So, what does my NORMAL look like? When I say that I'm having a good day vs a bad day, what exactly does all that entail? Here is a little peek into my 'not so normal-norm'.
GOOD DAY vs BAG DAY SNAP SHOT:
-GOOD: Wake up and take my morning handful of pills as soon as my feet hit the floor.
-BAD: Same scenario, just might have to add a few extra to the pile.
-GOOD: I can have anywhere from 3-5 minutes to make a child's breakfast, get me some coffee that my husband always has so lovingly prepared, and find my chair before I begin to feel ill.
-BAD: That means the kids are having cereal today, and I will be waiting to eat when it's safe to move about.
-GOOD: I usually 'reset' in my chair for a bit, then I might try to put the breakfast dishes in the dishwasher if it's a particularly GREAT day. (That would mean no dizziness or extreme tachycardia) I try to find something I can eat in less than 3 minutes. Yeah, that often doesn't end up with a particularly great breakfast.
-BAD: I still try to sit up and let my medicine kick in. This might mean taking a few extra pills to get through the 'battle'. It could be anything from a higher heart rate, dizziness, nausea, or the worst of all: the feeling I'm being held over the side of bed. Talking is usually at bare minimum. How I wake up usually lets me know how the course of the day will go. But as I've learned, things can look great and turn sour at any second with zero warning.
-GOOD: I usually need a good 30-45 minutes in my chair to allow the medicine to take effect. That means no shower for at least an hour after I wake up, sometimes it can take several hours to know I can do that safely. This is a good time to check emails, peak on FB, and plan the day.
-BAD: Showers can evoke all kinds of symptoms. And just because I can use my shower chair, doesn't mean I can do the after shower routine safely. There have been days I needed 1-2 hours to recuperate after a shower just to stand up again or not feel so sick.
-GOOD: I try to throw in a load of laundry if one of the kids have brought me their laundry. I've become a laundry whizz! This is my LAST remaining 'mom job' that I've been able to hang on to during good weeks. I have grown to love this task, as it's still my simple way of saying: "I love you".
-BAD: No laundry today, or if I try to do it, I can often 'pay' for it by getting sick for an hours on end. What is usually a good 3 minutes, can sometimes be actually only 30-45 seconds before the room goes dark. This is not a good thing to happen in a laundry room (from experience!).
-On a school day, my daughter and I move the books to the sofa and family room to begin our homeschool day. We usually begin around 8:15. JUST 4 MONTHS AGO, I HAD BEEN CONFINED TO MY BED 23 HOURS A DAY for over a YEAR........SO THIS WOULD NOT HAVE EVEN BEEN A VIABLE OPTION......LOOK HOW JUST A MINOR ADJUSTMENT HAS GIVEN ME ONE OF THE BEST GIFTS I'VE EVER RECEIVED. It's the gift of laying up 'non-material' treasures and investing in life long benefits!!!!!
-I'm able to keep my legs up and teach her on the sofa. She has a little desk that she pulls up right beside me. We've gotten VERY creative. We have been using a mini white board, lots of props, flashcards, and games. I usually teach her till about 11-12:00.
-GOOD: We race for lunch time. My gal likes to make her own lunch, which is such a blessing, cause I wouldn't have enough stand time to do her lunch and mine. You'd be amazed at the lunches I've come up with that only take 3 minutes to prepare. It's not good for me to sit and stand, sit and stand, so I try to go as fast as I can to do it all at once, safely! I am a picky eater (with lots of food intolerances) so I have struggled in this area, but am doing better now.
-BAD: Well, this has become an issue for sure. I've learned to have food on hand that can be grabbed quickly. As someone who is mostly immobile, this can cause weight to become an issue. I have to eat in a reclined position, so as long as I'm not nauseous, I can usually eat just fine.
GOOD: By 1:00, I feel like I've run a marathon. I haven't, of course, but my body revolts. Talking is very difficult for me and is the #1 thing to wear me out while reclining or seated. Taking silence breaks in the afternoon are imperative. My daughter usually works on crafts, h.w., plays, or goes outside during my rest time, as we have a NO tv during school week policy. (Yes, the housekeeper is here by this time and helping to watch the princess)
BAD: I'm usually down for the count if this is a bad day. I usually just lie there with the noise of the tv or the computer. If my eyes ache, which they often do, I will stare out the window till it passes. I hate not being able to be up at all when the boys arrive home from school. They are used to coming right home and heading into my bedroom. It's often a special time for us, but if I'm not feeling well, they share about their day while I listen.
GOOD: If I feel strong enough, I try to do the finishing touches to the dinner. I cannot cook anymore, but I can serve the plates, put a few things on the table, and maybe even make some guacamole (all in complete silence, of course. I cannot talk and stand at the same time anymore). I try to have the 'seasoning' of the meal saved for me, since we like very strong flavored foods (authentic Mexican is on the menu 3 out of 6 nights a week). The days that I am able to do this, it lifts my spirit like nothing I could possibly explain. This could quite possibly be the highlight of my day! It also means, I get to eat with the family. (I have to sit in a big chair with a foot rest that doesn't fit up to the table. It means all meals are eaten over my lap like at a picnic 24/7. While I've refined this into an art form, some meals can be quite tricky). Can u imagine how things would go at a restaurant? Not pretty!
BAD: This means dinner in the bed alone for me. This was the norm for me for about a year. I rarely felt well enough to hold up my head at the dinner table. Now, I would say it's more like just 1-2 times per week. It gets a little lonely, but if I'm sick enough, I really don't want company or to even talk. My family is used to it, but I do long and miss those evening chats around the dinner table. We always eat dinner as a family, so sometimes I listen from my main floor bedroom to the 'dinner chat' which lifts my spirits.
GOOD: Eating is often a trigger for me to feel worse. Normally, your 'gut' requires more blood flow to digest food. If you have poor blood flow anyway, digestion can take away the blood you need to sit up, talk, or to think clearly. After meals for me means...go lie down! Sometimes I just dream of how wonderful it would be to just hop up, grab my keys, and go shopping all by myself! I miss so many things, but my independence is probably the hardest!
BAD: Food can be a nasty trigger for almost any of my symptoms. However, if I'm already ill, I'm probably lying down anyway. Sometimes food can also comfort someone who feels awful. This has got to be something we watch for...not letting food comfort us when we ache. Sometimes chocolate is like the best medicine! :)
GOOD: Evenings: My evenings are always spent in the bed after dinner. Rare is the occasion I feel well enough to be on the sofa after a long day. My husband and I use this time to catch up on each other's day. Sometimes this is a great family time. Since we don't do evening tv, you would be AMAZED at the quality time you can have with your family gathered around the bed. We've had some of the best laughs, deep conversations, and teaching moments. During school nights, the kids often are busy with h.w. and extracurricular activities, so we don't at much time together as we would like. Every blue moon, I've been known to want a Target run. We've done this about half a dozen times this year. It's rare, but I love it!
BAD: Evenings: After dinner time until bedtime, I'm already resting. However, if it's a particularly difficult day or night, I am lying there hoping and praying this won't end in another hospital trip. Depending on the symptoms, my husband usually stays close by helping to nurse me and attend to my needs. This can make for a long evening for us both. For over a year, this was every night! Now, we are blessed to say it's not as often per week. My husband has to come home from work and be the 'all hands on deck' all alone. He's nursing me, taking care of 3 busy kids, and doing his evening work. It can get tricky!
GOOD: Sleep: A good night sleep for me is rare beyond rare! Ever since I became a mom, I haven't sleep great (like most moms out there)!!!!! However, due to my blood flow, I can never lie flat and my heart rate and blood pressure often respond to positions. It can be a long painful night. I do not take sleep aids, so I have resolved to get to bed early to get enough sleep. I'm satisfied if I only woke up a 6-12 times that night.
BAD: I've had some difficult nights. My heart pills tend to wear off while I'm sleeping. This is never a fun event. Some nights are worse than others. My blood flow also makes me dizzy and lightheaded while sleeping, and that will make getting up at all more difficult and dangerous. I have quite a few things that seem to get worse at night and learning to deal with them has been tricky.
So, there is just a little snapshot into what a 'normal' day can look like in my world!
The more I know about you the more impressed I am with you and your attitude.
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