WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, March 8, 2012

A day in the life of a "normal."

Abby and I were watching our secret addiction (Big Rich Texas, talk about a waste of brain cells! But we LOVE it!)Monday morning and chatting as we usually do.

We got to talking about what a "normal" family manages to accomplish in a day vs what she accomplishes. We talked about various friends and family and she said it was flabbergasting to think of how much energy they have. She said sometimes she does wonder what it would be like to live a home where everyone had 10 times her energy- she actually shuddered a bit! :-) We both thought it would interesting to have a "normal" energy person live her life for a day, and she to at least be able to silently observe those normal families.

Abby has always said that she felt she is not as bad off as other patients. She has never had the energy or stamina, and thus she says she isn't really sure of what she is missing. She feels terrible for patients who had normal energy, and then who lost it.

Abby has a few different cycles, mostly we could base them around sleep. She has "hibernation" cycles and then "short sleep" cycles.

The hibernation cycles don't come very often. Usually every 3-6 months. These periods can include from 15-20 hours of sleep a day. Sometimes the cycle is just a week- other times she has gone a month to 6 weeks of sleeping around the clock. During hibernation periods she de-conditions since she isn't moving at all. Which makes her more symptomatic with certain issues when she starts to come out of the cycle. She will have drops in her oxygen, more dysautonomia symptoms, more "wobbly" legs. As she comes out of that cycle she tends to have continued days of better sleep for awhile until she starts into cycle "short sleep." During hibernation she will wake up long enough to sip or nibble, but not much. Even after weeks of hardly eating she won't lose weight- it is almost like she is "frozen in time." The couple weeks after hibernation despite the de conditioning and dysautonomia symptoms a lot of things seem better. Her head feels clearer. She feels more grounded. She has less GI issues. Often even her kidneys will be throwing less protein. Just as her de-conditioning issues start to fad and she doesn't feel as weak from the hibernating, and she finally feels like she is making some solid improvement she will go into "short sleep" cycle.

Short sleep cycle usually means 4-5 hours of poor quality sleep at a time,shortly before a hibernation this could be reduced to 2-3 hours at a time. I would say 75 percent of the time Abby is in "short sleep mode." Lots of catnaps throughout the day. Her total sleep usually still exceeds 10 hours, but very broken. For the first week or so of this cycle she seems to handle it well- I guess she is still caught up from her hibernation mode. Day by day we notice her proteinuria starts to jump. Her GI issues kick in. It seems she her body becomes hypersensitive to every food, supplement or medication. Over all though, despite feeling deprived of sleep, this is probably the time she has the most energy, though sometimes it more "negative" energy. She will need to move around because her legs get restless, but the pacing will wear her out. After about 2 weeks of this cycle she starts to get rundown. Usually this is when she will catch a cold. Her allergy symptoms kick in with a vengeance. This is when "new" or "revolving" symptoms start to spring up. The latest is reactive hypoglycemia. Last round her intention tremors became more permanent. A month into this cycle she starts to really drag. She will struggle to get out of bed. Showering becomes a huge hassle. If her last hibernation was a long one, we will notice new Beau's lines in her toenails at this point in the cycle. Her hair will start to fall out. Her muscles will become achy. She becomes exquisitely sensitive to temperatures. She will have bouts of kidney pain, her pulse will jump,BP drops, she will feel lightheaded and have to be careful to move slowly to avoid fainting. During short sleep cycle, she will have a day or two here and there that are just "great", and I think they make the other days where she rarely feels like crawling out of her comfy bed far more bearable. During short sleep cycle it becomes very important to find balance. If she has too many Dr.s appointments or other activities in a row, this is when she has a few really bad days. Which usually lead to a cold, sinus infection, more GI issues, extreme proteinuria.. Last short cycle we noticed that after a nap her eyes were unable to focus, it was disturbing to see her eyes moving in the wrong directions when she tried to focus. Thankfully, once she was fully awake the muscles tighten back up.

Looking back, Abby has had these cycles since birth. Just milder. Sleeping and eating issues are considered normal in the baby and toddler world, though clearly Abby's issues were on the extreme side even then. Since puberty each rotation of these cycles has caused her to become more and more symptomatic. Each cycle brings some new symptom and they are sticking around instead of being alleviated by hibernating.

A few months ago, Abby realized that if she wants to go somewhere(movies is a favorite)she no longer has the energy to shower, dress and go on the same day. She will shower the day before. Rest. Wait for her hair to dry. Brush it out. Nap. Wake up at the crack of dawn, figure out what she is going to wear and round it up. Rest. We try to plan for afternoon movies so she has all morning to get herself together. She will throw on her clothes, brush her teeth and head out. If she is having good days, she might spend extra time on her hair or makeup.. After a movie she gets home slides into PJ's and naps. After a couple hours of rest/nap she feels restored enough to want to come out and eat. The day after the movies means extra sleep, sometimes wobbly legs. Maybe the dysautonomia symptoms will be stirred up, or her GI. It takes a few days of her short cycle sleeping before she is ready to shower again.

For years I have tried to get Abby to explain-describe what she "feels like" so I can try to understand what is going on. The best thing I can describe it to would be how you feel after you have had the worst flu ever. Where you had a fever of a 104.. You ached and laid in bed thinking God must be punishing you because why else would you feel so rotten! You have a cough that makes you pee yourself with the effort. Where you are just too sick to even think about trying to get to the Dr. office because it would just take too much energy. Where you know if you get much worse your only option is the ER. You send loved ones to the store, hoping that one of the zillion over the counter medicines will at least knock you out if not relieve any symptoms.. After about a week, you wake up one morning and lay there and realize it is finally going away. You tentatively make it to the bathroom and crawl into the shower. Your whole body shakes and breaks out into a sweat with the effort. Finally clean you try to find a clean bed to crawl into and fall into the most solid sleep out of pure exhaustion, as you nod off you feel exhilarated that you are finally on the mend though weak as a kitten. That feeling of shaking and sweating with the effort and that awful weakness is what I suspect Abby feels like more often then not.

I wish I could step into her body for a few days to help me understand how different her body functions. Maybe I could learn something that would help her, but more then that it would be a lesson in empathy for me. In my younger days I had the type of energy that would inspire me to wash windows at 10pm at night. These days not so much. I miss that energy. I cannot imagine though, feeling so weak all the time. Maybe Abby is right, for her it isn't as bad because every day of her life is a battle to move, or a battle to try to keep up with all the "normals". Maybe a few days of living the life of a normal would make this far worse for her. Ignorance can be bliss.

Still, though I think I understand how she feels, I know in the scheme of things I am a Normal. I cannot understand truly what she is coping with daily. All I can do is try.


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