It's like wearing a lead apron all the time.
It's like my muscles are made of clay that is either cold and stiff or hot and melty.
It's like the body aches you get with a bad fever- all the time.
It's like being the pheasant in "Pheasant under Glass." I think.
It's like I have to make myself take another breath. It doesn't just happen automatically.
It's like my heart is going to leap out of my chest, but then completely stops for a few beats.
It's like I can't quite remember what I was supposed to be doing in a room, so I have to go back 2 or 3 steps to start over.
It's like that tiredness that you get in the first trimester but it never goes away- going on 3 years.
It's like I just don't have enough air.
It's like I'm going to pass out.
It's like I'm raging with anger or frustration even though nothing has happened.
It's like
It's like
It's like
These are all things I have said a LOT in the last year. Explaining my symptoms became a mental challenge. These are just descriptions of a few of my symptoms. There are several others. The overall effect of it all is that I am tired in a way that I truly believe few people have regularly been. I have been in nearly constant pain for about year- definitely for the last 6 months. The scariest stuff- the tachycardia, difficulty breathing and presyncope or fainting (I know so many new words!), are mostly under control now. They only happen about once a week to two weeks- sometimes more if I'm having a really bad couple of days.
If I thought there was any value to it, I could go back and review the whole history of it. But that is a mental and emotional challenge that I am not up for. I will say, though, that if you read about any of the following issues and feel like you may be suffering from one or more of them, please contact me, and we could talk more. Coping is very challenging for all of these, and I would love to be a support. My list at the moment is this:
POTS
Hashimoto's Thyroiditis
Chronic Disease Anemia (took a lot of testing to conclude this)
Fibromyalgia (I like to think of this one as a "working title" since it really just means "you hurt; it's real; we don't know why.")
Functionally, these things make it very difficult to be a mother of 3 children ages 21 mos to 5 years. I get dizzy from bending over or crouching. That right there is enough to make most days a bummer. I get sick and tingly from walking up any kind of incline, and that's without carrying anyone or pushing a stroller. I have trouble sleeping (in the 4-6 hours of solid opportunity I get each night when all three kids are asleep) because of the pain in my arms and legs, ringing in my ears, or vivid dreams.
SEE HOW THIS FEELS LIKE WHINING! I have a fear of being dramatic, so my urge at this point is to backpedal and acknowledge all my blessings. BUT, that is not what this post is supposed to be about, so let's try to keep going. When I first started counseling (for a period of depression and coping with chronic illness), I talked a lot about being afraid that I'm just overreacting. She said something that stuck with me and really helped. "It seems to me that the only way you are overreacting is to act like you are ok and not really sick." So, let's try to keep going. This post is about communicating my current state of affairs- the hard parts. ***I love my family and friends and God and I have a nice, safe place to live and good food and my kids are going to a great school and it's amazing and I love my church and people are kind to me!!!!*** Whew, OK. That feels better. Now let's try to keep going.
Sometimes I get flares of pain that are so bad I have to go to bed for up to two days before they are better. We have a new adjective, "POTSy," which means dizzy, disoriented, hot flashy, tingly, bone tired and heavy, and, on bad days, tachycardic and short of breath. I go to bed to recover from feeling POTSy 3-5 days a week- sometimes for just 1/2 an hour, sometimes for a whole day.
I do think we are doing a pretty good job managing it these days with a beta blocker, rest, and avoidance of exacerbating circumstances. Oh the exacerbating circumstances. If you have had some long standing axe to grind with me, please don't do it now. Relational stress is one of the most difficult things for me to cope with these days. The anemia is untouchable (PLEASE DON'T TELL ME TO TAKE IRON). My thyroid numbers are good thanks to taking two hormone replacement medications. The auto-immune disease part of it all is still raging. (PLEASE DON'T TELL ME TO GO GLUTEN FREE. I DID. DIDN'T WORK). I'm taking a medication to "calm the nervous system" to see if that will lessen the pain from fibromyalgia. Still waiting on that one, though I do think I sleep harder when I'm on it. An undeniable plus. I'm slowly working my way into a gentle exercise routine.
As you can see from my ALL CAPS above, I have tried a lot of things to treat these issues. I still am. But, there are some things I just can't control. No matter how well I eat and follow all the rules, I still am sick. I still do eat well and follow the rules. For anyone who is suffering from these things: it is probably not your fault. I have been so stressed by the concern that I'm just doing it all wrong and have made myself ill. NOT TRUE. Now, I do believe that it's possible that toxicity in my diet and environment could and probably have contributed to where I am now. Well, what are ya going to do about that? The best you can, that's what. I do want to do a juice fast and see where that gets me. Work in progress.
That paragraph brings me to one of the HUGE reasons I do not like to talk about all this. I do not need advice and a million questions from everyone. That is what I go to specialists (including a naturopath, several MDs, and a therapist) to get. If I had cancer, people may ask me about how it makes me feel, what my treatment options are, and what my prognosis is. Those kinds of questions, though somewhat tiresome after a while, are totally understandable. Advice, however, implies that I am doing something wrong. One of the hardest things about my stuff is that they are issues about which little is known. My endocrinologist says I'm ahead of my time. A study was done to evaluate the quality of life for POTS patients. The results felt very validating. Quality of life for someone suffering from POTS is about the same as a dialysis patient. I need acknowledgement about how burdensome it is. While there are some guidelines to follow, like avoiding alcohol*, heat, and too much strenuous activity, the leading researchers for the things I am dealing with do not advocate any other particular dietary restrictions or supplements. Believe me. I'm seeking advice. What I need is love and babying- not solutions from people with no experience and no qualifications. I say this not to hurt anyone or make you feel like you can't talk to me about this stuff; just please consider it well first. I know people mean very well. I have given plenty of unsolicited advice too, but this experience has taught me quite a bit.
*Side note
I could do a whole post on how much I miss bourbon, gin, and wine and all the times I've tried again to see if it will be ok. It isn't. POTSy every time! However, an OCCASIONAL beer seems to be just the thing.
There you have it. The deets. Have I mentioned I hate talking about it? But, this hopefully can give some good background information if I ever get to talking in more detail about how it all makes me think and feel. The psychological effects of it all have been the worst part. I have been deeply challenged to consider where my worth lies. I realized what an emphasis I place on utility. But, let this sink in, you are not worth what you can accomplish. That may be an important component for a lot of us, but it is not where worth lies. I'm still very actively struggling with this, so I don't have anything profound to write about it except this: Jesus loves me because he made me and saved me- not because I can compete on the mommy blogs, cook well and often, clean well and often, dress my children, dress myself, etc, etc, etc.
I'm trying to come up with some kind of closing, but everything about this post feels awkward. So that's just how we'll end it.
awkward.
It's like my muscles are made of clay that is either cold and stiff or hot and melty.
It's like the body aches you get with a bad fever- all the time.
It's like being the pheasant in "Pheasant under Glass." I think.
It's like I have to make myself take another breath. It doesn't just happen automatically.
It's like my heart is going to leap out of my chest, but then completely stops for a few beats.
It's like I can't quite remember what I was supposed to be doing in a room, so I have to go back 2 or 3 steps to start over.
It's like that tiredness that you get in the first trimester but it never goes away- going on 3 years.
It's like I just don't have enough air.
It's like I'm going to pass out.
It's like I'm raging with anger or frustration even though nothing has happened.
It's like
It's like
It's like
These are all things I have said a LOT in the last year. Explaining my symptoms became a mental challenge. These are just descriptions of a few of my symptoms. There are several others. The overall effect of it all is that I am tired in a way that I truly believe few people have regularly been. I have been in nearly constant pain for about year- definitely for the last 6 months. The scariest stuff- the tachycardia, difficulty breathing and presyncope or fainting (I know so many new words!), are mostly under control now. They only happen about once a week to two weeks- sometimes more if I'm having a really bad couple of days.
If I thought there was any value to it, I could go back and review the whole history of it. But that is a mental and emotional challenge that I am not up for. I will say, though, that if you read about any of the following issues and feel like you may be suffering from one or more of them, please contact me, and we could talk more. Coping is very challenging for all of these, and I would love to be a support. My list at the moment is this:
POTS
Hashimoto's Thyroiditis
Chronic Disease Anemia (took a lot of testing to conclude this)
Fibromyalgia (I like to think of this one as a "working title" since it really just means "you hurt; it's real; we don't know why.")
Functionally, these things make it very difficult to be a mother of 3 children ages 21 mos to 5 years. I get dizzy from bending over or crouching. That right there is enough to make most days a bummer. I get sick and tingly from walking up any kind of incline, and that's without carrying anyone or pushing a stroller. I have trouble sleeping (in the 4-6 hours of solid opportunity I get each night when all three kids are asleep) because of the pain in my arms and legs, ringing in my ears, or vivid dreams.
SEE HOW THIS FEELS LIKE WHINING! I have a fear of being dramatic, so my urge at this point is to backpedal and acknowledge all my blessings. BUT, that is not what this post is supposed to be about, so let's try to keep going. When I first started counseling (for a period of depression and coping with chronic illness), I talked a lot about being afraid that I'm just overreacting. She said something that stuck with me and really helped. "It seems to me that the only way you are overreacting is to act like you are ok and not really sick." So, let's try to keep going. This post is about communicating my current state of affairs- the hard parts. ***I love my family and friends and God and I have a nice, safe place to live and good food and my kids are going to a great school and it's amazing and I love my church and people are kind to me!!!!*** Whew, OK. That feels better. Now let's try to keep going.
Sometimes I get flares of pain that are so bad I have to go to bed for up to two days before they are better. We have a new adjective, "POTSy," which means dizzy, disoriented, hot flashy, tingly, bone tired and heavy, and, on bad days, tachycardic and short of breath. I go to bed to recover from feeling POTSy 3-5 days a week- sometimes for just 1/2 an hour, sometimes for a whole day.
I do think we are doing a pretty good job managing it these days with a beta blocker, rest, and avoidance of exacerbating circumstances. Oh the exacerbating circumstances. If you have had some long standing axe to grind with me, please don't do it now. Relational stress is one of the most difficult things for me to cope with these days. The anemia is untouchable (PLEASE DON'T TELL ME TO TAKE IRON). My thyroid numbers are good thanks to taking two hormone replacement medications. The auto-immune disease part of it all is still raging. (PLEASE DON'T TELL ME TO GO GLUTEN FREE. I DID. DIDN'T WORK). I'm taking a medication to "calm the nervous system" to see if that will lessen the pain from fibromyalgia. Still waiting on that one, though I do think I sleep harder when I'm on it. An undeniable plus. I'm slowly working my way into a gentle exercise routine.
As you can see from my ALL CAPS above, I have tried a lot of things to treat these issues. I still am. But, there are some things I just can't control. No matter how well I eat and follow all the rules, I still am sick. I still do eat well and follow the rules. For anyone who is suffering from these things: it is probably not your fault. I have been so stressed by the concern that I'm just doing it all wrong and have made myself ill. NOT TRUE. Now, I do believe that it's possible that toxicity in my diet and environment could and probably have contributed to where I am now. Well, what are ya going to do about that? The best you can, that's what. I do want to do a juice fast and see where that gets me. Work in progress.
That paragraph brings me to one of the HUGE reasons I do not like to talk about all this. I do not need advice and a million questions from everyone. That is what I go to specialists (including a naturopath, several MDs, and a therapist) to get. If I had cancer, people may ask me about how it makes me feel, what my treatment options are, and what my prognosis is. Those kinds of questions, though somewhat tiresome after a while, are totally understandable. Advice, however, implies that I am doing something wrong. One of the hardest things about my stuff is that they are issues about which little is known. My endocrinologist says I'm ahead of my time. A study was done to evaluate the quality of life for POTS patients. The results felt very validating. Quality of life for someone suffering from POTS is about the same as a dialysis patient. I need acknowledgement about how burdensome it is. While there are some guidelines to follow, like avoiding alcohol*, heat, and too much strenuous activity, the leading researchers for the things I am dealing with do not advocate any other particular dietary restrictions or supplements. Believe me. I'm seeking advice. What I need is love and babying- not solutions from people with no experience and no qualifications. I say this not to hurt anyone or make you feel like you can't talk to me about this stuff; just please consider it well first. I know people mean very well. I have given plenty of unsolicited advice too, but this experience has taught me quite a bit.
*Side note
I could do a whole post on how much I miss bourbon, gin, and wine and all the times I've tried again to see if it will be ok. It isn't. POTSy every time! However, an OCCASIONAL beer seems to be just the thing.
There you have it. The deets. Have I mentioned I hate talking about it? But, this hopefully can give some good background information if I ever get to talking in more detail about how it all makes me think and feel. The psychological effects of it all have been the worst part. I have been deeply challenged to consider where my worth lies. I realized what an emphasis I place on utility. But, let this sink in, you are not worth what you can accomplish. That may be an important component for a lot of us, but it is not where worth lies. I'm still very actively struggling with this, so I don't have anything profound to write about it except this: Jesus loves me because he made me and saved me- not because I can compete on the mommy blogs, cook well and often, clean well and often, dress my children, dress myself, etc, etc, etc.
I'm trying to come up with some kind of closing, but everything about this post feels awkward. So that's just how we'll end it.
awkward.