 at 8:39 pmYou are most welcome.
It’s comments like yours that keep me doing what I’m doing. Being a family member of someone with Hydro is an opportunity for you to give them the support they need. (Including parents of little Hydro warriors). The key is speaking their love language…
Praying all goes well with your nephew and for strength, understanding and patience for his parents.
Thanks for commenting.
minionmayhem514
March 17, 2016 at 9:20 pmFirst off, I hope you figure out what’s wrong. While I don’t personally understand how hydro feels, I watch my daughter (10 months old now) and wonder about her hydro every time she cries or refuses food or doesn’t want to sleep. Is this normal, or is it her shunt malfunctioning? Is there something wrong with her etv?
Second, I hope you don’t give up.
skyewaters
March 17, 2016 at 9:46 pmI can certainly understand how frustrating that must be for you and imagine it would leave you feeling quite helpless too. The only thing I can advise is to be paranoid instead of brushing it aside. (Listen to me saying that when I struggle to take my own advice). At this point in time, I know I have no other choice but to wait for my appointment on the 30th. However, I’ve been toying with an idea to go to an Optometrist just to check if my pressure is high because they would be able to see that. It’s the quickest fix I can think of yet, if it is, I’m not too sure what my move will be after that. So yes, not quite giving up as I know, I’m the only one I’ve got in the bigger scheme of things.
Thanks for commenting.
minionmayhem514
March 18, 2016 at 12:45 amI definitely err on the side of paranoia. I have no problem being THAT MOM. 🙂
Maybe it’s just the difference in countries, or because she’s a baby, but I’m not understanding why they can’t give you an MRI sooner. We go in with hydro symptoms and she gets a scan within an hour. Although we are going to the ER, and I don’t think you do.
skyewaters
March 18, 2016 at 1:13 amMy eye pressure was normal so that’s a relief. I’m planning on getting all the rest I need this weekend and trying to de-stress as much as I can until my appointment.
I do think they react differently to babies though, which is a good thing. Also, I don’t think knowledge of Hydro is all that good in New Zealand (in my experience).
Michelle
March 17, 2016 at 8:17 amI wish I had some words of comfort to offer you, some advice which leads to a solution. All I can say is that, I experience these symptoms too. Actually, in a way it was reassuring to read what you had written.I know now, I am not alone. I thought it was just me who lay awake for hours and who wondered – is this something or nothing?
I now keep in regular contact with my GP and my optometrist for an eye pressure test. I figure I need to listen to my body more. When I feel good, I do stuff. When I don’t feel good, I let my body rest.
I wish you all the best.
Just know – you are not alone.
skyewaters
March 17, 2016 at 5:55 pmThanks for commenting Michelle. I am glad you found reassurance in my post. Let’s see how it goes and wishing you well on your journey too.