Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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Waiting to be a parent

Discussion in 'Lifestyle Management' started by Hugo, Jul 24, 2016.

  1. Hugo

    Hugo Senior Member

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    Hi this is my first post here in phoenixrising. Im soon to be a dad in just a month. I go up and down in my feelings towards beeing a parent and to be honest I dont think I would choose it if my partner didnt want it desperatly. The reason for doubting is ofcourse ME, and since I got Lyme some three years ago it hasnt excactly improved and pain is with me everyday. For you who are parents or parents to be, what feeling do you have about being a parent with ME.

    Three things worry me. That my child will get ill with ME or lyme or both, that the kid will get sick a lot in the first couple of years (they get everything and are highly contagius) and then will make me even sicker, and also beeing a god parent especially when Im in my worst periods.
     
  2. Firefly_

    Firefly_ Senior Member

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    It's normal for a healthy first time parent to be worried, then stack ME and Lyme on top of that and it would be terrifying I'm sure!

    If your wife is planning on breastfeeding, that will greatly help the baby's immune system function optimally so they are less prone to illness and as far as your ability to be a good parent while in your worst periods, I'd think your wife could cover all the "heavy lifting" and you just love the kid. Ultimately, that's all they really need. You can love and nurture from a couch, read to them, watch cartoons together, tell them loudly and often how much u love them, hugs and hugs and hugs.

    My kids were mostly grown when I came down sick, but I do have a 16 month old granddaughter, and that's often all I can do with her is bring her up into my bed and watch cartoons, read stories, and just snuggle. She loves it.

    Good luck, relax and congratulations, you've got this.
     
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  3. Hugo

    Hugo Senior Member

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    Thanks Firefly, your post meant a lot to me. My partner are going to take most of the workload so in that regard it will be easier. When she give our child milk (breastfeeding) I also think she boost the kids immunesystem, what I heard the worst period is after the breastfeeding period is over (with regards to the child beeing sick).

    On top of this we will remake our flat to fit our needs so its a lot of stressors rigth now. Plus I cant go on antibiotics anymore since my candida has gone in to hypermode when I take it. I will probably need to take lyrica or something like that to reduce the pain. Well I dont want to complain, ofc this is exciting aswell. But right now I dont have much room for positive feelings in my poorly functioned vessel.
     
  4. justy

    justy Donate Advocate Demonstrate

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    Hi - I am a parent of 4 children and also have two grandchildren. It IS a lot of hard work having children, especially when ill with M.E. but having my family has been what has kept me going through the darkest moments and most challenging times. They bring me so much joy (and pain), they are my companions and they make me laugh and make me proud!

    Yes - toddler and early years at school are hard with infections etc. Your child needs to be sick to grow their immune system - you don't need to be sick. It is a balancing act, a lot of new parents get sick a lot when their kids go to school or pre school. All you can do is keep them and you as healthy as possible - breastfeeding, good diet, fresh air, sunshine etc.

    I think ME can run in families - we have three generations of women in my family with it (and me and my daughter both have Lyme) however I think this is usually through the female line, or transmission congenitally of Lyme etc is through the placenta - so probably less worry if you are a man having a child.

    I wish you and your family much luck and hope you enjoy the experience. Last week my granddaughter was here - she is 6 months old and laughed when I took her on my lap in my wheelchair and wheeled around - we had a lot of fun!
     
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  5. Hugo

    Hugo Senior Member

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    Thanks justy for your input and for you best wishes.

    You probably right that the risk is higher when you are a pregnant woman cause for example lyme can pass the barriers in to the fetus. Also breastfeeding could be a way to infect your child with lyme or other infections. But its also an genetic factor and some men get sick children so I hope it will not be the case. But maybe by then we know a lot more about ME and lyme.. who knows.
     
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  6. msf

    msf Senior Member

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    Hi John, I don´t have any experience having kids, but I am one of those sick children of men...I have thought about this in relation to having kids of my own one day. In my case, there is most likely a genetic component. So if I had kids I would want to protect them from the potential consequences of this genetic endowment. Until we know more about the genetics, the best you can probably do is be alert to any new infections that your kids get, and if they last longer than a month, say, look for expert medical advice from one of the ME doctors who deals with infections.
     
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  7. msf

    msf Senior Member

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    Oh, and I believe a proportion of patients (including myself) have got ME from a gut infection or Lyme, so try to make sure they don´t get food poisoning too many times and make sure they cover up when they go for long walks in the countryside, etc.
     
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  8. lnester7

    lnester7 Seven

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    This little thing will give you strength that you did not even know you have, I think is a blessing like no other, specially with ME because you will need a reason to keep going when you hit that number where is not worth to even suffer that much (for me that is a 3/10)

    1) I did get sick with everything the first 2 years. If I would do anything different is to do more probiotic after each stomach bug bout.
    2) When My kid was a toddler they get into a lot of dangerous situations and I had to run after the kid (crashing tones of times) I told my hybby not to let me alone w my kid so I would use more baby sitters if I would do it again.
    3) I would of hire help if I could afford for the overnight stuff. There is no need to skip sleep if you can afford it (so you can be a good parent, w my CFS I cannot afford the lack of sleep.
    .............
    4) My kid was the first to understand CFS, kids are not pre-judgmental. So you will be surprised how it works, like my kid says hey sit down so you don't pass out early on as a toddler she understood what CFS was and how it works, she warned me before I would even get tired. My dog also by the way. Is easier w kids and dogs than adults. My baby played w me stuff she knew would not hurt me once she was older and did a lot for me.


    I would love not to have CFS and do more for my kid. Could be she will resent this later, but she is my reason to be, and if I would not have her I am not sure how I would have make it this far.
     
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  9. caledonia

    caledonia

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    I'm writing from the perspective of a child who had a mom with ME. She became sick when I was about 6, so I remember a little how she was before and a lot how she was after.

    As long as your partner is supportive and can take up the slack on doing physical things, it's going to be ok. Kids are very adaptable, and it was just normal to us that our mom didn't have much energy, and that our dad helped out with the dusting and vacuuming. This was back in the era of when fathers just went to work, and didn't raise kids or do housework.

    My mom trained us early to make our own breakfasts and lunches and to help out around the house. Nobody was psychologically scarred for life or anything...and I'm sure it actually made us better people in the long run.
     
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  10. Hugo

    Hugo Senior Member

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    Its nice tor hear that it gave you a strength and a will to fight on during hard times. It is probably nessesary for this to work for me that I will find this feeling of meaning. In my darkest moments though I sometimes feel like having a child would prevent me from ending everything and therefore removing me from that choise and how weird it sounds that is not possitive when im in that state of mind.

    Thank you for your post and I hope I will find the strength you did, and I take your tips to heart. Dont worry for the child ending up resenting you (I also thought about that, they will like you when they are small but then ending up feeling different) but I think thats either a child with mental problems or that you or the other parents act in a weird way towards youre illness.
     
    Last edited: Jul 26, 2016
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  11. Hugo

    Hugo Senior Member

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    Thats nice to hear, are you sick in ME yourself by the way? My mom have MS and when she understood that I was sick (that happend when I was an adult) she felt it was her fault in a way, her genes. Not for a second did I think so though, without her I wouldnt exist.
     
  12. caledonia

    caledonia

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    Yes, I have ME too. My mom never got officially diagnosed. But her symptoms were so similar to mine, one day it finally dawned on me we had the same thing. Suddenly, all the seemingly random issues she had for decades made sense.
     
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  13. Hugo

    Hugo Senior Member

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    Yes I seen that to in some families I know of. Its not that much known about the genetics, not so strange though since its still this constant debate about cfs (even though its much better this days than a decade ago).
     
  14. Hugo

    Hugo Senior Member

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    Seems like all kind of unluck with illnesses that can happen to us with ME happens. Now my partner got lyme from a tick. She treated very early and she has no symtoms at all and her ring on the skin is now no more. So I hope the bug didnt get anywhere else in her system. Its very late in the pregnancy aswell and she will give birth in just three weeks so the exposure time will be low from the placenta.

    Though because of the pregnancy she could just treat it with penicillin and no cykline. Still her immunesystem is completly different than mine (shes does not have ME) and she had no problem at all with lyme it seems. Hope that will be true for the kid aswell.
     
    Last edited: Aug 16, 2016
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  15. Hugo

    Hugo Senior Member

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    Now I have a little boy. His healthy and his a cute funny little guy. In the beginning (first two weeks) I was really doubting my desicion to be a parent. I dont anymore since he is so wonderful and it has brought a warmth to the relationship with my partner that I never experienced with anyone even before my illness.

    On the negative side is that it also brought stressors and responsibility.. something thats hard to have with this discusting illness. My lyme pain is awful during the winter and my view on the future is bleak. Thats mainly cause Im really starting to get crazy about my situation of just throw my education down the drain. In someways this is amplified because I have a child now and in some way its less important.

    Well atleast Im very happy that my child is healthy and he smiles a lot.
     
  16. AndyPandy

    AndyPandy Making the most of it

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    Congratulations on the birth of your son @johmil :)
     
  17. Hugo

    Hugo Senior Member

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    Thanks Andy :)
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    congrats,

    now i guess you have more hard decisions too eg vaccination. Lots of us with ME/cfs have children with autism. I know that connection isnt proven with autism and vaccination but i had a friend who's son become autisic after a vaccination (within 24hrs this completely normal baby went autistic).. and of cause it can be a ME trigger to in those susceptable.

    One good thing with having a son is if he doesnt get ME/cFS in childhood there would be less chance as an adult. I remember what that worry is like for ones child and still have it as I have two grown daughters and i still really worry about if they will get this.. I wish I had had sons for this reason.

    we had ME/cfs hit my family at the rate of approx 25%.. stems down from my grandmother (who had FM and a multitude of symptoms though not post exertional fatigue).. and through her sons must be carriers of the susceptability, all 5 of them didnt get sick but it hit the her granddaughters from 3 different sons (4 of us with ME/CFS out of 17 grandchildren. the youngest to get sick was in her late teens)

    ME specialists have said the rate of transmission to our children is 25% so this tallys with my family so I guess with 2 daughters there is probably a 50% risk that one of them will one day get this. Best luck, I hope he stays happy and healthy.
     
    Last edited: Nov 16, 2016
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  19. UKmum

    UKmum

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    Congratulations- just remember to sleep when he does- don't try to catch up on other stuff. If he does get CFS/ME in the future- and there is no saying he will- then he will have very understanding parents to help him through it.
    Enjoy this time..... its very special and goes very fast (even though sometimes it doesn't feel like it)
     
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  20. Hugo

    Hugo Senior Member

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    Thanks for your words. I already done the vaccination and it seems to have caused no problems so far.. his certainly not autistic (there was a worry for that but not for ME but from my fathers family we have some cases of autism). He reacted badly to a live virus vaccination though he got for a stomachvirus, that was stupid to take that one since its not that dangerous disease. But he has recovered from that one.
     

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