Around 12:30pm, I wake up. It takes me half an hour for my brain to boot up, and get out of bed and awake enough to take my morning meds.
One hour after that, I can eat. It's my golden time of the day when I can think, and get some papers off my desk, pay the bills. Maybe go run errands or get meal planning done. If I go to the grocery store, I use those little motorized scooters with a basket to get around the store. It is so much easier for me to scoot around the store instead of walking. It used to be exhausting to go food shopping, but now I can actually go up and down the aisles and have fun without wearing myself out. And it's one thing I can do to take some of the burden off of my husband. I focus on doing one main thing to help care for the household per day.
In the late afternoon, Baby E comes home from grandma and papa's house, and we play for a while on the floor. She is starting to enjoy mirrors, blocks, and rattle toys. She also has some music CD's, and a little piano, xylophone and drum set to make noise with. I can hang out with her and play peekaboo, or else we go for a ride in the car and run some errands while enjoying the sunshine before dusk settles in.
Around 5, E starts her bedtime routine, and A and I swap on who gets baby ready for bed, and who is starting to work on dinner, or I just crash on the couch.
Around 7, we both crash on the couch and watch some TV, often while A makes up hours for work.
Then at 9, it's time to get the house picked up and ready for bed.
At any time between these daily boxes of time, I nap to recharge my batteries. Having FM/CFS and EDS is a lot like old school rechargeable batteries that lost the ability to hold a charge for very long; keep having to recharge them and resupply the stamina.
Depending on the night, I have more or less troubles with getting to sleep. Insomnia is a frequent companion. This isn't a bad thing when E is teething so I'm up anyway, and can give A a solid night's sleep before work the next day. Every month or so I'll have a night where I just can't sleep for anything, so I take the opportunity to brain dump, or just rest until it passes and take in some tunes.
Most nights I'm awake for a few hours after A retires for the evening, and work on doing some writing or reading books. I'm so thankful for a good library system nearby, and a system of friends to loan me books and music. A really good night is reading a few chapters of an enjoyable book, and then a good shuffle of music on my ipod. It's a recipe for a relaxed state, and good dreams to drift away into sleep, so I can do it all again tomorrow.
Wednesday, January 19, 2011
What helps?
One of my worst problems is muscle pain. With Hypermobile EDS, your collagen is compromised so the stuff that helps to hold your joints together isn't built right. Therefore, the muscles have to work too hard to hold things together.
One of my physical therpists explained to me that a strong muscle will not knot or spasm as easily as a weak muscle will. That made so much sense to me, as it was how I could lay on the sofa all week but still feel achy.
For me, the best way to deal with muscle spasms and knots are heat, or some sort of pressure held against the knot for 15-20 sec to release it. For that I have used the Backnobber, but found that I really have to be careful to not use too much pressure as sometimes it would cause a different muscle knot the next day. Sometimes it can be just right for hard to reach places in the neck and shoulders. I also use a ball that has a little give to it, like a tennis ball or small massage ball:
The Backnobber
Tennis Balls, for Myofascial Release
Massage Balls
Sometimes, I can't deal with standing in line, I get fidgety because my knees and ankles hyper-extend. These days, I'm doing better with being able to walk short distances, but sometimes I still feel like I need to conserve energy for whatever is I'm trying to get to, and use a wheelchair to get there. Airports are the main place where I use a wheelchair, I tried walking recently and ended up getting a bit woozy after it took a long time to get through security.
Some cool wheels
Sleep issues seem to be an issue for many of my Spoonie Buddies. My favorite thing is my memory foam mattress I bought 10 years ago. It has just enough give so I can sink into the mattress, but firm enough to have support. I bought it after I realized that I was going through mattress toppers every six months! I know some Spoonies that don't like memory foam because some contract heat and can add to night time sweating, but there are newer versions out now that incorporate cooling gel as a top layer. I haven't had a problem with that, as I sleep with a fan on in the background for white noise, and always have high quality jersey knit sheets on the bed. My favorite ones are from Lands End and I get some new ones whenever they have a good sale as they don't last forever, but they are so comfortable and help with temperature management (not too hot in the summer, not too cold in the winter)!
Memory foam mattress pads: At least 1 1/2" thick
Gel Memory Foam Mattress- AFW
Cotton Knit Sheets
One of my physical therpists explained to me that a strong muscle will not knot or spasm as easily as a weak muscle will. That made so much sense to me, as it was how I could lay on the sofa all week but still feel achy.
For me, the best way to deal with muscle spasms and knots are heat, or some sort of pressure held against the knot for 15-20 sec to release it. For that I have used the Backnobber, but found that I really have to be careful to not use too much pressure as sometimes it would cause a different muscle knot the next day. Sometimes it can be just right for hard to reach places in the neck and shoulders. I also use a ball that has a little give to it, like a tennis ball or small massage ball:
The Backnobber
Tennis Balls, for Myofascial Release
Massage Balls
Sometimes, I can't deal with standing in line, I get fidgety because my knees and ankles hyper-extend. These days, I'm doing better with being able to walk short distances, but sometimes I still feel like I need to conserve energy for whatever is I'm trying to get to, and use a wheelchair to get there. Airports are the main place where I use a wheelchair, I tried walking recently and ended up getting a bit woozy after it took a long time to get through security.
Some cool wheels
Sleep issues seem to be an issue for many of my Spoonie Buddies. My favorite thing is my memory foam mattress I bought 10 years ago. It has just enough give so I can sink into the mattress, but firm enough to have support. I bought it after I realized that I was going through mattress toppers every six months! I know some Spoonies that don't like memory foam because some contract heat and can add to night time sweating, but there are newer versions out now that incorporate cooling gel as a top layer. I haven't had a problem with that, as I sleep with a fan on in the background for white noise, and always have high quality jersey knit sheets on the bed. My favorite ones are from Lands End and I get some new ones whenever they have a good sale as they don't last forever, but they are so comfortable and help with temperature management (not too hot in the summer, not too cold in the winter)!
Memory foam mattress pads: At least 1 1/2" thick
Gel Memory Foam Mattress- AFW
Cotton Knit Sheets
Friday, January 14, 2011
My Birth Journey with Fibromyalgia and Ehlers Danlos Syndrome
I've had Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) since a bout with mononucleosis in August, 2000. I took two years off from work to deal with the debilitating fatigue and chronic pain, and through trial and error found a combination of pain and sleep medications to manage my symptoms. I was then able to return work full-time, have my own apartment, and keep up with my day to day life without many people even realizing that I have health problems.
After a year of my family and friends advising that I take the energy I was pouring into my efforts to stay employed, I lost my job in February 2009 and decided to use that energy to help take care of myself. Thankfully, I have a wonderful husband who is very supportive, and works from home so he's able to help care for me. It was a rough adjustment to being home all of the time, and it was very frustrating to not be able to do the things I wanted to do without careful planning and pacing of my available energy every day. It's a constantly shifting target.
By June 2009, my husband and I decided that we were not getting any younger, and would never be in an easier situation to try having a child of our own with both of us being home-based. A week later we were pregnant, and our journey began!
I consulted with two high-risk pregnancy doctors at prestigious medical centers in Chicago, and was told that the combination of meds I was on bore a low risk for the baby and I was counselled to remain on them throughout the course of my pregnancy. I was told that there was a slight chance that upon birth the baby would experience some withdrawal symptoms from my pain medication, but that they would be mild and not usually take more than a day to wean her. Both doctors insisted that I was on a very low dosage of my pain medication, and that the greater risk would be going off all of my meds and not being able to manage the pain and carry the pregnancy to full-term.
In weeks 30-35 the doctors started noticing that measurements of the baby were stable with the head, but that the body was 1 week behind, then 2 weeks behind. They decided that this indicated that the baby wasn't getting enough nutrition from the placenta, and at week 37 they scheduled admitted me to the hospital to try to induce labor.
The induction took four days, first trying Cervadil, and then 3 rounds of Pitocin, then breaking the bag of waters, to finally get my body into active labor with a good contraction pattern. After seven hours of full body shaking, sweating, screaming labor, I finally called the anesthesiologist for an epidural so I could conserve what energy I had left for getting ready to push as my body was almost exhausted. Two hours later, I was fully dilated, and even had enough sensation in my legs to flip over into a squat and push the baby out while leaning on a birth ball. It only took a half hour of pushing, and then she was out!
I found out after the birth that there was little to no reference material to guide the hospital pediatrician in structuring my baby's withdrawal from my medications, particularly Oxycontin. It turned out to be a much bigger deal than I was prepared for. There are not that many cases of young women needing to take controlled doses of Oxycontin, and the only information we had was gleaned from morphine addicted patients who do not take controlled, regular doses of their medications, but abuse whatever can be found on the street.
When my daughter started exhibiting withdrawal symptoms, the pediatrician started her on a course of morphine to help ease the side-effects and wean her down over the course of 1-2 weeks. The first dose ended up being much too high, and it knocked her out and she stopped feeding for almost an entire day. This really put us into panic mode as I was in the beginning of learning how to breastfeed and just beginning to establish my milk supply, so her lack of appetite put us back a few days.
After that first day, the morphine dose was adjusted so that my daughter became more alert and was feeding again, while her side-effects were manageable. Over the course of a week, her dosage was decreased a little bit every day and she began to feed reliably and gain weight.
Another problem she faced was her low birth weight. Delivering at 38 weeks because of signs of restricted growth syndrome, she was on the small side. She was born at 5 lbs, 6 oz, and dropped down to 5 lbs within the first few days. We do not know if my combination of medications caused the growth restriction, or if it just ended up being a fluke of my pregnancy as it often happens for no discernible reason. Post-delivery, the placenta did seem to be pretty healthy, so that was ruled out as a cause. She spent the first week in an incubator as she couldn't hold her body temperature.
After a week and a half in the nursery, she was totally weaned off morphine, had no more withdrawal symptoms, put on enough weight to maintain her body temperature, and could be sent home.
If I could do it over again, I would have consulted with the hospital pediatrician who treats the babies once they're born instead of the high-risk OB/GYNs who were treating me and more focused on the pregnancy. The hospital pediatrician had a better handle on what we'd be dealing with after the birth, and it was difficult to cope with during the hormonal swings of a post-partum woman. Things things are much less scary when they can be talked about before delivery, and have a plan of action in place and ready to go with everyone on the same page.
This was only the beginning of my journey in learning how to be a disabled mom, working with my team of doctors and my family to build a support network to meet my daughter's needs and keep me going. It is still a work in progress.
After a year of my family and friends advising that I take the energy I was pouring into my efforts to stay employed, I lost my job in February 2009 and decided to use that energy to help take care of myself. Thankfully, I have a wonderful husband who is very supportive, and works from home so he's able to help care for me. It was a rough adjustment to being home all of the time, and it was very frustrating to not be able to do the things I wanted to do without careful planning and pacing of my available energy every day. It's a constantly shifting target.
By June 2009, my husband and I decided that we were not getting any younger, and would never be in an easier situation to try having a child of our own with both of us being home-based. A week later we were pregnant, and our journey began!
I consulted with two high-risk pregnancy doctors at prestigious medical centers in Chicago, and was told that the combination of meds I was on bore a low risk for the baby and I was counselled to remain on them throughout the course of my pregnancy. I was told that there was a slight chance that upon birth the baby would experience some withdrawal symptoms from my pain medication, but that they would be mild and not usually take more than a day to wean her. Both doctors insisted that I was on a very low dosage of my pain medication, and that the greater risk would be going off all of my meds and not being able to manage the pain and carry the pregnancy to full-term.
In weeks 30-35 the doctors started noticing that measurements of the baby were stable with the head, but that the body was 1 week behind, then 2 weeks behind. They decided that this indicated that the baby wasn't getting enough nutrition from the placenta, and at week 37 they scheduled admitted me to the hospital to try to induce labor.
The induction took four days, first trying Cervadil, and then 3 rounds of Pitocin, then breaking the bag of waters, to finally get my body into active labor with a good contraction pattern. After seven hours of full body shaking, sweating, screaming labor, I finally called the anesthesiologist for an epidural so I could conserve what energy I had left for getting ready to push as my body was almost exhausted. Two hours later, I was fully dilated, and even had enough sensation in my legs to flip over into a squat and push the baby out while leaning on a birth ball. It only took a half hour of pushing, and then she was out!
I found out after the birth that there was little to no reference material to guide the hospital pediatrician in structuring my baby's withdrawal from my medications, particularly Oxycontin. It turned out to be a much bigger deal than I was prepared for. There are not that many cases of young women needing to take controlled doses of Oxycontin, and the only information we had was gleaned from morphine addicted patients who do not take controlled, regular doses of their medications, but abuse whatever can be found on the street.
When my daughter started exhibiting withdrawal symptoms, the pediatrician started her on a course of morphine to help ease the side-effects and wean her down over the course of 1-2 weeks. The first dose ended up being much too high, and it knocked her out and she stopped feeding for almost an entire day. This really put us into panic mode as I was in the beginning of learning how to breastfeed and just beginning to establish my milk supply, so her lack of appetite put us back a few days.
After that first day, the morphine dose was adjusted so that my daughter became more alert and was feeding again, while her side-effects were manageable. Over the course of a week, her dosage was decreased a little bit every day and she began to feed reliably and gain weight.
Another problem she faced was her low birth weight. Delivering at 38 weeks because of signs of restricted growth syndrome, she was on the small side. She was born at 5 lbs, 6 oz, and dropped down to 5 lbs within the first few days. We do not know if my combination of medications caused the growth restriction, or if it just ended up being a fluke of my pregnancy as it often happens for no discernible reason. Post-delivery, the placenta did seem to be pretty healthy, so that was ruled out as a cause. She spent the first week in an incubator as she couldn't hold her body temperature.
After a week and a half in the nursery, she was totally weaned off morphine, had no more withdrawal symptoms, put on enough weight to maintain her body temperature, and could be sent home.
If I could do it over again, I would have consulted with the hospital pediatrician who treats the babies once they're born instead of the high-risk OB/GYNs who were treating me and more focused on the pregnancy. The hospital pediatrician had a better handle on what we'd be dealing with after the birth, and it was difficult to cope with during the hormonal swings of a post-partum woman. Things things are much less scary when they can be talked about before delivery, and have a plan of action in place and ready to go with everyone on the same page.
This was only the beginning of my journey in learning how to be a disabled mom, working with my team of doctors and my family to build a support network to meet my daughter's needs and keep me going. It is still a work in progress.
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