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Adrienne Dellwo

Being a Parent With Fibromyalgia & Chronic Fatigue Syndrome

By February 13, 2010

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Parenthood is enough of a challenge when you're healthy, and with an illness like fibromyalgia or chronic fatigue syndrome, it's especially difficult. I know it's something I struggle with every day, and a recent comment left by a reader put our common struggle into words really well:

"I still feel like I'm letting my kids down because I'm not able to do/be/have enough
energy to give them everything they need. But at least, I guess, they're learning
that when Mom says in answer to, 'Can we go/do.......?' 'It depends on how I'm
feeling' really means just what it says. I try to say 'yes' some of the time for
little things and make sure I'm able to follow through, but I feel like I'm saying
'No' constantly.

I've lost many so-called 'friends' because of my inability to make plans, but it's
with my children that I *really* feel guilty."

Like her, I try to say "yes" and give my children fun times, but unfortunately they have to settle for "I'll try" far too often.

I've said before that we have to learn to accept certain things, and this is another one of those things. It may well be the hardest one to accept, though, because we all want to give our children so much, and it's hard to think about them missing out on meaningful experiences because mommy or daddy is sick.

While I can't always choose fun activities for the kids over things like laundry and housework, I do put off the mundane now and then so that I have the energy. I also look for things that they can enjoy that are also low-key for me -- a play area at a park or inside the mall, a children's museum we have in town, places where I can sit and watch them. My kids are also lucky enough to have a dad who's great about taking them to do stuff while I stay home, or who involves them in household projects and makes it fun.

I don't know that any of us can ever truly get past feeling like we're short-changing our children, but I think kids with chronically ill parents probably do learn some valuable skills. My kids have had to be especially self-sufficient and learn to entertain themselves. Having seen kids whose parents do every little thing for them, I'm proud that mine are able to do so much for themselves -- and you know what? They're proud of themselves, as well.

My kids have also learned early that illness is just part of life. They're very compassionate, and they aren't uncomfortable around sick or injured people. They're at the doctor's office with me enough that it's not a strange or scary place for them. They've even seen acupuncture and cupping performed. I do think it's possible, however, for kids who are around chronic illness to worry too much about their own minor illnesses and bumps and bruises -- that's something we're working on with my son.

In some ways, I think it's been easier on my kids that my fibromyalgia developed when they were little -- my son was 4 and my daughter was 1.5. They don't remember the year I spent laying on the couch in excruciating pain, and they don't remember when I was healthy. This is just how mom is to them. In my forum, we've talked about the differences in how kids react based on age, and it seems like teenagers have the hardest time. That makes sense; they're going through major changes already, and then all of a sudden a parent can no longer fill the accustomed role. That can create a lot of insecurity. No matter the children's ages, though, family counseling might be something to consider, so that everyone can work toward acceptance of the situation.

I think we need to remember 2 things when raising children while living with a chronic illness:

  1. We cannot judge our parenting skills based on other people's expectations, and
  2. We need to be honest with our children.

I know, number 1 is easier said than done, but it's crucial. It doesn't do us any good to beat ourselves up over what we can't do. I've had to ignore my mother, who tells me I "just can't be on the couch all day" when I'm home with my daughter. It's easy for her to say that from 670 miles away, when she's still has the energy at 64 to babysit my niece and nephew, but what can I do about it? Some days, it's all I can do to provide basic meals for my family, and if I don't rest in between I won't even be able to do that. I have to focus on the basics, and anything beyond that is a bonus. Martha Beck, who's now a life coach (you may have seen her on Oprah) and fibromyalgia advocate says she raised her children from a king-sized bed. Do what you can, and make sure they know they're loved. That's all any parent can do.

As for number 2, I think it's important not to underestimate our children. Now 5 and almost 8, my kids can tell you a lot about anatomy because we've always explained as much to them as they could understand. They know I have limitations, they've seen what happens when I do too much, and they rarely seem upset when I say, "I can't." While just saying that makes me a little sad, I have to wonder if it's not a good lesson, in a society where instant gratification is the norm.

How has your illness impacted your parenting? How has it effected your children? What has helped? Do other people give you guilt trips over what you can't do? Leave your comments below!

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February 13, 2010 at 9:22 am
(1) dayna says:

Someone had just called cps on me this mth. They had madeup lies aboutme, all which after cps checking into them was proven to be lies, but here iama signle mother struggling daily with cfs and i have people from outside making up stories and making my life even more difficult! This mth has been too much for me and I am not sleeping because of the stress. I feel like iam running on empty and the world is not on my side and no matter how hard I try I keep being judged and frankly Iam exhausted by it all! Thank you for the article it came at a time when I really needed it. Thanx for being there for me!

February 13, 2010 at 1:33 pm
(2) Jenny says:

I don’t have children yet but would love to one day and do wonder about what I’ll be able to do as a parent with this illness. I have a bit of time to see how things play out and get more information, but in the end i always decide that having a child would be worth the hardship if I am physically able to have a child. If not, I have three sisters who will hopefully bring me plenty of nieces and nephews to shower with love.

February 13, 2010 at 7:35 pm
(3) abot bensussen says:

WONDERFUL article. my kids are more empathetic because they lived with me while i was still very ill. my daughter had to drive me to the drs. appointments and fill out the forms for me. my son used to run to the pharmacy to get my meds. it was very hard raising them while i was at my sickest, but now that i am recovering they have grown into wonderful, sensitive, loving people. there were days when they were little that i’d hope and pray a neighbor would give them lifts to their activities. it was very hard being a mother with this chronic, misunderstood disease.

February 13, 2010 at 7:55 pm
(4) Loretta says:

I can tell YOU are a great mom and don’t let anyone tell you any differently. It is all about love and not what you give them or do for them. Happiness and family gives you more strength then you know.

February 14, 2010 at 10:20 pm
(5) Lisa B says:

I have no children yet but my husband and I have been talking about it.
on one hand I feel guilty for even thinking of bringing a child into a home of a “sick mommy”, on the other hand, I don’t want to miss out on the incredible joy of children simply bc I am sick.
Do I be selfish, or give up my dream?
I don’t know.

February 15, 2010 at 12:15 pm
(6) Martin B says:

My wife and I both have CFS and were part of a group of 12 who all got a viral infection in 1988, which ended up as CFS for several of us years later. We have three children and are at least somewhat functional CFS sufferers. I often feel guilt in not being able to do enough for my children or in not being able to enjoy my time with them. My kids understand that I have limitations. But they also know I do my best and if I can’t do something one day I will try and do it another time when I am better. All I can do is my best and then it’s out of my hands and I take some comfort in that.

Laundry, dishes and housework often suffer in our home. It’s always a struggle just to keep up, if we can. At least now through Adrienne’s blogs I know I’m not alone. I still can’t make anyone I know understand what I’m going through or even put it into words, but at least other readers of Adrienne’s guide will understand.

February 15, 2010 at 12:18 pm
(7) John says:

25 years ago when I got sick my kids were 1 and 3. Sadly, they never had a real father while growing up. All through this miserable illness I’ve had to force myself to go to work and then drag myself home completely exhausted. As those of you with CFS/ME know, when you are this fatigued and your mind is in a complete fog you tend to be short tempered. As such my kids grew up knowing what they saw as a grouchy, short-tempered father. It wasn’t fair to them.

But then, the medical community (the CDC included) wasn’t fair to them either. The only treatment I was ever offered for this disease was ridicule and contempt. I put the blame on them for ruining the childhood of 2 wonderful kids.

Only recently my kids (now 27 and 29) have somewhat come to understand and accept their father. I’m still suffering and I still owe them a debt I will never be able to repay. It’s too late to give them back their childhood and I will live with that unpleasant truth ’til the day I die.

If you have CFS/ME should you have kids?
The choice is yours but you should consider all the ramifications before you do.

February 15, 2010 at 6:30 pm
(8) jkcantwell says:

I have two boys, now aged 7 and 5. I’ve had fibromyalgia at least since my boys were 3 and 1. I also have challenging children, the elder being described by his school principal as ‘the most difficult child in the school’. I suspect they have ADHD but don’t really want to ‘label’ them.

I think the key is to keep talking to them about the condition and help them to understand what it’s like. It’s also important to let them know it’s not life threatening, but that sometimes it means Dad gets to take them out for activities and mum has to miss out.

Prioritising what’s really important is critical. I don’t care (well, I can’t afford to care) if I have a huge pile of ironing that’s not done, or if the house isn’t tidy. I do care about conserving some energy to read to my boys at night.

My 7yo has become really helpful – when he’s in the right mood – and helps with dinner, brings me drinks and something to eat when I’m stuck in bed, and takes care of our pets. He’s learning about responsibility and empathy – which can only be a good thing.

They will realise one day that what’s ‘normal’ for Mum is not normal for most people. However, I think they are learning a few life lessons along the way and given time, I have to believe that something good will arise from me having this wretched syndrome.

February 19, 2010 at 3:49 pm
(9) cindy says:

I have a 12 y.o. I went on disability the year he was born. I would never have not had him, he makes my life worth while. I haven’t told him about my condition because I just didn’t want to burdon him with it. When he was a baby I put him on the floor a lot because I could’t hold him. We figured it out. He is a great kid and I’m crazy about it. I wouldn’t have missed it for the world. But man has it been tough.

February 19, 2010 at 4:35 pm
(10) sally says:

Remember parent and toddler groups are there to help. government surestart centres often have people who are glad to be of help – play with your child while you sit and have a coffee – ask for help from family and friends and tell them that you want to be included in the fun but not organise it or do the running around. Sometimes its nice if the kids go off without you but not all the time. People dont mind helping you when they realise you arnt being lazy but you are ill.

February 19, 2010 at 6:00 pm
(11) 7!e11y says:

I’m 30 and have a 21/2 y.o he now lives with my sister. I have CFS, fibromialgia, disc disorder DDD, and arthritis. It has been so hard not seeing him everyday but I know he’s happy and able to get to do more. I had him the first 2 years and it was so stressful which only made my pain worse. I know that if I raise him he will have to suffer to and I can’t do that to him. I wish I could get better cause I miss him soooo much. And for all who are raiseing your kids my prayers are with you I hope everything works out cause life without your kids is miserable.

February 19, 2010 at 6:08 pm
(12) Linda says:

Being a parent with ME/CFS and Fibromyalgia is the hardest thing I have ever had to do. I have been sick since I was 15, but I was well both times that I had my children and I wasn’t aware what was wrong with me and that this would be an on going thing. I’m not sure that I could make the decision to have a child knowing what was wrong and how hard it is to raise them and deal with the guilt of being a sometimes Mother. That being said both my children are incredible people, and I am so proud of them. They are responsible, caring and compassionate. All I ever wanted was to raise good people and I have done that despite my illness and despite my guilt at not doing enough. There have been many days where the only reason I have been able to keep going is them.

The choice to have a child is a tough decision, you will need a lot of support. It’s hard work when you are well, and it’s scary sometimes too, but it is also one of the most amazing experiences you can ever have and I am very grateful to have two such amazing people in my life.

February 20, 2010 at 10:05 pm
(13) Melissa says:

I developed FM after having my first child, and had two more after my diagnosis. Trust me, none of my children would have preferred never having been born! I may not be a perfect mother, but my children know that they are loved, despite my FM. All three of them are empathetic and independent, especially my youngest (who is nine.) She’s seen the worst of my FM, but copes with it beautifully. If you have FM and want children, my personal opinion is that you should, as long as you have some sort of support system (husband, parents, relatives, or really good friends) who can help out when you need it. Again, just my personal opinion.

February 21, 2010 at 2:33 am
(14) Dianne says:

Life has certainly not turned out the way I envisioned when I had my son 18 years ago. I’ve had fibromyalgia / CFS since he was 5 years old; he remembers me giving him instructions from my bed on how to make peanut butter crackers for dinner. Things have been extraordinarily difficult at times, and I don’t know what I would have done without the support of family and friends. BUT parenthood has been an amazing adventure and I would never choose to do things differently knowing what I know now. He is a very well-adjusted, happy high school senior with a bright future, and I
can’t imagine the world without him in it. I live with guilt for what I haven’t been able to do, but no child has a perfect life. Our house is messy, our meals are usually frozen or take out, and I am always tired. But he’s been loved, and we’ve laughed, and we’ve had adventures we’ll always remember. Those are the things that matter and the things that last. I can only hope, anyway.
That being said, his teenage years have been difficult on both of us. He is seeing how other people live and is angry at how different our lives are. He knows the facts of my illness, but when he lashes out – as all teenagers do – it crushes me to hear that he thinks I’m lazy and considers me a failure because I went on disability. I hate it that he doesn’t really remember a time when I was energetic, fun, and successful. I wish he could know me as I was; as the person I still think of myself as.

February 23, 2010 at 10:01 am
(15) Jael says:

I have 7 children, 2 birth and 5 adopted. I have/am homeschooling all of them. I have had FM/CFS since I was a child. It has come and gone but the majority of the time I have been fighting this stuff. Last year I added breast cancer to the mix. I never hear anything but high praise for my kids on how empathetic they are, helpful, and smart. Because I homeschool, wherever I go they go. They are huge science fans and I think that it has a lot to do with my conditions and explaining it to them, with pictures. My oldest is 31 and my youngest is 12 and not one of them would I give up, even the 17 yo with Bipolar and other issues. It hasn’t always been easy, and sometimes not fun at all, but I have kids who know how to talk to adults as well as kids and are the first ones to offer a helping hand to someone in need.

February 25, 2010 at 9:00 am
(16) Merredith says:

Thank you SO much for writing on this topic! As a single mom, I often wish I could do much more for my 11 yo son. It is actually heart-breaking to me. He is very understanding when I say “I’m sorry, hunny, but not today. Mom feels lousy”. I know behind the “that’s okay, Mom”, is a little boy who wants his mother back! It is something different when you have had something then lost it. I was diagnosed with MS when he was 11 Months. But, because it was relapsing/remitting, I could work as a nurse, bring him everywhere, and I rarely ever said “no”, unless it was a toy that was too expensive. Maybe, in hind-sight, it was a blessing for him to see me sick when I would be unable to walk when I had a MS flare. About 5 years ago, I remember being in such agonizing pain, I cried in my dinner, stayed in bed moaning, wondering if I was dying, that’s how bad the pain was. It took about 6 months to be seen by a Rheumatologist and have lots of tests done before the definitive diagnosis of Fibromyalgia. I was also diagnosed with a connective tissue disorder (doc thinks I have signs + symptoms of Lupusn which is a common overlapping disease with MS, I suppose. But my blood work has been negative for Lupus). Anyway, my son is the reason I get out of bed everyday, as much as it hurts and the fatigue I have could knock out 10 horses!! But, I ALWAYS remember those “good ole days” when I worked, went to college, played and went everywhere with my son. Now, I go out for doctors appointments. Other than that, I’m homebound. I cry a lot for my son. I feel so guilty it hurts. Although he is sooo good, I feel sooo bad for him. Ok, I’m crying again. Adrienne, you’re a strong woman and a savior writing and blogging and researching as you do. I admire your tenacity and empathy. Thanks for being here! And thanks for this topic. It helped.

February 25, 2010 at 4:04 pm
(17) DEBORAH says:


March 18, 2010 at 11:11 pm
(18) Christy says:

Thank you dearly for this article and all the others about FM. I’m feeling kinda down tonight and needed to read that I’m not the only one. I’ve been pushing myself too hard with Community College full time, internship at special needs daycare only 12hrs week–but so painful, and 3 great teens. Luckily my dh is home to help out round the house and the kids do, too. My kids want to take guitar, belly dancing, drivers ed, dance, gun safety……I feel bad when I have to say no due to FM especially when the house is too disastrous for them to have friends over.

August 17, 2010 at 3:36 pm
(19) Rita says:

I am a single mom with a 10 month old and FMS. I am on disability. I have no idea how to go on. I got FMS from a car accident that wasn’t my fault and the insurance made my life a living hell. I couldn’t work anymore and I wasn’t compensated for anything. Coincidentally after I went through all that and had to settle for nothing, there was this massive awakening about the harsh realities of FMS all over the place and the media cracked down on the insurance company for ripping people off so now they got their act together and someone with FMS from an accident recently awarded 5M dollars. HOw I could’ve used that for somewhat of a better quality of life. Now with my baby I can barely hold him and play with him. It really hurts to lose that in these prescious years. He won’t be a baby again and you can’t get that back. ANd yea I lost my temper too when I feel like my efforts with him are going nowhere. It is so tough.

September 16, 2010 at 10:11 pm
(20) danni says:

I was diagnosed with FM 6 years ago when my daughter was 1 y.o. but I have lived with chronic neck pain since a car crash when I was 9. I don’t remember a life without pain. However, my health took a turn for the worst after my baby was born, and I have been in a living hell ever since. I believed that once my daughter was at full time school, allowing me to have a break every day I would get better. Instead I am still getting worse. The constant demands placed upon me to get my daughter ready for school and to school every day is exhausting and debilitating. We hardly ever arrive at school on time. Now I am at such a low point as the year drags on. I am at the point of not knowing how to love my daughter and not resent her existence and needs, because I know without her I would be so much better. I would be able to rest when I needed to, have the head space and peace I need, and not have the constant guilt about not being any where near enough. My daughter also has her own issues, she has high anxiety, and struggles with school. I have been considering home schooling just to take the pressure off both of us, but I don’t feel I have the initiative or energy to undertake such a responsibility. I do wonder if my child has asbergers syndrome which has been suggested to me by various people, or if her anxiety, lack of energy, irritability, sensitivity to light and noise are the beginnings of FM. I wish I was free to be me again and not just this pain filled, exhausted and miserable woman.

September 23, 2010 at 4:29 am
(21) Dawn says:

I was hit with Fibromyalgia/ Chronic Fatigue Syndrome when I was 16 & bedridden for months.
Not until I had my 3rd child did my symptoms become extremely worse. I was only recently diagnosed with FM/CFS.
I owned a gift store for 5 years but lost it all during the 5th year because I couldn’t be at work all the time I was wiped out in bed.
Currently I work online selling my crafts which makes me happy & my kids can do crafts with me while I am working.
My 11 year old has only begun to understand what is wrong with his mother, after reluctantly explaining it all to him. So he would understand why Mom cannot always attent school meetings, plays or take him on vacations etc.
My 6 year old had ADHD which makes is extremely difficult to manage her without help from others. I fear taking her out in public on my own without someone else with me because I cannot handle her high energy levels & am hoping to find a resolution to this problem because I would like to be able to take her out on my own without worry & panic attacks.
For 5 years of their life I was bedridden & housebound. But the doctor put me on a new medication called Cymbalta, which has helped a lot.
Some weeks I go through bad crashes & cannot take care of them as I would like to, other days I can take them both out with help from someone.
I do make it up to them by doing other things within the home or nearby outside, such as arts & crafts, gardening etc.
And am very lucky to have help from others to get the kids to school & take them to the park, to their house to play, etc.
My son also likes going to get theraputic massages sometimes with me.
I am sure we all feel guilty but know we are doing the best we can having this terrible desease.
Even though we are attacked & misunderstood by ignorant people every day.
I still keep on going somehow & doing what I can for the sake of my children.

January 28, 2012 at 1:17 am
(22) Tammy says:

I was diagnosed with five psychiatric illnesses, around my only daughter’s first birthday. I’m very happy to read this website as it relieves my fear of differing development to my little girl. Although it’s wonderful to have a caring husband, I become concerned about her when mommy has had to be in bed all day, or unable to function in some ways. It is true that, like other people’s comments here, my daughter, who is now 10 yrs old, is quite empathetic compared to other children her age. We have also had to raise her to be independent as my husband has to work part time. Because I have read this article and the subsequent comments, I am no longer concerned that I am pushing her too hard – she is happy, smart and well developed. She is also very patient and understands that while I want to give her what she wants, a lot of times she just has to wait until I am able. While I am just glossing over her strengths, I am also well aware that she has some weaknesses, such as often taking advantage of my memory problems when it is to her benefit.
Anyways, thank you for reassuring me that my daughter will be ok, now and in the future – that she will not be permanently scarred by my ‘scars’.
That has meant a lot to me.

August 22, 2012 at 4:25 pm
(23) Tami S. says:

I was diagnosed with fibromyalgia 10 years ago. I was pretty much bed ridden for the first 5 years, my pain limited me horribly. In the last 3 years I have ended an unhealthy marriage & found a medication regimen that made my life close to normal. In that time I also met & married the man of my dreams. 2 weeks ago I found out that I am pregnant & had to go off all of my medications that made life tolerable…I am now in a horrible state of depression, fatigue & pain. I am having a hard time imagining how I can care for a baby while suffering from this illness…I don’t know if I am strong enough to handle it & is it fair to the child? I am scared to death that the responsibility of being a parent will make my symptoms worse therefore making quality of life far less than pleasant for either of us.
Any advice or hope out there?

August 27, 2012 at 11:54 pm
(24) tiffany says:

My five year old is mad st me and wants to go live with his daddy.i’ve had chronic daily headaches..for a little over 10 years .d some days debilitating and turning into migraine.some days I lay in the bed and he’s on his own. I go to Pain clinic and they cannot figure out a diagnosis or how to treat .I feel overwhelmed with guilt and my heart broken with all that and him saying he wants to live with daddy.I thought about a child psychiatrist? He knows they aren’t my fault, nor his ~ he
is the love of my life.

October 13, 2012 at 3:41 am
(25) Tara says:

Tonight I lee in bed with terrible pain from my neuropathy that comes with my fm. I was diagnosed fm/is when my son was 2. I have also been suffering from TMJ for 4 years. I have cried tonight knowing that who I use to be would make such an awesome mom for him. He is very empathetic and understands that sometimes I just can’t. Many nights a eat frozen dinners and are I’m bed by 8. He reads or while I rest. This is our life. He has not Ebert has a mom who hadn’t been sick. Out took several years and many doctors to figure out why I suffered from binge crushing fatigue, yet had insomnia and severe depression.
I worry most about my short fuse when I am in a flare. My son has told his daddy recently that I am always angry at him. So I try every day to let him know that I live him and am proud. He is my reason for living and continuing this fight.

April 19, 2013 at 10:18 pm
(26) tessa says:

I’ve been sick for the last two years. My daughters are 2&3 and are the love of mylife. Like I said I’ve been sick for 2 years and was just FINALLY diagnosed with fibromyalgia this past week. I’m not bedridden but I’m inalot of pain most of the time. I make it a point to push myself to take them to the park or out and play in the yard but then I feel guilty that I dont have the energy to push them on the swings or chace them. Luckily I have the greatest husband ever who loves to act like a big kid and play with them. But I’m finally diagnosed so I have hope that with the help of my beloved husband and my team of doctors that I will be that mommy I’ve always wanted to be.

May 29, 2013 at 3:12 pm
(27) MomWFMSCFS says:

What breaks my heart is knowing when I do my best and all my husband can comment on are the things I haven’t done. It seems he never picks up the pieces when my flare ups are bad, rather he points out my faults. No one in his family truly understands and I see constant looks of judgement anytime I am around them. In his culture fathers are not involved in child raising. Despite talking through our expectations prior to having children he falls back on his behaviors instilled as a child. I don’t know how to respond to the situation without being angry and feeling lied to. I am pregnant with #2 and am scared that this will only make matters worse with my marriage. Of course any issues that my son has are in direct result of my limitations in my husband’s eyes, not his lack of role. I’m not sure if having him around makes my condition harder to accept or makes it easier to move forward knowing we are financially secure.

July 2, 2013 at 2:30 pm
(28) lucy p (uk) says:

I have me/cfs and fibromyalgia. Had since birth of my nearly 5 year old daughter. Im a single parent mum wiyh no family support or other help ex recently have had a social services assessment and now have a part time carer/pa for nearly 3 hours a day. I have a 16 hours per wk job admin assistant but dont know how much longer I will last as it is such a massive struggle and im off sick recently quite alot.
My daughter I find is very challenging with me and lazy. K.love her to pieces but she “plays” me alot and gets me running round after her at home.
I always worry about her missing out on things so when and where possible I try encourage to do differents things and if she gets a chance to go somewhere to take it.
It is such hard work and being a mature mum at nearly 47 it doesnt help matters. Take care all and good luck you arw all doing so well. Xx

September 26, 2013 at 2:45 am
(29) Sinneh says:

I’m crying my eyes out reading/relating to being a Simgle Mom of a 7&10 year olds. Even though its just reading everyone’s story and sharing on the Internet, it validates my claims and heart felt pain along with FIbro/back pain.
I too have NO routine support as their father has been incarcerated since my youngest was 10 months old.
So living on less than $6 a day with food stamps has been challenging. However like one of you mentioned taking on 10 horses (lol with tears), is what I do. We garden to survive but we all love it! And boy, do I feel a sense of pride!! BTW… I homeschool with no support other than my own proactivity. My daughters are so sweet,loving, compassionate, funny and talented. RVErywhere we go people say they have star quality. I hope it’s safe to say on here, WE are all on Gods grace and counting blessings is sometimes all our family has, especially living in a new environment where people have the slightest clue of what life is like in pain,Et alone friends. Oh and I’ve been on Ultram for 5 years, I hate it but I cannot function without, yet doctors do not want to prescribe narcotics anymore! I’ve even been told the pain was in my head today by a idiotic dentist after a terrible extraction on top of the pain. He actually yelled at me when I Requested relief! I cried my eyes out and that is how I ended up here posting.
Thank you for this and everyone for sharing, by golly I’m not alone.
Now if I only could get some sleep and take a nice walk today.

November 19, 2013 at 4:35 am
(30) Wendy says:

I have two little people 3 and 1.
I have recently broken up with my partner who said he understood that I had Fibro but would attack me over my lack of housework.
It’s hard… Really hard… I have no support…. But….. I no longer have to be made to feel guilty when I am already hard on myself!!

January 15, 2014 at 9:40 pm
(31) Jill AnnMarie says:

I am a mother of a beautiful one year old boy. I was diagnose with Fibromyalgia and Arthritis over 9 years ago.
Pregnancy was a tough, but so worth the end result.
Being a mother is tiring and tough. I think the only reason I am surviving it is because of my husband who can help me. Otherwise I don’t know what I would do.
Like is hard, but you take one day at a time and do the best you can.

January 19, 2014 at 6:18 am
(32) Denise says:

I started being sick when I was 12 and finally got a diagnosis 22 years later. I had Lyme Disease and CFS and just got one months of antibiotics to cure me. I felt good for a while and got the all clear from my doctor to start a family. Six months after having my baby my health went downhill and I could no longer physically care for my baby and it gradually got worse. This makes me sad as I so much want to physically care for her and I have to watch my husband look after her 24 hours a day. I miss out on a lot and can only sit on a chair and draw, read and do some play acting with her cuddly toys. She is now almost 6 and keeps saying that I am boring and this breaks my heart as I so much want to be more entertaining and have a good bond with her. I ask her why am I boring and she says I love papa more as he can do everything. She knows that I am sick but has difficulty understanding that I cannot do the physical stuff like sitting on the floor playing or playing around on the things at the pleasure park. I tell her that I love her and enjoy everything we do together when I can. I just feel this is not enough and it depresses me. Maybe when she is older she will understand but I am having a tough time accepting the way things are with my health. I am missing out on my daughters first time at the swimming pool today as I am too sick to go out. I wish there was a cure for late lyme disease so I can enjoy in the fun and swim also :-( ***

February 8, 2014 at 9:05 pm
(33) Ginny says:

I also feel so very guilty over all my children have to face as a result of my illnesses. I feel they have been robbed of the mother I used to be who was completely engaged in their lives. My youngest, who was 3 when our lives changed so dramatically, doesn’t remember the mother I was. My older children do and often express regret over the changes in our lives. Despite my guilt and sorrow for all we have lost, most especially their loses, I know they will be okay. One day I asked each of them separately from the others, what would be the one thing they would remember about me after I’m no longer here. They all answered the same thing without knowing their siblings’ answers. “How much you loved me” was the answer they gave. It made my heart soar to hear that, the first thing they would think of when remembering me is my love for them, not all the problems we faced because of my health, nor all they missed out on but my love. They were only 8, 13, & 15 years old at the time and been living with these extreme circumstances for five years. No matter how much they miss out on the way I used to be, if this is how they will remember their mother I know my children will grow up to be fine despite them. Regardless of knowing they will be okay, I still feel guilty for what I cannot provide them but I feel better about what their futures will be.

April 25, 2014 at 8:53 pm
(34) kalli says:

My husband and I are foster parents and have our first placement. I have CFS, Myofascial and Fibromyalgia, and I also work part-time at a nursing home as a unit ward/secretary. She is 4 and very needy and wants me to do everything with her or for her and is draining me. Last night I decided I have to either save myself, my job, my marriage or be a parent. I applaud all you people for struggling on and still be parents. I have no relief, while I have some good days, most of them are 5-8 on pain scale all over especially my legs ( I have 3 herniatied discs, DDD, and a pinched nerve in my back). I’m only 28 but I made a hard decision that right now I cannot be a parent with these conditions. If it was about 4 years ago, probably so, but not now. Thanks and blessings

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