Tuesday, June 28, 2005
Warning: this may be more than you want to know.....
Was thinking about what will happen if I begin the process of filing for permanent disability after my appointment with the rheumatologist next week. Social Security typically wants to know just how much you can and cannot do on a daily basis, having you fill out what is known as a functional capacity form. They will also expect my doctors to give their expert opinion as to my abilities. While I believe I've been pretty thorough listing my symptoms and their severity, I don't think anyone fully comprehends the sheer number of limitations I must face every single day. I decided the only way to be certain that my doctors know the full extent of my illness was to outline in excruciating detail a typical day for me with particular attention to what I am no longer able to do. I realize some of this information is probably more personal than I should be relating in a blog, so stop here if you're not prepared to read the gory details. But I do feel it is important to tell the whole thing without holding back because it demonstrates just how pervasive chronic illness can get. Also, it took me two days to write, and now I'm utterly exhausted and don't feel up to editing it to make it palatable. So here goes:
A Typical Day as of June 2005
I usually get up for the day after an average of 10 hours of rest. Not all of this time is spent sleeping due to insomnia, pain and muscle spasms, but I need to lie down for that long to get the swelling in my feet and legs to go down. The rest is also important in reducing the amount of daily fatigue. I won't have a fighting chance at accomplishing anything if I am wiped out before I start. However, I cannot stay in bed more than 12 hours because the muscles in my feet and legs start cramping up and I begin to feel hypoglycemic.
Getting out of the bed is tricky as my limbs might be numb, stiff or clumsy or some combination of the three. Sometimes I can't get out under my own power and must enlist my husband's help. On attempting to stand, I usually experience a great deal of muscle tightness in my legs and feet due to the hours of twitching overnight. So those first footsteps are excruciating unless my feet are numb. Vertigo and nausea upon first arising is pretty much a daily occurrence.
Once out of bed, I shuffle to the bathroom. It is common for me to have a bowel movement at that time, and if it is a strenuous one, I have to return immediately to bed to rest for at least fifteen minutes and sometimes for as long as two hours. I have no choice but to rest at times like that because I am too weak and dizzy to walk around. I have run into walls during these weak/dizzy episodes and injured myself.
My next task is to remove the crust from my eyes that has accumulated overnight and apply prescription eye drops. If I have gotten an eyelash stuck to my eyeball overnight, I must first use an eye wash to rinse it free and then have to wait 15 minutes to put in the drops. I also keep non-prescription drops handy wherever I go; the most frequent need for them during the day is when reading, watching tv, looking at a computer monitor, and anytime I'm near fans, air conditioning or heat vents.
Next I must drain and disassemble my humidifier. If I don't use one while I sleep, I develop nosebleeds from the dry air. I also must carry water with me throughout the day to prevent sudden dry coughs or choking because my throat is too dry.
I then sit on my bed with my water bottle and take medication for my thyroid, diabetes, reflux, and dry mouth. I also take vitamins C and E, co enzyme Q10, MSM and glusosamine/chondroitin for immune support and modest pain relief.
By now, my dog wants me to go downstairs and let him out. I must use extra caution on my first venture down the stairs as I am usually still stiff and/or numb in my limbs. More than once I have tripped and injured myself. On some occasions my husband must help me get downstairs.
At this point, if I'm going to exercise, I must do so relatively soon while I still have some energy. I go to an aquacise class twice a week for people with arthritis. Two other days a week I try to do 20 minutes on a Gazelle machine (a non-impact glider) in my home. Exercise is painful and exhausting, but I force myself to do it four days a week. I must skip the exercise, though, if I have too much numbness in my feet or legs to reliably stand. And I don't have the energy to do both exercise and an appointment on the same day, so on days I see a doctor, no workout. I cannot do activities such as walking the dog, riding a bike or lifting even light weights. If something weighs as much as a gallon of milk, I must use both hands to carry it. My maximum walking distance without pausing to rest is one to two blocks depending on energy and joint stiffness.
I eat a health bar or drink a Boost immediately after exercise because otherwise I will develop hypoglycemia symptoms. I also must rest for at least fifteen minutes or sometimes as long as a few hours. It is not uncommon for me to doze off while resting after exercise.
If I need to make phone calls, I try to do them a little while after exercise but before too much cognitive dysfunction sets in. During my "foggy" times, I transpose the numbers I'm dialing, forget who I've called when they answer, forget basic information like my own address, forget what I wanted to tell someone or press incorrect numbers in voice mail systems. More and more frequently, I find myself doing these things even when I'm feeling pretty clear headed.
If the outdoor temperature is under 90 degrees, I might attempt some light yard work. This usually consists of pulling weeds in a seated position for no longer than half an hour. I cannot mow the lawn, rake leaves, dig or shovel. I cannot squat or kneel for more than a minute or so, and must use caution working from a standing position because it frequently results in back strain or hamstring injury. Even 30 minutes is sometimes too much yard work, though, and I end up with carpal tunnel, back or hand pain in spite of precautions. Sometimes this pain persists for multiple days afterward.
If I do any work in the yard, I must rest immediately upon coming indoors because I am too light-headed and exhausted for anything else. It usually takes between a half hour and two hours to feel up to climbing the stairs to the bathroom to take a shower. Before I shower, I do a sinus rinse to clear away any mucus or dried blood in my nose. I have a grab bar by the tub to make it easier for me to climb in the tub. Sometimes my husband has to help me in or out of the tub. I generally cannot take baths because it is too painful to sit in the tub and too difficult to get out again, so I rely on showers. The warm water feels good on my sore muscles and helps relax them, but the process of showering can also be quite exhausting, sometimes to the point that I must sit on the toilet right after and catch my breath because I'm too wiped out to walk to the bed in the next room. I really should apply lotion to my dry cracked skin after a shower, but I seldom have the energy to do this. I also skip drying my hair or putting on any makeup most of the time because of the effort it takes. I frequently have to rest awhile after a shower before I can find the energy to get dressed.
Here is usually when I eat my "big" meal for the day. If I am going to eat meat and/or fresh veggies on a given day, this is when I do it because it will take the rest of the day to digest them due to my gastroparesis. A lot of days my remaining energy goes into cooking this meal. I must carefully calculate the amount of carbs, protein and fats at every meal due to the diabetes, and I cannot eat any wheat, rye, barley or oats due to gluten intolerance. I usually check my glucose levels before and after this meal.
With this meal, I take medication for dry mouth, thyroid, and inflammation. I also take calcium/magnesium to prevent muscle cramps, milk thistle for liver support, chromium picolinate to help with the diabetes, pharmaceutical grade fish oil as a supplemental anti-inflammatory, grape seed extract for immune support, papaya extract to aid digestion, acetyl-L carnitine, and more MSM and glucosamine/chondroitin.
Unfortunately, the time I am most likely to doze off is within an hour of finishing my big meal. I cannot lie down after eating because I must rely on gravity to aid in digestion. So what usually happens is I fall asleep siting up on the couch. If I did a workout, yard work or anything similarly fatiguing that day, I may be asleep for about an hour and a half.
I am usually able to put my dirty dishes in the dishwasher, but I have trouble washing dishes by hand, particularly items that need scrubbing like broiler pans. I usually end up soaking the difficult to clean items, and my husband does them. I can do simple de-cluttering in the house (sorting papers, etc.) but can only rarely dust, wash clothes, or wipe down countertops, and if I do those things, I usually experience increased pain and fatigue for multiple days afterward, even if I take rest breaks every 15 minutes or so. I cannot vacuum, mop, or scrub bathtubs or toilets as these activities usually result in back strain.
My next meal is usually a gluten free frozen dinner as I generally don't possess the energy to cook two meals in a row. Sometimes I'll add some fruit, but nothing too difficult to digest.
What I do after the meal varies according to how I feel. If my lymphedema isn't bad and I don't have a migraine, I will go upstairs and spend some time on the computer. I use the computer for all correspondence as it hurts my hands less to type rather than write longhand as long as I keep the messages relatively short. I must rely on computer spell checks as I frequently forget how to spell words now even though I was a state spelling finalist as a child. I handle all my finances on the computer since I can no longer do math well enough to reliably fill out a checkbook register. I double and sometimes triple check my figures against a calculator and/or financial software. I usually listen to music while on the computer to distract myself from the tinnitus in my left ear. I have to stretch frequently and avoid using the mouse too much when I'm on the computer. And I have to take breaks if I'm typing more than a couple of paragraphs. Sometimes I inadvertently doze off at the computer.
If my feet become swollen to the point I can't feel my toes, I go downstairs to the couch and elevate my feet. I will then read if I have sufficient comprehension. But if I don't understand what I'm reading, lose my place frequently and have to look at the same paragraph over and over, I will have to save the book for another day. Before I got sick, I used to read about a book a week, would have up to six going at once and could quote back much of what I had read. Now it can take me a few months to get through a single book, and I can't read more than one at a time. More than once recently I have gotten halfway through a book before I realize that I've read it before. I have to be careful of neck, arm and hand strain when reading.
If I have a migraine, I won't be able to read or use the computer, so I'll turn on the tv to an interview or something where I don't have to look at the screen very much. Medication doesn't work on these headaches, so I have to rely on topical remedies and simply wait until bedtime and hope I can sleep it off. My migraines last anywhere from about four hours to multiple days on end. One of my migraines persisted almost continuously for two months.
My last meal of the day consists of either eggs and cream of rice or gluten-free waffles because these are easy to make and to digest. If I eat something high fiber, high fat or highly acidic late in the day, I will wake up vomiting in the middle of the night. I have to stay up three to four hours after my last meal of the day to avoid this problem as well. So if I don't time my meal carefully, I can end up having to stay up much later than intended.
I take a sleep preparation about a half hour before I need to go to sleep. I take Lunesta if I haven't got any early appointments the next day, or a valerian root supplement if I have to be alert early the following day. If I take nothing, I won't fall asleep for at least an hour and may continue to awaken as frequently as every 20 minutes during the night. Lunesta helps me sleep a solid four hours before I have to get up and use the restroom, and then I can usually get back to sleep afterward, but my mental clarity isn't good for about 12 hours after I take it. With valerian root, I wake up as frequently as once an hour, but it's better than no sleep at all. One reason I wake up so frequently some nights is that I have difficulty rolling over in my sleep and pain awakens me when I'm stuck in one position for too long. This is despite a good quality mattress and my efforts to use good sleep posture. I have actually injured my back and my shoulder in my sleep.
I take medications at bedtime for estrogen therapy, dry mouth, allergies, an immuno-modulator and more prescription eye drops. I also take a multi-vitamin and more calcium/magnesium, MSM, glucosamin/chondroitin and papaya extract.
Mouth care at bedtime can be complicated. I use a special toothpaste for dry mouth, floss, a water pik, and a special fluoride treatment to protect my teeth which are decaying from Sjogren's. Then if I have mouth lesions, I must apply a steroid paste to them. If my tongue is cracked, I use a saliva replacement on that. Finally, I apply ointment to my lips so they won't crack and bleed overnight.
My bedtime ritual is not quite complete at this point. I must set up and run a humidifier in the bedroom, and if I have vaginal itching from extreme dryness, I must apply a moisturizer there. I place my water bottle on the headboard so I can sip from it during the night, and put mouthwash on the headboard if I took a Lunesta because it causes an unpleasant taste in my mouth. I adjust the covers so that I can throw them off if I get night sweats or pull a blanket on me if I get chills as I often get both in the same night. Now I'm finally ready to go to sleep.
A Typical Day as of June 2005
I usually get up for the day after an average of 10 hours of rest. Not all of this time is spent sleeping due to insomnia, pain and muscle spasms, but I need to lie down for that long to get the swelling in my feet and legs to go down. The rest is also important in reducing the amount of daily fatigue. I won't have a fighting chance at accomplishing anything if I am wiped out before I start. However, I cannot stay in bed more than 12 hours because the muscles in my feet and legs start cramping up and I begin to feel hypoglycemic.
Getting out of the bed is tricky as my limbs might be numb, stiff or clumsy or some combination of the three. Sometimes I can't get out under my own power and must enlist my husband's help. On attempting to stand, I usually experience a great deal of muscle tightness in my legs and feet due to the hours of twitching overnight. So those first footsteps are excruciating unless my feet are numb. Vertigo and nausea upon first arising is pretty much a daily occurrence.
Once out of bed, I shuffle to the bathroom. It is common for me to have a bowel movement at that time, and if it is a strenuous one, I have to return immediately to bed to rest for at least fifteen minutes and sometimes for as long as two hours. I have no choice but to rest at times like that because I am too weak and dizzy to walk around. I have run into walls during these weak/dizzy episodes and injured myself.
My next task is to remove the crust from my eyes that has accumulated overnight and apply prescription eye drops. If I have gotten an eyelash stuck to my eyeball overnight, I must first use an eye wash to rinse it free and then have to wait 15 minutes to put in the drops. I also keep non-prescription drops handy wherever I go; the most frequent need for them during the day is when reading, watching tv, looking at a computer monitor, and anytime I'm near fans, air conditioning or heat vents.
Next I must drain and disassemble my humidifier. If I don't use one while I sleep, I develop nosebleeds from the dry air. I also must carry water with me throughout the day to prevent sudden dry coughs or choking because my throat is too dry.
I then sit on my bed with my water bottle and take medication for my thyroid, diabetes, reflux, and dry mouth. I also take vitamins C and E, co enzyme Q10, MSM and glusosamine/chondroitin for immune support and modest pain relief.
By now, my dog wants me to go downstairs and let him out. I must use extra caution on my first venture down the stairs as I am usually still stiff and/or numb in my limbs. More than once I have tripped and injured myself. On some occasions my husband must help me get downstairs.
At this point, if I'm going to exercise, I must do so relatively soon while I still have some energy. I go to an aquacise class twice a week for people with arthritis. Two other days a week I try to do 20 minutes on a Gazelle machine (a non-impact glider) in my home. Exercise is painful and exhausting, but I force myself to do it four days a week. I must skip the exercise, though, if I have too much numbness in my feet or legs to reliably stand. And I don't have the energy to do both exercise and an appointment on the same day, so on days I see a doctor, no workout. I cannot do activities such as walking the dog, riding a bike or lifting even light weights. If something weighs as much as a gallon of milk, I must use both hands to carry it. My maximum walking distance without pausing to rest is one to two blocks depending on energy and joint stiffness.
I eat a health bar or drink a Boost immediately after exercise because otherwise I will develop hypoglycemia symptoms. I also must rest for at least fifteen minutes or sometimes as long as a few hours. It is not uncommon for me to doze off while resting after exercise.
If I need to make phone calls, I try to do them a little while after exercise but before too much cognitive dysfunction sets in. During my "foggy" times, I transpose the numbers I'm dialing, forget who I've called when they answer, forget basic information like my own address, forget what I wanted to tell someone or press incorrect numbers in voice mail systems. More and more frequently, I find myself doing these things even when I'm feeling pretty clear headed.
If the outdoor temperature is under 90 degrees, I might attempt some light yard work. This usually consists of pulling weeds in a seated position for no longer than half an hour. I cannot mow the lawn, rake leaves, dig or shovel. I cannot squat or kneel for more than a minute or so, and must use caution working from a standing position because it frequently results in back strain or hamstring injury. Even 30 minutes is sometimes too much yard work, though, and I end up with carpal tunnel, back or hand pain in spite of precautions. Sometimes this pain persists for multiple days afterward.
If I do any work in the yard, I must rest immediately upon coming indoors because I am too light-headed and exhausted for anything else. It usually takes between a half hour and two hours to feel up to climbing the stairs to the bathroom to take a shower. Before I shower, I do a sinus rinse to clear away any mucus or dried blood in my nose. I have a grab bar by the tub to make it easier for me to climb in the tub. Sometimes my husband has to help me in or out of the tub. I generally cannot take baths because it is too painful to sit in the tub and too difficult to get out again, so I rely on showers. The warm water feels good on my sore muscles and helps relax them, but the process of showering can also be quite exhausting, sometimes to the point that I must sit on the toilet right after and catch my breath because I'm too wiped out to walk to the bed in the next room. I really should apply lotion to my dry cracked skin after a shower, but I seldom have the energy to do this. I also skip drying my hair or putting on any makeup most of the time because of the effort it takes. I frequently have to rest awhile after a shower before I can find the energy to get dressed.
Here is usually when I eat my "big" meal for the day. If I am going to eat meat and/or fresh veggies on a given day, this is when I do it because it will take the rest of the day to digest them due to my gastroparesis. A lot of days my remaining energy goes into cooking this meal. I must carefully calculate the amount of carbs, protein and fats at every meal due to the diabetes, and I cannot eat any wheat, rye, barley or oats due to gluten intolerance. I usually check my glucose levels before and after this meal.
With this meal, I take medication for dry mouth, thyroid, and inflammation. I also take calcium/magnesium to prevent muscle cramps, milk thistle for liver support, chromium picolinate to help with the diabetes, pharmaceutical grade fish oil as a supplemental anti-inflammatory, grape seed extract for immune support, papaya extract to aid digestion, acetyl-L carnitine, and more MSM and glucosamine/chondroitin.
Unfortunately, the time I am most likely to doze off is within an hour of finishing my big meal. I cannot lie down after eating because I must rely on gravity to aid in digestion. So what usually happens is I fall asleep siting up on the couch. If I did a workout, yard work or anything similarly fatiguing that day, I may be asleep for about an hour and a half.
I am usually able to put my dirty dishes in the dishwasher, but I have trouble washing dishes by hand, particularly items that need scrubbing like broiler pans. I usually end up soaking the difficult to clean items, and my husband does them. I can do simple de-cluttering in the house (sorting papers, etc.) but can only rarely dust, wash clothes, or wipe down countertops, and if I do those things, I usually experience increased pain and fatigue for multiple days afterward, even if I take rest breaks every 15 minutes or so. I cannot vacuum, mop, or scrub bathtubs or toilets as these activities usually result in back strain.
My next meal is usually a gluten free frozen dinner as I generally don't possess the energy to cook two meals in a row. Sometimes I'll add some fruit, but nothing too difficult to digest.
What I do after the meal varies according to how I feel. If my lymphedema isn't bad and I don't have a migraine, I will go upstairs and spend some time on the computer. I use the computer for all correspondence as it hurts my hands less to type rather than write longhand as long as I keep the messages relatively short. I must rely on computer spell checks as I frequently forget how to spell words now even though I was a state spelling finalist as a child. I handle all my finances on the computer since I can no longer do math well enough to reliably fill out a checkbook register. I double and sometimes triple check my figures against a calculator and/or financial software. I usually listen to music while on the computer to distract myself from the tinnitus in my left ear. I have to stretch frequently and avoid using the mouse too much when I'm on the computer. And I have to take breaks if I'm typing more than a couple of paragraphs. Sometimes I inadvertently doze off at the computer.
If my feet become swollen to the point I can't feel my toes, I go downstairs to the couch and elevate my feet. I will then read if I have sufficient comprehension. But if I don't understand what I'm reading, lose my place frequently and have to look at the same paragraph over and over, I will have to save the book for another day. Before I got sick, I used to read about a book a week, would have up to six going at once and could quote back much of what I had read. Now it can take me a few months to get through a single book, and I can't read more than one at a time. More than once recently I have gotten halfway through a book before I realize that I've read it before. I have to be careful of neck, arm and hand strain when reading.
If I have a migraine, I won't be able to read or use the computer, so I'll turn on the tv to an interview or something where I don't have to look at the screen very much. Medication doesn't work on these headaches, so I have to rely on topical remedies and simply wait until bedtime and hope I can sleep it off. My migraines last anywhere from about four hours to multiple days on end. One of my migraines persisted almost continuously for two months.
My last meal of the day consists of either eggs and cream of rice or gluten-free waffles because these are easy to make and to digest. If I eat something high fiber, high fat or highly acidic late in the day, I will wake up vomiting in the middle of the night. I have to stay up three to four hours after my last meal of the day to avoid this problem as well. So if I don't time my meal carefully, I can end up having to stay up much later than intended.
I take a sleep preparation about a half hour before I need to go to sleep. I take Lunesta if I haven't got any early appointments the next day, or a valerian root supplement if I have to be alert early the following day. If I take nothing, I won't fall asleep for at least an hour and may continue to awaken as frequently as every 20 minutes during the night. Lunesta helps me sleep a solid four hours before I have to get up and use the restroom, and then I can usually get back to sleep afterward, but my mental clarity isn't good for about 12 hours after I take it. With valerian root, I wake up as frequently as once an hour, but it's better than no sleep at all. One reason I wake up so frequently some nights is that I have difficulty rolling over in my sleep and pain awakens me when I'm stuck in one position for too long. This is despite a good quality mattress and my efforts to use good sleep posture. I have actually injured my back and my shoulder in my sleep.
I take medications at bedtime for estrogen therapy, dry mouth, allergies, an immuno-modulator and more prescription eye drops. I also take a multi-vitamin and more calcium/magnesium, MSM, glucosamin/chondroitin and papaya extract.
Mouth care at bedtime can be complicated. I use a special toothpaste for dry mouth, floss, a water pik, and a special fluoride treatment to protect my teeth which are decaying from Sjogren's. Then if I have mouth lesions, I must apply a steroid paste to them. If my tongue is cracked, I use a saliva replacement on that. Finally, I apply ointment to my lips so they won't crack and bleed overnight.
My bedtime ritual is not quite complete at this point. I must set up and run a humidifier in the bedroom, and if I have vaginal itching from extreme dryness, I must apply a moisturizer there. I place my water bottle on the headboard so I can sip from it during the night, and put mouthwash on the headboard if I took a Lunesta because it causes an unpleasant taste in my mouth. I adjust the covers so that I can throw them off if I get night sweats or pull a blanket on me if I get chills as I often get both in the same night. Now I'm finally ready to go to sleep.
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