Hiya folks!
Our guy @galenkp did it again!
An amazing list of topics and again, I'm having a hard time picking one.
I mean, come on, seriously? They are all so good!
I think what I like most is that you make us look deep into ourselves when we pick a topic given they are all related to who we are or what we think about ourselves.
Well, I had fun last weekend so, here I go again. But today I might get a little out of topic, so I ask forgiveness in advance.
My pick 👇
3️⃣ If you had a terminal illness how would you break the news to your family and friends? Remember to use your own photos.
Let’s get to it, shall we?
I’ve always been a delicate flower…health-wise.
I was born with an umbilical hernia. The doctor told my mom that my body would reabsorb it and I was going to be ok. Then my brother fell ill with a stomach bug and my mom wasn’t allowed to breastfeed me, and supposedly that made my immune system grow weak.
By the time I was 9 years old, I had a very bad tummy ache and I passed out from the pain. Then at 13, I had a massive code brown at my school, and it was because of a massive food allergy. My parents fed me well, always healthy, always balanced. But the times I was away with the orchestra, I didn’t have much supervision in that area so, as a picky eater, meaning that I didn`t like what was served most of the time, I only ate fruit or I didn’t eat at all, so by the time I came home I ate whatever was on site
LOL.
At 15 in Germany, with the national orchestra, again, the tummy ache, and I ended up hospitalized for two days. It was a very awesome but also very traumatic experience. A year later, I had a lesion on my hand, a Swan-Neck Lesion, and I had surgery on my right pinky to correct it, only to have the inverse result.
Look 👇🏻
After that, at 18, I had massive rhinosinusitis, but I was at a seminar and I had to play so I did. My left eardrum was perforated.
That’s pain folks, 18 years of pain.
By the time I was 24 years old, I started to have massive pain, this time, all over my body. I was always tired, but again, I pulled through and kept working, until my body gave up and started shaking beyond control and comprehension. That was the beginning of a very long year of testing, poking, and probing, to find out what was wrong with me.
Nobody believed me, because I didn’t look sick enough. I couldn’t sleep, I couldn’t bend over to pick up anything, and I had a hard time getting out of bed because my body was too stiff.
Finally,13 years ago, I was diagnosed with Fibromyalgia.
I remember the doctor telling me this:
“I can tell you right now what’s wrong with you. You have something called Fibromyalgia, do you know what that is?”
Nope!
"Well, basically means pain without explanation. The bad news is there’s no cure so you’ll have to live with it till your last day. The good news is, you won’t die from it”
I remember that I was alone, in the capital, and by the time I got back to my apartment, I knew my brother was there, and that I would have to tell him, also, call my mom and dad, and my other siblings.
How was I going to tell them that I was sick beyond repair if I couldn’t believe it myself?
It wasn’t easy. I had to breathe a lot, in silence, and my brother asked again and again what the doctor had said to me. I cried, thinking how my life wasn’t going to be the same and all due to an illness I had never heard about.
How do you deal with that?
I realized that there was no easy way to say it so I just came out and said exactly what the doctor had told me. My brother got so mad, at the doctor, for his lack of empathy (I’ve had to deal with unsympathetic doctors from that point on). My mom just crumbled over the phone in tears. My dad just got out of the house to walk around the corner to wrap his head around the idea. And that was it, after that, it was a period of adjustment and acceptance, and life went on.
Today, I have a good support system. The ones that were my true friends stuck by me and are still with me to this day. My family still has a hard time especially when I have a relapse, like the one I’m on right now, and as it turns out, I might have something else besides Fibro, so it’s been hard on them. But I try to keep my cheer up, for me and for them. I always crack jokes and try to keep myself useful, so they won’t have to see me down.
I said at the beginning that I might get off topic, and I meant that even though I’m sick and there’s no cure, it’s not terminal. However, I’ve read about people around the world who have died because of the toll this illness has had on them.
It’s not easy to deal with the fact that your body is not yours anymore, it’s an enemy who does as it pleases and does not obey you at all. All you have pictured for your life is gone, and if it’s not gone is going to be hell incarnate, life as you knew it is gone.
You can’t plan in advance because you never know how you are going to wake up the next day but still have to get up, go to work, clean the house, make food, take care of your family (if you have it), meanwhile inside, your body is screaming from pain non-stop 24/7 and people dismissing you because you don't look sick enough. It takes a toll on a person’s mind and soul.
It’s not terminal but is a game changer for sure.
So, to sum things up. There is no easy way to break such news to your family or loved ones, because even if they aren’t the ones suffering the pain that you have, if they love you, it will affect them too.
The only thing we can do, and I speak from experience, is to be as straightforward as possible, acknowledge your limitations but not be allowed to be crippled by them, and if you are willing to fight it, give your family and loved ones, the comfort and reassurance that you will not give up and that you’ll need them to help you get through it.
See you next time 💕
