My son (7 years old) has been sick since birth, and I've been caring for him all along, while sick myself. We've only recently found out that we both have Lyme. I now know how important it is to take care of myself, too.
I'm finding it very hard to do this because most of my energy goes to caring for my sick child. I spend much of my time talking with doctors, taking him to doctors appointments, organizing his meds and supplements, researching his symptoms, and preparing his food. And he wakes up frequently in the night, so I get very little rest.
How can I get better if I have very little time to rest or care for myself? How do other sick parents handle this?
I'd love to hear from other parents--if nothing else, to know I'm not alone.
Thanks.
Posted by phyl6648 (Member # 28522) on :
I would love some answers as I am trying to care for greatgran daughter.. but it is getting so hard.
Posted by 4Seasons (Member # 14601) on :
Well, you are definitely not alone, but I wish I had some good advice for you.
My daughter was also infected at birth, but only had minor problems until age 12, then severely ill for 2 1/2 years. I was sick myself and had to care for her around the clock. We both got diagnosed at the same time.
I know what you are going through. It is the worst thing in the world to watch your child suffer. And how can you not help them when they need you?
I did what treatment I could while she was so sick, but my adrenals really suffered because I couldn't get enough rest.
Do you have a husband or partner who can give you breaks to rest?
Thankfully, my daughter is now well and I can spend the time I need to get myself well. It is ironic to me that while she was so deathly ill, it is her that is well and I am sicker than I was before - due to adrenal fatigue (and mold exposure).
She is now 16 and I'm so happy she is well. Keep taking good care of your little one and know that you aren't alone. Like they tell people with babies - when the baby is resting, lay down and rest/nap yourself.
You'll be in my thoughts. Take good care.
Posted by Geneal (Member # 10375) on :
I had two young children diagnosed with Lyme while I was so very ill too.
I just focused on them.
I guess I decided that this may be my lifetime problem.
I certainly didn't want them to suffer like I was.
This was thier chance to get well.
When I focused on them, it made my aches and pains more bearable.
I also gave up my suffering for those suffering more.
They were finished with treatment after about 1.5 years.
Mine were diagnosed very young. Four years old and three years old.
Maybe that is why they kicked it faster.
My husband had Lyme too so he was no help (not that he is much anyways).
You would swear I treated and cared for 3 children if you counted my husband.
I rested when I could (my children never napped).
I struggled through Walmart holding onto the cart just to make it through.
Tough enough with two children, but feeling like I was going to pass out any second....sheesh!
I prayed like I pray now....all day long.
By sheer will power and the inability to give in because of my children,
We made it through. I've been in remission 3 times now.
I had two subsequent tick bites that required treatment, thus the extra two remissions.
I did the best I could. Some days better than others.
Sending you prayers of healing and support for yourself and your family.
It probably took longer for me to get well because of my situation,
But a cost I deem worth it.
Hugs,
Geneal
Posted by apljack (Member # 14233) on :
What a struggle this all is. You're definitely not alone. There are too many folks who are dealing with this, some don't even have the diagnosis, so you're one step ahead of the crowd.
You have the strength and you will continue to take care of your child and yourself. Don't lose sight. This will all just be a memory to look back on.
Hugs.
Posted by Lymetoo (Member # 743) on :
I think there are lots of parents in the same boat here.. they just haven't found your thread yet!
Hang in there.. with the right dr you can BOTH get well!
Posted by momlyme (Member # 27775) on :
I find the hardest part for me is taking the time to take care of myself. My son is very sick. Much sicker than I am right now. He is where I was 17 years ago... before I found something that helped my pain.
I have been dealing with this for 17+ years. I had accepted the pain as part of life, found an antioxidant that lessens the pain and continued on, never realizing that I could do something about the underlying cause.
Since I found out that his illness most likely came from me and my untreated illness... I have been self treating with herbs. I finally got myself an appointment with an LLMD and will have some medical guidance and testing.
Take time for yourself.
Give freely to your son.
Find the best LLMDs you can afford for BOTH of you!
I tend to organize my supplements at the same time as I do my son's.
I eat the same gluten free, sugar free, dairy free, mostly organic diet as he does.
What makes this difficult is that my hubby and DD don't want to eat what we are eating... so I have to make 2 meals. Sometimes I tell them to take care of themselves.
Know your limits. Do you have someone you can ask for help if you need it?
Posted by klt9751 (Member # 28656) on :
Thanks, everyone, for your helpful words and advice. My husband does help out as much as he can, but he's the working parent so I've always taken care of our son, the medical stuff, and the house.
I do know my limits, but I tend to push through them b/c my son needs so much of my attention right now. We've got appointments in a few weeks with some LLMD's out east (Dr. J for my son and Dr. M for me). I'm hoping they can help with some of the symptoms. My son has a lot of anxiety, worse since we started treatment last month. So I'm always trying to sort through what's a real medical problem and what is just his anxiety making him think he's got something wrong. I know it sounds strange, but trying to manage his anxiety really drains me.
Thanks again for all of your replies. I just read them and then read them again, which makes me feel better.
Kelly
Posted by 4Seasons (Member # 14601) on :
Kelly,
My daughter had a lot of anxiety too, and that was sooo hard to manage. I think in her case it was the Bartonella, which has been the hardest coinfection for her to kick. Of course it would drain you to try and manage it - it's really hard!
We ended up relying on a number of psychotropic drugs at various times ( antidepressants, seroquel, lyrica, valium, etc.). No one wants to give those to their child, but they really did help. (We did phone consults with a Lyme Literate Psychiatrist). They also really helped her to sleep.
When she was better, I slowly weaned her off of all the meds without any problem.
Take good care, Kelly.
Posted by ktkdommer (Member # 29020) on :
Ladies: You are extroardinary women!! I don't know how anyone does it. I always say that no one asked me if I was strong enough for all of this and nobody asked if I was ready. Every day is a balancing act- what to tackle, what can wait, who to prioritize etc... I look back to a year ago and don't know how I kept sane. I think it is day by day and belief that it will get better. I know that so many have it worse than my family. My sister will start the heartache of caring for herself and her newly diagnosed 5 year old. I think of all the moms out there every day. I wish there was a free spa we could all meet at! Take care,
Posted by sometimesdilly (Member # 9982) on :
Kelly-
My 8 1/2 year old son was born with Lyme, babesia, and bart, diseases we shared after I was infected at 5 months pregnant and provided with IDSA -level treatment.
My son was in treatment from age 4 to age 7 1/2 years. It was a rough road, since I was (and still am) very sick.
One of the most difficult parts for us was not knowing what was "normal" behavior vs. Lyme-related. Since he was born sick, there was no way of knowing what "normal" was for him. That is a VERY VERY stressful situation, lived daily, and one that can seem like it has no end.
Equally stressful and even worse-feeling is wanting to be the best possible mom and simply not being able to. Even healthy moms often feel like they are failing their kids in one way or another. Since we are all merely human, I'm sure that's probably true.
It helps a great deal to be realistic with yourself about what your limits are, and to forgive yourself for them.
Your first priority is your child, of course, but only up to the point in any given day where taking care of your child takes so much out of you that you are less capable of taking care of your child the next day.
In practical terms, an example: you've reached your breaking point of exhaustion and your child is asking for attention. Even though you feel terrible about not being able to oblige, you need to take whatever amount of time you can for yourself to rest, even its 15 minutes and all you can do is sit in a chair with your eyes closed.
The good news, and it really is something to try to hold onto, is that children really do get better if they are fortunate enough to get adequate treatment, and it sounds like you have that.
And, before that endpoint of treatment, you'll see enough progress to help keep you going, and enough progress to learn what is normal for your child and what is Lyme-related.
One last thought. We learned the hard way that food intolerances played a major role in delaying my son's progress. In fact, in retrospect it is clear that some of the symptoms we attributed to Lyme were in fact related to his body's inability to tolerate gluten or casein (all thing dairy).
I highly recommend that consider probiotics as indispensable as you do meds, and that you speak to your child's doc about the possibility of food-related problems. (PS- red ears are a gigantic clue!!!)
