Family planning when you are young and have CFS

[Maya]

Hi,

I am the carer of Willi, writing this for us, because he cannot use a computer (vision problems). We are a young couple and confronted with this terrible disability since one year. We are engaged and want to marry. But the situation is very difficult, especially financially. I am researching, reading and learning about how other people manage to keep a family life with a disabled family member.
We both want to have kids.
We both worry, that it might be too much for us.
In the moment I am in a phase of carer burnout and fighting with the symptoms.
If anyone has advice and experience about having a baby with a CFS daddy, it would be interesting to read.

Maya

 

[SOC]

I will be honest with you Maya. Raising a child (or multiple children) is a lot of work. It will be vastly more difficult with a severely ill partner. That does NOT mean severely ill people shouldn't have children, of course. It probably does mean that you will have the plan your lives very carefully to make sure that you do have the money, time, and energy to raise a child well. It will take a lot more thought and planning than it does for healthy parents. You will have to give up a lot more than healthy parents do to make a good life for your child.

My best suggestion is that you invest all the time, money, and energy you possibly can now to get Willi to a top ME/CFS specialist and improve his condition before you think about bringing a child into the world. It would be an investment in your child's future. If you can't afford to get medical treatment to improve Willi's health now, you probably can't afford to raise a child yet, either. First things first. Get yourselves as healthy as possible, then think about having a child.

 

[Gingergrrl]

@Maya, I have to agree with SOC and that taking care of Willi's health is the priority right now. Are there any specialists in Greece or would you need to travel abroad? I do not know the details of your situation but if there are aspects of Willi's illness that can be tested and treated, I would focus your time and resources on that first before trying to have a child.

I can relate although my situation is the reverse (I have CFS and my husband helps to take care of me.) I suspect I am not as severe as Willi as I do not have vision problems and can use a computer and can do my own research, e-mails, etc. For about two years, my husband and I saw fertility specialists (prior to knowing I had CFS) but learned that even with IVF, my odds of success were about 5%.

The treatments were too expensive, dangerous, and then once I realized I had CFS and got more ill, we knew it was not meant to be (so we never attempted them.) I now realize that there is no way I could have taken care of a baby. I have a step-daughter and my doggie and do not have a shred of energy left beyond what I already do (and that is with a significant amount of help from my husband- I cannot lift, carry or do anything even remotely strenuous.)

So, in your situation, if Willi is very ill (which he may not be, I just got that feeling from your post) then you would be the sole caregiver of both Willi and a new baby. Personally I cannot imagine how this would be possible especially if you are also going to work? If you have significant financial resources to hire a caregiver or have family to step-in for daycare, that is the only scenario I can imagine. I am not trying to be negative, only realistic. I had to reach that conclusion myself, that I was not well enough even to pursue adoption.

Willi is lucky to have you and you sound like a very caring person and loving fiance.

 

[Maya]

Maya: Thank you SOC and Gingergrrl for you open words. I am sorry for you Gingergrrl, that you couldn't fullfill your family wishes. When I wrote this thread yesterday, I felt how much this is effecting me, probably because I always wanted to live in a big community around me and being now left alone with my sick loved one is just too isolating. Having children would be nice as there is a bigger family circle created, also as support for later years. Of course, the first years you have to give a lot to the kids, but when you are able to keep a lovefull realtionship, there will be a lot of support be given by your kids to you. With me working every day, it might be an advantage, that he would be at home and be able looking after the kids, as long as they are young. Of course, we would need to find a housekeeper, that supports him with cooking, the house etc. For improving Willis health: we didn't looked much into medication as he is afraid of side effects and the doctor also only recommended sleep, rest and healthy diet. As a natural healer, for me it's very difficult to not try to force him, to take any herbal remmedies, and his parents come every week with another super vitamin medication...

Wili: When it comes to doctors we have eventually found a really good doctor in Greece. This was not easy, as it was a long process that involved visiting way too many doctors in several countries who all seemed completely incompetent. However, the good doctor is not really an ME specialist, he is Immunology specialist, who has experience with autoimmun conditions and rare diseases in general. He has experiences with MS, lyme disease, an CFS. We originally went to him as we thought I have Lyme, but after a few month of seeing me, he decided, it was not Lyme and it was very unlikely to be MS either. He testet me for a few other conditions and concluded that it is most likely CFS/ME, possibly together with bechets syndrome. The ME was most likely caused by a viral infection, mostly likely EBV. He discribed my symptoms as not being severe enough to make it worth risking side effects from medication. However, the vision problem seems to leave him puzzled as well, as far is treatment is concerned. I am generally not in such a terrible condition, but the vision problem makes it impossible to do basic tasks, that I used to take for granted. My energy level is definitely high enough to use a computer and read, if I would be able to see. But still, not enough, to raise a child. My biggest concern is not having a steady income in the moment as I am not able to work. I would be open to seeing an ME specialist, but I have completely lost my faith in doctors. While I could effort a trip to the USA, to see a specialist there, I am not sure if I would survive the trip. Being on board moving vehicles is sheer torture for me. Also, our finances are not that good, that I would risk, spending all this money just to be told the exact same, that my local doctor tells me. Plus we certainly couldn't effort to visit 15 more docs until we find someone who could really help my condition to improve. It is quite a big gamble. So in some ways, I find it preferable to use the money we have available to rest and have a healthy diet while remaining with the local doctor, who so far has proved to us to be the best doctor in Europe with quite a wide margin. Everyone else we saw should really have their licences taken away. Personally I think we are not ready for children any time soon but I also see that we definitely don't have so much time ahead of us, as we are not getting any younger.

 

[Alea Ishikawa]

Maya, it might help to read this thread and this thread.

Basically, you're going to have to be prepared for the possibility of acting like a single parent, plus care for an ill person. If you are struggling now, then the addition of a child/children will only add to that stress. If Willi has sound sensitivity or needs uninterrupted sleep, then a child wailing at odd hours of the night for at least a year might factor into your equation. I have heard parenting is exhausting, even for healthy folks.

Few people recover from ME/CFS. If they do, they may relapse later, sometimes worse than before.

There might also be a genetic component, as your little one may end up with a greater predisposition toward ME/CFS. I remember reading something like 5% increased risk for family with 35% prevalence for identical twins.

Pathogens might be a concern. For example, L-form bacteria can be passed on with sperm.

Children are also very expensive. The latest U.S. estimate to raise a child to 18 was $245,000 USD each, not including birth at the hospital or tuition for college. (There is some variation of cost for rural areas vs. more expensive areas.) Add that to the cost of your fiance's care. Also, consider what will happen if you become ill or lose your job, too. Would you be able to work during/after pregnancy? It might help to create a budget. Maybe talk to current parents to see how much they spend per year in Greece.

If you decide to have a child, make sure you have a very good, willing support network to fall back on, and a good job for money.

Caledonia talked about genetics, preparation before conception, and having a mom with ME/CFS, here. Justy is a PWC with 4 kids. SOC and her daughter are both PWCs here. Another story here.

Also be prepared for the possibility that the child may not be able to take care of you (having their own issues) or that you may be taking care of them for life. Also, a child can become resentful if they find out their physical issues were knowingly passed on by the parent. They may prefer a distant relationship. Not all families get along, despite the intentions of the parents.

There is also the idea of waiting for a 100% cure, then adopting. You could also consider investing into kids in other ways, like maybe babysitting nephews/nieces, teaching a class, or providing for a charity. Are you living near family? There's more than one way to build a community, love, and support for your latter years.

 

[justy]

Hi, sorry I don't have the energy for a longer reply at present but had a couple of thoughts.

I am interested in the Behcets diagnosis. I believe that many people with Behcets have been misdiagnosed with M.E and I also always believed that if you have this diagnosis it excludes M.E/CFS as well. I am certainly not an expert on this, but remember one prominent M.E activist (male) in the UK who went on to be diagnosed with Behcets rather than M.E. I'm sorry I can't remember his name, but someone else may be able to - he was involved with one of the UK charities. could be this man

http://parakoch.blogspot.co.uk/2013/01/stephen-ralph-on-behcets-mecfs-and_19.html

Also saw this, talking about eye problems in Bechets disease - it's very common!

http://www.behcets.org.uk/Documents/web - eyes.pdf

I think what I am trying to say is that I don't think you can have Behcets and M.E = the symptoms can be similar and do overlap - there are not many Dr's who are familiar ith unusual presentations of Behcets.

I know that @merylg looked into Bechets as an alternative diagnosis for some time and will know way more about it than I do.

 

[Tito]

I agree with Alea. But my remembering of the statistics is 25% for a parent to pass the illness to a child. I also remember KDM telling me that when one twin is ill, the other is also ill (less ill, but still). In my family, my sibling and I are the third generation (that we know of, with that illness, through maternal and paternal lines).

Having children would be nice as there is a bigger family circle created, also as support for later years.

I don't want to sound too pessimistic, but the fact is that when a parent is not mentally available (due to illness for example), the bond between the child and the parent is a rather weak one if any. As soon as the child can leave, he/she will, and there will be no support to expect. Read taniaaust's experience with her daugher. It is edifying.
http://forums.phoenixrising.me/index.php?threads/having-children.24380/#post-373767

My personal view is that it is very unfair for a child to live such a gloomy life. I have seen first hand how family life is completely determined by the fluctuating symptoms of a patient, and how the opportunities of a child are dramatically reduced: Friends cannot be invited, no noise, no attendance to school activities, very quickly children become their parents' carer, everything turns into utilitarism, nothing is just fun. And childhood is about having fun and doing things for no reason. It is part of a child's development.

I also know someone who fell ill after having her children. She said had she had known, she would not have had children. The couple's quality of life would have been substantially increased.

This is just my opinion of course.

 

[caledonia]

I read up on Behcet's a little. It's possible that Behcet's may be another methylation based disease (there are about 30 of them, including ME/CFS). So whether you have ME/CFS or Behcet's or both, the same treatment would be appropriate for both. The same treatment would also prepare you for conceiving.

My suggestion would be to view the Methylation Made Easy videos linked in my signature below first, so you get an idea of what methylation is, and why it might apply to your situation.

Then I have a link to find practitioners in my signature below. Several of the doctors on the MTHFRsupport list, although they're based in the USA, will work with patients internationally via phone or Skype.

The doctor would likely want you to do a 23andme gene test and then a Nutreval test to see what's going on functionally. You can determine if you indeed have methylation issues via these two tests, and then what treatment would be appropriate to follow. I have two guides for interpreting them in my signature links below.

 

[Lisons]

My wife and me decided to get fixed

 

[Revel]

I have been suffering with this illness since childhood. I made the decision not to become a mother during a very long and distressing stay in hospital at the age of 9.

I revisited my decision in my thirties. Fearing the possibility of a genetic component to this illness, and knowing what I had already been through, I did not change my mind.

Now, at 49, there are still nights when I weep for the family I never had. However, for me to have brought a child into the world, in full knowledge of my circumstances, would have been an incredibly selfish thing to do.

I would not wish them to be burdened with my care, or have to worry about finances, or feel unsupported when I couldn't leave the house to attend events that were important to them. The guilt would have been unbearable.