I apologize in advance for the length of this blog post. There are several things I've made of note lately on what all I want to blog about, but then things hit me and I forget.
I have Fibromyalsia and recently we added Lupus to it. Fibro comes with this thing called Fibro Fog, and when I'm in a bad cycle, my memory just goes, thoughts linger on the edges but fade into the distance. I'll tell Rick something a gazillion times but then find out later I hadn't mentioned something to Margaret or my Mom and feel so badly. From Rick I hear, "I've heard this 10 times already" and from Margaret or Mom I hear, "Why didn't you tell me?" So now I have to stop and ask, "Have I told you this already?" Most people know it comes with who I am now, but for others, it can be irritating. I pray I never get Alzheimer's because if Fibro Fog is this irritating to my loved ones now, I can't even imagine how they may or may not tolerate me with that horrific disease.
So, things have been crazy. My SD card is shoved full of things I need to upload and post about. Crafts I've done, Girl Scout events from camping to kayaking, Carly's prom which was in MARCH, and her last high school performance which was last night. It freaks me out a little that today is already Thursday of yet another week, and freaks me out even more when I remember we're in MAY now. Before I know it, Mom and I will be contemplating whether or not last year was really our last year to do Black Friday. I can't keep up. Time is slipping too quickly through my fingers and it worries me.
And April is so rough for me on most years: Lots of time Easter is there plus Carly and Sydney's birthdays, which are only a day apart. But this year, I had a major Girl Scout event each weekend for Scouts. I can't seem to get Time to just sloooooooooooooooooooow just for a little bit. And now that April is over, and I survived it all (YAY!), the Fibro/Lupus I fought extra hard last month, well, it won.
Every day I run fever. It's just part of it. As are the constant body aches, the knotted muscles, the headaches, the horrible sleep (it's hard to sleep in chronic pain). But last week, it seemed to worsen. I thought it was maybe a little too much sun during kayaking. I thought maybe the extra aches were kayaking against the wind. But as of Wednesday (yesterday), it wasn't better, so I voluntarily did something I hardly EVER do: I broke down and went to the doctor.
Disclaimers:
I've smoked a long time.
Even when I weighed 218, I didn't have high blood pressure.
For those who know, I've battled an issue with my foot for a year now. So... I've been to a LOT of doctors over the course of the last year. Monday at the store, three different strangers asked me if I was okay -- guess I looked ready to fall over. Yesterday, however, when they took my blood pressure, it was 175/90. It's normally 128/67 since losing the weight. When I was 218, it was still in the 130/75 range. This new number yesterday... well... that was scary.
It was scarier when they wouldn't let me leave until it came down because I was "in stroke range". Before the doctor came in, I'd texted Rick with the blood pressure reading. I hadn't replied after that because the doctor had come in and my phone was off. When I got out of the office, Rick called: He was on his way home. Apparently my numbers scared him a little.
The doctor agreed that it probably WAS Fibro and Lupus just wildly out of control and my usual stuff wasn't reigning it in. I had to do more, or in this case: I had to do less. I started to cry. I already don't have time to get it all done and now I have to do LESS? But I was told I had no choice.
Remember not too long ago, I had the post where it felt so many people asked so much of me because I'm a stay at home mom so I obviously have the time and energy to do it. Now I have to learn to say NO more often. Before I left the doctor, it came down to 140/90. Ten minutes later when I was at the pharmacy waiting on my meds, it was back to 155/105. I got prescribed my "Zombie Cocktail": Flexeril, Vicodin and Xanax. Rick was home and making sure I stayed in bed, he cooked our dinner, he took over talking to Cooper about school that Cooper's been neglecting. He stepped up in Good Husband form while I stayed in bed. But I can't do this anymore.
This isn't who I am anymore.
When Carly got home yesterday, the first thing she said to me was: What are you on???
It reminded her of how I used to be: out of it and drugged up. She spent a lot of her childhood with me like that; in bed, drugged up, trying to survive without living. Without thriving.
I cannot go back there again.
I've tried to do things recently to be more productive, like creating a schedule, etc, and I've been pretty good at sticking to it. Now that I've done something so proactive about it, I'm being forced to put on the brakes.
I worry about the condition of the house. My old house was just... a dwelling we survived in. I know my situation was different back then, I didn't care a lot about what was going on due to that situation. I'm not that person anymore. I don't live in that type of house anymore. I've created this life that while it isn't perfect, the house is company ready at all times. Not museum quality by any stretch of the imagination, but a nice comfy home where people can come in and out and I'm okay with it. My old house -- NO ONE ever came over. Now our door revolves and I LIKE it that way.
Rick lived alone a long time, without the chaos and mess that comes with kids, and his house was always magazine ready. He's relaxed his standards a lot while I've upped my standards a lot and for the most part, we've come to a good balance. Our first year together, he was home and helped a lot, and somehow, with a little time and reordering my life, I've learned to keep it up without his full-time help like I used to have. Sure, things need dusting. I always have too much random stuff in the laundry room. I don't always have all the little spots totally picked up, and there are fingerprints on light-switches and dust along the baseboards that I can't get with the regular mop all the time, but I try and he's relaxed a lot.
But now that I'm being forced to ease up, I worry about what will happen with the house. The kids will have to step up, of course, and that will be easier with summer coming up and them being home. To relieve the extreme stress my body is apparently under, I have to relax my standards on other stuff, and the idea of relaxing on the other stuff ups my stress levels.
The irony does not escape me.
So I'm not sure what to do. I have to listen to my body much better than I have been in the last month. I have to say no more often. I have to space out the Scout stuff more because I can't keep doing it all. I have to slow down on my plans to create.
I guess I'm scared. I've worked really, really hard creating this life over the last three years. What if my having to relax the standards (which are questionable as is, apparently) has me losing everything I worked so hard for?
And I don't really have a choice. My body CANNOT take it.
Sometimes I wish Fibro and Lupus were these HUGE gaping wounds that people could SEE. I don't like "looking" normal when nothing in my body is normal at all. When I park handicap, which I've done six years now, EVERY.SINGLE.TIME I think people are judging me because I "look okay". I have to stop worrying about that. I have to stop worrying whether or not people forget my medical conditions, even in my own family. It is there, even if you can't see it. It HURTS, even if I don't show it. My foggy mind TRIES but doesn't always succeed. I have to acknowledge that this is real, it WILL kill me if I'm not careful, and if others have a problem with it, with what I can do, what I can't do, if I haven't done enough -- that has to be their problem, not mine. I have to breathe in and out of their impatience with my abilities and know in my heart it's the best I can do.
Yup, I'm scared.
I thought writing out this blog with a more thorough update would be cathartic and a stress-reliever. It didn't work. Putting it on paper (so to speak) has my fever spiking again (I can feel it when it happens -- and my face turns neon red.) So if I forget I hadn't told you something, I thought I had, and I apologize. If I've told you something more than once, forgive me -- I just don't remember. If I have to say no to something that seems simple, it's not personal. If you need something, anything, from me, I'll give it, but it may not be immediately. It may not be quickly.
I have no choice. I have to make some changes. So bear with me, friends, and know my love is one thing that will never change.
~Brenda
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