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| *jumping for joy* |
Like when I have to turn down an invitation to visit.
Or, an invitation to dinner.
Or, someone who says they haven't seen me for a long time, and can they drop by tomorrow, next week, whenever?
I am feeling all right now. That's all I know. Tomorrow, I may be feeling horrid. Next week, I may be having difficulty breathing - and trying to stay calm, and not bring on a panic attack by worrying that my heart is going to stop any minute now - because it sure feels like it's planning to!
Whenever, I might be suffering from horrid bloating, and be sitting up so straight, and rubbing my rib-area, and trying to not say out loud that I wish I were dead, because the pain is so bad.
But, how do I explain that to whomever's asking?
How do I say what's-what to people who are acquaintances, and don't really understand what's up with me.
I mean, I have explained this disease to people, and they still do not understand what it's all about.
'Is it your heart, or your lungs?'
'You can't breathe? Then, why are you going to IJN*??'
'You/she looks fine!!'
So, my always reading-between-the-lines mind wonders if they don't really believe me.
And because I am an idiot, this upsets me. It upsets me because I wonder if people think me a fraud. I wonder if they think I'm like Emma's valetudinarian** father, Mr Woodhouse!
I think I am fast becoming a Mr Woodhouse, as it is! I worry about getting the flu, or a cough. Because if I get it, it will take me a long time to get over it. And, I know this is true: Because I have been ill before I was diagnosed, and I did take months to shake off something like a cold, or a cough.
All this valetudinarian-ism (nope, no such word!) is helped along by my dear husband, of course. Stay away from that side, there's someone with a hacking cough over there! Hahahah. Such fun, I tell you.
But, it all feels so selfish. And I've always said that I do not want to become my disease. It is just what I have, but I want my life to go on normally.
Easier said than done, though.
I tire easily, and often, I need to rest. Remember, it's my superpower, k!
And, even when we have guests, after a bit, I need to excuse myself and go off to my bed - yup, you guessed it: To rest.
Resting is a big part of my day. Without my multiple rest-times, sprinkled generously throughout my day, I'd be out like a light by about 7 in the evening!!! The medications help me get the oxygen I need, and ease the flow of blood from my heart to my lungs. But, any kind of activity is a strain, and when the strain gets too much, my muscles actually hurt. I realise now that this hurt is my body telling me that I've not got enough oxygen in my muscles, and that I need to rest. So, I feel the hurt in my shoulders, and often, in either my thighs or calves. All cries from my body, saying: Rest time!
So, these are little things I've slowly learned about me and IPAH, and I'm slowly learning to live my life around it all.
But, what I find hardest to do, is to explain this to others. Because, frankly, it seems so very lame!!! Hahahaha. "I'm tired. I need to lie down." Another one of Jane Austen's characters getting the vapours, eh?
Talk about life turning around and biting me in the bum!
So there, I've written about it, and I hope this will get it out of my system.
Note to self: It is all right to be tired, and to say you need to be excused so that you can go lie down. It's all right if people think you're a slug. You don't care what those people think anyway!
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| Note to self |
* IJN: Institute Jantung Negara, our National Heart Institute
** valetudinarian noun (I had to look this up! 😉)
- a person who is unduly anxious about their health.
a person of a weak or sickly constitution;
especially: one whose chief concern is his or her ill health.
- .
