I guess what it is: I have a *new reality*
I can't believe I have a medicine container like an old person that separates my Rx to am/pm and contains a mass of pills for each day. I am diligent about my medication after February's event. I feel it helping and that means the world.
I can't believe I have had to join support groups to deal with the reality that I am chronically ill. I am EVER thankful that they exist. Seriously, to not fight alone and to have others "get it" has helped immensely.
I can't believe I wear a Medic Alert bracelet. The thought of something happening when no one is with me terrifies me. This bracelet has a number that can be called and they will notify medical persons of my health, medications and contact my emergency contacts.
I carry my diagnosis with me to explain it to those in the medical community that are unaware of Hemiplegic Migraine. You would NOT believe the stories and lack of understanding of this disability.
I plan my day around MY nap. Yes, the toddler naps (so I blame it on him to most people) but reality is it's ME that has to nap. Not wants to, not because I am lazy, not because it would be nice if...no I full on pass out dead to the world. From research I have come to learn that since my left side is weaker my brain works twice as hard to make me function normally.
Most of the people "IN' my life have NO idea what I deal with on a daily, weekly basis to TRY and stay well. It really requires too much effort to explain it to them anyway. I did find a story, shared in a support group, that does a pretty good job: The Spoon Theory While I do not have Lupus, this is very much how I have to balance life.
I wrote this more of an update for ME to remember. In case you have come searching for help...here you go:
Support Groups:
Livingwithhm.com
Facebook:
HMers R Us Worldwide.. Hemiplegic Migraine
2 comments:
Jen, the spoon theory is dead on! I am one of the blessed few who has found a miracle combination that works for me, that keeps my RA in check. But even without the constant pain, I have residual damage that will never repair. I'm too young for joint replacement and wouldn't want it anyway. I don't 'look like' anything is wrong, so people look at me funny when I do a task in a different way - in a way that my body can accommodate but isn't the same way as everyone else. And I look healthy, but I get tired easily. We call it 'needing to reboot.' If I do too much, I'm on overload and need to sleep in order to recharge. My only meds consist of a 2 hr IV infusion every six weeks. It's not much, but it keeps me out of a wheelchair. It's not much, but it costs $60k a year, if I didn't have insurance. It's not much, but it keeps me from working. There are a lot of people with invisible conditions; those of us who live and thrive and leave our mark on those we love. It's a special group - and I'm glad to call you a member.
Hey, I'm special too! And I have a bracelet. Let's all spoon together. Hee hee.
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