How are you doing?
This is the most common question that I get, and it is a hard one to answer! If you truly want to know, keep reading and I’ll explain.
My most common answer to this question is “I’m doing well.” That doesn’t mean, though, that I am physically feeling well. To be honest, I never feel well. I am always tired, always weak, and always sleepy. In addition to that, I have any combination of the following: headache, nausea, tachycardia, blood pressure that is plummeting, blurred vision, numb fingers, pain, sensory overload, difficulty thinking, memory problems, shortness of breath, dizziness, lightheadedness, and many more symptoms.
In a way my answer to the question, “How are you feeling?” would be, “I am feeling awful.” Truly, I am feeling awful. Some days are just less awful than others. It would bore people (myself included) to always say how I am feeling physically. Plus, to be honest, I prefer not to think about my constant ailments. I’m not in denial, it’s just that these symptoms are now “normal” for me anyway. It is best to just think of them as such and keep on living life.
So what do I actually mean when I say I’m doing well? I mean that in every way besides physically, I am doing well. I am content with the life God has given me, even with the physical struggles. I am happy to be alive, to be able to smile and talk with others. I am enjoying my husband and son, my family and friends. I am pleased to be able to do the things I can do. I am thankful for the many blessings God has given me. I am grateful for God’s great love for me. Even amidst the trials of life I can say with the hymn writer, “It is well with my soul.”
While I usually do not answer based on how I’m feeling physically, if I am having a particularly difficult day with my health, then that may change my answer. Occasionally you will hear me say, “I’m doing okay.” What that usually means is that I am feeling extra tired, having difficulty thinking and processing things. I am probably incredibly weak and shaky. My blood pressure is most likely 95/65 or below, when I actually need a blood pressure of 120/70. “I’m doing okay” means that physically I can’t push it much further before I crash. I need to lie down and rest.
Every once in a while you might actually catch me saying, “I’m not doing well.” That means that I feel like I’m about to faint or fall over from extreme muscle weakness. I stay home when I feel like this, but sometimes my symptoms get worse rapidly while I’m out and I cannot get home in time to crash.
What is it exactly that you have?
I have been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neurocardiogenic Syncope). These are both dysfunctions of the autonomic nervous system, which controls all of the automatic functions of the body. Basically, my internal regulator of everything (heart rate, blood pressure, temperature, energy production, sensory perception, etc) is not regulating properly. This causes a wide array of debilitating symptoms. POTS and NCS both fall under the category of dysautonomia. To learn more about dysautonomia you can read my “Dysautonomia” page or check out the “Links” page for further reading and viewing.
I also have a diagnosis of Chronic Fatigue Syndrome. This can be a confusing diagnosis, but basically it means that I am fatigued all the time, and there is nothing that can be done to fix it.
I have Gastroparesis, which is a partial to full paralysis of the stomach. Thankfully, my stomach is only partially paralyzed. I am still able to eat, but I have to make sure that I do not eat too much fiber or fat, which slow digestion. I am on a low fat, low fiber diet. Ocassionally I will have "gastroparesis flares" and I have to go to a soft foods (ie, pudding) and liquid diet for a few days. It can be hard to get the calories and nutrients I need during this time. Usually it only lasts a few days, though, and then I am able to go back to my regular low fat, low fiber diet.
Through a few sleep studies, we found that I have three different sleep disorders: Insomnia, Hypersomnia, and Alpha-Delta Sleep. Most people are familiar with Insomnia. It means that I have a hard time falling asleep and staying asleep. I take Melatonin nightly to make it easier for me to sleep. I also have Hypersomnia. That means that no matter how much I sleep, I am still sleepy! Alpha-Delta Sleep is also known as Alpha Intrusions. When I am sleeping I have too much Alpha brain wave activity, which leads to non-restorative sleep. That means that I am sleeping, but my brain waves are continuing as if I am awake. I rarely, if ever, wake up in the morning feeling refreshed.
I have Joint Hypermobility, known in the past as EDS III (Ehlers-Danlos Syndrome Type Three). This is a genetic problem, and it means that I have faulty collagen. Collagen is a protein that adds strength and elasticity to connective tissues. It holds joints and skin together. Some of the symptoms I have as a result of this are loose and hypermobile joints, joint pain, poor wound healing, and a heart murmur that comes and goes. One of the problems with Hypermobility Syndrome is that veins can be too elastic, allowing blood to pool in the legs, arms, and abdomen. This has not caused my dysautonomia, but it does exacerbate the symptoms of POTS and NCS that I already have. Hypermobility is not life threatening. Not everyone who is hypermobile has true Hypermobility/EDS III, and not all who have Hypermobility/EDS III have dysautonomia as a result.
Because my dysautonomia has become so severe, some of my specialists believe that I have a Mitochondrial Disease as a root cause for most of my health problems. Mitochondrial disease would not cause the Joint Hypermobility that I have, but it could be the root cause of everything else (dysautonomia, gastroparesis, chronic fatigue, and sleep disorders). There are many types of Mitochondrial Diseases, and they are generally considered progressive. It will take a lot of time, money, and testing to find out which type of Mito I have. I may or may not go through all of the testing. Even if we could find out what type of Mito I have, it would not change my prognosis. It would only give more answers. At this point I'm not sure if it is worth the time, money, and pain necessary for a diagnosis. If you would like to read a short article that gives an overview of Mitochondrial Disease, here is one that is easy to understand: Mitochondrial Disease.
How long have you had POTS and NCS?
I have had dysautonomia since I was about 10 years old. That is when I first had unexplained symptoms of nausea. My health problems didn’t flare up badly, though, until I was 14. It took a while for a proper diagnosis, but I was diagnosed with NCS at the age of 15. The POTS diagnosis didn’t come until I saw a specialist at Johns Hopkins at the age of 16.
Is your health getting any better?
In short, no, my health is not getting better. I do have some medications that, for now, have stabilized my condition somewhat. I don’t crash as suddenly anymore, so we are better able to plan and prepare, but my health has not improved.
In some ways my health is continuing to deteriorate. While my energy level is not deteriorating at this point, there are other new symptoms that indicate more and more dysfunction of my autonomic nervous system. One of these symptoms is sensory overload. It is becoming increasingly difficult for my nervous system to properly handle stimulation of the senses. Light can be too much. Sounds become overwhelming at times. Just a normal conversation can seem like nails on a chalkboard. A sheet brushing across my arm at night can wake me up. Sometimes foods don’t taste right to me. If I’m tired, smells can become overpowering as well. Usually these problems with my senses are just a nuisance, but at times it is so bad that it is impossible to continue to function, and I have to go to bed in a quiet, dark room. This is just one example of a way in which my autonomic nervous system is not regulating properly.
Why do you not like the heat?
My body does not tolerate heat well at all anymore. When I was growing up in
I wear a cooling vest when we go out if the temperature is above 80 degrees. This helps some, but doesn’t come close to fixing my heat intolerance. One of the problems with heat is that it dilates your blood vessels. Blood vessels are supposed to constrict when you are upright in order to combat gravity. Mine, though, do not constrict well. Being in the heat causes them to constrict even less, and blood pools rapidly in my legs. I very quickly become nauseated, dizzy, lightheaded, weak, tired, and confused. Lack of sufficient blood flow makes one miserable!
If I have to go out when it is hot, I will pay for it for a day or two afterwards. We take every precaution we can. This includes using a wheelchair, wearing a cooling vest, and cooling the van before I go out, but I still don’t do well. Just the brief trip in the heat from a handicap parking spot into the store or doctors office will wipe me out. It may take a day or two to recover from the few minutes here and there spent in the heat. This means that if I have a doctors appointment on Friday and it is hot outside, I might not be able to make it to church on Sunday because I am still recovering from exposure to heat.
I like the cold. Cold temperatures cause your blood vessels to constrict (yay!), so even in the winter I go around the house barefoot. I feel much better when I have cold feet. In
What do you do during the day?
I do my best to take care of William. Will helps me a lot with this when he is home. I sleep in as long as I can because I need a lot of rest. I play with William, catch up with friends through email, keep in touch with the dysautonomia world on DINET, read, and rest throughout the day. That might sound like an easy day, but for me it is actually quite difficult. For a typical day in my life while Will is at school you can read “A Day in the Life of a Disabled Wife and Mom”.
When Will has a day off I enjoy the time spent with him and the extra help with William. Sometimes the three of us go out to do errands. Will helps me extensively with this. He gets my wheelchair in and out of the van. He gets William and me in and out of the van. He pushes me in my chair, buys the items, and loads the van back up. It is a lot of work for Will, but I appreciate the opportunity to leave the house and to be with him.
I try to go to church every Sunday, but sometimes I am unable to because it is too difficult to get up, dressed, and ready by 10:15am. Mornings are extra hard for me.
Once a week I talk to my friend, Dorina, on the phone. I am not able to talk on the phone much because it is hard for me to follow conversations, especially if I can’t see the face of the person I’m talking to. Even though it’s difficult, I make sure that I’m able to chat with Dorina regularly. She is my original “cranberry tea time” girlfriend after all!
About once a week I meet with two of my dysautonomia friends to chat online and we have a Bible study together. Each of us has difficult making it out of the house to go to church or to ladies Bible studies. We were craving study and spiritual encouragement from other women, so we started our own Bible study that we can do from home with much more flexibility to our physical needs.
Every few months Will takes me to the doctor. I have a local cardiologist, but the rest of my doctors are out of state. Going to the doctor requires a lot of time and planning and energy. Sitting in the waiting room and doctors office is very hard. Sometimes I lie down on the floor and just let people look at me funny.
What is your long term prognosis? Will this get better or worse? Is it life threatening?
It is hard to say what my health will be like long term. There is still much that is unknown about dysautonomia. Most people with POTS are teenage girls. These teenagers typically “outgrow” POTS by their early twenties. For me, however, my POTS got worse and became disabling in my early twenties. Because I have had POTS and NCS for so long, it is doubtful that mine will ever go away. Dysautonomia very rarely goes away after years and years. It is also unlikely that I will see much improvement, if any, in my health. Neither POTS nor NCS are life threatening. They are life inhibiting and can be disabling, but they are not life threatening.
If it turns out that the root cause of my dysautonomia is a Mitochondrial Disease, then this will likely progress until it is fatal. That could be 5 years away; it could be 45 years. We really don't know, but my life is in the Lord's hands, right where it always was.
My long term prognosis may seem bleak, but God has a purpose even in this. God is sovereign, and if it is His will, He can heal me. However, He does not have to. He is God! It may be that He has a better plan for me that involves POTS. God can use even this for my good and for His glory.
What exactly are your symptoms?
I have so many that it is impossible for me to remember all of them. I have to keep a typed list to bring to my doctors. There are so many that the entire list would bore you, but I’ll list a sampling. On any given day, I have some combination of the following symptoms:
How do you feel at your best?
On a good day for me, I still have most of the above symptoms; they just aren’t as severe. I don’t have nausea, cognitive difficulties, disequilibrium, loss of balance, or fainting on a good day, but the rest of the symptoms are still there. I am very tired and weak, but my body doesn’t give out as quickly. On a good day I can walk around the house as I need to. I can sit up to scrapbook. I can play on the floor with William for a while without having to lie down. I can walk to the bathroom on my own in the morning. On a very good day I can get a shower by myself at night. Even on a good day, though, I still need my wheelchair to leave the house. I still need to lie down and rest in the afternoon, and I still need to rest after a shower in the evening. Even a good day has to have rest time, otherwise it won’t be a good day for very long!
How do you feel at your worst?
At my very worst I cannot get out of bed without help in the morning. This means that Will has to be there to help me up, help me to the bathroom, in the bathroom, and help me back to bed. My legs are weak, shaky, and uncoordinated. Eventually I’m be able to move on my own, but I still need to lie down almost all day due to extreme fatigue and danger of falling. It is impossible to even stay in my wheelchair for more than about 15 minutes. Noises, touch, and bright lights are overwhelming. I am nauseated, especially if I lie on my back. When I lie down with my eyes closed I feel like I’m rocking in a boat. I may or may not ever get a sense of hunger. I have great difficulty understanding things, remembering what question I just asked or what answer was given. I get my words all mixed up when I talk. Lightheadedness, dizziness, fatigue, weakness, and blood pooling are extreme. Basically, I have all of the symptoms listed above, and more, to the max!
On days like this William and I read a lot of books together and watch a lot of Veggie Tales, Cars, and I Dream of Jeannie. This enables me to be with William, but not have to move out of bed much. Will helps me extensively with my shower/bath at night if I’m able to get one. Neighbors help me with William during the day, or I call Will home from school to help if absolutely necessary. The really bad days are fewer and farther between now because I have learned how to pace myself, but they do still happen occasionally.
Can POTS be passed on to William?
Some people have dysautonomia due to genetics and can pass it on to their children. Since we do not know exactly how I got POTS or NCS, it is hard to say if I can pass it on to William or not. If a mom does have POTS or NCS due to genetics, most often it is passed on to her daughters. It is not likely that William will get dysautonomia, but we cannot know for sure at this point.
The Hypermobility/EDS III that I have is genetic, and that can be passed on. We do not know yet if William has this, but even if he does, it can't cause health problems as severe as what I have.
If I have a Mitochondrial Disease, it is possible that this could be passed on. We would have to know exactly which type I have, though, before it can be determined if William is at risk or not.
At this point, William is very healthy, and we are very thankful for that.
How do you take care of William?
I have a lot of help from Will. Even on the days Will has to go to school, he helps by putting my breakfast on my nightstand before he leaves. He also takes care of William for as long as possible in the morning so that I can get more rest. William is usually helpful too. If I’m having a bad day then he is content to let me lie in bed. He will bring books over, snuggle, and read with me. He brings me food and water whenever he thinks I need it. Other times he will play on the bed while I rest.
When I need extra help and Will is not available, my neighbors have always been very willing to help out. Sometimes my mom comes up from Georgia to help out during a difficult week.
Not every day is a bad day. I am usually able to at least get breakfast and lunch for William (if it is prepared and in the fridge ready to go). William is usually very well behaved and will stay close to me while playing with his toys, coloring, or reading. He has learned to be sensitive to my needs. He loves me a LOT even though I am disabled. He looks out for me and loves to spend time with me, even when I am so very tired.
If I do have a really bad day and need Will to come home early from school, his professors have always been very understanding and gracious.
If you are interested in reading a detailed version of what my day is like, you can check out the page, A Day In the Life...
What is that strange looking vest you sometimes wear?
When it is too hot I wear a cooling vest. There are pockets on the inside of the vest that hold cooling packs. These cooling packs have a substance in them that freezes at 62 degrees and stays cold for 2 hours. This is a great help when I have to go from a building to our van in the heat. I am very heat intolerant and “wilt” quickly, even in just a 1 minute trip. The vest helps to keep my core body temperature where it is supposed to be.
Why do you carry around a water bottle?
I am supposed to drink lots of fluids (and eat lots of salt). This helps my body to retain fluids, which helps to build blood volume. An increased blood volume means a higher blood pressure, lower pulse, and more blood to circulate to my heart, brain, and other vital organs.
What are the thick stockings for?
I have to wear compression stockings to help squeeze the blood out of my legs. Even with drinking lots of fluids and taking a medicine that aids in vasoconstriction, I still have a significant amount of blood pooling in my legs. Besides being painful, it prevents an adequate supply of blood from reaching my heart and brain. The stockings help to keep the excess blood from pooling.
Why do you sit semi-reclined and with your feet propped up during church?
Part of the reason for this is related to the blood pooling in my legs. Compression stockings, fluids, and my medicine still only partially helps blood flow. I prop my feet up so that I don’t have too much blood pooling in my legs. If too much blood pools, I will faint.
I also have to sit in a semi-reclined camping chair because I do not have the physical strength to hold myself in a sitting position for more than an hour. I was often having to leave church early, or unable to make it at all, simply because I could not continue to sit. Having a reclined chair and a foot stool usually enables me to make it through a whole church service.
Why do you sometimes have difficulty with conversation?
One of my symptoms is cognitive difficulty (aka “brain fog”), which manifests itself in many different ways. I have short term memory difficulty. I’ll ask Will a question and then one minute later either can’t remember what he said, can’t remember what I asked, or can’t even remember that I asked anything. I can be easily confused and have difficulty processing information. Will might ask what I want to eat on my salad and I’ll be thinking in my mind, “What….do…..I….want….to….eat….on….my….salad?” I literally repeat the whole question very slowly in my mind. I’ve become very aware of each step in the mental process. I have to figure out what words were said, what they each mean, what they mean together, and then figure out my answer.
Sometimes I’ll have difficulty with word recall for simple everyday words. Other times I will switch my words all up and say the opposite of what I mean. So if I say something that totally doesn’t make sense, just ignore it!
It is hard for me to follow long conversations, especially long phone conversations or conversations in a noisy room. If I keep saying, “Huh?” or “I’m sorry, would you repeat that?”, please don’t be offended. It is either because I’m having difficulty keeping up or because I can’t separate the words from background noise in the room.
Sometimes the brain fog is barely noticeable, while other times it is a big obstacle. If I rest or get some extra sleep then the brain fog clears away mostly. Brain fog is the reason I like simple tv shows like I Dream of Jeannie. There isn’t much of a plot to figure out. It is easy to watch!
What have you learnd through all of this?
This is a loaded question! I could go on and on and write a book. Maybe someday I will, but for now I’ll try to summarize.
God has taught me a lot over the years with POTS and NCS. One of the things that I have learned is to be content with my health and physical limitations. It would be great to be able to walk, climb, and run again, but there is much more to life than physical strength and energy. Besides, I really don’t have it so bad. There are some people in the world who are more disabled than I, but don’t have anyone to take care of them. I have been blessed with a wonderful husband, son, and family to help me. I have a wheelchair and a comfortable bed at night. Many people don’t have that.
I have learned that I need to embrace this life that God has given me, not simply be content with it. Because of what we have been through, God can use Will and me in ways that He couldn’t if my health were good.
I have learned that God has a plan and a purpose even in suffering. He can use my dysautonomia for my good and for His glory. God is at work and He has a plan that is far better than anything we can imagine! There are things that God has taught me that I wouldn’t have learned were it not for what I’ve been through because of my health. Sometimes we have to take the painful road to learn, but if it brings us closer to God then it is worth every step of the way.
I have learned more about God’s sovereignty. Yes, God is sovereign and He could heal me if He chose to do so. However, since God is sovereign, He is under no obligation to heal me. He is God! He can do whatever pleases Him and brings Him glory. We often put God in a little box and think of Him as simply someone from Whom to ask favors. However, we need to keep in mind that God is so much bigger than we can understand. He is completely holy, all powerful, all knowing, and all wise. God is in control. He is not bound by time. He is above all. He is worthy of all praise, honor, and glory. God is also loving, patient, gracious and He longs to hear from His children. He wants us to pray to Him, but when we do, let’s not forget Who we are talking to! We are talking to the Maker and Sustainer of the Universe!
I have learned that I can trust God no matter what. There are a lot of unknowns that come along with living with dysautonomia. So far treatment hasn't produced any dramatic improvement in my health. Barring a miracle I will probably be disabled for the rest of my life. But that is okay. I want whatever God's will is for me. I want God to be glorified in my life whether I am sick or healthy. If living a life with disabling POTS will bring the most glory to God, then so be it. After considering all He has done for me, suffering a little bit with POTS for a few years on earth is a small sacrifice to make. God made the ultimate sacrifice for me when He sent His Son to die on the cross. Jesus died a horrible death. The situation was not good, but God used it for great good - the salvation of all who believe!!! Jesus knows what suffering is. God knows what sacrifice is. I can certainly trust Him to know what He is doing in my life. It is worth following God and obeying Him at any cost.
If you have any questions that you want me to add to this list just let me know by emailing me at CranberryTeaTime(at)hotmail(dot)com. Thanks!