Having trouble managing my cfs and my family any tips are appreciated

I was just asking my chiropractor if some of my issues could be amplified by some issues I have. I am no stranger to health issues ( severe anemia, h. pylori, pituitary tumor, ADD just to name a few) and I know sometimes they can snow ball. For example I have been anemic my whole life pretty much ( no joke docs always would say something was very wrong but when they couldn't find an answer they would just act like it was normal) when I went through puberty (early due to tumor) it became severe although not severe enough for doctors to stop acting like that. almost 3 years ago (keep in mind I'm 35) my doctor now went that's really odd we are going to test for H pylori. Not my favorite test but sure enough I had it. I had been pretty much bed ridden and all the sudden I could get up and didn't feel like I was dead. Haven't been anemic since. I know that was a long story I just wanted to tell it because its something I feel every person with cfs should be tested for. 50 percent of population has it but it only affects those harshly that have issues. Anyway back to my original though I actual have something called spina bifida occulta. Almost in every case it's nothing but in a few cases it can cause extra pain. I also injured my back when I was pregnant with my daughter (she was a gymnast) and ended up falling and twisting my spine two diffrent ways. That was 6 years ago and I just found a good chiropractor that's helping me. He tells me the spina bifida shouldn't affect it but I'm not as convinced. I just know when you push stuff with doctors they can stop listening. I will have to look into your therapies. cost can be an issue. the kids have health issues and the copays tend to add up. But thank you for listening and giving advice.

Thank you for your advice. It helps just having someone even if it's a stranger understand. we actually have most the house baby proofed it's just the toddler is big ( 19 months in size 5 diapers and 3 T clothes) and although he may only know 4 words pretty sure he makes up for it by being a smart little Turkey when it comes to said baby proofing. He even figured out one of those things you put on door knobs and we can't figure out how he is doing it lol. I have gotten stuck in his room from that. what I need for him is a padded room 🤣. My husband, 16 year old, and 6 year old daughter help me with him it's just when people are at school and work it's hard. I have totally lowered my standards of cleanliness which is big. I have a bit of OCD and hate germs but as I got worse I just had to except cluttered counters, laundry baskets everywhere, and dishes on counter top aren't the end of the world as long as things are germy dirty or dangerous stuff isn't laying out. My husband does understand I'm sick and most days he hugs me and helps. it's just when he gets overwhelmed he is not understanding and says hurtful stuff. He is having trouble understanding how this is all the time and its frustrating to him if he were to ask me something simple like hey honey can you stand up and get a diaper and I have to say no. I get it although this is happening to me the most it's also happening to him. He is definitely having trouble letting go of his cleanliness standards. Everyday he has off he trys to clean the whole house which is seriously impossible. Even if I were a healthy stay at home mom that would be impossible. I'm getting the kids to help more but that can be a challenge because I have to follow and nag and the stress makes me ill. I explain yes there are no dishes but you can wash them as you go if you have other more important things to do that day such as homework. And its really important he plays with kids instead of wasting all his time cleaning. They would be ok if they had one of us. He also is upset about this diagnosis because since I accepted it he feels I should be search for an answer which I did but after days of finding nothing but people saying I just needed to accept and change my way of life I decided denying it was probably making me worse. I will still be trying things and looking I just don't think getting my hoped up is healthy. For me it's almost like someone died and I had to grieve and he just doesn't want to accept that person died and grieve with me so we can move on. I am trying to find articles to have him read them but he is seriously hesitant. do you have a suggestion on how to get him to read it or which one to read? I'm not sure if he doesn't read it because hes annoyed at how I keep looking things up, denial, or if he is seriously just has that short of attention span ( he has add to)

I'm relieved to hear that your husband is supportive for the most part. I totally understand it's hard on both of you!

Sounds like your toddler needs a room with minimal furniture and tons of entertainment to keep him occupied! He sounds like such a bright boy!

As for suggestions on where to find info for your husband to read, let me look into this and get back to you. It might take me a while as I've been quite swamped. But I was thinking maybe finding videos would help. It's much easier to sit through a short video than read a whole article.

Hi Amy,

Sorry for such a late reply. I poked around Youtube to find a good video, and hopefully you'll find this one helpful. I like it because it is pretty engaging and interviews actual CFS sufferers and shows their daily struggles. (though the focus is on a health policy in Australia which is probably irrelevant to you). It's called "Fighting Disbelief".

Best wishes!

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Thank you I will have to try it with my husband. I am lucky enough to have a good primary that listens. I had a run in with a neurologist when I was pregnant with my last boy that after receiving all my test results from some pretty invasive tests had the nerve to suggest they put me in a rehab facility where they could have me do certain activities while they monitored me and have me hooked up to machines so they could show me nothing is wrong with me. and proceeded to tell me depression hurts. Yeah I know I have felt with it in the past at this point I wasn't depressed. I was sick or being sick, sad, frustrated, and p****d off but no I was not depressed. Cried so hard when I went to my primary because I was positive she was going to take that hacks advice seriously because thsts how it usually went in past experiences. My doctor just looked at me and said she wants you to do what? This is the craziest thing I have ever heard is she actually a doctor? Made me feel a thousand times better. My doctor and her husband (my kids pediatrician)are the only ones who truly get the full scope of what I'm dealing with. somedays I wish they could adopt me 🥰

Thank you for your advice. It's nice to know you have a good relationship with your kids my biggest fear is they will grow to resent me. I'm sorry your ex is like that. And you are seriously one tough mommy to be doing this on your own. sounds like you raised a very close and caring bunch I hope to do the same. I have been including the kids more in chores around the house daily which hasn't gone over the best. I had to finally sit them all down and explain that I was sick and needed their help to make them understand it wasn't a punishment. One of the hardest days of my life I usually prefer to not let them know of our struggles. My husband is understanding most days but he is having difficulties grasping the seriousness of our situation. Since he is 34 and it does affect his life as well I think it's hard to accept the fact that we have to stop living like we are younger and start living as an older couple. Easy for me because I feel it hard for him because he doesn't. He has started going places without me and taking the kids so I rest but I will admit it has been hard for me to come to terms with this since I love watching my kids at the zoo, the park. and other things. most of the time I cry from the guilt of not getting to watch them grow especially the toddler. I do try and get my 9 year old to help but he is my most difficult. see he doesn't just have Adhd he also has sensory processing disorder. He also has something wrong with him health wise that for years the doctors haven't been able to pin down. when he was 3 he had a concussion from a fall. One concussion turned into 2 and when he got his third the doctors were like how is this kid so clumsy. Turns out he needed glasses, the sensory disorder lead to him doing a lot of spinning, but then we noticed he also had low muscle tone in his right leg and his right eye droops when he is tired. he also had to have dental surgery young because of an enamel deficiency which was odd and they learned he is missing an adult tooth also odd I guess. As he got older we noticed his emotional state was closer to his sisters age so we held him back in school thinking he wasn't ready. Even though we held him back he is 9 going into 3rd grade and is the size of his sister who is 6. we realized he fatigues faster then kids his age and will stop even activities he enjoys because he becomes unwell. Although it's gotten better he was having number 2 accidents all the time. Now its occasionally (hes 9) and his expression is shocked and he always says he couldn't feel it. recently on our trip to the geneticist instead of answers they pointed out more serious issues. he has a testi that didn't descend which had to be fix with surgery asap. Then the endocrinologist (which is now seeing my 16 year old also and they swear that our issues are not related what are the freaking odds ) said a normal puberty level for a 9 year old is 81 to 225 and my 9 year old is an 85 which is in the level but super low. and his bone growth is that of a 7 year old ( the 16 year old had to have same test and had advanced bone growth of 18,) meaning something is affecting his growth but they don't know what. Essentially with everything going on it's like dealing with a younger child with a shorter fuse and very little attention span. When it comes to education he is actually really smart though. he is actually advanced in math and adores learning. It just makes social situations hard and requires a lot of energy from me because I have to try to help him function outside the house and remind people often that although it is important to treat him his age that we need to remember he doesn't have as much control as he should and we need to be patient and sometimes approach a situation differently then we normally would. It's a lot really it is. I think when the kids grow up I might get better. I always joke and tell my husband the kids are sucking the life out of me but it might not be a joke.

Hi Amy,

I know it is difficult to have a child with additional needs and I have to advocate for my daughter too. She also has the sensory issues and it makes things harder, so many more meetings with school etc

You have certainly been through the mill ! I hope things start to settle soon for your 9 year old. It sounds like you have so much on and are doing a good job with what you have got! I have felt that guilt of not being a good mum because I need help from them too.

It is hard knowing that you can't go and watch the kids sometimes but, try to think of it as you getting some rest so you can do other things with them.

It can feel overwhelming at times and the house will feel a mess but, see it as temporary. I wish your extended family could be more helpful! I at least had my mum to help by babysitting a bit until she passed away 2 years ago. It wasn't too often but it helped.

Remember you are doing the best you can given very hard circumstances and seem to be doing a good job with that. Having cfs/me is bad enough. Having cfs/me and kids more so and having cfs/me and kids with additional needs-is extreme! You are juggling a lot and hats off to you for doing so well.

I am glad you have a good doctor who sounds really understanding of the difficulties you face. I think that can be a major part of the battle. like you I have seen a variety of specialists who often are just plain ignorant to what I am having to face so I completely get how frustrating it must have been for you to have someone say you were depressed and there's nothing wrong with you. It seems the "go to" diagnosis when they can't see a physical problem.

Beverley