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Anyone want to talk about homeschooling with chronic fatigue?


jkl
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I am going into my 3rd year of periods of unexplained fatigue.  Sometimes I have good months--last year I had 5 great months, but the tiredness came back.  I am not officially diagnosed with CFS, but every test is normal and nothing seems to make me feel better for long.  For the first time, planning for this school year, I am simplifying and preparing to teach the way I feel now instead of hoping I will get better and stay better and then being constantly frustrated that I can't do things the way I used to, or pushing myself so that I feel horrible at the end of every day.  I am not giving up on finding the cause behind this fatigue, but I feel relieved to be planning to teach like the person I am NOW.  Is anyone else in the same boat? 

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I've been dealing with fibromyalgia and Hashimotos for 25 years. I have times when I feel fairly ok, but never great. For homeschooling, I use only pre-planned, easy to use curricula. I try to save my energy for actually homeschooling, not planning/preparing. I also work part-time, so still wouldn't have time for extensive planning. It's a hard balance homeschooling with chronic illness. I try to have a good attitude and be thankful for what I have. But, there are also times I'm fairly bitter that I've spent my entire adult life feeling like crap.

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I had CFS symptoms from the time my oldest was 2-8 or so. (He is 11 now.) While I still have some insomnia trouble, I am no longer in CFS territory. It has been 1 1/2 years since I had a relapse.

 

Do you have any specific questions?

 

You have posted on a few of my threads about fatigue and I always appreciate your thoughts.  How did you recover from your CFS symptoms?  Any tips you care to share?

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For me, one big thing I miss is exercise.  I used to be an aerobics instructor for heavens sake, and exercise has always been a great stress reliever.  Now, I have to be very careful what I do or I don't have energy for anything else!

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What doctors have you seen?  Have you been to a good rheumatologist?  Most of the good ones also treat fibromyalgia but profound fatigue is a symptom of a number of rheumatological diseases including some that are hard to diagnose, especially at the beginning stages of the disease.  Like before I ever knew which autoimmune conditions I had, my first rheumatologist said I had a autoimmune connective tissue disease but it was unclear at that stage which.  Turns out that I have three of them at this point in my life and actually probably had all three for a long time.

 

I was put on medications that did help with my fatigue usually and lots of coffee did help too.  Towards the end of my homeschooling, I was having trouble and was outsourcing a lot.  But I basically started homeschooling because of my diseases and did my whole 20 years with them.  So here are some of my suggestions.

 

Don't feel you need to do stuff like craft projects, fun extras, etc.  I didn't do hardly any of that kind of thing.  I had kids to arts and crafts on their own, at libraries, at scouts, at church, at homeschool activities etc.  They all developed artistic skills without my help and have far surpassed anything I could do even before my illnesses.

 

I didn't plan much and I didn't do hardly any recording of what I did.  I homeschooled my kids through high school and I only kept track of books read for the first one and never made a detailed summary of what materials I used except with that first one.  The second one got nothing and the third one got minimal.  They all got admittances to good schools and honor programs and good scholarships. 

 

I used opportunities that put less onus on me.  Teaching company courses for upper middle through high school were good.  Computer programs, other videos, trips that we took, etc, etc. helped lessen the load.  I also used outside teaching whether in homeschool co-ops, homeschool academy type deal (only 1 day a week, only some courses), college courses, outside classes of any kind, etc.  We also bought our youngest a car when she was 16 1/2 to have her go to classes and activities on her own.

 

I made home stuff easier for me.  The younger two learned to shop for food, etc.  All three learned and like to cook and bake.  All three kids started doing their own laundry at a fairly young age (probaby about 8 or 9).  After about four years of homeschooling, I ended up getting house cleaning services at least once a month, at most times. Dh is also good at cooking, shopping, laundry, etc.  We work as a family- not as mom does everything.  I am in charge of health for everyone who lives here- as in insurances, finding doctors, researching medications, etc, etc.  I have the most experience and I use that.

 

Another important trait I learned early on is to enjoy what you still can instead of dwelling on what you can't.  I love to look at my family's caving pictures even though I can't go.  Same with their rafting photos.  OTOH, I have more time to read then them and more time to watch movies or tv shows. I like to dwell on nice things or interesting things to me. 

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What doctors have you seen?  Have you been to a good rheumatologist?  Most of the good ones also treat fibromyalgia but profound fatigue is a symptom of a number of rheumatological diseases including some that are hard to diagnose, especially at the beginning stages of the disease.  Like before I ever knew which autoimmune conditions I had, my first rheumatologist said I had a autoimmune connective tissue disease but it was unclear at that stage which.  Turns out that I have three of them at this point in my life and actually probably had all three for a long time.

 

I was put on medications that did help with my fatigue usually and lots of coffee did help too.  Towards the end of my homeschooling, I was having trouble and was outsourcing a lot.  But I basically started homeschooling because of my diseases and did my whole 20 years with them.  So here are some of my suggestions.

 

Don't feel you need to do stuff like craft projects, fun extras, etc.  I didn't do hardly any of that kind of thing.  I had kids to arts and crafts on their own, at libraries, at scouts, at church, at homeschool activities etc.  They all developed artistic skills without my help and have far surpassed anything I could do even before my illnesses.

 

I didn't plan much and I didn't do hardly any recording of what I did.  I homeschooled my kids through high school and I only kept track of books read for the first one and never made a detailed summary of what materials I used except with that first one.  The second one got nothing and the third one got minimal.  They all got admittances to good schools and honor programs and good scholarships. 

 

I used opportunities that put less onus on me.  Teaching company courses for upper middle through high school were good.  Computer programs, other videos, trips that we took, etc, etc. helped lessen the load.  I also used outside teaching whether in homeschool co-ops, homeschool academy type deal (only 1 day a week, only some courses), college courses, outside classes of any kind, etc.  We also bought our youngest a car when she was 16 1/2 to have her go to classes and activities on her own.

 

I made home stuff easier for me.  The younger two learned to shop for food, etc.  All three learned and like to cook and bake.  All three kids started doing their own laundry at a fairly young age (probaby about 8 or 9).  After about four years of homeschooling, I ended up getting house cleaning services at least once a month, at most times. Dh is also good at cooking, shopping, laundry, etc.  We work as a family- not as mom does everything.  I am in charge of health for everyone who lives here- as in insurances, finding doctors, researching medications, etc, etc.  I have the most experience and I use that.

 

Another important trait I learned early on is to enjoy what you still can instead of dwelling on what you can't.  I love to look at my family's caving pictures even though I can't go.  Same with their rafting photos.  OTOH, I have more time to read then them and more time to watch movies or tv shows. I like to dwell on nice things or interesting things to me. 

 

Thank you so much!  That is all great advice.  I especially appreciate your last paragraph!  I have seen my family dr, ob, cardiologist (I have mild mitral-valve prolapse which they say would not cause fatigue), and now a naturopath many times.  I have not seen a rheumatologist--didn't think to do that because I have no joint (or any other) pain.  Just this fatigue that will not get better no matter how many hours, eye issues (dry eyes, etc), and now slight dizziness. 

 

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I am going into my 3rd year of periods of unexplained fatigue.  Sometimes I have good months--last year I had 5 great months, but the tiredness came back.  I am not officially diagnosed with CFS, but every test is normal and nothing seems to make me feel better for long.  For the first time, planning for this school year, I am simplifying and preparing to teach the way I feel now instead of hoping I will get better and stay better and then being constantly frustrated that I can't do things the way I used to, or pushing myself so that I feel horrible at the end of every day.  I am not giving up on finding the cause behind this fatigue, but I feel relieved to be planning to teach like the person I am NOW.  Is anyone else in the same boat? 

 

 

Yes.

 

Well, I have some abnormal tests. But anyway, a chronic illness where a lot of what I deal with that actually bothers me day to day is fatigue and also pain.

 

I have some relatively good hours, but not many good days and haven't had a good 5 months or even a good 2 weeks for years and years.  I think "great" is not even in my vocabulary anymore with regard to how I am feeling.

 

This might do well cross posted where there is a chronic illness homeschool mom's group here.  It would stay up toward top longer as more people might get to see it and add ideas etc.

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Yes.

 

Well, I have some abnormal tests. But anyway, a chronic illness where a lot of what I deal with that actually bothers me day to day is fatigue and also pain.

 

I have some relatively good hours, but not many good days and haven't had a good 5 months or even a good 2 weeks for years and years.  I think "great" is not even in my vocabulary anymore with regard to how I am feeling.

 

This might do well cross posted where there is a chronic illness homeschool mom's group here.  It would stay up toward top longer as more people might get to see it and add ideas etc.

 

I didn't know there was a group like that.  I'll look for it.

 

I'm sorry we are all dealing with this, but it's nice not to feel alone! :)

 

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Please look into Sjogren's Syndrome.  Dry eyes or dry mouth or both and fatigue are what many people have. Many do not have joint pain.  Rheumatologists are the doctors that  treat that disease.  There are other diseases that also don't necessarily have joint issues that are treated by rheumatologists including fibromyalgia, lupus, sclerderma, polymysieties,bursitis, tendonitis etc.  None of those diseases necessarily or at all have joint pain.   

For Sjogren['s in particular, there are treatments available that help.  It is an autoimmune disease that attacks the exocrine system particularly (moisture producing areas) and medications do help.  There are specific ones for dry mouth, others for dry eye, and ones that help your body altogether.  I don't think I could have managed to homeschool or even really take care of my kids without going on medications after my third child was born. 

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Please look into Sjogren's Syndrome.  Dry eyes or dry mouth or both and fatigue are what many people have. Many do not have joint pain.  Rheumatologists are the doctors that  treat that disease.  There are other diseases that also don't necessarily have joint issues that are treated by rheumatologists including fibromyalgia, lupus, sclerderma, polymysieties,bursitis, tendonitis etc.  None of those diseases necessarily or at all have joint pain.   

For Sjogren['s in particular, there are treatments available that help.  It is an autoimmune disease that attacks the exocrine system particularly (moisture producing areas) and medications do help.  There are specific ones for dry mouth, others for dry eye, and ones that help your body altogether.  I don't think I could have managed to homeschool or even really take care of my kids without going on medications after my third child was born. 

 

 

I would echo other pp's that suggest seeing a rheumatologist. They were the most helpful in ruling out a variety of autoimmune conditions and tend to be more 'big picture' doctors than many other specialists I've seen.

 

 

Thanks for the suggestions!  I had thought about Sjogren's when my eye issues started, but I've had a negative ANA and thought that ruled it out?? 

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Here are some things that have helped me:

 

Daily naps - the kids have "quiet time" in the afternoon while I rest. 

 

fish oil and vitamin D

 

outsourcing as much as possible

 

teaching the kids to do chores, especially to fold and put away laundry.

 

downsizing- life is much easier with less stuff and I can ask the kids to pick up after themselves

 

year round homeschool - This allows me to take breaks, even for weeks at a time, without worrying about finishing everything "on time"

 

lots of reading aloud, audiobooks, documentaries etc - I also have my older son read to my younger one sometimes - they think it's fun

 

taking advantage of mornings, when I feel best

 

My local grocer has a delivery service, and I use that when I'm not feeling well. I also ask my husband to do the shopping at times.

 

A trampoline and treadmill allow my kids to exercise and get their energy out even when I'm not able to take them to the playground.

 

I try to utilize the periods of time where I feel well to plan for when I don't. I set up our school so that if I need to I can easily put my husband in charge of a lesson.  

 

Carefully choosing which programs we use. Teaching textbooks, for example, allows the kids to just click on the next lesson and he or I can be there for support without much planning.

 I can't do fancy lap books or involved projects but they do get a lot of free time to explore and have fun.

 

Boy Scouts and church programs work well as built in social time. The kids get to interact with others and I don't feel I have to reciprocate as I might if they were invited to someone's house. I also have a few understanding friends who are willing to have them over from time to time. 

 

 

 

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negative ANA 

 

 

ANA tests can be negative if your immune system is not *currently* in overdrive, but that doesn't always rule out autoimmune issues. I've had both positive and negative ANA tests at various times. I'm not saying that's definitely what's going on, just letting you know the limitations of the ANA.

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I had a negative ANA for a number of years when I was first diagnosed with undetermined connective tissue disease and then Sjogren's.  There are more specific sjogren's factors SS-A, SS-B.  I was positive on one of those before I got a stronger  Sjogren's medication but I was already under the care of rheumatologists for four years at that point and had been getting medications all along that did help somewhat at that time.  The person who actually diagnosed the Sjogren's was an opthalmologist.  They can measure your eye moisture- below a certain point is very indicative of Sjogren's particularly with dry mouth and fatigue.  They also did a lip biopsy and the surgeon doing it said he could see that I have it because of the condition of my salivary glands. 

 

Yes, to the previous person who said a rheumatologist is often a good person for a whole body look.  I had 20 years of great rheumatologists I trusted until I came across two in a row here that I didn't. Finally, four years ago, I found a good one. Third time is the try.  But each other place I have lived in, I got a good rheumatologist on my first try. So hoping you get a good one too.

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You have posted on a few of my threads about fatigue and I always appreciate your thoughts.  How did you recover from your CFS symptoms?  Any tips you care to share?

 

Here is very detailed thread from 2012. I should note that I feel so, so, so much better now than I did when I wrote it. At the time, I thought I was about 85% better. In truth, as time has gone by and I have improved more, I realize that my "percent of normal" estimates were greatly inflated.

 

http://forums.welltrainedmind.com/topic/350995-how-i-treated-my-adrenal-fatigue/

 

Here are the highlights of changes I've made since my 2012 thread.

 

2014: Felt improved enough to start exercising again. Began Jazzercise classes, but didn't work out very hard.

 

April 2015: Amazon sent me a free sample of Vega One protein shakes. I began having it 2-3 times per day. It is food based, dairy-free, and grain-free. (The protein is pea and hemp.) I still take it 2-3 times per day. It is expensive, but it has helped a lot.

 

Somewhere in here (I think) I dumped all supplements except ones I knew were helping.

 

January 2016: Began Whole 30 diet. After years of being gluten and dairy-free, I dropped all grains, sugar, and beans. After about 5-6 weeks, symptoms of low estrogen begin to improve.

 

May 2016: I decided to add beans back (and sugar in low amounts). Today, I am still completely gluten and dairy-free. I have grains maybe every three months.

 

June 2016: I felt well enough to begin playing soccer again. I started indoor soccer. For the first few months, I had to eat immediately after the game and wait 15-20 minutes before walking to the car because I felt shaky. This decreased gradually and now I don't have to eat right after a game anymore.

 

Somewhere in here I stopped needing to add salt to my water when working out.

 

December 2016: I joined a second soccer team and began playing twice a week. I also hit 150 Jazzercise classes for the year.

 

Somewhere in here I added Relora to my supplement regime and began taking vitamin D.

 

August 2017: My health has improved enough that I can play an entire indoor soccer game without a sub (if necessary). I have low blood pressure (104/54), but rarely feel lightheaded from it like I used to. My (sitting) pulse at an exam yesterday was 58, much improved from years ago when it was in the 80s-90s.

 

Summary:

 

I tried a ton of stuff over the years. For most things, it's hard to tell what worked and what was a waste of time. The stuff I absolutely know helped: the sleep supplements, the grain free diet, Vega One, progesterone cream, and eating a lowish carb diet with lots of meat and protein. I had to get better enough to begin exercising, but once I reached that point, exercise helped my health, maybe because it increases the number of mitochondria.

 

I haven't been to the doctor in three years. I believe my thyroid and adrenal/cortisol numbers are probably good now. I still have some symptoms of low progesterone, but I don't need it for as many days as I used to each month, so the imbalance must be less than before. I no longer have symptoms of estrogen deficiency.

 

I still occasionally have days that I need to eat now, but nothing like before. Even when I am tired from sleep problems, I don't have that sick/wired and tired feeling that I had for about nine years straight.

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In case it wasn't clear from the above post and my other thread, here are a list of abnormal test results for me at some point in the last 11 years:

 

-high RT3 (reverse T3), meaning that my body couldn't use thyroid hormones properly, even if their level was technically normal

-low TSH (went hyperthyroid in 2009, either from taking too much iodine or postpartum)

-low salivary cortisol all day

-low salivary cortisol all day and then high at night

-intestinal dysbiosis and yeast overgrowth

-two different parasites

-gluten antibodies, despite being gluten-free

-antibodies to casein (dairy)

-low progesterone

-low estrogen

-low testosterone

-high testosterone

-imbalances in the ratio of various sex and adrenal hormones

-very low Natural Killer cells (like 5% of normal)

-high fibrinogen

 

These are just the ones I remember. 

 

I went to three different doctors, all of them more wholistic/functional. I believe a traditional doctor would've been a waste of time. The one who helped the most spent a year as part of a franchise (?) that specialized in CFS and Fibromyalgia.

 

 

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I don't have CFS, but I do deal with fatigue related to MS. I found that removing gluten helped a good deal with the fatigue aspect. I previously noticed this when I did a few months on Atkins. I have a special needs son who I'm trying to get through high school. I am using a lot of videos with him, for example various Teaching Company dvds, various Memoria Press programs, etc. He does better with uncomplicated programs, which are easier to teach. I try to get the week's work ready over the weekend so everything is grab-and-go. We school year-round because it is unrealistic that we are going to be productive every day between his issues and mine. I also feel it is very important to take the time for yourself and your needs. I had to stop schooling for months after this last flare that led to my diagnosis. Dh stepped in and worked on other areas with ds, and he has learned some important work skills and earned a computer science credit while I was unable to work with him.

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I have Sjogrens, and DD has POTS (postural orthostatic tachycardia).  Pots is most common in young, thin, athletic women.

 

My Sjogrens diagnosis was hard to get because all my blood work was normal.  I asked for a lip biopsy to prove I had it. The doctor was shocked at the result, I was not. LOL

 

DD's POTS took a cardiologist to find.  I had looked into it before for her, but it didn't seem to fit at the time.  As her illness progressed, it became more clear.  She honestly didn't realize that people didn't feel sick and dizzy all the time. She was so used to just pushing through her illness.  She would push herself too hard and then crash/burn for a week or two.  Then rebound, just to repeat the cycle. Finding and understanding the spoon theory (visual here) made a big difference in her life.

 

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Sorry you are going through this. I have rheumatoid arthritis and fibromyalgia. While coping with pain makes my homeschooling days more difficult (I get very grumpy and have little patience when my pain is high), it's definitely the fatigue that can put an end to a day before it gets started. When it feels like I'm wearing a 1000 pound blanket, it's not even worth trying to do school.

 

What I have found most helpful is schooling year-round. We take a few weeks off in the summer, but I try to get work done whenever I feel up to it. I know those terrible days will come, and this enables me to have a sick day without falling behind.

 

I also limit almost all other commitments. I have a special needs child. We tried public school and it just wasn't going to work for my son. So homeschooling him is my absolute highest priority. I no longer volunteer at church. I rarely entertain. I accept help from friends and family (hardest thing for me to do by far) and I try hard to not feel guilty. I have a cleaning lady come in twice a month.

 

Due to my son's special needs (HFA and Tourette's Syndrome) I can't really have anyone else teach him but me, for now. It's been a challenge and some days it seems impossible, but I want to share that it can be done. We continue to learn what works best for us and you will too. I wish you all the best in finding a way to make it work for your family.

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I have some medical conditions that cause fatigue and many days off. For us/me-

 

Outsource schooling for younger DD as able (I would absolutely homeschool her if she needs/we want, but for the moment I'm focused more on DS).

Coordinating after school activities. We need therapeutic activities most days of the week so we go to locations easiest on me and the kids share activities. They tend to be at he YMCA for the most part too, so if I need to exercise I can.

Sometimes "pushing through" the worst parts of the day helps me have a more normal day. I can be Exhausted, but if I decide to do errands instead of a 2 hour rest, I can usually be ok until early evening.

Having as much open and go curriculum as possible and automated teachings as able.

Lots of resources for sick days- you tube courses, great documentaries, audiobooks, etc.

Patience with myself and my body.

Starting the school day super early when we are already up, as I have relatively more energy and patience then.

Outsourcing most housework.

Self limiting things I know will exacerbate or cause problems (extreme heat, dehydration, certain foods).

Vitamins per needs.

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ANA tests can be negative if your immune system is not *currently* in overdrive, but that doesn't always rule out autoimmune issues. I've had both positive and negative ANA tests at various times. I'm not saying that's definitely what's going on, just letting you know the limitations of the ANA.

 

 

I had a negative ANA for a number of years when I was first diagnosed with undetermined connective tissue disease and then Sjogren's.  There are more specific sjogren's factors SS-A, SS-B.  I was positive on one of those before I got a stronger  Sjogren's medication but I was already under the care of rheumatologists for four years at that point and had been getting medications all along that did help somewhat at that time.  The person who actually diagnosed the Sjogren's was an opthalmologist.  They can measure your eye moisture- below a certain point is very indicative of Sjogren's particularly with dry mouth and fatigue.  They also did a lip biopsy and the surgeon doing it said he could see that I have it because of the condition of my salivary glands. 

 

Yes, to the previous person who said a rheumatologist is often a good person for a whole body look.  I had 20 years of great rheumatologists I trusted until I came across two in a row here that I didn't. Finally, four years ago, I found a good one. Third time is the try.  But each other place I have lived in, I got a good rheumatologist on my first try. So hoping you get a good one too.

Wow!  Thanks so much for this info.  I had no idea.  I will look into it for sure!

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Here is very detailed thread from 2012. I should note that I feel so, so, so much better now than I did when I wrote it. At the time, I thought I was about 85% better. In truth, as time has gone by and I have improved more, I realize that my "percent of normal" estimates were greatly inflated.

 

http://forums.welltrainedmind.com/topic/350995-how-i-treated-my-adrenal-fatigue/

 

Here are the highlights of changes I've made since my 2012 thread.

 

2014: Felt improved enough to start exercising again. Began Jazzercise classes, but didn't work out very hard.

 

April 2015: Amazon sent me a free sample of Vega One protein shakes. I began having it 2-3 times per day. It is food based, dairy-free, and grain-free. (The protein is pea and hemp.) I still take it 2-3 times per day. It is expensive, but it has helped a lot.

 

Somewhere in here (I think) I dumped all supplements except ones I knew were helping.

 

January 2016: Began Whole 30 diet. After years of being gluten and dairy-free, I dropped all grains, sugar, and beans. After about 5-6 weeks, symptoms of low estrogen begin to improve.

 

May 2016: I decided to add beans back (and sugar in low amounts). Today, I am still completely gluten and dairy-free. I have grains maybe every three months.

 

June 2016: I felt well enough to begin playing soccer again. I started indoor soccer. For the first few months, I had to eat immediately after the game and wait 15-20 minutes before walking to the car because I felt shaky. This decreased gradually and now I don't have to eat right after a game anymore.

 

Somewhere in here I stopped needing to add salt to my water when working out.

 

December 2016: I joined a second soccer team and began playing twice a week. I also hit 150 Jazzercise classes for the year.

 

Somewhere in here I added Relora to my supplement regime and began taking vitamin D.

 

August 2017: My health has improved enough that I can play an entire indoor soccer game without a sub (if necessary). I have low blood pressure (104/54), but rarely feel lightheaded from it like I used to. My (sitting) pulse at an exam yesterday was 58, much improved from years ago when it was in the 80s-90s.

 

Summary:

 

I tried a ton of stuff over the years. For most things, it's hard to tell what worked and what was a waste of time. The stuff I absolutely know helped: the sleep supplements, the grain free diet, Vega One, progesterone cream, and eating a lowish carb diet with lots of meat and protein. I had to get better enough to begin exercising, but once I reached that point, exercise helped my health, maybe because it increases the number of mitochondria.

 

I haven't been to the doctor in three years. I believe my thyroid and adrenal/cortisol numbers are probably good now. I still have some symptoms of low progesterone, but I don't need it for as many days as I used to each month, so the imbalance must be less than before. I no longer have symptoms of estrogen deficiency.

 

I still occasionally have days that I need to eat now, but nothing like before. Even when I am tired from sleep problems, I don't have that sick/wired and tired feeling that I had for about nine years straight.

Thank you so much for this!! I have never heard of relora, it looks interesting!  I am currently dairy and wheat free (mostly), and my body seems to require a ton of protein, so I try to eat some at every meal.  I'll look into those protein shakes.  I am so glad you are so much better!!!

 

 

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Thank you so much everyone!  I really enjoyed hearing everyones tips.  I have really simplified our lives as much as I feel like I can right now.  I have a daughter newly diagnosed with OCD and other things we are still attempting to sort out.  She is behind academically, so I will be putting any extra energy  I have toward spending some extra time with her.  You all seem very strong and determined and that makes me feel less overwhelmed at the idea of homeschooling when I'm not feeling my best!

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