1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Children-pregnancy- any experience? Help!

Discussion in 'General Treatment' started by alexa, Jul 14, 2012.

  1. alexa

    alexa

    Messages:
    57
    Likes:
    24
    I have been sick for 3 years and i have always wanted children.

    I don't know how to formulate this question... does anyone out there have kids? did you have them before or after you got sick? are the kids sick? or have autism or aspergergs?

    I have really been trying everything to get well so that i can have kids... right now i am going to KDM and he has me on antibiotics, probiotics, GcMAF, 4ME, b12
    i am also taking LDN ( the only thing that has worked)
    and antidepressants which really help with the dizzy spacey feeling in my head

    any tips advice anything is helpfull, i feel very lost
  2. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    406
    It's your own decision of course, but who will take care of these kids? Will it be a good thing for them to have a ill mother around? Will it make you even iller? Will you be able to cope if they become ill one day (ie. if the illness has a genetic component and you passed it on to them, will you be able to deal with the guilt?)
    Sorry to sound harsh but I personally never understood parents who have children despite having a severe disability. Perhaps you have siblings and you can enjoy your nephews/nieces?
  3. justy

    justy Senior Member

    Messages:
    2,555
    Likes:
    2,525
    U.K
    Hi Alexa, i think this is a very valid question and one that you will need to consider - wether it is right or worng for you and your partner, how you would cope etc etc. In my experience of people asking this question publicly beofre, it can get a bit heated and that may not be what you want.

    This is my story: I have 4 children, 2 before i got sick, 2 whilst in a partial remission. So i was realtively well nad functioning for the preganancies and births and early months. I became sick for the first time when my 2nd child was about 15 months old (when i stopped breastfeeding - maybe hormones had something to do with it) I was moderately ill for about a year and then gradually improved to be mildly affected for a few more, before having a partial remission to about 80% functioning. Then i had two more children and my functioning kept improving until 5 years ago when i caught measles from my children and have been severely/moderately ill ever since.
    I breastfed all my children for at least a year each and only one of them - my eldest daughter who is now 18 has been ill. She is undiagnosed but was bedbound and then housebound with a mystery illness for two years which seriously affected her schooling, i was laos very very sick then and had to care for her - very hard times. She has since moved out and gone to college, but her illness has impacted on her ability to study over the past two years. She has scraped by and now has an almost normal life for a young woman apart from low stamina, frequent tonsiliits and some stomache and bowels issues that are unresolved. I dont know what will happen to her in the future, i suspect she will have to be careful.
    My other children are all well and very healthy and bright. Ny eldest is 21 and he has a baby also very well and healthy. My youngest two are 12 and 9 - so its still possible they could be ill, but so far all good.

    It may have been hard for them having a mother who is often ill - although i have always pushed myself to be a good mother and be there for them. My youngest has missed out the most becuase i have not been able to take her out alone for shopping trips etc fpr many years - we cant go swimming together or go to the cinema without help so i know she finds it tough and emotionally she is sensitive about it. The others do miss out and so do i - i cant go to their college things as its too far for me to drive and i dont get to seem y grandaughter very often for the same reason. But they are all ok and happy and dont worry about it.

    I am so very grateful that i have my family. Without them i dont think i could cope - they have kept me going when i may have otherwise given up. My life has meaning and structure and hope becuas eof them.

    On the other hand i had to push hard to look after them and have often just wished to be on my own to be left to rest and recover. I am not able to pace effectively and feel worse because of it.

    I do hope that you find a solution that works for your family.
    Justy x
  4. LilacGardenia

    LilacGardenia

    Messages:
    71
    Likes:
    38
    There is no clear evidence if those medications effect the fetus--some say yes, others say there isn't enough evidence.
    Carrying the child to term, delivery, then breastfeeding are all very energy costly tasks. I don't want to discourage you or anything like that (ultimately it's obviously your choice), but those are all things to keep in mind.

    If worse comes to worse, you can always foster or adopt. I know several couples that had health issues, and another that lost their first child to a genetic disease, then decided to adopt since there was a good chance the next could inherit the disease, as well. All of these couples ended up very satisfied and they are happily ever after. 1 out of every 5 American foster children never find homes and around the world there are lots of children that need homes. I guess that option would be a win/win. If you foster, you can help out a kid in need and if your health would decline, it isn't permanent (the kid may be adopted or can be put in another foster home.) I know there's a shortage of foster families--the adoption agency in my state is always looking for foster homes. If you choose fostering, you can also choose what age group you'd prefer--you could take care of infants, children, or the tween/teen-aged kids. Since the older ones are more independent, you'd still have the joy of caring for them and spending time with them, but they wouldn't need you as much as say a 2-year-old. Just a thought. :)

    I wish you the best--it sounds like you'd make a really great mom! :)
    L'engle likes this.
  5. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I think it's a good question. How would one feel if their child got very sick. Any child can get sick but knowing there is likely a genetic component to our illnesses, if a child got very sick to the point of being unable to have a normal life, how would the parent feel knowing they chose to have a child despite their illness and the genetic factor. I don't think there's any right answer, but I think anyone in our situation would have to address that question before hand and make sure they could emotionally (and otherwise) handle that possibility if it were to arise.

    People grow up with all sorts of obstacles and do okay. I don't think being ill is a reason not to have kids, if you can find a way to care for them. But I think addressing the possibility of the child getting very ill, and also really thinking about how the parent's illness could affect the child are both important.
  6. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    406
    There is also another dimension to the issue. Sometimes people with a severe illness/disability want kids as a sort of 'statement' to show themselves and the world that they are as anybody else and that their illness was not an obstacle in their life. There is also a very strong social pressure to have children, so 'you are normal' (ie. you were right to ignore what you *thought* was a severe illness...)
    Are people with severe illnesses really better off with children at the end of the day ? Well, I'm not sure but I don't blame them because of the ambient disability bashing climate, we'd better fit the mould...
  7. alexa

    alexa

    Messages:
    57
    Likes:
    24
    so many things to take into consideration. My parents are both ob gyn and they say that science changes, before you were adviced against having kids if you were diabetic or had heart problems, but now its ok. But there are no reasech being done on this (understadably, first things first, what is ME...)

    And i am sick!! Something is obviously wrong with my body and putting a baby in that enviroment just seems wrong. But then people who are sick go on to have healthy kids, and my mom who is the picture of health had me...:)

    i have been trying to think about this logically and philosophically, would i have liked not to be born just because i am sick? but of course my mom had no clue...

    it is so hard to make an informed decision when there are so few fact and it is all about risk and chance.

    I live in sweden, and i am not allowed to adopt since i am sick..... and there are no foster kids here

    my sister does not want kids

    i think i would be ok not having kids but i do worry about my husband who wants them, and how meaningless my life would be, i had to give up my careerr for this disease, so i would be without kids or job...great...

    it is soo good to hear form you people, my friends can't understand what it is like to have this disease, they all just say go for it...
  8. Tito

    Tito Senior Member

    Messages:
    300
    Likes:
    406
    There is a sort of romantic view about having children: they will make your life meaningful, they will love you, etc. and then what you see around you seems a very different reality: pensioners never visited by their children, parents divorcing because their children are nightmares, a spouse having children to "please" their partner and that turns into a disaster, etc. People have different opinions and at the end some will say it was a good idea, some will secretly think they had avoided.
    But what I yet have to see is children telling that they enjoyed having very ill/disabled parents...
  9. KathySkes

    KathySkes

    Messages:
    78
    Likes:
    18
    Hi Alexa,

    I really feel for your predicament, it is so difficult to know what to do. I have two children, ages 8 and 10. They are a joy and I am so grateful to have them.

    My story is I have had mild CFS my entire adult life, but I did not realize I had CFS until I had two major crashes in the past three years. I am currently moderately ill. So when I had my two children, I didn't know I was sick. Fortunately, my husband works at home so he was/is available to help out 24/7. I could not imagine raising children without his full-time assistance, even when I was just mildly ill. How much support you will have from spouse/partner or family is something you may wish to consider.

    In my current state of health I don't think I would have any more children for fear of another downturn. I feel sad that I am not able to be as active with my children as I would like, not currently anyway. I do hope for improvement in my health long-term. However, these are harsh realities to face.

    I also believe children are resilient and that a parent who is present in their lives, even if that parent is disabled, is better than no parent or a healthy but unengaged parent.

    So far my children are very healthy and I pray they will not have to face the same problems I have had.

    Best of luck to you in your decision.

    Kathy
    justy likes this.
  10. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    K
    Kathy feel free to not answer if you don't feel comfortable doing so or don't know, but if you'd known your diagnosis earlier do you know if you would you still have made the choice to have children? I guess I'm just wondering how many would make or have made the choice to have kids after they were sick and diagnosed.
  11. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,445
    Likes:
    1,944
    London
    Actually going on to have children after thinking through all the ethics, consequnces etc may be harder than one anticipates. There seems to be a lot of infertility amoung couples that I know and that's not just the ones with ME.

    My experience was that after meeting my "prince" and deciding to have children it simply wasn't possible for us. We had miscariages and IVF failures only.

    There is little information on infertility and ME and CFS. Miscarriages do seem to be more common but one paper I read put this down to possibly being the age of the ME mothers. No one has done a study of women with ME and CFS and miscarriage so we just don't know.
  12. justy

    justy Senior Member

    Messages:
    2,555
    Likes:
    2,525
    U.K
    Ocean, i know your question was not directed at me, but i would like to answer it anyway. I WOULD have still had children even knowing i was sick. I did have 2 children after becoming sick, but as i explianed i was in remission and also undiagnosed for many years. How my choices would have been different may have been to have had less children.

    Of course this is a moot point becuase i do have 4 and i wouldnt un choose any particular one of them. I agree with Kathy tht level of support is very important. I wouldnt cope very well right now if i didnt have a husband who was very dedicated to me and the children. He works full time and does all the shopping and takes the kids to swimming classes, ballet etc. For a few years he also had to do more caring for me and take them out for trips without me. Now i am a bit better i get out for day trips with them with my wheelchair and try to accompnay to out of school activities whenver i feel able. It is a big strain on my husband and i know he would still choose to have children as it was very important to him, but i often wonder if he would still have chosen me if he had known what would happen - he is a very active and physical man who loves camping, travelling etc. I try to encourage my family to do these things even if i dont go. Not feeling sporry for myself because i couldnt take part was a big lesson for me. Otherwise we have a rpetty normal family life.

    All the best, Justy.
    L'engle likes this.
  13. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thank you for your response Justy. I know it's hard for our spouses but my guess is they would still choose us even if they knew how sick we'd get. I know if the roles were reversed there is no way I would not not choose my husband.
    justy and L'engle like this.
  14. KathySkes

    KathySkes

    Messages:
    78
    Likes:
    18
    Ocean, I honestly don't know. Although I always wanted children, they are more work than I ever imagined. I never did any babysitting or other childcare, so my own children were really my first experience with kids. I have a friend with a special-needs child and see how much extra work that is on top of normal child-raising, and I don't know how I could have managed a situation like that. Life's somewhat of a gamble, I guess.
  15. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks for answering Kathy. I can see both sides of the coin on this topic.
  16. alexa

    alexa

    Messages:
    57
    Likes:
    24
    I am worried about miscarriages aswell... i have heard that ME sufferers loose almost 50% of pregnancies before week 15, some think this is because of the immunesystem being in the wrong way ( th2 or th1 i always forget which one..)

    my husband knows that he would have to take a lot of the burden and i would not work anymore ( i work now) but i am not sure he understands just how much work it could be. I have worked with kids and worked as a private nanny and i know how energy draining kids are ( and the noise!)

    i work as a funeral director and i see there old people with no kids all alone, left to rot in their apartement, even if you have a good relationship with your godchildren or neices they usually don't step up when you are old and dying, this scares me.

    i always dreamed of having a family but i have a wonderful husband, and i am still well enough to do quite a lot of things, sometimes i don't want to risk it. especially if i have a special needs child...

    i have tried to find specialist in this but there are none, so for now you guys are my specialist, people who have been there.
  17. justy

    justy Senior Member

    Messages:
    2,555
    Likes:
    2,525
    U.K
    Hi Alexa, it sounds like you are farily high functioning if you are able to work? giving up work tpo be a full time mum is much easier to cope with if your functioning is on the higher side. Although you would need to really take care of yourself so that you dont relapse or get worse - this is perfectly possible - i am sure i wouldnt have relapsed if i hadnt been pushing my self so hard. There are also lots of ways these days that things can be made easier - having shopping delivered etc.
    For me i think that babies and older children are not so hard to look after as toddlers. Between crawling and starting school children are such hard work. Now i have 2 grown up children as well as two younger ones at home, i really appreciate them all. It is lovely having adult children to chat to on the phone - mine are very supportive emotionally and very kind people.

    I don't know where the figures on miscarriage come from - have you seen a study? or is it something thats more of a rumour? I've never had one, but dis have endometriosis - whioch they kept telling me would get better if i had another baby - it took 4 but i havent had problems with it since she was born 9 years ago!

    I was also one of those who felt better when pregnant - which may have been becuase what with breatfeeding as well you have to slow down and put your feet up a lot. I always slept every afternoon each tim i was pregnant and this was very good for me when i was only mildly affected.

    Take care, Justy.
  18. alexa

    alexa

    Messages:
    57
    Likes:
    24
    I have read a study, it is an old study with only 64 participants and they did not controll the age factor, they also expressed some concern that the babies were mentally challenged...but they did not follow up to see.

    Justy: are your kids healthy?

    I am quite high functioning, but i have only been sick for three years, i don't feel like i "know" my ilness, i have had some real bad moths and some where my POTS made walking and standing very hard, now this is under control.

    I do think i can physically handle taking care of a kid ( i don't think i will have a life outside that...) but i am worried that they are sick or autistic or on that spectrum. i think about how much i worry that my sister gets sick and i can just get a clue of how much i would worry about my kids...
  19. KathySkes

    KathySkes

    Messages:
    78
    Likes:
    18
    I can see both sides also. Sometimes these things are a leap of faith in a sense, though, kwim? If I had really known what it was like, maybe I wouldn't have had kids. But I'm so glad I did. People who aren't sick probably go through the same thing, sickness just adds another dimension to the whole process. It's a very personal decision based on so many factors.
  20. justy

    justy Senior Member

    Messages:
    2,555
    Likes:
    2,525
    U.K
    Hi Alexa - in my first post of this thread i discuss my kids health in detail.
    One of my daughters MAY have M.E - she was sick for a couple fo years then has gradually improved. All the rest are very strong and healthy. I have never seen any evidence that suggests PWME are more likely to have disabled children. There may be a genetic element to the disease, like with autoimmune conditions, but this is also not really known.

    I know a lot of PWME with very healthy children - sometimes someone crops up with an ill child, but they dont seem to be the norm. I have always worked very hard at keeping my kids as healthy as possible - i see it as part of my job. There immune systems are very important so they were all breatsfed for at least a year each. They had healthy diets - lots of sunshine and outdoor play, no vaccinations etc.

    All the best, Justy.

See more popular forum discussions.

Share This Page