Saturday, September 3, 2011

My health and how it impacts my life

I know this starts out on a low note, but gets uplifting at the end. I promise!

My health impacts my family every day.

My kids already know that Mom is going to say "maybe" or "we'll see" no matter what they ask to do later in the day or the week. They know this because they've had to live with a Mom who has fibromyalgia, chronic fatigue, persistent nerve damage in my foot, and a tendency to pick up things like sinus infections and colds thanks to the compromised immune system that can be a part of the fibromyalgia package. They know that in the morning I may talk about what I'd love to make for dinner that evening, may even go to the store and get the ingredients, but by dinner time I will likely be unable to do the task and it'll be "fix your own dinner night"...again. I've missed most of my son's ballgames and martial arts events. I don't sign up to volunteer for school things because I know I can't be reliable. 

My husband and I don't get to do many things together because so often I just don't have it in me to go anywhere or do anything. He often is the one who has to take care of things like laundry and cooking, because I can't lift the laundry basket or stand in the kitchen for more than a few minutes at a time. I've nearly given up even daydreaming about getting a job - I wouldn't let anyone hire me, because I know I couldn't be counted on to be at the job at a given time on a given day - so I can't contribute to the family's finances. (I can, however, contribute to it's expenditures thanks to frequent doctor visits and approximately a metric ton of medication I take on a daily basis.)

My health impacts my friendships, too. My brain still believes I can move quickly and efficiently, but my body has other plans for me. This results in my often being late to pretty much everything. I've set the clock in my car about nine minutes fast to try to trick myself and get places faster. I have gotten to the point that I respond to most every party or gathering with a "maybe", because I just can't know whether I'll be mobile two weeks from now - I can't even predict how I'll be two HOURS from now - and I know that must be so frustrating to the person hosting the event. I want to be able to help my friends when they need it - help them move to a new place, or bring over some food or flowers when they're feeling under the weather - but I know when I say "let me know if there's anything I can do" that it probably rings hollow. There are so many fun things that crop up - day trips and live comedy and such - and I feel guilty every time I RSVP with that "maybe", every time I DO go but feel like I'm holding others back from doing all they wanted to do. 

Ultimately, when I'm having bad days (and they seem to be more and more frequent each passing year), it's hard for me to be with the people I care about and do the things I want to do for them. It's hard to admit to myself how bad things are getting, to accept it all. My mind still wants to push the belief that I'm okay, that I can make plans, do things. My body just isn't on board with that at all.

Aside from everyone else, my health impacts ME.

I've always wanted to go back to school, and I've put it off and put it off. Now, though, I just don't think I have the mental ability to retain what I hear, to learn things and process them. There's no way I can be certain I'll have the energy or ability to walk to different classes. Even if it was an online learning situation, I don't know if I have the ability to concentrate and focus enough to consistently complete assignments.

I have so many things I want to just be able to get up and do. I want to paint the little entryway a different color. I want to organize my office/craft room so I can sew and scrapbook and read. I want to be able to plan a meal and actually cook everything I'd planned to cook. I want to be able to stand at the sink and wash all the stuff that isn't supposed to go in the dishwasher. I want to be able to do a load of my laundry and put it away all in the same day. I want to be able to go places with my friends and be on time. I want to be able to RSVP with a "yes" and be able to follow through with it. I want to clean out the garage and clean out the clutter from the house and have a big garage sale. I want to be able to clean my house enough that I'm not ashamed to have people over. I want to be able to host a game night or a movie night. 

I want to feel better. It's why I keep my eye out for studies to participate in - so that maybe I can help researchers figure out what fibromyalgia is all about and find reliable treatments. I want to be able to think clearly and remember things.

When my pain levels are on the high end, day in and day out, it's so hard to be positive. It's so easy for that negative self-talk to creep in and take hold. During the worst of it, I worry about everything. I feel useless and worthless and hopeless when I'm in constant pain at a high level for days on end. Am I developing alzheimer's or is it just "fibro fog" that's got me thinking fuzzy? Do I actually have a terminal illness they just haven't discovered yet? If this is how I feel at 40, will I be able to function at all 20 or 30 years from now? If I'll be hurting this bad for the rest of my life, will I have to exist like this or worse for 20 years or more? Will my friends tire of my inability to do things and stop inviting me altogether? Has my inability to do things harmed my kids in some way? Will my family finally realize how much I hold them back and move on without me? Will my body always feel more like a prison than a temple?

So I try. I push myself to go out and do things if I'm able to move at all - even if it results in my being pretty much glued to the bed for days afterwards. I enjoy being with the wonderful group of friends I've got here, so I'll do my dead level best to hang out with them. I love going to sci-fi conventions and the like, so I'll go ahead and get a pass, even if it means I just find a room to sit in the whole day and not looking around and seeing lots of different things. I get online and research things, because I love to learn even if I don't retain it. I love doing things with my family, so I'll go to the fair with them even though I'll wind up planting myself in a chair somewhere while they go on rides and play games - I'll be "home base", a place to check in or drop off things they've bought or won. I'll keep daydreaming about going to school, and getting a job, and being a provider. I'll keep trying to clean the house, even if I only get one tiny task done. 

I'm not giving up. I'm not giving up the things I love or the people I love just because my body is falling apart. I'm going to keep trying, keep fighting, keep hoping, keep praying. I'm going to try to remember and live with the grace my Dad showed throughout the pain and suffering he endured in his last years. The scene of his lying in his recliner, eyes closed, clearly in pain, and saying "thank you, Lord" on every exhale sticks with me. It reminds me to be grateful for everything, even the pain, because it let's me know I'm still alive. I'm still here in the world with my family and my friends, able to enjoy them and love them and cherish them. And that's something worth fighting for.

No comments:

Post a Comment

If you can't say something nice...