Changes

“No book is really worth reading at the age of ten which is not equally – and often far more – worth reading at the age of fifty and beyond.”

― C.S. Lewis

For a long time, I shut up about my condition, not only because I was in denial phase and did not come to terms yet with the seriousness of the situation but also because I don’t want to saddle other people with my burden. Even in real life, I don’t talk about it, not even to my family, or my children; it’s difficult but I now have to admit that I am sick and I am ashamed of it.

I am ashamed of what I have become. This isn’t me anymore. I can hardly recognize myself.

When my husband met me for the first time he thought I was twenty-two years old and larger than life. I was thirty-seven and was trying to get over twenty years of abusive nightmarish relationship but like he said: there are no signs of it, not in the way I deal with people and life in general. Despite everything that I’ve been through I managed to keep my core intact.

But I never expected to be ill. Not like this. A couple of years ago, I was diagnosed with Rheumatoid Arthritis, Fibromyalgia, and  Ehlers-Danlos syndrome Hypermobility Type. Yesterday they added another one to my growing list of discomfort, apparently, I also have  Ménière’s disease. Fancy that. I provided some links here for information but you can look it up on the internet by yourself or google it, save me time and space explaining a very complicated matter to you and I’m not sure you will understand. People often misunderstood illnesses that don’t show on the outside. They think it is not serious or we are just pretending. Believe you me, I will gladly exchange my condition with anyone without a second thought.

To top it all I have a cervical hernia – a cervical herniated disc is diagnosed when the inner core of a disc in the neck herniates, or leaks out of the disc, and presses on an adjacent nerve root – and a lumbar hernia (Spinal disc herniation/slipped disc) I have Ulcerative colitis (Colitis ulcerosa, UC)  too. There’s a lot more but they are just symptoms brought by the disease. Sideshows, they say.

The pain I have already learned to live with it (though the consequences is enormous, like not being able to sleep, sit or lie down and being constantly tired, puking all the time but gaining weight at the same time) but what it does with my brain, that is what I have difficulties dealing with.

I wonder if you are familiar with Apraxia and Agnosia? Well, I’m experiencing that. The constant foggy state of my brain, the confusion, the inability to express myself and deal with simple everyday tasks like dressing up and personal hygiene are things that are very difficult for me to accept and live with. I’m becoming a stranger to myself.

I am writing this because I used to be smart, intelligent they say. Independent, a leader, creative trouble-shooter logical, daring adventurer wanderer an artist and a writer. I am less of that now. My main concern is how to get up in the morning and remain standing throughout the day. I want to stay independent as long as possible. I don’t want to be trouble for anyone. I know it will happen one day, sooner than expected and approaching faster than I wish but I’m a stubborn woman; I held the years at bay successfully, I can do this too. Hopefully.

So, if you notice that the quality of my writings changes, that it’s not the way it is used to be, not anymore sharp or cohesive; I hope you give me a break because you understand for you know the reasons why…

I am a machine past my prime. My components are rusty and urgently need to be replaced. My wiring doesn’t work anymore the way it supposed to be. There is something wrong in the main compartment but I want you to remember me like I was in the beginning, the way I used to be…

Update:

On the 15th of June 2019, I had an accident and broke my spine… Read the whole story here.

Update: January 13,2021

Been to ER three times last year. One for a mini heart attack (that was close!) another for acid reflux which I thought another heart attack, and one for an overdose. I took the wrong combination of medicines (they look exactly the same. Just a slight bigger than the other so…)  There they discovered I have cysts in my liver and polyps in my gallbladder. They need to be operated. I keep prolonging the surgery. Being in the hospital in the time of corona is very traumatizing I can tell you. I will schedule it one of these days but I am not ready yet. The referral from my GP is currently residing in the glove compartment of my car. I will keep you posted on the progress.

Promise.