A Good Day for me:
Lately, a good day is pretty good. On a good day, I might have no GI problems, or mild GI problems that are managed with medicine. (I follow my regular diet daily.) I might have just my "baseline" headache--generalized head pain, achy feeling, mostly in the back around the rods--the pain level can be as low as a 2 (although this is based on my new, modified pain scale). My energy may be high enough (with the help of caffeine pills) to be active several hours--up to 5. By active, I mean not resting in bed or the recliner. And my POTS symptoms may be well-managed with salt tablets and Midodrine, along with high water intake. This means that I am alert and able to walk around much of the day. My joints may only hurt when walking or standing in place. On a good day, I may have no trouble concentrating or coming up with words. Looking at all of this, I'd say I have a good day about once a week.
A Bad Day for me:
A bad day is still pretty terrible. Any number of things can cause a bad day, and often it's more than one symptom combined. It could be a migraine that doesn't abate with medicine--pain levels can really max out with this. I may pretty intense GI problems, including severe bloating, pain, or even intestinal obstruction. It could be severe POTS, where I am out of breath just from sitting up. And despite regular caffeine intake, I may have severe lethargy. Also from the POTS, I may be completely out of it, and go into a state of reduced consciousness for any length of time. I can have full-body muscle aches and joints that hurt with every movement. Bad days happen about once a week, too.
An Average Day for me:
So I guess the other five days are average days. I'll usually have mild GI problems, despite the usual diet and medicine. I often have a migraine, but many times the rescue medication I take will help it to go away in 2-6 hours. On an average day, my POTS symptoms force me to rest for the first 5 hours of the day...yes, 5 hours. That usually means I wake up around 10:00 and have to rest until 3:00-ish. I walk like a drunk person in a stupor all morning. I have trouble coming up with words or focusing on much in the mornings. And my energy level can be pretty decent later in the day, beginning around 4:00. Finally, on an average day, my joints, especially my knees and hips hurt a lot of the time. My spine often hurts. I get pretty bad muscle contractures in my neck and shoulders. Sudden vertigo spells are still common. If I have been somewhat active for even a few hours, I crash hard by 9:00 pm. Those are common symptoms on an average day.
I recognize just how improved I really am since my fusion revision surgery in the summer of 2010. I couldn't be more grateful for the good days, and even the average days. Having less of the bad days is incredible. So, even though I have plenty of symptoms, sometimes all at once, I am so grateful I had that surgery. I know I could be better, but I am so grateful to Dr. Bolognese for giving me another chance at living my life. I don't want to think about what I would be like if I had continued to decline.
So, I have plenty of limits, lots of meds, and a pretty regular, restricted schedule to my days. I can't exercise in any of the ways I would like to. I can't stay out late or drink alcohol. I still use a wheelchair at times and can't stand in one place for too long. I feel really out of it, and I have pain every moment. I deal with some truly horrific days, that feel completely impossible to survive. I visit doctors a lot. I can't work more than a few hours a week. I am constantly balancing and managing my symptoms. And yet, I can live independently most days of my life! Due to this, my quality of life has improved so much from where it was just two years ago. I would love to improve even more. I'd love to be able to work even 20 hours/week and exercise regularly. I'd love to be confident that I'll be able to raise a child one day. But if this is as good as it gets, I can accept it. And that's an amazing place for me to be in. :)
Wednesday, April 11, 2012
Wednesday, April 4, 2012
You're sick? What's wrong with you?
It's getting hard to keep track of the answer at this point. Even people that are aware of my illnesses don't understand how they cause my long and varied list of symptoms.
So, I'm updating the list of things wrong with me and what problems they cause me.
I have Chiari Malformation. This was diagnosed at age 18. It's a congenital birth defect. My skull is too small for my brain. This causes compression of the cerebellar tonsils and the back of the brain. The brain is compressed into the top of the spinal cord, which causes a blockage of craniospinal fluid (CSF). This causes increased pressure in the brain, which causes many neurological symptoms, and a heck of a headache. I've had two operations to treat this, at age 18 and 20. They removed part of my skull and my C-1 vertebra. It is as treated as it will ever be. Surgery is not a cure, but it prevents progression of symptoms. The neurological symptoms of this condition will be lifelong. This includes problems with balance (walking like a drunk person), coordination, cognitive function (commonly referred to as brain fog), memory, concentration, visual disturbances, neck pain, eye pain, jaw pain, spontaneous vertigo, changes in reflexes, etc. etc. etc. A list of symptoms can be found here: http://chiarione.org/symptoms.html
I have Ehlers Danlos Syndrome. It was diagnosed at age 25. I have features of the hypermobile type and the classic type. It is a genetic connective tissue disorder. The collagen in the tissues is weak, fragile, and extra-stretchy. Symptoms of this are known to progress throughout life. Symptoms are seemingly endless, due to the important role that collagen plays in holding the body together and maintaining normal function.
This includes:
-Loose, unstable, and painful joints
-Early onset osteoarthritis
-Easy bruising
-Fragile and weak blood vessels--this causes difficulty maintaining blood pressure and oxygenation of the brain and other parts of the body
-Hypotonia (crappy and weak muscles)
-Muscle and joint pain
-Gastrointestinal dysfunction due to weak lining of the intestines
-Osteopenia/osteoporosis (crappy bones)
-So much pain throughout the body!!!
Wikipedia has a good article on it: http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
A more scientific explanation can be found here: http://www.ncbi.nlm.nih.gov/books/NBK1244/
I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). I was diagnosed at age 19. Dysautonomia is a dysregulation of the autonomic nervous system. The autonomic nervous system regulates organ function throughout the body. Heart rate, blood pressure, temperature, digestion, and every other automatic function of the body can be affected. POTS is a common secondary condition related to EDS, due to the crappy blood vessels. It can also be related to Chiari, due to damage to the brainstem.
Symptoms of this condition are also widespread throughout the body. They include:
-Low blood pressure
-Dizziness
-Fainting
-Shortness of breath
-Excessive sweating
-Functional bowel disorders
-Bladder dysfunction
-Pupillary dysfunction
-Exercise intolerance
-Body temperature control problems
-Fatigue
-Weakness
-Generally feeling sick
A great explanation of this condition can be found here: http://www.dinet.org/index.htm
I have cranio-cervical instability. This was diagnosed at age 19. When someone with Ehlers Danlos Syndrome has surgery to treat Chiari, the skull becomes unstable. The treatment for this is a surgery called a cranio-cervical fusion. This surgery involves implanting titanium rods, screws, plates, and wires to support the skull by attaching it to the spine. My fusion goes from the skull to C-4. My first fusion was done at age 20. My second was done at age 26. The symptoms of this are devastating, causing complete disability. Symptoms include:
-Headache, dizziness, and nausea upon upright posture
-Severe autonomic dysfunction, particularly upon upright posture
A journal article explaining the connection between Chiari and EDS can be found here: http://www.chiariconnectioninternational.com/Hereditary_disorders%20_connective%20tissue.php
I have chronic migraines, which are distinct from my other types of headaches. this problem has worsened recently, and is being managed with medications, with some degree of success. Migraines can cause intense headaches, sensitivity to light and sound, pain upon exertion or movement, nausea, and generalized body pain.
I have a tethered spinal cord, specifically Occult Tight Filum Terminale. This was diagnosed at age 24. It means that the bottom of the spinal cord is pulled too tight. This causes nerve damage to the surrounding areas, especially the bowel and bladder. It was treated with a surgery called a section of the filum terminale. They removed part of my L-4 vertebra to access the base of the spinal cord, where they cut the spinal cord to separate it from the spine and relieve the tension. Again, surgery stops the progression of symptoms, but nerve damage is generally not reversible, so symptoms continue.
Sometimes my life is about trying to get better, and sometimes it's about learning to accept limitations and new and ongoing symptoms. Constant management of symptoms, through lifestyle changes, medication, and sometimes surgery is needed.
A problem I find when trying to explain this to people is that these conditions are just not heard of, so people really don't understand how much they affect me.
One way I've been thinking of it lately is comparing it to more common conditions where the symptoms are better understood by the majority of people.
These conditions have similar symptoms to my conditions:
Fibromyalgia
Heart Disease
Irritable Bowel Syndrome
Chronic Migraines
Various neurological problems
Chronic Fatigue Syndrome
Chronic Pain Syndromes
etc. etc. etc.
So, my life is a lot like living with all of those conditions at the same time, plus some other more unique symptoms.
All of this, and many people in my life have no idea that I'm sick at all. I modify my lifestyle to deal with changes. I have to miss out on plenty of activities. But when I'm around people, I usually cover up the symptoms and slap on a smile. I try to hide my shaky hand, my dizzy spells, my racing heart, chills, hot flashes and constant pain. It's better than having to explain all of this to everyone! But it does get exhausting pretending to be healthy.
So, I'm updating the list of things wrong with me and what problems they cause me.
I have Chiari Malformation. This was diagnosed at age 18. It's a congenital birth defect. My skull is too small for my brain. This causes compression of the cerebellar tonsils and the back of the brain. The brain is compressed into the top of the spinal cord, which causes a blockage of craniospinal fluid (CSF). This causes increased pressure in the brain, which causes many neurological symptoms, and a heck of a headache. I've had two operations to treat this, at age 18 and 20. They removed part of my skull and my C-1 vertebra. It is as treated as it will ever be. Surgery is not a cure, but it prevents progression of symptoms. The neurological symptoms of this condition will be lifelong. This includes problems with balance (walking like a drunk person), coordination, cognitive function (commonly referred to as brain fog), memory, concentration, visual disturbances, neck pain, eye pain, jaw pain, spontaneous vertigo, changes in reflexes, etc. etc. etc. A list of symptoms can be found here: http://chiarione.org/symptoms.html
I have Ehlers Danlos Syndrome. It was diagnosed at age 25. I have features of the hypermobile type and the classic type. It is a genetic connective tissue disorder. The collagen in the tissues is weak, fragile, and extra-stretchy. Symptoms of this are known to progress throughout life. Symptoms are seemingly endless, due to the important role that collagen plays in holding the body together and maintaining normal function.
This includes:
-Loose, unstable, and painful joints
-Early onset osteoarthritis
-Easy bruising
-Fragile and weak blood vessels--this causes difficulty maintaining blood pressure and oxygenation of the brain and other parts of the body
-Hypotonia (crappy and weak muscles)
-Muscle and joint pain
-Gastrointestinal dysfunction due to weak lining of the intestines
-Osteopenia/osteoporosis (crappy bones)
-So much pain throughout the body!!!
Wikipedia has a good article on it: http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
A more scientific explanation can be found here: http://www.ncbi.nlm.nih.gov/books/NBK1244/
I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). I was diagnosed at age 19. Dysautonomia is a dysregulation of the autonomic nervous system. The autonomic nervous system regulates organ function throughout the body. Heart rate, blood pressure, temperature, digestion, and every other automatic function of the body can be affected. POTS is a common secondary condition related to EDS, due to the crappy blood vessels. It can also be related to Chiari, due to damage to the brainstem.
Symptoms of this condition are also widespread throughout the body. They include:
-Low blood pressure
-Dizziness
-Fainting
-Shortness of breath
-Excessive sweating
-Functional bowel disorders
-Bladder dysfunction
-Pupillary dysfunction
-Exercise intolerance
-Body temperature control problems
-Fatigue
-Weakness
-Generally feeling sick
A great explanation of this condition can be found here: http://www.dinet.org/index.htm
I have cranio-cervical instability. This was diagnosed at age 19. When someone with Ehlers Danlos Syndrome has surgery to treat Chiari, the skull becomes unstable. The treatment for this is a surgery called a cranio-cervical fusion. This surgery involves implanting titanium rods, screws, plates, and wires to support the skull by attaching it to the spine. My fusion goes from the skull to C-4. My first fusion was done at age 20. My second was done at age 26. The symptoms of this are devastating, causing complete disability. Symptoms include:
-Headache, dizziness, and nausea upon upright posture
-Severe autonomic dysfunction, particularly upon upright posture
A journal article explaining the connection between Chiari and EDS can be found here: http://www.chiariconnectioninternational.com/Hereditary_disorders%20_connective%20tissue.php
I have chronic migraines, which are distinct from my other types of headaches. this problem has worsened recently, and is being managed with medications, with some degree of success. Migraines can cause intense headaches, sensitivity to light and sound, pain upon exertion or movement, nausea, and generalized body pain.
I have a tethered spinal cord, specifically Occult Tight Filum Terminale. This was diagnosed at age 24. It means that the bottom of the spinal cord is pulled too tight. This causes nerve damage to the surrounding areas, especially the bowel and bladder. It was treated with a surgery called a section of the filum terminale. They removed part of my L-4 vertebra to access the base of the spinal cord, where they cut the spinal cord to separate it from the spine and relieve the tension. Again, surgery stops the progression of symptoms, but nerve damage is generally not reversible, so symptoms continue.
Sometimes my life is about trying to get better, and sometimes it's about learning to accept limitations and new and ongoing symptoms. Constant management of symptoms, through lifestyle changes, medication, and sometimes surgery is needed.
A problem I find when trying to explain this to people is that these conditions are just not heard of, so people really don't understand how much they affect me.
One way I've been thinking of it lately is comparing it to more common conditions where the symptoms are better understood by the majority of people.
These conditions have similar symptoms to my conditions:
Fibromyalgia
Heart Disease
Irritable Bowel Syndrome
Chronic Migraines
Various neurological problems
Chronic Fatigue Syndrome
Chronic Pain Syndromes
etc. etc. etc.
So, my life is a lot like living with all of those conditions at the same time, plus some other more unique symptoms.
All of this, and many people in my life have no idea that I'm sick at all. I modify my lifestyle to deal with changes. I have to miss out on plenty of activities. But when I'm around people, I usually cover up the symptoms and slap on a smile. I try to hide my shaky hand, my dizzy spells, my racing heart, chills, hot flashes and constant pain. It's better than having to explain all of this to everyone! But it does get exhausting pretending to be healthy.
Thursday, February 16, 2012
Diet changes for GI symptoms
So, about a year ago, I started a diet to lower my cholesterol. It totally worked. In two months, my cholesterol went down by 40 points. The biggest change was that I stopped eating desserts and added sugars. Here was my usual daily diet for the last year:
Cheerios and Fiber One with Lactaid skim milk
1 banana
1 red pepper
sandwich with natural peanut butter and whole wheat bread
1/2 Chicken breast
Brown rice
Broccoli
Snack: Organic graham crackers
That was it. I also lost about 20 pounds. I can't seem to keep much weight on without dessert.
Anyway, after my GI symptoms really flared up in January, I went to the gastroenterologist. I found out nothing, of course. So, I managing my symptoms with a new diet. It's based on the Eating for IBS diet and the FODMAP diet, in case you're interested.
Now, I'm eating this every day:
Cheerios with unsweetened almond milk
2 brown rice cakes with natural peanut butter
1 banana
1/2 chicken breast
Brown rice
cooked carrot shreds
Snack: organic oat cereal
So, this diet has relieved my severe symptoms for the most part (bloating, abdominal pain, and partial obstructions). But I'm not sure how it will affect my cholesterol. I also don't feel like I'm getting a lot of really nutritious foods. The hardest things to cut out nutritionally are wheat and various FODMAP fruits and vegetables. I can experiment with other foods to see if I can tolerate any of them, but so far, it hasn't worked. And I want to avoid GI symptoms, if possible.
Cheerios and Fiber One with Lactaid skim milk
1 banana
1 red pepper
sandwich with natural peanut butter and whole wheat bread
1/2 Chicken breast
Brown rice
Broccoli
Snack: Organic graham crackers
That was it. I also lost about 20 pounds. I can't seem to keep much weight on without dessert.
Anyway, after my GI symptoms really flared up in January, I went to the gastroenterologist. I found out nothing, of course. So, I managing my symptoms with a new diet. It's based on the Eating for IBS diet and the FODMAP diet, in case you're interested.
Now, I'm eating this every day:
Cheerios with unsweetened almond milk
2 brown rice cakes with natural peanut butter
1 banana
1/2 chicken breast
Brown rice
cooked carrot shreds
Snack: organic oat cereal
So, this diet has relieved my severe symptoms for the most part (bloating, abdominal pain, and partial obstructions). But I'm not sure how it will affect my cholesterol. I also don't feel like I'm getting a lot of really nutritious foods. The hardest things to cut out nutritionally are wheat and various FODMAP fruits and vegetables. I can experiment with other foods to see if I can tolerate any of them, but so far, it hasn't worked. And I want to avoid GI symptoms, if possible.
Thursday, February 9, 2012
Nonstop
Okay, so I was awake for much of the night due to a severe migraine. I had symptoms last night that were probably precursors to the migraine, including a visual aura, which I don't usually get. But I had gone 5 days without a migraine previously, which is an improvement.
Now, today, my severe GI symptoms are back, despite my strict diet. I called up the GI office, and they've decided to treat me for Small Intestinal Bacterial Overgrowth (SIBO), even though I cannot afford to get the hydrogen breath test to diagnose it. The treatment is simply 2 weeks of antibiotics. Assuming I can tolerate the medication, it's a simple thing to try. They're even going to give me a sample of the medication, so I don't have to pay for anything. If this doesn't work, I'll have to have an abdominal x-ray done next to check the state of my intestines.
I'm going to be very impatient for these two weeks of antibiotics to see if they are helping. The pain is so severe sometimes, I don't know how I can avoid the E.R. I am glad to be trying something. I can't go to the office to pick up the meds until tomorrow, so that's when I'll start the medicine.
For now, I have peppermint oil capsules, a heating pad, and abdominal massage as my only treatment for this severe pain.
Like I said, it is always something...
Now, today, my severe GI symptoms are back, despite my strict diet. I called up the GI office, and they've decided to treat me for Small Intestinal Bacterial Overgrowth (SIBO), even though I cannot afford to get the hydrogen breath test to diagnose it. The treatment is simply 2 weeks of antibiotics. Assuming I can tolerate the medication, it's a simple thing to try. They're even going to give me a sample of the medication, so I don't have to pay for anything. If this doesn't work, I'll have to have an abdominal x-ray done next to check the state of my intestines.
I'm going to be very impatient for these two weeks of antibiotics to see if they are helping. The pain is so severe sometimes, I don't know how I can avoid the E.R. I am glad to be trying something. I can't go to the office to pick up the meds until tomorrow, so that's when I'll start the medicine.
For now, I have peppermint oil capsules, a heating pad, and abdominal massage as my only treatment for this severe pain.
Like I said, it is always something...
Wednesday, February 8, 2012
Another Rough Day
Well, I'm posting again, so soon, because things have been really hard.
My mood has been low for a few days.
My energy level has also been low--this often has a direct effect on my mood. Literally, I can feel completely hopeless, then take some caffeine, and switch to a very positive mood. This leads to a very up and down life, though.
My body hurts today, a lot. My head hurts, not quite a migraine, but very sensitive to light and very achy. I can't even look at the screen as I type. My muscles all over my body hurt today. I don't know what I did to deserve that one. My knees are particularly painful today, as they are hurting all the time, not just when I'm standing. I'm feeling very nauseated with abdominal fullness and pain, as well. I followed the diet pretty strictly today, so I don't really know what I did to deserve that one either.
A very smart commenter on my last blog post mentioned that perhaps my GI symptoms came on as a result of the new migraine medication. I thought this might be it, but then I remembered that these symptoms actually started several weeks before I started the medication. Also, the pain seems to be very reactive to particular foods, with the exception of tonight.
In addition, my POTS has been particularly troublesome today. Lots of dizzy spells, head rushes, feeling easily out of breath, and chills.
I haven't been sleeping well, which doesn't help with these symptoms. I have a lot of trouble getting comfortable at night. Then, when I fall asleep with pillows carefully arranged to support my body, I inevitably move into a painful position with strain on at least one of my joints while I sleep.
I think I'll go to bed early tonight, although that could make me more restless during the night.
As always, my health is very full of ups and downs, and I can recognize that this is just a down time. That doesn't make it any easier to deal with while I'm in it.
It's hard to keep working each day and put on a cheerful smile when I'm feeling so low. I finish one day of work but immediately start dreading the next.
And yes, I'm considering seeing my psychiatrist, but I will try to give it a little longer...or I may call him tomorrow.
My mood has been low for a few days.
My energy level has also been low--this often has a direct effect on my mood. Literally, I can feel completely hopeless, then take some caffeine, and switch to a very positive mood. This leads to a very up and down life, though.
My body hurts today, a lot. My head hurts, not quite a migraine, but very sensitive to light and very achy. I can't even look at the screen as I type. My muscles all over my body hurt today. I don't know what I did to deserve that one. My knees are particularly painful today, as they are hurting all the time, not just when I'm standing. I'm feeling very nauseated with abdominal fullness and pain, as well. I followed the diet pretty strictly today, so I don't really know what I did to deserve that one either.
A very smart commenter on my last blog post mentioned that perhaps my GI symptoms came on as a result of the new migraine medication. I thought this might be it, but then I remembered that these symptoms actually started several weeks before I started the medication. Also, the pain seems to be very reactive to particular foods, with the exception of tonight.
In addition, my POTS has been particularly troublesome today. Lots of dizzy spells, head rushes, feeling easily out of breath, and chills.
I haven't been sleeping well, which doesn't help with these symptoms. I have a lot of trouble getting comfortable at night. Then, when I fall asleep with pillows carefully arranged to support my body, I inevitably move into a painful position with strain on at least one of my joints while I sleep.
I think I'll go to bed early tonight, although that could make me more restless during the night.
As always, my health is very full of ups and downs, and I can recognize that this is just a down time. That doesn't make it any easier to deal with while I'm in it.
It's hard to keep working each day and put on a cheerful smile when I'm feeling so low. I finish one day of work but immediately start dreading the next.
And yes, I'm considering seeing my psychiatrist, but I will try to give it a little longer...or I may call him tomorrow.
Tuesday, February 7, 2012
Health in Flux
Everything seems to be constantly in flux. I have one health crisis after another...often several at a time. Here's what I've been dealing with lately:
-Frequent, chronic migraines. I'm seeing a headache clinic for this and experimenting with new medications. No more Topamax (i.e. Dopamax--makes you tired and dumb). Trying Lamictal for prevention and experimenting with Relpax and Tramadol for breakthrough migraines. I'm also in physical therapy. The PT involves a technique called dry needling. I've been very interested in trying this treatment, but it can take some time to work, so I'm being patient. The visits are a bit painful, as a small needle is worked deep through my muscle contractures. But it's nothing I can't handle. About a 5 out of 10, I would say.
-Severe GI problems. I've had some severe abdominal cramping and bloating. I've had to return to the "Eating for IBS" diet, along with a new one called the FODMAP diet. My symptoms are much better with restricted eating, but I'm sure this diet isn't great for my cholesterol, because it involves a lot of simple carbs and very little fruits and vegetables. Hopefully, this will be temporary. When this problem first came on, I had to be checked for an abdominal aortic aneurysm. The pain in my abdomen was very severe, and I could feel my pulse like a second heartbeat in my stomach. I tested negative for this, which is good. I was also tested for Celiac Disease, which runs in my family. I tested negative for this, too, which is good. It just means that I need to manage these symptoms with diet and supplements, because the doctors don't know how to help me without more of a diagnosis.
-EDS pain. My joints hurt, more often, and more severely than usual. In particular, my knees, hips, and shoulders are the most painful. There's not much to do for this. I do wear knee braces when needed to help hold things together. There's usually no actual joint injury. Just joint pain due to the joint being too loose.
-Fatigue. This has been in flux. Some days, I thought I was doing a lot better, but I seem to have come back down. So, no real progress for this. My only treatment is caffeine pills, cause Provigil is too expensive. It also seemed to stop working after a while.
-Muscle fatigue. This is a new one. Due to EDS, my muscles get sore very easily. Unfortunately, the day after using a muscle, I'm experiencing muscle fatigue, where the muscle stops working. Nothing to do for this except rest. Most often this is in my hands or forearms. At times, I drop things frequently as my muscle gives out. I can't seem to crochet anymore due to how quickly the muscle becomes fatigued.
-Sleep. I'm always tired. But I'm having trouble sleeping through the night. My sleep is often restless with multiple wake-ups. I need extra sleep since the quality of sleep is poor. I would do well with an afternoon nap, but my current lifestyle doesn't allow it.
-Mood. As always, with many health problems waxing and waning, my mood seems unstable lately. I just have days when it all seems impossible and pointless. I just feel so hopeless. It doesn't seem right, since I've been able to make so much progress in the last few years (no wheelchair, much less time in bed, starting to work a few hours a week...). But it's all so hard. Every day is so hard. It's an ongoing problem for me. Every day is such a challenge, that I just get discouraged. I know that life will never come easily to me. Some things get better; some get worse. So unpredictable. But at the same time, it feels so much the same. Always fighting some new symptom, or returning symptom. Always trying to pull myself through another day. Trying to smile enough to not be completely unpleasant to be around. Trying not to cry about it too often. I do have supportive people in my life. But if I lean on them all the time, it wears on them a lot.
-Coping. Other than that, it's just dealing with life. Cooking. Housework. Part time work. Loneliness. Trying to keep it all together. It's so overwhelming at times. And it's hard to keep up the appearance of being healthy, happy, and normal, when everything seems to be falling apart.
That's the update. Thanks for listening.
-Frequent, chronic migraines. I'm seeing a headache clinic for this and experimenting with new medications. No more Topamax (i.e. Dopamax--makes you tired and dumb). Trying Lamictal for prevention and experimenting with Relpax and Tramadol for breakthrough migraines. I'm also in physical therapy. The PT involves a technique called dry needling. I've been very interested in trying this treatment, but it can take some time to work, so I'm being patient. The visits are a bit painful, as a small needle is worked deep through my muscle contractures. But it's nothing I can't handle. About a 5 out of 10, I would say.
-Severe GI problems. I've had some severe abdominal cramping and bloating. I've had to return to the "Eating for IBS" diet, along with a new one called the FODMAP diet. My symptoms are much better with restricted eating, but I'm sure this diet isn't great for my cholesterol, because it involves a lot of simple carbs and very little fruits and vegetables. Hopefully, this will be temporary. When this problem first came on, I had to be checked for an abdominal aortic aneurysm. The pain in my abdomen was very severe, and I could feel my pulse like a second heartbeat in my stomach. I tested negative for this, which is good. I was also tested for Celiac Disease, which runs in my family. I tested negative for this, too, which is good. It just means that I need to manage these symptoms with diet and supplements, because the doctors don't know how to help me without more of a diagnosis.
-EDS pain. My joints hurt, more often, and more severely than usual. In particular, my knees, hips, and shoulders are the most painful. There's not much to do for this. I do wear knee braces when needed to help hold things together. There's usually no actual joint injury. Just joint pain due to the joint being too loose.
-Fatigue. This has been in flux. Some days, I thought I was doing a lot better, but I seem to have come back down. So, no real progress for this. My only treatment is caffeine pills, cause Provigil is too expensive. It also seemed to stop working after a while.
-Muscle fatigue. This is a new one. Due to EDS, my muscles get sore very easily. Unfortunately, the day after using a muscle, I'm experiencing muscle fatigue, where the muscle stops working. Nothing to do for this except rest. Most often this is in my hands or forearms. At times, I drop things frequently as my muscle gives out. I can't seem to crochet anymore due to how quickly the muscle becomes fatigued.
-Sleep. I'm always tired. But I'm having trouble sleeping through the night. My sleep is often restless with multiple wake-ups. I need extra sleep since the quality of sleep is poor. I would do well with an afternoon nap, but my current lifestyle doesn't allow it.
-Mood. As always, with many health problems waxing and waning, my mood seems unstable lately. I just have days when it all seems impossible and pointless. I just feel so hopeless. It doesn't seem right, since I've been able to make so much progress in the last few years (no wheelchair, much less time in bed, starting to work a few hours a week...). But it's all so hard. Every day is so hard. It's an ongoing problem for me. Every day is such a challenge, that I just get discouraged. I know that life will never come easily to me. Some things get better; some get worse. So unpredictable. But at the same time, it feels so much the same. Always fighting some new symptom, or returning symptom. Always trying to pull myself through another day. Trying to smile enough to not be completely unpleasant to be around. Trying not to cry about it too often. I do have supportive people in my life. But if I lean on them all the time, it wears on them a lot.
-Coping. Other than that, it's just dealing with life. Cooking. Housework. Part time work. Loneliness. Trying to keep it all together. It's so overwhelming at times. And it's hard to keep up the appearance of being healthy, happy, and normal, when everything seems to be falling apart.
That's the update. Thanks for listening.
Wednesday, December 7, 2011
Emotional Breakdown Days
So, some days, I just have to break down. I feel it building over time. I know the breakdown is coming. But it's still so overwhelming when it finally hits.
Today, there were several factors contributing. I've just started rebuilding a home piano studio from nothing, after having to stop teaching 2 years ago (and once before that). So, after advertising for months, I finally have some new students. It seems like it should be easy: one student a day, four days a week. But I've been completely disabled for 2 full years (and a while before that). And I've been working so hard on rebuilding my health since my cranio-cervical fusion in August 2010. I know from my first fusion in 2003 that it takes about 2 years to fully rebuild. But I also know it doesn't always work, since my first fusion failed. I've been devoting all my energy to getting healthy (and planning my wedding, which was last summer, then marketing my new piano studio in a new city). But still, most of my energy since surgery has gone toward getting healthy. I eat healthy. I allow plenty of time for sleep (but can't actually sleep lately). I don't push myself too hard very often. But I do push myself enough to get the minimum of exercise needed each day to keep my POTS under control. But in reality, I spend a lot of time resting and taking care of myself.
But it just ISN'T ENOUGH. I am still SO sick. A GOOD day for me is when I get myself breakfast, take my pills, rest in the recliner for 2 hours, get my lunch, take my pills, rest 2-3 more hours...then maybe am able to get dressed by 3:00. 3:00 is a great day! This only happens after I've had tons of salt and water and high doses of Midodrine PLUS caffeine pills to get me going. I can have a couple of "active hours"-meaning not in bed or in the recliner. Most days, I get dressed just before dinner to be honest. And I still can't shower as often as I'd like. About twice a week.
Supposedly, my head has been fused in the optimal position this time....and so many people just like me are completely relieved of symptoms after this surgery....blah blah blah. My head hurts!!! My constant head pain is lower than before...around a 2 at it's lowest. But about half the days, I get a migraine, cluster headache, or a pressure headache that blasts the pain to a 7-10. And these headaches are all day headaches. And that's just my head.
Today, I had a baseline headache of about 4, but I had severe nausea all day. No vomiting. I know, I'm lucky there's never vomiting. But nausea and zero appetite are pretty freaking miserable too. Of course, sometimes I can eat, but my GI tract doesn't know how to digest food, and I get very sick from that. Anyway, today I was super-nauseated with a mid-range headache. I got through breakfast and lunch. And then, I crashed, which is a possibility every day. Something in my careful daily formula didn't work right, and I just never got going. I could barely move. When my husband got home around 3:30, I couldn't react to him. I could barely see through my slits of eyes. He rushed and got me a salt pill and water. That didn't work so we got a caffeine pill. I chugged 20 ounces of water. About 20 minutes later, I was finally a bit awake. But not enough to get up...just to open my eyes and maintain a conversation.
I had to teach a piano lesson at 5:45. And, like magic, I pulled it off. It's amazing how much you can fake. It took everything I had.
Then, the realization set in. I have a new piano student tomorrow. I have another new student on Monday and another new one on Tuesday. What in the world am I thinking??? How do I expect to build a business with my health like this? I didn't make it to the music store, so I don't have all the materials for the new student tomorrow. Plus, tomorrow is a 3:00 lesson!!! Why did I ever agree to teach at 3:00! And what am I thinking taking on new students when I can barely survive a day?
That's when it all just broke down. I just had to cry and cry at my mess of a life...at how hard it all is...at how pointless all of this hard work seems. I rebuild a business for what? Just to get overworked and end up having to quit again??? And disability won't even pay me since my marriage. So I can't even help that way.
But it's not just that. After we got married, I realized that I could get dressed most days, and my husband was gone a lot of the time. And I wanted something to do with my time. Something useful. Something to help out. Especially since we are barely getting by right now...or actually not really getting by.
Accepting less from myself is something I've done so many times. There were very high hopes for my life. I was supposed to do something great. I had straight A's, was talented, excelled at everything I did. I could do anything. Then, in high school, I had to start accepting less. At first, I just took one less AP class. Then, I went to a small school, cause it was close to home. In college, I had to take a year off for my first cranio-cervical fusion. I had such trouble picking a major, because I wanted to do more, but had to accept less. I finally settled on an interdepartmental major...just so I could graduate. And chose a career that I had already been doing for a few years, but didn't really enjoy. I went on disability at 22, and was in an electric wheelchair. I rebuilt, but got knocked back down and had surgery again at 26. I was down for a while. Now I'm rebuilding again. But it feels like a pointless cycle. Rebuild your life. Become more. Do something with yourself. Get knocked down so hard you have no choice but to do nothing. Accept less. Just survive. Start to rebuild again...
I don't see the point right now. It's all so hard. But for what? Should I even be doing this? Or should I accept that I can't do this? That my body is just not getting better and this cycle is pointless. That no matter how hard I try, my body will fail me. That the other shoe will always drop. This EDS body is not getting stronger. It's getting harder to hold together. My joints will continue to hurt worse my whole life. These symptoms are not going away. Headache is not leaving. Extreme fatigue is going nowhere. It's all just learning to cope. Learning new ways to manage. But it's not really about getting better anymore, is it? I'm past that point. I will have "good" and bad days. But I won't get better. This is the body I'm stuck with for life. And I should know from experience, that acceptance is the real key to emotional coping. If I can just accept that this is the state of my body, then I will be able to deal with it.
There's no more fight to "recover." It's just an ultra-marathon now...the kind with frequent obstacles, and uphill 90% of the time. It's all about endurance. And the only way to endure is to stay strong. Accept the course of your life. Accept this is the crappy body you're stuck with for life. There will be some better days. But most of them will be the same miserable fight you've been dealing with for 10 years.
I can't imagine why anyone would read this. But I had to write it today. It just got to be too much today. Some days are brighter. I know this intellectually. But it's a stormy life. And I've got to hold on tight, cause it's not getting any easier. I know that I wouldn't face this life without my husband, the best friend a girl could ever have, and my mom, who always listens and knows what to say, even when there's nothing to say. I would not deal with all of this without the love and support of my family. I would just give up.
I'm done with metaphors for tonight. Sorry. It's a rough one.
Today, there were several factors contributing. I've just started rebuilding a home piano studio from nothing, after having to stop teaching 2 years ago (and once before that). So, after advertising for months, I finally have some new students. It seems like it should be easy: one student a day, four days a week. But I've been completely disabled for 2 full years (and a while before that). And I've been working so hard on rebuilding my health since my cranio-cervical fusion in August 2010. I know from my first fusion in 2003 that it takes about 2 years to fully rebuild. But I also know it doesn't always work, since my first fusion failed. I've been devoting all my energy to getting healthy (and planning my wedding, which was last summer, then marketing my new piano studio in a new city). But still, most of my energy since surgery has gone toward getting healthy. I eat healthy. I allow plenty of time for sleep (but can't actually sleep lately). I don't push myself too hard very often. But I do push myself enough to get the minimum of exercise needed each day to keep my POTS under control. But in reality, I spend a lot of time resting and taking care of myself.
But it just ISN'T ENOUGH. I am still SO sick. A GOOD day for me is when I get myself breakfast, take my pills, rest in the recliner for 2 hours, get my lunch, take my pills, rest 2-3 more hours...then maybe am able to get dressed by 3:00. 3:00 is a great day! This only happens after I've had tons of salt and water and high doses of Midodrine PLUS caffeine pills to get me going. I can have a couple of "active hours"-meaning not in bed or in the recliner. Most days, I get dressed just before dinner to be honest. And I still can't shower as often as I'd like. About twice a week.
Supposedly, my head has been fused in the optimal position this time....and so many people just like me are completely relieved of symptoms after this surgery....blah blah blah. My head hurts!!! My constant head pain is lower than before...around a 2 at it's lowest. But about half the days, I get a migraine, cluster headache, or a pressure headache that blasts the pain to a 7-10. And these headaches are all day headaches. And that's just my head.
Today, I had a baseline headache of about 4, but I had severe nausea all day. No vomiting. I know, I'm lucky there's never vomiting. But nausea and zero appetite are pretty freaking miserable too. Of course, sometimes I can eat, but my GI tract doesn't know how to digest food, and I get very sick from that. Anyway, today I was super-nauseated with a mid-range headache. I got through breakfast and lunch. And then, I crashed, which is a possibility every day. Something in my careful daily formula didn't work right, and I just never got going. I could barely move. When my husband got home around 3:30, I couldn't react to him. I could barely see through my slits of eyes. He rushed and got me a salt pill and water. That didn't work so we got a caffeine pill. I chugged 20 ounces of water. About 20 minutes later, I was finally a bit awake. But not enough to get up...just to open my eyes and maintain a conversation.
I had to teach a piano lesson at 5:45. And, like magic, I pulled it off. It's amazing how much you can fake. It took everything I had.
Then, the realization set in. I have a new piano student tomorrow. I have another new student on Monday and another new one on Tuesday. What in the world am I thinking??? How do I expect to build a business with my health like this? I didn't make it to the music store, so I don't have all the materials for the new student tomorrow. Plus, tomorrow is a 3:00 lesson!!! Why did I ever agree to teach at 3:00! And what am I thinking taking on new students when I can barely survive a day?
That's when it all just broke down. I just had to cry and cry at my mess of a life...at how hard it all is...at how pointless all of this hard work seems. I rebuild a business for what? Just to get overworked and end up having to quit again??? And disability won't even pay me since my marriage. So I can't even help that way.
But it's not just that. After we got married, I realized that I could get dressed most days, and my husband was gone a lot of the time. And I wanted something to do with my time. Something useful. Something to help out. Especially since we are barely getting by right now...or actually not really getting by.
Accepting less from myself is something I've done so many times. There were very high hopes for my life. I was supposed to do something great. I had straight A's, was talented, excelled at everything I did. I could do anything. Then, in high school, I had to start accepting less. At first, I just took one less AP class. Then, I went to a small school, cause it was close to home. In college, I had to take a year off for my first cranio-cervical fusion. I had such trouble picking a major, because I wanted to do more, but had to accept less. I finally settled on an interdepartmental major...just so I could graduate. And chose a career that I had already been doing for a few years, but didn't really enjoy. I went on disability at 22, and was in an electric wheelchair. I rebuilt, but got knocked back down and had surgery again at 26. I was down for a while. Now I'm rebuilding again. But it feels like a pointless cycle. Rebuild your life. Become more. Do something with yourself. Get knocked down so hard you have no choice but to do nothing. Accept less. Just survive. Start to rebuild again...
I don't see the point right now. It's all so hard. But for what? Should I even be doing this? Or should I accept that I can't do this? That my body is just not getting better and this cycle is pointless. That no matter how hard I try, my body will fail me. That the other shoe will always drop. This EDS body is not getting stronger. It's getting harder to hold together. My joints will continue to hurt worse my whole life. These symptoms are not going away. Headache is not leaving. Extreme fatigue is going nowhere. It's all just learning to cope. Learning new ways to manage. But it's not really about getting better anymore, is it? I'm past that point. I will have "good" and bad days. But I won't get better. This is the body I'm stuck with for life. And I should know from experience, that acceptance is the real key to emotional coping. If I can just accept that this is the state of my body, then I will be able to deal with it.
There's no more fight to "recover." It's just an ultra-marathon now...the kind with frequent obstacles, and uphill 90% of the time. It's all about endurance. And the only way to endure is to stay strong. Accept the course of your life. Accept this is the crappy body you're stuck with for life. There will be some better days. But most of them will be the same miserable fight you've been dealing with for 10 years.
I can't imagine why anyone would read this. But I had to write it today. It just got to be too much today. Some days are brighter. I know this intellectually. But it's a stormy life. And I've got to hold on tight, cause it's not getting any easier. I know that I wouldn't face this life without my husband, the best friend a girl could ever have, and my mom, who always listens and knows what to say, even when there's nothing to say. I would not deal with all of this without the love and support of my family. I would just give up.
I'm done with metaphors for tonight. Sorry. It's a rough one.
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