Chronic Fatigue Syndrome and a Large Family
(Originally posted in October 2008)
I received this question from a reader and thought I would share my response in a post by itself since I know a lot of people are wondering this.
I love the information you publish on your website. Great stuff.
I am sorry but I just don’t understand, but in fairness to you, I have to ask THE question. And this question comes from someone who is a medical professional.
Why on earth would someone who has chronic fatigue, fibromyalgia, and discusses her constant fatigue, allow herself to become pregnant? And this from someone who is “disabled”?
I am at a loss. I treat many patients who have your medical issues and know how debilitating all of this for them. Why add more burden to your family members when you are barely able to cope on a daily basis? Not being mean-spirited, I just do not understand.
Dear Reader,
I can totally understand why people would wonder this. Here’s the thing, I am going to be sick whether I have kids or not. I became ill when I was 16 and have accepted the fact that I will be sick the rest of my life unless they find a cure or Jesus comes.
I have always wanted a big family. I wanted 6 kids in fact. After 2 we thought for sure we would have 4 and after 3 we thought we’d die! LOL Yes, we took a few years to recover.
The thing is, the amount of joy we get from our kids WAY outweighs any hardship.
My kids are not perfect by any means but now that they are getting older we are really seeing the rewards of our “hard work”.
Yes, I am sick but we have a system in place now that has made our lives much easier so we decided to go for it. We have talked about whether or not we should do this for 4 years. I wanted more kids but was not sure if it would be too much for us to have more.
Mike and I both prayed that if this was something we shouldn’t do that God would take our desire away for a larger family. After 4 years of praying, it never went away. We decided to start trying and figured if it wasn’t something we should do then God would let us know. Well, after trying the first time we got pregnant. With the other three, it took from three months to almost a year of trying.
It helps to realize that we give up some things so we can have a large family. We don’t have a church right now but when we did we didn’t do a lot of activities at church. We don’t do a lot of other activities like football for the kids and other activities that require a lot of energy from me. Do they miss it? No. If they really want to do something like that we will do it but we limit it to one activity at a time.
So the long and short of it is, we just feel like this is something we should do. The first three are older and help out a great deal so I really don’t think having another child is going to be huge burden on us after the first year or two.
Please realize that I have a wonderful mom and husband who do everything when I’m on bedrest the last 3 months. I think for Nan the rewards are worth it but you would have to ask her. LOL (So mom, are they worth it?)
One up side is that I feel WONDERFUL for the first 4-6 months of pregnancy. Two days ago, whatever it is that makes me feel so good kicked in and I feel like taking on the world! I wish I could figure out what it is and take it all the time. :-)
Anyway, that’s why.
Tawra
Grandkids are like chocolate: You never can get too much. Of course they are worth it! But I understand our reader’s question and where she is coming from too. The reality is that it will be hard but my kids have been ill since their teens and they had a choice to just get by or to try and live as much of a “normal” life as they could.
All people have struggles in their lives at some time or another and things that need to be overcome. Ours just happens to be a chronic illness. I think that is why God has given us families in the first place– to help and support each other all through our lives.
Hopefully, the situation will be easier this time than ever before. Michael was gone four days a week working out of town when the first two were born and we were in a strange town and didn’t really know anyone. It was pretty much me taking care of Tawra and then it was Tawra and the baby and then Tawra and two babies with Michael taking over on the long weekends.
We lived many miles from the store and from doctors, which was hard, but now it is just a few minutes to these places. Michael works at home most of the time now and the two older kids are a really big help already. Even little things like the fact we have central air and don’t have to bring in wood and build a fire makes a world of difference.
I won’t say we won’t be very tired but we have found that, “This too shall pass.” They do eventually get potty trained and learn to feed themselves and it gets easier. My daughter keeps coming up with more projects for us but, so far, this has been the biggest one of all. :) :)
-Jill (a very happy “Nan”) (that’s what my grandkids call me: short for Nana)
P.S. I, too, would like to thank the reader who asked the question for not being mean or judgmental about it. It is much more enjoyable to answer questions when someone is just curious or doesn’t understand than when the person wants to hit us over the head with a hammer. :) :)
Thank you for your insight. I am so happy that you have such great support too. I wasn’t trying to be mean; in fact, I wanted to know your perspective on this. It would be wonderful to be able to tap that sense of well being all the time, not just when pregnant. Again, I hope I didn’t offend. So many people just don’t believe CFS and FMS do not exist. I know they do, and I can only imagine the pain and suffering. Thank you for addressing my questions in such a thoughtful manner. I really do love your blog.
Tawra, FMS has got to be hormone related!!! I felt the same way when I was pregnant!
And I have repeated said that there is only one day a month (always the day before my period), that I actually feel half-way normal.
You’re right. I’ve been preaching this for ages but most people think I’m nuts when I say these disorders are caused from hormones. I’m 50 and have suffered from fibromyalgia and chronic fatigue syndrome since I was in my 20s–along with severe PMS. HRT helped a bit but not completely. It seems that the muscle pain aspect was mainly due to a progesterone imbalance. When I was 28, I also began to have severe menopause-like symptoms. Four years ago, I had an hysterectomy/oophorectomy. I’m more “level” now but I feel mentally and physically dead all the time. Unfortunately, it wasn’t a cure.
No it wasn’t a cure just made things slightly more bearable. There is no cure and when you hear someone say they did this or that and was cured the changes are pretty good they probably didn’t have it in the first place. It is like I have said before when we worked with the CDC 500 people that had been told by doctors they had CFS – of that amount only 80 truly had it. That is less then 1/4 so many who think they are cured when they tried something probably had something else.
The same way they are finding out that about 2/3 of the people now who say they need things gluten free really don’t. It is called crowd hysteria. One person starts hollering about something in fear and the whole crowd ends up hollering and come to find out there wasn’t any reason to holler at all.
As someone who suffers from a chronic illness (juvenile diabetes), I appreciate that you are going on with life and having more children.
My mother always told me if people waited for perfect circumstances to have a child, there would be few children born. :)
Brenda–your mother had wise words! I could nearly write a book about the “circumstances” our family was under with the addition of each child. We have 5 on earth, one who died at 2 hours old and one pregnancy that ended in a miscarriage. I’m past 40 now, and I know that we are likely nearly finished having children. More than ever–after having lost our last 2 babies–I realize how precious *each* baby is! Our trials in bearing and raising them are so small, in relation to the joy the children bring. Our Lord made our bodies to bear children. It makes sense to me to feel better when our bodies are “doing their thing.” :-) Still–believe me–my last full term pregnancy was twins and some days I thought I would literally die. Ugh. But…I’d do it again. LOL
Tawra, I’m praying for you!
Tawra,
Children are “a blessing and a heritage from the Lord” There is no qualification in the scriptures. This baby will be a blessing to your family. You spiritual energy will make up for the times it is hard on you physically. I have four children (though I am very healthy), now mostly grown and remember being distressed when people would ask me with number four (now 16) “were you real upset when you found out?”, as though no one could possibly plan to have four children. I also heard many times “no one can afford to ahve four children in today’s society”. Simply not true. I stayed home with them and am now reaping the rewards by seeing God’s faithfulness…and blessed that they ahve the one most important thing…their own faith.Anyway, one of my most passionate soapboxes! But the lady who questioned you seemed very loving…jsut curious. God will bless you through this time! Debby
wow! you guys are real overcomers! you teach me so much, i have tons to learn from you, even though i’m twelve, i apply lots of your counsel to my daily life. God Bless.
Tawra,
Thank you for sharing a view that opposes your own – about the medical strain of a pregnancy and growing family.
It takes courage to share at that level, and it gives us the opportunity to learn.
I am not affected by any of the medical issues you are facing, so I wasn’t sure how pregnancy affects people who have FM and CFS. Now I know more than I did before!
Chris
Tawra-
Dream house found;Raised gardens in, fenced yard just about up; house painted; kitchen wonderfully re done; bet a dollar you have or are on your way to organize any areas in the house that will need to be done. So this is the season the Lord blessed your family with this pregnancy. Enjoy and keep walking!!!!
Did the garage flooding ever get fixed? How the septic system running?
Hello!
My husband I have been struggling for two years now trying to decide whether to add to our family.
I will be 39 this coming year. I wonder if it is to late? Am I too old to have another child? My daughters are 14 and 11 and I wish I could just have a few more… or atleast one:)
I don’t want to seem blunt but how old are you? When did you know in your heart it was time to start adding to your family?
You have brought up a tough issue for many and I thank you for sharing your good news with all of us!
Looking forward to your response.
Many Blessings,
Renee
I’m just reading about your wonderful news and I just want to say congratulations! Babies are such a blessing and I know that this little one will bring such joy to your family.
What an awesomely positive blog! I love that the asker was so polite and just shared her curiousity rather than being judgemental. And all of the other comments are great too.
I do not suffer from a chronic illness but did face a lot of judgement when my husband and I felt God calling me to come home from work to be with my son and get pregnant with another. I too have always wanted a big family. (Baby #3 is in the oven now and due Nov. 10th!) I quit a great paying job and we sacrificed a lot but it was the best thing we ever did. Each family must decide what sacrifices are worth it for them. We chose to get rid of the expensive home and cars so that we could have more kids…and we are ALL very happy with that choice! We live on a tight budget and don’t do all of the extra stuff…and that’s why we love your site…for all of the money saving ideas! But our kids are happy, healthy and love the Lord. Children are our legacy and will love us no matter what state our earthly bodies are in…it’s a good thing God gave them all that energy b/c they can be a wonderful help to Mom’s! I’ll be praying that God floods your body with continued strength and that this baby is blessed from beginning to end! Thanks for allowing God to use you to bless us Mom’s trying to be the frugal women God’s called us to be! You are a blessing!
Thank you for your sweet Christ-like response to your reader. I myself am pregnant with #5, due in March. Many family asked why we would want to do such a thing in this economy and especially after losing a child during the 16th week gestation just back in April, and one miscarriage several years back. Our response is very similar to yours. The Lord never took away that desire for another child, and we prayed long and hard that His will be done if we were to conceive again. As far as finances go…we learned a long time ago that the Lord provides for what He has given! We do believe this is our last, and plan to enjoy every moment, good and not-so-good! Thanks, Tawra and Jill!
Tawra, Congradulations !! I am so glad to see your determination and just plain grit !! You will overcome any obstacles with God’s mercy. We lost five children and were told maybe we should adopt. We had prayed and just knew God was going to give us biological ones. We simply believed and trusted God. With my oldest daughter I was on complete bed rest for 2 months. Then God healed me . Everything went normal.The doctor said ,” this is a miracle baby.” Then 13 months after she was born God blessed us with triplets !!! Given my ‘serial miscarriage’label {it was actually in my file} the doctor wanted to kill the littlest one. We said no way and I had the best pregancy ever ! No bleeding or breathing problems not even water retension.I wasn’t even put on bedrest which is a miracle. They are now 9 years old without any problems whatsoever. God is faithful and has blessed the fruit of your womb. I rejoice with you both !! P.S. Our experience is the more children one has the easier it is to care for them .Even if you have four children in 22 months !
What wonderful news! I will add you to my ongoing list of Mommies-to-be! Blessings, Eva
Regardless of what happens in our lives, the family of Christ is the strongest of them all. Congratulations on the extension of your family, and blessings to you.
From a happy (and many times tired) mother of 4.
Robin in CA
Tawra,
I have Crohn’s Disease (autoimmune disease) and had my last child at 40 years of age. I know that when you have an autoimmune disease my doctor told me that you can feel even better if you are not having any flare ups at the time of pregnancy. I am not sure if CFS is an autoimmune disease or not, but maybe that is why you feel so wonderful.
To Renee, who wondered if 39 is too old for another child? I say no way! I have a 24 year old, a 20year old and my youngest is now almost 7 years old. She is the joy of our lives right now and makes me feel younger than ever! You appreciate them even more when you are older. Children are nothing but a blessing.
Congratulations Tawra and family!
Enjoy this precious pregnancy and this new love in your life :)
Prayers for good health for you both!
And congrats, Nan! As a Grammi of 8, I fully understand that feeling!
And that we do willingly what needs done to help with the grandkids!
Congratulations to you and your family, Tawra! I waited four years between #3 and #4 because I experienced severe post-partum depression after #3, and frankly I was scared to have another. But the Lord worked on me for two years, and I was finally able to trust Him to take care of everything. The result is one of the great joys of my life. My son is now 3, and I can’t imagine our family without him. God Bless.
When you said that you had some news, I thought about all the work you have been doing on your house and yard.
My nest thought was aha the old nesting syndrome. But I didn’t find the news until today.
Congratulations!
I also have Fibromyalgia. Never diagnosed with Chronic Fatigue but have wondered with the way I feel. I just turned 62 and am mother of one – Blood pressure problems prevented me from having more. She is mother of 2 – boy 7, girl turning 13 this month (going on 21). I am lucky enough to live with them.
Thank you for this wonderful and thoughtful response to your reader’s question. Your family inspires me. I am 42 and my baby is just about to have her first birthday. My husband and I are on disability for our chronic conditions and we would love to add to our family. While I am still learning to balance the business of being a mom while dealing with my condition, every now and then I wonder, “How could we make it with our income?” but your stories (and tips and blogs and books) provide hope.
Congratulations!!!
Your home will be filled with even more love and laughter.
Congrats Tawra! I was not disabled when I was pregnant with my son, but I suffer from Crohns Disease, and I know what you mean about feeling good during pregnancy. I felt wonderful starting with my 4 month of pregnancy and through the 7th month. I had this fountain of energy that wouldn’t go away! I cleaned closets, painted windows, and had the time of my life. I have never had that much energy ever again, and I’ll always remember the way I felt. My doctor explained that when a woman is pregnant, they produce what he called natural prednisone. Since prednisone always make my disease go into remission, by getting pregnant, I put myself into a short-lived remission. It wasn’t until a couple of years later that I became disabled, so my precious son became my one and only pregnancy – – my time to dance and live life to the fullest! So, just enjoy this pregnancy, live you own life to the fullest, and let God take care of the big issues! Peace, love, and hugs to all of you!
I think that you should do what I did and have your blood work done not only when you are sick but have it done when you are feeling good. This way you have something to compare it too. I paid to have mine done when my doctor kept telling me I was healthy just depressed. I was so sick for almost 12 years and when I got my blood work back that I paid for, I found out that my thyroid was very low and that I was anemic. Now I won’t go to a doctor without my “healthy” blood work so I can compare it. You can go online and find a place to get your own blood work just as I did. It was about $100 and the best money I have ever spent. After all these years I’m finally getting my life back.
I really hope this was helpful and best wishes on your soon to be newest addition.
Tawra, have you thought about having your blood analyzed while pregnant and then when you are at your lowest to see what the difference is in the blood? This might not be the answer but it could be some help in feeling better when not pregnant.
Congrats on the baby. I hope your pregnancy goes fine. I felt wonderful the first 6 months and then at the end I had to be bed ridden. My husband worked all day and my family wasn’t that far away but too busy for me. This is why I only had one. I was in a new area and met many women that condemned me for not having another child. I said look, you have family and support, I don’t.
When my daughter was 7 I found out that I have fibro. It’s been a struggle, especially financially since I cant work full time. Now Im trying to sell things online.
My daughter is almost 11 now and is a very independent soul. I often think that its better that I just had her, cause I wouldnt have been able to cope alone with more than one. I hate that Im considered lazy when Im just sick. My family say they understand but they really don’t and they aren’t here to help me.
One time I had help and then my stepmom wrote to tell me that if I spent less time playing with my daughter and my pets I’d have more time and energy to clean house. Yikes! I wrote back and said do you think I like things messy? Well I don’t. I know my limitations.
My husband doesnt help as much as he used to and our marriage no longer exists. We just live together for financial reasons.
I’m not trying to have a pitty party. Im just venting. I admire how your family works together.
I wish you the best with the new baby. They are such a blessing.
Congrats on your new little one. Continue to trust God and he will always “work all things together for your good”. Blessings to your family.
Carol
Tawra, I can tell you what it is that “kicked in” and makes you feel on top of the world, because I too have CFS and am a mother of 4. (Our oldest is 5) The answer is actually a two part answer. One, on the medical side, is the pregnancy hormone your body produces is what is giving you the extra energy. Talk to you Dr., because when you are no longer pregnant/nursing, you can get shots. I don’t remember the name of the hormone, but I believe it is the one that starts with an “O”. The second part of it is the enabling power of the atonement of Jesus Christ. You are doing what the Lord wants you to do by bringing these children into the world and raising them properly. He lifts us when we can not go any farther ourselves. I know this from personal experience. The Lord does love us, is mindful of us, and is there to lift us when we can’t do it on our own. I know it is because of Him that I am able to do all that I do. You are doing great, keep up the good work!
Oxytocin??
I have CFS. I went to a Fibro and Fatigue Center and while I am not “cured”, I maintain about 90%. Hormones is one component of the treatment plan. You can look it up on the internet. It was really worth it for me.
How do you find a doctor to treat Fibromyalgia? I was diagnosed many years ago but never got any treatment–just basically told that there was nothing they could do.
It is hard to find someone. I went to 10 before I found one who even tried to figure out what was wrong. I’m afraid there is no real cure it is more a matter of control and taking care of the symptoms. There is a couple of meds out which help with the muscle pain but it is really more a matter of taking hot baths, exercising, massages and just being careful you don’t do things to flair it up. It can be very debilitating. Some say they got cured by certain foods or vitamins etc. but I really think what happened was they maybe didn’t have it in the first place but what they did took care of another problem they may have had. I just say that so you don’t get sucked into buying things that won’t cure it.
I’ve already responded to this once, but it really got me to thinking. Your anonymous reader who asked THE question said this about you, ” when you are barely able to cope on a daily basis”. I wonder where s/he got that idea? I have been reading your newsletter, site, blogs (and books) for almost a year now and I cannot see someone who is “barely able to cope”. I think I found you from a youtube video about snow icecream; you were pretty vibrant then. You maintain several blogs, a great and growing website with an ebook trade. I’ve noticed you’ve got a strong affiliate network. (It seems everywhere I go lately I see Tawra Kellam authored articles on Halloween. ;-) ). Aside from your at-home business, you garden, preserve food, and you decorate your home in creative ways inside and out. Since reading your books, I know you’ve moved a few times too. You also managed to get in a vacation (by car no less) this summer!
So this person who vacationed in Colorado, moved, replanted a beloved “dead tree”, painted a house, installed a fence, maintains a strong web presence seems quite healthy and thriving to me. It matters not the diagnosis that may contribute to differing ways you may need to go about accomplishing your goals in a given day or week or season. You certainly have a right to complain now and then of “constant fatigue”. What busy mom doesn’t complain of such every now and again? Any fatigue complaints that reader heard recently from you was certainly exacerbated by (or really mostly) first trimester fatigue most expectant moms experience.
As I said before, your family inspires me. You are wealthy in spirit and in many things (even if not a typical “American dream” income that gets bandied about in political rhetoric these days).
I think what is inspiring about what your readers see in your family life is that you and your mother have such a strong desire to perservere and experience all the goodness that life has to offer. You love having children, and God has blessed you with a quiver full. You have a passion for a life of financial freedom, and you have translated that into a desire to help others attain that same state. You have obstacles in your life, to be sure, but you find ways around them or over them, so that you can claim the good things for you and your family. That is inspiring to me. I must admit, I haven’t agreed with all of your advice for your readers; however, I have regularly been inspired by you and your family. Thanks.
I get asked a similar question often. I only have two children (who are both total handfuls–SIGH!), but I work a lot at home. I manage two vacation rental properties we own, I am a full-time writer and editor, I volunteer one day a week, and we have a very active family life. That plus 20+ years of CFS/FM leads to one very tired me! But I like leading a very full life. Before I got sick I was the typical Type-A overachiever and I still am very driven and ambitious. I just do as much as possible sitting down!
My answer is the same: I’m going to be sick anyway. I might as well have a happy, full life and be sick rather than sitting around doing nothing and be sick.
Tawra, You are a lot kinder than I would have been answering that question. People have some nerve.
What I see is a determined young woman, who, with the help of a great family, husband, mom and kids, and faith, accomplishes an amazing amount of things and helps others in that process.
Like any other physical condition, you have decided it will not rule your life or determine your actions — and THAT is pretty amazing — !!
ON the blog Keeper of the home Stephanie has been dealing with something called adrenal fatigue or adrenal exhaustion. There is a discussion going on now about the similarities between that and cfs/fibromyalgia . You might look into that. Some think it is the same thing.
Tawra,
Like you, I always felt so good during pregnancy, and like you had been diagnosed with CFS. When my son started having issues with his immune system and symptoms similar to my own, I sought a research hospital. I had read information relating CFS and NMH (neurally mediated hypotension) and entered into a research trial for the treatment of NMH. Doors were opened, and with the understanding of the inner-workings of the endocrine/cardiac systems, my son and I are so much better. I urge you to research the Johns Hopkins research on NMH/Chronic Fatigue…..and believe it or not, you likely feel better while you are pregnant because you have extra fluids in your system!
Hi Tawra,
I just read about your condition and I know of something that may help. Shaklee nutrition; let me know if you are interested and we can talk.
Quick info- Shaklee is the world’s leading natural nutrition company in the world, all the Olympic Gold Medal althletes and NASA depend and use Shaklee. I reallly know it could help you, might not cure, but will surely give you a difference. I suffer from fatigue a lot and every time I make myself use the products, I truly, truly feel the biggest difference.
Let me know,
Kristi
Children and FAMILY are a blessing (coming from someone who hardly has any). I believe the more children the better. Children are LIFE, why would you want to limit life? That’s my opinion. :)
Ladies, One of the things I have not seen addressed is how to get children to understand that you can’t do the things you want to do? I get SSI disability now and no longer work outside the home. I am able to do some light gardening, housework, work at church, so my 6 yr old sees me active, but on my down days, I cannot do anything. She does not understand. Any suggestions
I may have to write an article on this subject but for the moment here are a couple of things which may help. Now I’m not saying you do any of these things but they are to help everyone in general.
First kids react to things the way they see their parents react. If you make a big deal out of the fact you can’t do the same as a normal parent – worry, stew, feel guilty and beg your child’s forgiveness all the time they will start thinking something is wrong with their life.
If on the other had you as simply as you can just say mom gets sick sometimes like when you have a cold and can’t do things at those times and leave it at that kids will think this is just a normal and okay thing and all is still right with their world. They are amazing at adapting and not over reacting if the adults in theirs don’t overreact.
Tawra gave me the example that if a mom has to go to work she justs says no we can’t play at the park today because I have to go to work and you should have the same attitude when telling your kids you can’t do things because you are sick too.
When I first got sick I was mostly bedridden all the time I had to really think about what my priorities were. Each individual knows what makes them sick and with each person it can be different. Tawra can do light gardening but I can’t even do 15 mins of it. Neither of us up until recently could do very many things like church or social activities. Just getting ready to go to church on Sunday morning would make me sick for a couple of days. I do love the Lord and I love to go to church. I don’t just go because I’m suppose to I actually like going and wish the service would last all day but I had to face the fact if I had to be up to feed my kids the next day I couldn’t go to church the day before.
Now that doesn’t mean I would go out Sunday afternoon with my friends for coffee either. Which is my second point. Be careful you don’t come across as sort of a hypocrite to your kids in that mom is too sick to do some of the things they want to do but you are ok to do the things you think are important but you maybe don’t have to do. I don’t know if you work at the church or just do volunteer things but if you just do volunteer things and they make you sick you have to beware of those types of things and see what you could do to change them.
The main thing is you don’t make a big deal out of it and treat it as a normal way of life. I have said this before in another article on this same subject and that is every family has some sort of “handicap” and it can come in many different forms money, physical, emotional even things like a parent being shipped overseas. These are all handicaps for each family so in away each family is normal.
The whole secret is to not feel sorry for yourself and your situation or think you are the only one whose kids need to deal with different circumstances – most kids have something to deal with in their lives. It isn’t the things you can or can’t do with them or the things you buy them but just how much you love them.
I remember reading about a blind mother of several children. They would say things like “Mom , if you could see then we could go swimming”. Of course she was well aware of her limitations and wished it were otherwise. She wrote this after her children had grown and turned out very well.
Thank you ladies. Your advice was very helpful. It has helped me relax alot. I can just have fun within my limitations and not worry about the rest.
Excellent post! I know my comment is “late to the party” but I hope you read it and know you have my prayers and understanding. I was diagnosed with CFS when my oldest was 2 years old. I really wanted more children and worked very hard to take care of myself so that I could. It took many years of trying, and several miscarriages. But the Lord gave me a double portion –I became pregnant with twins! Before I even married I knew I wanted 3 children. With the CFS diagnosis I knew I’d only be able to manage two full-term pregnancies and deliveries. But the Lord knew my heart, and gave me the 3 I had always dreamed of.
I also felt really, really well while pregnant. The only time I can remember feeling like my old self.
Blessings
Anyways, we carry on as best we can in this world, looking forward to the glory of the next.
I have had CFS & FIBROMYALGIA for years and continue to work. And believe me, it’s near impossible some days. My question is, how did you get disability on CFS? I wasn’t aware this ‘disease’ was even acknowledged by most doctors.
If you would, feel free to private email me, I would like to know how to go about it, if it’s possible for me even.
Thank you for such wonderful reading, recipes, etc. I enjoy your site so much.
Thanks again!
For me when I got sick and had to go on disability I was 19. I just could not work to save my life even though I tried and tried. Pretty you just have to have your doc say you can’t work and then spend the 2+ years it takes to get on disability. It’s easier now and it might not take that long now because at least now they acknowledge it’s an illness, 20 yrs. ago they didn’t. It’s hard but if you just can’t work it’s at least an option.
Bev, Tawra gave you the short version of her getting on disability. It really was pretty much a miracle that she did. Our lawyer said we didn’t have a chance but would try for us anyway. When we went before the judge the disability people were very nasty and said some awful things about her just not wanting to work (she had been working at a regular job since she was 15 and going to school at the same time) and that she was just a depressed teenager. After having listened to all those mean things I do believe God touched the judge’s heart because when the disability guy said that about her the judge looked at the him and said so you are saying the reason she can work is because she is depressed? The other guy said yes not realizing the judge was kind of setting him up so the judge said in that case she needs to be on disability. The judge knew from hearing our side she really was sick not just depressed but he also knew the disability people would tear us apart so that is why he worded it the way he did. The whole thing borderline on bizarre and the look on our lawyer’s face was almost comical he was in so much shock.
One thing which helped us too was we were accepted on a special study done by the CDC on CFS and had to go through vigorous physical tests and mental testing before and after being accepted. We had to have no other illness at all and be mentally well balanced. Tawra always laughs and says if someone says we’re crazy we have real papers to prove we aren’t.
I love your blog and your Mother is a real Mom and trooper..You are an inspiration to me and my familia..I am married to a man whose mother started having a kid at 16 when she was young married, hubby ran after every woman who had a skirt on..Divorced, met my hubby’s dad and courted married him and had 8 kids he never supported and ran away from, she continued to have kids with no support and they all suffered a lot..None of them have more than 2 kids in fact we only have one child! Most have had pretty bleak lives always getting some form of help from the govt. and one the youngest daughter likes to have kids by men she never marries and her son had to suffer a lot the second child a girl had the fortune to be the grandchild of loaded grandparents, but she grew up and had a child with no marriage..oh, my goodness!!!!!!!!!!!!! My husband is the oldest of the second marriage and he is not like any of his siblings, worked for 38 years, retired, gentle, loving husband, wonderful daddy and gentle peace human being..Just cause a person has a disability should make no mind in raising one’s kids, I come from a huge family my mom got cancer and died in 6 months that were the shortest illness I ever remember poof she was gone in an instant and we suffered enormously cause my dad went to pieces when she died..so I know what heartache is like, had to live with relatives who hated my mom and were abusive to me and my siblings at 18 I went to live with my Mom’s Mom who was in her late 80’s waited for me and loved me she passed from this earth a week before I got out of college and turned 21 only had her for a shortwhile but knew I was adored and loved..it doesn’t matter who cares about kids but the love has gotta be there, I have read your many articles about your CFS and your hubby, you are loving wonderful parents who would do anything for your children, too bad many parents don’t think the way you do and they have no disabilities at all..You are an inspiration to people considering to have any kids at all! You truly truly are, May God continue to Bless you and your sweet Momma Jill!!!!!!!!!!!!!!!!!!!!!
I grew up in a home with 10 children…my dad drove a cab and the school bus to provide for us…my stepmother stayed at home. I happen to be of the school that 4 or 5 children aren’t that many. I only had two, but that was our choice. I don’t think anyone has the right to tell anyone else how they should plan, or raise, their children. If parents are fine with it, then the whole world should just shut up and let them enjoy. Good luck, Tawra….I know you sure are blessed with your family and with your mom.
Beautiful. Thank you for declaring the Biblical truth that children are ALWAYS blessings. Blessings are not always easy :) Take care and God bless you and your family!
I am the mother of twelve and have suffered from chronic fatique for the past thirty years. We are Catholic, we accept children as God sends them, and we profoundly trust He will supply just what we need just as we need it. This has been tangibly shown to us over and over and over again. God is perfect and all knowing and cannot make mistakes or else He could not be God. He perfectly loves each and every person He creates. Each child is wanted by God and is a unique and unrepeatable gift. Because of our fallen nature, we will all encounter suffering and tribulations. But by being open to God’s gift of children, we trust that God does indeed know best for us. Maybe a fourth child will be the financial savior of the family later on, or maybe a seventh child will help with old age, or maybe a third child will discover some much needed cures. So many today have forgotten to trust such an awesome God. Often we are completely unable or not meant to understand why He does what He does, but God NEVER regrets a new baby,
HIS amazing creation. This world is passing, any time we do get to spend here should be for His glory, and we should be only concerned with amassing eternal treasures. Everyone, even those without children, are to participate in the support of assisting families, for without the family there is no future. Families who are able and blessed to have children are participating in God’s plan, not man’s, and are contributing to the well being of society by allowing everyone else to participate in a meaningful way. Thank God for every child, each and every one is in some way a reflection of His goodness.
Hi,
You may already know this but if you haven’t heard of the connection between chronic fatigue and celiac disease please check out the information on the website of Columbia Univ. Celiac Disease Clinic. I’ve had celiac my whole life without knowing it until 4 years ago. 97% of the folks with this genetic disorder do not know they have it. Until recently most doctors thought it only affected children. The year before the diagnosis I experienced what felt like chronic fatigue etc.
Basically a gluten free diet (and I mean reading all the labels!) frees me from 98% of the symptoms. BTW quinoa is gluten free but contains gliadine, the culprit in wheat gluten. You can also check out Celiac.org. The presence of gliadine etc sets up an autoimmuine rxn which can result in a large variety of illnesses. That’s why I started with the Columbia Univ. suggestion. This is not a health food phobia. Best of luck.
Sincerely,
Sheila
Thanks for the info Sheila. Your comment proves once again what I have been trying to tell people for years and that is make sure you really have CFS. Tawra and I were tested by the CDC when we first got sick and it helped in 2 ways. One we were tested for everything known to man. It went way beyond the usual testing most people get at their doctors so we know we have CFS for sure. Two not many people have been that lucky and they are told they have CFS by their doctor when they really have another problem. Of 500 people who applied for the study and had been told they have CFS, only 80 people truly had it in our study group. That means less then 1/5 really had it.
That is why over the years so often people will say they took this or that or went on this diet and it cured their CFS. Chances are pretty good they had something else like you mentioned. So thanks for the info for others to check into.
I have been struggling with this chronic illness since I was a teenager. Only recently did they actually tell me I have cfs. I currently have 4 children ages 16, 9, 6, and 18 months. I am struggling with this very much. Essentially everyday is a struggle to do the simplest of tasks and I would be intrested in learning how you cope with it. But to answer people who often ask me why I had not only kids but so many if I struggled with my health well 1. I was not as severe as I am now. Yes I have always struggled with it but I used to just need a nap here and there now I struggle getting out of bed. Gotta love aging. 2. None of my kids were actually planned. I have had other health issues and many bad doctors so I was actually told I couldn’t have kids. Then when I had my first son they told me he was a miracle and I should count myself lucky so imagine my suprise with 3 more. 3. Birth control should work but it doesn’t always. My 1st child I had the depo, now with the 2nd child for 4 years before he was born I didn’t have birth control because of insurance issue which was no biggie because as the doctors said I couldn’t have kids. Yeah no hence the 7 year gap there. With my 3rd baby I was one the pill. I do not normally say this birth control failed as in I would forget to take it once in a blue moon since by this point the brain fog was getting bad but still wasn’t dying sick. After she was born though offda. I had to be done it hit me like a train. So my 4th baby is actually our family’s funny story. I had given up on ever having s life I was so freaking sick ,(not puke sick) I couldn’t drive, take care of kids or myself. I just begged the doctors to help me and we looked for everything. Well except pregnancy test because I had an IUD and no way that wasn’t working. I made a joke about how i had not been this bedridden since I was pregnant with baby number 2. They just ran the test thinking it would be negative and we were getting ready for me to go to MRI because we were sure my pituitary tumor had grown back. The doctor called me to tell me the news. Her whole office couldn’t believe it and let’s just say I asked if she was screwing with me. I adore my children if I had to do it all over I still would. I really wish people would stop judging me and act like I deserve what I got and start being more understanding and help me figure out how to be normal again. Because at the moment I can’t even stand long enough to do 15 minutes of dishes.
Here are a couple of our youtube videos that might help you too. They will explain things easier than me trying to write everything here. I do understand exactly what you are talking about because we have been dealing with the same thing for almost 30 yrs ourselves. My daughter has four children and is always asked that question. I was pretty much completely bed ridden and was receiving many of the same comments from people that you have gotten. One day I lay on the couch crying because I was so exhausted physically and emotionally dealing with these people. God quietly told me in my heart that my illness was not my fault at all. I had done nothing wrong but for now it was just His will in my life and for me to stop worrying about what others thought, said or did because they just did not understand. There came such a peace to me. I totally stopped listening to people when they said things. In some cases in the same way I could not do somethings because it would make me physically worse, I found I could not talk to (as much or not at all) or have anything (or as much) to do with people who would say those negative things to me and hurt me emotionally. This meant family members which was really hard at first. I was allowing myself to be set up for hurt emotionally each time I talked to them and it had to stop. But would you believe once I did that and stopped listening, worrying about or even paying attention to them I actually started feeling better. No I still wasn’t running marathons but because I was not wasting time and energy on emotional things I could use that energy towards physical things. Hope that makes sense and maybe these videos will help.
Penny Pinch’n Mama We got Sick Chronic Fatigue Syndrome Part 1 Chronic Fatigue Part 2