Are CF's Cursed?

Some might say we are unlucky, we have been cursed, we are doomed and no matter what we do, we are going to have a miserable life and die.

One day someone was handing out sprinkles of CF and  said, "I pick you Joe; "Here, Joe, have some CF" but Joe ducked and the CF hit me.So now I am the one stuck with this disease, all because Joe ducked out the way.

Some people might say that Cf's have been blessed. We were chosen to have this disease because , We can handle it. We will inspire people. Live our life to the fullest. See the world in a way that other people won't.

I was speaking to a fellow CF recently, and they asked me a question, which I have no idea how to answer.
She asked me, "what are the benefits to having cf? What are the perks?" for eg: people with cancer get to smoke dagga. lol.

And this question really hit me hard. I actually do not know.  How does someone get to that point where they ask themselves that question everyday, "is their life worth it?" What's the point if your life consists of waking up every morning, to do the exact same things. To live your life taking medications, and feeling awful. What's the point of getting married when you know that you are or will eventually be a burden to your loved ones?

You can't live a normal life, you can't get up and go wherever you want to because you have to drag oxygen machines, medications, & nebulisers along. You can't have your own children. Your family and your spouse will have sleepless nights worrying about you. The nights that you can't catch your breath. You're too weak and exhausted to bath, so you have to rely on someone. Having to be pushed around in a wheelchair. The simplest of tasks, but a burden having to get someone to be the pusher.

The stress that this disease puts onto your family is almost unbearable. Let me tell you, this is disease is most definitely not for sissies.

This is where the mind comes into play. The mind is a powerful tool, and once it has a hold of that one thing that keeps you under, you'll never see the sun again.

Thought, like all potent weapons, is exceedingly dangerous if mishandled. Clear thinking is therefore desirable not only in order to develop the full potentialities of the mind, but also to avoid disaster. Giles St. Aubyn

It is a difficult thing to explain, and as I haven't crossed that threshold into the negativity of the disease, I wouldn't know how to answer that question. Yes I have my days, the days I ask why me, why must i suffer. But I have never dwelled on the fact that I have no purpose in life. 
I too hope to never get to that point in my life where I am able to answer : "What is the point?"

BIO + KINETICS = LIFE + MOVEMENT = LIFE THROUGH MOVEMENT

The Science of Movement and the application of exercise in rehabilitative treatment of performance.

As you may already know, or have read before. Part of the process towards having a lung transplant is building up muscle mass. You lose muscle mass a lot slower than you do Body Fat. 

Putting on weight is hard enough, but now, as sick as you are/feel, you then have to still exercise. It is tough. Some days you just really don't want to, especially when you are getting sicker (Than you already are) . I don't know about other CF's, but I kind of reach a plateu, I get used to my body functioning at the low capacity that it does. But I get accustomed to it, and can then do things comfortably within those means. However, you then start throwing things into the mix, and your body has no idea what to do, or how to handle these situations. But just as with everything else, you adjust.

On Wednesday this week, I had a Biokineticist see me. This is something new that the doctors are trying with the transplant patients. Getting someone in, to help us, show us and motivate us to build that much needed muscle. Especially in the upper torso. In the long run, it makes your transplant recovery more manageable.

The first success story was with Dave Richardson. Dave was 100% worse than I am, he was sicker and skinnier. He was skeletal. Dave then started with the bio kinetics, and from what I have been told, he was a completely different person. The Doctors and surgeons couldn't believe how much muscle he had when they did his transplant.  

So this is Byron, my Biokineticist. It may help you to know how the CF factors into this story. His father is DR Paul Williams. The Milpark Transplant Doctor. 

Byron came to see me again, and I was speaking to him today, asking why he got into this whole thing. And he just grew a passion for it. He generally works with spinal injuries, but he then did research on biokinetics in CF's and hasn't looked back since. 

I have only had 2 sessions with Byron, but in those 2 sessions, I think it is the stiffest I have ever been. These exercises really work every muscle in your body. It is tough, I won't lie. I think to myself, is it worth it? Should I carry on? But, I have to do it! For the good of my own future. If I want the best Possible lungs, and Best Possible outcome, i have to work hard, and do my utmost. Don't you think that I at least owe that to myself, my family and to the Donor?

On Wednesday, we worked on legs, lunges mainly. And today I received on of those exercise bands, and we did some really intense upper body exercises. Tomorrow, I may just be placing my head in my food to eat that way, because I will in all probability not be able to lift my arms. Haha

Those little bands look like nothing, but trust me, they're something alright!

It is going to be a long, tough road ahead. Having to have the discipline to do this at home (according to workout from Byron) will be a big test for me. I am sure that I can do. I just have to.

So to all those people that exercise regularly, BIG UPS to you :-D

Food Food Food

The weight game is on. On arrival at Milpark (Saturday) I didn't weigh in, but I weighed in on Monday, at 57.1kgs.

Today, I weighed in at 58.6kgs. So within 5days, I have gained 1.5kgs. Quite impressive you might say? I'd say so too. The amount of food that I consume in a day at the moment, is: For a lack of a better word, is INSANE!

Along with my usual Full 3 meals a day, and snacks, I am having supplementary Protein Shakes, 2 different kinds. Fresubien 2kcal, and I have recently started on Skandishake. Along with all of the extra drinks, I am still having my night feeds.

                                                                                                              My Bottle for my Scandishake

Night Feed

I am on also on a supplementary Oil, called MCT Oil. It is the one and only oil that us Cystic Fibrosis Patients can absorb and Digest. However, what Offends me at the moment, is this HIGH FAT DIET that is apparently a big crazy. And one of the newest things for people to do is to now use MCT Oil in that diet. Here we are, battling to gain weight, and there is now finally a product to help us do that, and it's now part of a DIET.... which I find to be quite contradictory.

 This is the point in my admission, where the steroids are kicking in, and my appetite is out of hand. All I think of is eating, and when I am not eating, I feel guilty. It does get rather frustrating, because I am full all the time, yet I just keep shovelling food down my throat.

 You would think that I have Prada-Willi Syndrome (incessant desire to feel full due to a defect found in the Hypothalamus).

My daily routine looks a little like this :

• Breakfast (Toast, egg, meat, tomato)
• coffee
• 2 kcal Shake
• Snack
• Snack
• Coffee and biscuits

• Soup
• Lunch (Starch, meat, veg) double Portions
• Chips
• 700 ml Shake
• Biscuits

• Supper ( Starch, meat, Veg) Double Portions
• Pudding
• 2 kcal shake
• chips
• coffee
• snack (toasted sarmi or Wrap)

• Wafer's
• chips
• 2 kcal Shake

And then between all of that, I still want to eat more! Lol

Here's to staying happy, healthy and Plump

xoxo

 

oh "Mic-key" you're so fine

A couple of months ago, you may remember me telling you about how my Mic-key had burst, and mom and I had to put in another one temporarily. 

I have been waiting for my hospital admission so that the Reps from Perry hill may come and see me. It's easier when I am in JHB, so they don't have to trek out onto the farm.

Trek to Milpark

Moving is always fun, isn't it. Well today, I moved from the JHB Gen to Milpark.

Luckily kyle was with me to help be my cart-horse and lug all my bags around.

I can never understand what, or why I have so many bags when I go to hospital. I don't have a lot of stuff, one bag with all my extra food and snacks, my main bag with my pj's and essentials, and then my laptop. Yet it looks like I am going away for months.