- What are your symptoms?
- How long do they last?
- Are there any triggers?
- What brings relief?
- Have you had these symptoms before?
- What else do you recall?
- What’s different this time?
I often think that if I had to be part of a criminal investigation, where Hydrocephalus is the vigilante and I’m the victim, I would be such an unreliable witness.
My memory doesn’t serve me well, this I know. I feel like I forget important information, which probably would have shed more light on my situation. Annoyingly, I remember after the fact and can almost kick myself but, it’s too late to do anything about it. Also, the sequence of events become muddled along with all my other unexplained medical issues, which may or may not be contributing to the way I feel. There’s a clear crossing over and blurring of lines…or is it? Who knows?
Based on this, I almost feel responsible for being in the situation I’m in, no answers to the questions I’m asking and the symptoms I experience. But, I try to remind myself to take it easier on me and be a bit more understanding of my own situation.
How can I love others if I struggle to do the same for myself? How can I expect others to have patience with me when I don’t afford myself the same in return.
It’s a tough one. Having this condition carries an enormous amount of responsibility and expectation on the person living with it. The lines do cross over and become blurry as hell! It requires so much attention to detail, which is swallowed up into a black abyss of a memory that simply can’t keep up.
I’ve found myself making notes on my phone so I have all I need to relay to the doctor I consult with. But, somehow, all of it remains in a muddled state as I scribble down my symptoms, none of which makes sense when I need it to the most. Or, it only takes an interruption from the doctor to set my mind on a different train of thought, losing track of where I’m at and omitting something significant. Admittedly, at that point in time, everything is significant. And, there’s so much information!
Trying to cram the last 14 years into a 1 hour consultation, somehow seems impossible! Most doctors I’ve seen in the past, don’t even look at my notes or the file full of medical reports. Yet their booking confirmations, specifically ask you to provide this information, leaving me feeling like an even bigger [fill in the blank].
In anticipation of my upcoming Neurosurgeon appointment next week, I’m truly hoping that this new doctor won’t be like any of the others before him. It’s like forcing myself to look for “the one” after being in an abusive relationship for so many years. I’ve forgotten how. Am scared of the same outcome and feel like I should just call and cancel. Getting my hopes up seems futile as I’ve already played the hour over in my head a thousand times. I fluctuate between feeling fine and thinking; “You’re making an issue out of nothing, just cancel” to feeling every “symptom” under the sun – an exaggeration perhaps?
Cross contamination and most likely suspects…
Maybe it’s hearing the words “possible tumour” and “at risk of Cancer“, earlier this week, and knowing that half of my Thyroid will need to be removed, that simply done a number on me. Or the abdominal pain that requires me to have a blood test done 48 to 72 hours after the fact, 3 days in a row, which woke me up this morning. (No chance of doing that now since it’s Easter weekend. I’ll have to wait until the next time – just my luck!). It feels like my body is spiralling out of control and I am powerless to stop any of it. Most likely, this growing nodule in my neck is only adding to the situation, and a possible suspect in what I’ve been feeling.
There has always only been one reason why I keep going back, my children. For them, I feel like I need to survive, to keep going until someone listens, to keep at it no matter how many times I feel knocked down and to keep getting back up. They are oblivious to this reasoning, of course or the physical madness, silently going on inside of me. The dizziness has increased lately, my nausea subsides long enough to give me a break but doesn’t fully ease up, headaches have been increasing ever so slightly and wake me up at night or early hours of the morning. (I’ve had worse though to the point where this seems insignificant). And, my vision still goes from time to time.
It’s an unwanted madness I wish with all my heart would just STOP…This is all part of my anxiety…I know this.
Regardless, as unreliable a witness as I might feel I am, I’m the only one I’ve got.