I was curious to know how many of you here are parents to young children and how your condition affects this? Are any of you lone parents? I am a lone parent now, not through my choosing, and my little one is 3. He is exceptionally active and just so full of beans from morning through to night. I'm a stay at home mum although he goes to pre school a few hours a week. As time has gone on I feel increasingly disabled by my full body sfn and another rheumatic condition I have. I felt a pretty healthy, fit, lively young woman before pregnancy and it all changed after.
I find that I have to fight really hard to maintain an upbeat, positive persona for my son. I try so so hard to keep smiling and playful and push through the disablement and pain to take him out nice places and play in the house. It is so hard I do not know how I get through each day without breaking down. My bigger worry is my emotional health as a result of what's happening and how to make sure I keep on top of the depression that now accompanies this. I really don't sit around moping around him but I am very sad and afraid inside, particularly as I'm alone looking after him and I worry about the future.
I really worry that he will feel all this within me and it will mess him up. I try so hard to contain my emotion but the truth is that I am not jumping for joy most days as I am severely fatigued, in pain and grieving alot of losses. I am still very playful and loving and engage with him all the time but some days I just struggle to push through the day.
Are any of you in a similar predicament with small children and the condition seriously impacting you either physically, emotionally or both?

I am planning on responding but I am trying to corral my four year okd before tackling last minute Christmas shopping. I'll be back later to share some thoughts, though.

I hope today is getting easier!

I have a 9 and 11 year old. They force me to be more active than I would probably be with this awful disease. So, it is a blessing. It isn't easy. Many times my son wants to throw the football in the backyard in 30 degree weather. Ice cold neuropathy riddled hands whipping a pigskin around isn't pleasant. but, its worth it. I refuse to give up on those moments and have my son grow up thinking my Dad never did anything with me, he was always sick. I will admit that I cant stay out with him for the amount of time i used to, I always have a limit on it. But it is the best i can do. :-(

They are aware of what i have and I try to use it as a tool for them to treat sick people with caring.

My ten year old daughter helps more around the house, is understanding about my limitations and is grateful when I push myself. I study for tests with her, we play Disney Infinity together and spend time together just chatting.

I also beat her to bed at times, but since I adjusted to a less stressful position and I do that less.

My four year old boy, well it is a challenge. He understands I am not well, but doesn't at the same time. My wife and I are working with him daily. I often wonder if his acting out is in part in response to my infirmity.

In the beginning of my symptoms I was just running to adjust everything I could in my diet, move more, take supplements, and so on. I am years on in, progression has laid claim to ground that was once only flare territory. This year started tough, remaind that way, grew worse and mellowed.

These last few weeks are ratcheting up, but I have a pretty good system in place. I still walk to work from my parking, but moved closer. I make sure I am involved in my 4 year olds bedtime every other night and expend energy as wisely as possible.

Everytime that fails I dust myself off, try to learn from my misstep and recommit. Neuropathy symptoms limit many things, but I believe I can find the best level of activity most days.

Though somehow taking an event like a movie at the end of the day was taxing. It took me two days to get back to a baseline of sorts.

My child is grown so I wasn't going to respond, but I had to tell you how in awe I am of all of you who are trying to raise young children with this condition. Raising children when you are in top shape is difficult enough.

The only words I can offer is to remember that your children love you and are usually more understanding than you realize. My son and I made it through a divorce, home, job and life style change. I found loving each other and communicating was the best things we could do. (Btw he was 5 years old at the time.)

For any Dexter fans out there, I have been referring to my condition as my "dark passenger." I am not an easily controlled and subjugated person, but sometimes it does rear it's ugly head and demand attention.

They are aware of what i have and I try to use it as a tool for them to treat sick people with caring.[/QUOTE]

Thankyou Patrick and Knownothingjohn. It's just a comfort to hear I'm not the only one - although I don't wish hardship on any of you. You are right in that kids will force you to be more active than you may be otherwise. So true that I would not be out and moving as much were it not for my son. We are having a really mild winter here at the moment and I am so so grateful!
Today was a great day, lots of playing, having fun and seeming like any other healthy mum. I feel I make up for the bad days with all I do. I always try and notice that when I really can't do something one day I will suggest something else can manage. We usually get there in the end. I just fear he will resent me so much as he grows if things continue to worsen and further limit what I can do.
I just hope with all I am doing he will grow to understand and be OK with what I can't do. Luckily for him he sees his dad often and he always does very active things with him.
Thankyou all very much :-)

Joanna, and everyone,

We raised our kids after I was severely disabled when the youngest was just 3, when she reached 14 it was just the 2 of us after her mother left.

All 3 were fully aware of my physical limitations and the amount of meds I have to pump into myself to keep going. None of them know of the Depression, Anxiety or specific details of everything that is wrong with me, even to this day - it is not their place to worry about that.

All have grown up reasonably well-balanced and harbour no resentment about anything they might have missed in their childhood.

Now, I have my eldest daughter and (nearly) 3 year old Grandson living with me. I am finding it difficult with him, he is too young at the moment to understand I am unable to play when others can. My conditions, physical and mental, have worsened over the years and I do have concerns that he will be affected by them despite the previous Generation being unaffected.

I think you are all doing the best you possibly can in very difficult circumstances. Try not to worry about the resilience of your children, just make as many good memories as possible.

Dave.

Joanna, and everyone,

We raised our kids after I was severely disabled when the youngest was just 3, when she reached 14 it was just the 2 of us after her mother left.

All 3 were fully aware of my physical limitations and the amount of meds I have to pump into myself to keep going. None of them know of the Depression, Anxiety or specific details of everything that is wrong with me, even to this day - it is not their place to worry about that.

All have grown up reasonably well-balanced and harbour no resentment about anything they might have missed in their childhood.

Now, I have my eldest daughter and (nearly) 3 year old Grandson living with me. I am finding it difficult with him, he is too young at the moment to understand I am unable to play when others can. My conditions, physical and mental, have worsened over the years and I do have concerns that he will be affected by them despite the previous Generation being unaffected.

I think you are all doing the best you possibly can in very difficult circumstances. Try not to worry about the resilience of your children, just make as many good memories as possible.

Dave.