...and betrayed by my own body. Here's a quick list of the things I cannot do since becoming ill:
1. Drive
2. Take a hot shower
3. Walk in a straight line
4. Walk without running into people or walls
5. Leave my house alone
6. Learn new things easily
7. Read a book
8. Move quickly
9. Be on my feet for more than a few minutes without getting dizzier and without becoming exhausted
10. Read an analogue clock (sometimes...or without difficulty)
11. Identify groupings of more than three objects
12. Remember words (sometimes)
13. Remember meeting new people or having conversations (sometimes)
14. Do any exercise
15. Do any tasks that involve keeping my hands over my head
16. Use a sharp knife (most of the time)
17. Drain boiling water or oil (most of the time)
18. Take things out of the oven (most of the time)
19. Be responsible for another person (I can't babysit alone 95% of the time)
20. Work
21. Go to crowded public places
22. Do more than 15 minutes or so of housework at a time, and no more than once or twice a day on good days
23. Schedule more than one activity for a day
24. Take a shower without sweating my arse off afterwards...and I'm talking a lukewarm shower
25. Take a shower and get dressed within an hour
26. Sleep more than a few hours at a time
27. Express myself well verbally
28. Win any word games (and believe me, I used to win most of the time!)
29. Focus my attention well
30. Socialize easily
31. Remember appointments and schedules
32. Remember many things I've been told recently (often)
33. Remember things from prior to the onset of the illness (often)
34. Multitask
35. Keep track of my bank balance
36. Do simple math easily
37. Remember if I've read an article already until I'm more than halfway through it (often)
38. Remember if I've taken my meds (often)
In many respects, I have gone through a role-reversal. I was a caregiver prior to coming down with (what I assume is) dysautonomia/ POTS. I have been a CNA, a crisis nursery caregiver, a stay at home mother, and a DSP (caregiver for developmentally disabled adults). I used to be the one to ensure others' needs were met. I was the one who helped budget their money. I was the one who helped them do their shopping. I was the one who helped them with their day to day needs. I was the one who ordered and/or shopped for almost every single item a group home needs to run. Now, I am the one who needs the help. It's a very difficult process to accept this.
Friday, February 28, 2014
Something to remember
I need to remember that I can't do too much in one day. Yesterday, I not only showered, dressed, dried my hair, and put makeup on, I actually left the house. It was only to see the counselor (first meeting - I liked her), but that was enough to wipe me out for the rest of the day. I ended up with a migraine from trying to overdo it, I think. I was supposed to babysit last night (with my mother...I can't do it on my own), but it didn't happen.
It's incredibly frustrating to know that I used to be able to work a 12 hour shift, come home, clean the house, take care of three kids, cook, and shop all in one day. Now a simple shower can put me on my ass for the rest of a day.
It's incredibly frustrating to know that I used to be able to work a 12 hour shift, come home, clean the house, take care of three kids, cook, and shop all in one day. Now a simple shower can put me on my ass for the rest of a day.
Thursday, February 27, 2014
I'm here! A "quick" intro...
So hi there. I'm here! I showed up to my own party! Lemme get this out of the way first: my counselor suggested that I start a journal to record my journey with this weird mystery illness that I seem to have. She says I'm insightful, and that it may not only help me, but may help others as well. So I decided rather than use a regular pen and paper, I may as well take the easy way out and make it a blog instead. Whether or not I am insightful, I do know from experience that writing things out can be awfully cathartic. If you choose to continue reading, be warned...I will most likely complain. A lot. That's one of the things this mystery illness has done to me. I used to be a positive person. I'd like to think that positive person is still in me somewhere, but if she is, she's hiding well.
The only way this is going to make any sense to anyone is if I give a quick history. Let's see how condensed I can make 20 1/2 months of this experience, shall we?
June 14 or 15th, 2012, while I was just sitting there, not doing anything exciting, I felt and heard a POP in the back of my head, and I instantly felt dizzy as hell and nauseous. Boom. To the ground I went. I crawled to the living room and managed to scrape myself up off the floor and onto the couch. I've been dizzy ever since. I suspect it was due to a middle ear infection (though that doesn't explain the popping sound), and that the virus triggered something known as autonomic dysfunction, or dysautonomia. Nobody knows what exactly causes it, but it is known that illness can set it off. Unfortunately, it affects almost all bodily systems, and finding a doctor who is well-versed in it in my area appears to be impossible.
Since that point in time, I've developed more and more symptoms - ranging from the inability to urinate immediately, to numbness and tingling, to not being able to think, to having my vitals go all wonky. I've seen two family doctors, an ENT, three neurologists, including an otoneurologist (one who deals specifically with ears and vertigo issues), two audiologists, and a cardiologist. I have had an MRI of my brain, an MRI of my c-spine, a CT of my sinuses, VNG testing, a hearing test, a sonogram of my thyroid, a couple of EKGs, an echocardiogram, a stress test, and a 48 hour Holter monitor. I have a tilt table test ordered, but it isn't scheduled yet. I've had a whole mess of labs drawn as well. Thank the heavens my wife has a state job that provides great insurance! So far, the only diagnosis anyone is willing to give me is migraine associated vertigo or vestibular migraines. I think they are full of shit. I have an appointment scheduled with yet another neurologist in March. Cross your fingers!
Meanwhile, I am a gravity enforcement agent. In other words, I hold the couch down. . I haven't been able to work since June of 2012 when it all started. I'm rarely able to be up and moving long enough to accomplish simple tasks like doing the dishes or cleaning the house. All sorts of things set the dizziness into overdrive, and it makes pretty much all aspects of life difficult.
I've been robbed of many of my previous hobbies, but I'm starting to pick up others. I started tattooing last year, for instance. Unfortunately, I can't draw for shit, so I'm stuck with finding pictures that I can trace and then tattoo. I'm thinking maybe I'll try to learn how to draw. It's something to do. And if there's one thing I have, it's plenty of free time.
The only way this is going to make any sense to anyone is if I give a quick history. Let's see how condensed I can make 20 1/2 months of this experience, shall we?
June 14 or 15th, 2012, while I was just sitting there, not doing anything exciting, I felt and heard a POP in the back of my head, and I instantly felt dizzy as hell and nauseous. Boom. To the ground I went. I crawled to the living room and managed to scrape myself up off the floor and onto the couch. I've been dizzy ever since. I suspect it was due to a middle ear infection (though that doesn't explain the popping sound), and that the virus triggered something known as autonomic dysfunction, or dysautonomia. Nobody knows what exactly causes it, but it is known that illness can set it off. Unfortunately, it affects almost all bodily systems, and finding a doctor who is well-versed in it in my area appears to be impossible.
Since that point in time, I've developed more and more symptoms - ranging from the inability to urinate immediately, to numbness and tingling, to not being able to think, to having my vitals go all wonky. I've seen two family doctors, an ENT, three neurologists, including an otoneurologist (one who deals specifically with ears and vertigo issues), two audiologists, and a cardiologist. I have had an MRI of my brain, an MRI of my c-spine, a CT of my sinuses, VNG testing, a hearing test, a sonogram of my thyroid, a couple of EKGs, an echocardiogram, a stress test, and a 48 hour Holter monitor. I have a tilt table test ordered, but it isn't scheduled yet. I've had a whole mess of labs drawn as well. Thank the heavens my wife has a state job that provides great insurance! So far, the only diagnosis anyone is willing to give me is migraine associated vertigo or vestibular migraines. I think they are full of shit. I have an appointment scheduled with yet another neurologist in March. Cross your fingers!
Meanwhile, I am a gravity enforcement agent. In other words, I hold the couch down. . I haven't been able to work since June of 2012 when it all started. I'm rarely able to be up and moving long enough to accomplish simple tasks like doing the dishes or cleaning the house. All sorts of things set the dizziness into overdrive, and it makes pretty much all aspects of life difficult.
I've been robbed of many of my previous hobbies, but I'm starting to pick up others. I started tattooing last year, for instance. Unfortunately, I can't draw for shit, so I'm stuck with finding pictures that I can trace and then tattoo. I'm thinking maybe I'll try to learn how to draw. It's something to do. And if there's one thing I have, it's plenty of free time.
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