Hydrocephalus take a number

  
Earlier this week, my Hydro symptoms reared its ugly head. I woke up at 4:30am with a throbbing headache, mainly in my eyes…I was miserable and felt very lethargic.  

I made it through work that day and hoped it would ease up. Lasting all day with constant nausea and dizziness, I was only too happy to put my head on the pillow that night. By the time morning came, the pain had not subsided and was still wreaking havoc inside my head. I was worried…What was this and why was I feeling this way after such a long time? A question, I did not have a ready answer for. I knew my faith had been lost in the medical system and there was no way I was going to waste my time with another Emergency room visit. Somehow though, I had the nagging thought “What if this is my ETV?“…

There’ll always be that nagging thought…no matter how much I want to believe that I am OK (whatever that is).

I had a thought to get my eyes tested because I knew if my pressure was raised, they would pick it up. I remember reading in one of the Hydro groups that someone had their Hydrocephalus diagnosed after having one done. I figured this was the best option since I knew the visit to ED would be a fruitless exercise of death by morphine (with my spirit being killed slowly due to not being helped effectively). I slept with my pillow propped up that night in case it helped with the flow of CSF.

The Wednesday morning early, I went to my appointment and even though by this time, the headache had eased up to a bearable degree, I figured it was still worth the visit. My pressure was high but not high enough for the optometrist to warrant further investigation. However, this was a sure indication to me that 2 days ago, when my headache started, my pressure very well could have been high enough to be a cause for concern. The thing however, was that we were booked to fly out to Brisbane the Friday morning early (Christmas morning). I got a prescription from my GP for some Codeine (a backup in case of a Hydro headache) and I told my Hydro to take a number.  

My family and I had been planning this holiday for a while and there was no way in hell I was letting my Hydro put a damper on the festivities. I learnt my lesson well the last time we were here and started drinking plenty of ice cold water. At the first sign of a headache, I popped some painkillers and even found going for a swim, to be not only relaxing and refreshing but good for my headache too.  I just don’t give it enough time to breed and grow into something I despise. I sleep when I feel tired and (touch wood) my hydro hasn’t been a problem for me…yet.

This time of the year and especially where we are now, is all about quality time with our family. (My brother and sister-in-law and their kids). My soul longed for this time for so long and there’s no way I’m going to give Hydrocephalus the upper hand. I know I can’t control it with a magic switch but I can make sure I do everything from my side to ensure I have a good break. When the new year comes, and we’re back in NZ, I will face whatever I need to. I plan on getting myself checked out and making sure my ETV is still allowing a good enough flow. I hate the uncertainty, I hate not knowing and I hate being a slave to my Hydro.  

This is the reason why…you can take a number Hydro and get in line. I’m with my family now and ain’t nobody got time for your shenanigans!
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Hydrocephalus: For all those who will be spending Christmas in hospital…my heart goes out to you.

Sun will shine

As Christmas is on the horizon, I think of all the parents and children who are going through a challenging time with their Hydrocephalus. For all those who will be spending Christmas in hospital…my heart goes out to you. However, I pray that the time together will be the silver lining for you. I pray also, that you recover and heal fully and can soon put this time behind you.

It’s never easy when the person you love has to endure pain or suffering. It’s not easy watching a child you love more than life itself, and have so much hopes and dreams of a bright future for…seem as if they are facing the end. Remaining positive is just about the hardest thing you ever have to do and seeing the light at the end of the tunnel is not easy…I know. For sanity’s sake…you need to push through and expect the best, no matter what. If you feel that this is unfair, if you are angry, then allow yourself to feel that way. Let the emotion play itself out and let it subside – you are allowed.

At times like these, I realize just how lucky I am to have my family around me…I am thankful that I get to spend another Christmas with them.

We come into this world with nothing and we will leave this world with nothing. However, the people around us, the one’s who touch our lives deeply…will always remain imprinted on our hearts. If you or a loved one, is currently facing the unknown of yet another brain surgery, take heed in the fact that the sun will shine again for you. Seasons change literally from one day to the next. You might be feeling like it’s all gloomy at the moment but the sun WILL shine again for you. This will be a time when you can sit and look back on…and be thankful that you made it through.

The world carries on outside regardless of time standing still for you within those hospital walls. This seems to be a cruel reality. But, the next Christmas will be yours…a time when you will be thankful for all that you have and this time, right now, will become a distant memory. The gloom of this moment, will be overpowered by the joy of the days to come.

Do not become disheartened. Do not give up. Do not let this one moment in life, determine the rest of what’s left.

Hydrocephalus is a condition, which we have no control over. I think it’s safe to assume that everyone touched by this condition pretty much hates it’s guts. Take a stand against it. Show it you will not give in, will not succumb and will not go down without putting up the fight of your life. Take what it throws at you, keep your head up high and walk away, knowing that you gave it your all.

I pray that this festive season, you find the things that matter most to you. And, know that somewhere in the world, someone is thinking about you and cares about what you are going through…right now…because I do.

 

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It’s one week to go to Christmas. Have you found what’s most important to you?

ChristmasI’m sitting this morning and reflecting on how things have changed since I was a child. There’s been a definite shift in how I see or view what’s important at this time of the year. I’ve crossed paths with so many people…people from different backgrounds, circumstances and beliefs. A time when so many celebrate the birth of Christ that has made us thankful for this time of the year. A time where others, who do not subscribe to the belief of Christ and religion…celebrate this time of year for different reasons. It’s a celebration nonetheless. Regardless of what we do or do not believe in…we have one thing in common.

It’s a time of giving, a time for sharing, a time to spend with loved one’s but more importantly…a time to be thankful.

There are so many things that I am thankful for. And, it’s the things that cost nothing, which mean the most to me. It’s the fact that someone takes the time to do a selfless deed for me, the fact that others take time out of their busy day to make my life easier. The phone call or text message just to say “Hi. How are you?”.

I love Christmas and I love giving but it is also very stressful. I wish I had all the money in the world to buy gifts for all the people in my life just to show them how special they are to me. Unfortunately, I don’t have that kind of money and it frustrates me at times. However, this week, I decided that there must be an inexpensive way to show a few people in my life, that I appreciate them too. A way to say “Thank you for being there at a time when I needed it most. There’s a select few people who have over the last couple of years, been a real support system to me. I decided to bake some biscuits and bottle them up. This is no real big deal right? However, this idea soon delivered a challenge of it’s own but I was determined to get through it.

I mixed up the batter for my batch of biscuits and just as I was about to press them out onto the pan using my cookie gun/press…it broke! This was not the way I had planned for things to go, in fact, it was a nightmare to do. This particular biscuit recipe, is not one that can just be rolled out, pressed and placed into a baking tray. It took some serious improvisation to get these cookies baked and I literally stood in the kitchen over a two day period making them. I went to the shop to return my broken cookie gun/press, hoping to get a replacement so I could continue the next day but they had none in stock. I knew I needed to get the rest of my biscuits done if I was going to make up the rest of my gift list as I really want to deliver these biscuits today. I soldiered on and in the end, I have an end product and am looking forward to visiting these special people in my life. They have no idea that I am coming and when I look at each jar of cookies, I think, it’s really not such a big deal. Then I remind myself, I have made these with every good intention and put so much love, energy and time into them…I just know that it will be appreciated. The smile on their faces will be “thanks” enough for me.

 The end result

 This year, Christmas for me, is about showing the people in my life just how much they mean to me. It’s about letting them know that, even though I might not always say it or show it, I do love and appreciate them for who they are. We all contribute in one way or the other, no matter how big or small, to the next person. Being thankful for what you have and more especially the people you have in your life, is key to a happy life.

Have you found what’s most important to you at this time of year?

I hope and pray you will all have a blessed and Merry Christmas.

Thank you for taking the time to read.

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