7 Myths about Being Chronically Ill BUSTED

Myth #1 – You don’t look sick so you must not be sick
Just because I am not falling over dead or laying in my death bed doesn’t mean that I feel well.  Today alone I dealt with feeling really dizzy and sweaty in the grocery store. I have had a headache on and off all day and I can’t even tell you how exhausted I am.

Myth #2 – You aren’t in bed so you must not be sick
I am sick. I am not dying. I am not dead. I may look like death warmed over in the morning, but contrary to my fresh out of bed appearance I am not dead.  Today alone I worked 4 hours from the computer in the morning doing one-on-one Skype lessons, went grocery shopping and spent 1.5 hours cooking lunches for Seiya for the week. But I also rested for two hours.

Myth #3 – You are lazy and don’t want to work
I LOVED my job!  I loved meeting people from around the world and entertaining them while watching them develop from barely able to speak English to being able to have a conversation with me.  I invested more than $100,0000 into my education to barely use it.  I am full of ideas and dreams related to my job that I can’t make come true.  When I was able to work, I frequently worked 9am to 9pm.  If anything I overdid it.

Myth #4 – You just want attention
I will be the first to admit that I love attention. I am an attention whore. Once I get some – I want some more. I need frequent accolades and attention from Seiya, but I would rather get attention for what I do than what I can’t do.  I don’t like feeling like people see me as helpless. When I was younger and far less mature, I thought the only way to make people like me was have them pity me.  But I have grown since then, (maturity-wise not height. I’m a mere 4 foot 9 3/4 inches….every quarter inch counts) And I now know I have many gifts to give the world that sadly I cannot use. No one want attention for that.

Myth #5 – It’s all in your head
I have a vivid imagination. I created my own magical world of which I was supreme ruler as a child.  I also can use my imagination to fool myself into thinking a friendly dog will viciously attack me and that my shadow is really a monster.  I used to be a hypochondriac and sometimes I think that every twitch is going to kill me.  But sadly this is not in my head.  I wish it were.  It would make life easier.  But when I’m not even thinking about being sick I will often find myself suddenly feeling ill.  I can be awaken in the middle of the night with pain.  I can think I feel good only to feel bad five minutes later/  Nor is my physical condition simply related to anxiety.  I have had several therapists and counselors tell me that, “This isn’t all in your head. You are sick.”

Myth #6 – If I really want to go somewhere I will go; if I don’t I won’t.  It’s an excuse to get out of doing things.
There are times that I have to miss parties and events. And there are times I pay for having done too much because I’ve wanted to do something so badly.  This past weekend the camp I attended five years had it’s 100th birthday.  I was excited to go.   I had begged Seiya to pay for us to go for a few months.  The day of I felt like crap.  I decided I couldn’t go. I wound up pushing myself to go, but I missed some key events in the process.  The day after the 100th birthday gala I went to visit my sister in Western Massachusetts.  I think that is why today I am so exhausted.  Other times I have done worse, but physical therapy has built me up to be able to handle what I did this weekend.  Back in May, Seiya wanted to go on a walk and I was in much worse shape.  He’d done so much for me that i wanted to do this for him.  That strained my back and I twitched all night.

Myth #7 – You are a pain med seeker
Some people are, but most aren’t.  I know personally I am on very few meds and only take pain meds when the pain is so bad I can’t function or it’s that time of month. I will admit I am in less pain than most.  My main symptoms are exhaustion, dizziness and tummy troubles.  I also have back pain (right now my lower back is spasming,  I think carrying the groceries was too much)And my tummy troubles do not come without cramping and excessive discomfort at times.  Even when I go to the ER I don’t ask for pain meds.  I am there for answers not meds.

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