We all know what the pain of this diease does to us mentally and physically, so I wont go into all that. I have a six year old and a three year old and I hate the way this disease effects them and my abiltiy to take care of them the way I want to. I despise it and I am having a hard time "accepting" my disease because it is so hard to take care of young children with this disease when you spend large a lot of your day laying on bed with a heating pad because of back/neck/hip/knee, etc etc pain. Just wondering if there are any more of you with young children. I love my kids, do the best to be positive, and in a way I think they actually make me fight harder, but I would love to meet and talk to others with little kids (or who had little kids during their disease) who are experiencing the same thing.
My kids are 6 and almost 11 now, but I started having trouble when my little one was not even a year old. I'm there with you. We've always read lots, and for a long time we napped together every day. It's a little bit easier now that he's in school half days, and next year will be easier still, as they'll both be in school full days.
I feel bad though when my little one talks about how mommy isn't well.
I can relate. I had such a bad flare after my first (I was dx at age 10, so had PsA long before) that I could barely get out of bed, it was pretty bad. Same after my 2nd. Then Enbrel came out and it put me in remission (the remission lasted 2 yrs, so I struggled after that again, still am). Still, those years prior to Enbrel were pretty hard. We did A LOT of reading in bed, A LOT of educational TV with the TV in the bedroom, A LOT of toys played with on the blankets. I took narcotics to help with the worst of the pain (one time I ended up in the ER on Christmas because I was in so much pain and flare my whole body was shaking, my teeth were chattering, the whole bit).
We had no family to help, no sitters, my oldest is on the autistic spectrum, and it was really hard. My kids are now 12 and 15, and my kids are compassionate, yet never feel like they are responsible for caring for me. Just helpful and kind like they would be to anyone else. It's a day by day challenge, and it DOES get easier once there are less physical demands as the kids grow up and can do more things by themselves.
Keep on with the med merry-go-round until you find a combo that helps. It is well worth risking the long term side effects to be able to be present with your children now.
I have a seven year old son and a nine day old daughter. On days where my feet and hands are too bad to be active, my son is very helpful and understanding. Before I started having trouble I was working 70-90 hours a week. Now I'm home a whole lot more (left my job, started a business part time). So in his eyes it's an improvement, even if some days are just cuddle on the couch and read days. My kids are the reason I was willing to get on Humira and once it started working I was able to do so much more with my son (the baby wasn't around yet). Your children know you love them and that is what really matters. My son doesn't get upset when we have to stop playing catch and have to go inside to play chess instead. Focus on what you can do, not what you can't. Don't be afraid to ask for help when you need it, even from your children. Do what you can and try not to worry about the rest.
My daughter is 9. I am just months into my PSA. She is worried about me, says my mother (her grandmother) and told her she was afraid to sit near me because she would hurt me. That breaks my heart.
That said, I used to travel for work (2 wks a month). Not anymore. She was so excited when she heard that!
We spend lot of time curled up in my heated throw on the recliner. We read, play video games (I watch...no finger dexterity these days), and talk. She helps to get things for me.
Would I prefer to be 100% healthy and raise my daughter? Yes. But I think this journey is one that will strengthen her and our relationship. As an only child it's easy to coddle her. She's learning to be more independent and to compromise (sorry, mommy can't have the TV that loud when I'm hurting). Life lessons that will make her more compassionate and tolerant.
I’m also a mom of young kids- 2 1/2 and 9mos- quite young! I’ve been lucky that my disease has been in remission and only now starting to have a real impact on the way I parent, so i can’t fully relate yet. I find that I lose patience with my 2 year old because I’m so tired. my pain is manageable and i have found modified ways of doing things like dealing with snaps (i don’t know why are there has to be so many snaps on baby clothes!!). I’m scared what the future holds but trying to be as active as possible with them when I have the energy.
I have a toddler, a preteen and a teenager. My symptoms became worse after my last baby. My hands were covered in psoriasis to where I could not even give my baby a bath…or myself for that matter. I spent his first three years thinking that I just couldn’t recover from having a baby in my 40’s. I pushed my self to exhaustion mentally and physically until I couldn’t function trying to be a “perfect mom”. The joint pain and fatigue would not allow me to mother my little guy as I had done for my other two. My family doc told me that it was my "lack of conditioning " lol cause I had gained extra pregnancy lbs. I feel guilty not being able to chase him or play hide n seek for hours but he does enjoy going for car rides and I enjoy the heat from my car seat. I also worry about too much TV for my kids but somedays it’s the better option than a tired and sad mommy. At the end of the day…the most important thing is that I am there for my kids and that I love them.
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”
― Martin Luther King, Jr.
I loved hearing all the replies and finding out what everybody else is doing. The most positive part of all this is that at least our children will be strong and compassionate people who respect different people.
Hi June,
I have a 9 (girl), 8 (boy) and a 4 (boy) years old. I'm the only income earner and the only driver in my family makes it tough all the time. I considered myself as a Mule of the family because I was always the one who had to carry the load. Litterally, when we went on picnics I would be loaded down with all the chairs, coolers, etc... Once I was crippled all that had to stop but it was really hard for my family to pick up the slack. A lot was and still is left undone because there's no one to do it. I'm starting to feel alot better and not as much in pain so I'm starting to get back to doing everything but I know that will have to stop.
To top it all off my 8 year old son has ADHD and is a real handful everyday. His condition makes it tough for me to relax and be stress free.
I have a 5 year old and an 8 month old. When I am tired I get frustrated easily with the 5 year old so I have to stop and take a breath before I deal with him. He doesn't fully comprehend the illness yet so I have to be sure I don't let the pain or faigue change the way I treat him. My biggest heartbreak with the illness is not being able to hold my youngest son and walk around with him. The tendonitis in my elbows and the pain in my hands and feet make it impossible most days. I sit and play with him in my lap a lot but my wife scolds me for not being more active with him. I'm not sure she fully comprehends the effect PsA has on a person yet. I try to get her to read post on here but she says she already knows about it and refuses. Maybe one day the shoe will be on the other foot. : )
I know what you're saying. When my little boy was a toddler, he would take my hand and I would cringe in pain. If your back and shoulders are okay, would you try babywearing with your little one? It makes it a lot easier to carry the little guy around, with much less strain on the small joints.
johnny reb said:
I have a 5 year old and an 8 month old. When I am tired I get frustrated easily with the 5 year old so I have to stop and take a breath before I deal with him. He doesn't fully comprehend the illness yet so I have to be sure I don't let the pain or faigue change the way I treat him. My biggest heartbreak with the illness is not being able to hold my youngest son and walk around with him. The tendonitis in my elbows and the pain in my hands and feet make it impossible most days. I sit and play with him in my lap a lot but my wife scolds me for not being more active with him. I'm not sure she fully comprehends the effect PsA has on a person yet. I try to get her to read post on here but she says she already knows about it and refuses. Maybe one day the shoe will be on the other foot. : )
I completely understand what you are saying. I'm a single mom of 3, though my youngest is 13 (and has ADHD). He definitely pushes me over the edge sometimes. My kids have started to pick up the slack now ONLY after I yell at them. I am feeling better these days and have been more active so i can do more. I have been taking bubble baths to escape from the stress. Other times, I put in my head phones and listen to music. I meditate. I am trying so many different ways to release stress. Often, I would just go to the river and watch the waves or sit at the zoo and watch the animals.
JacksonJ said:
Hi June,
I have a 9 (girl), 8 (boy) and a 4 (boy) years old. I'm the only income earner and the only driver in my family makes it tough all the time. I considered myself as a Mule of the family because I was always the one who had to carry the load. Litterally, when we went on picnics I would be loaded down with all the chairs, coolers, etc... Once I was crippled all that had to stop but it was really hard for my family to pick up the slack. A lot was and still is left undone because there's no one to do it. I'm starting to feel alot better and not as much in pain so I'm starting to get back to doing everything but I know that will have to stop.
To top it all off my 8 year old son has ADHD and is a real handful everyday. His condition makes it tough for me to relax and be stress free.
I have three kids, 12,5, and 5 months. I am having a hard time with my baby. Some days I can barely pick her up. My older kids help out some, but I am definitely feeling the frustration of not being able to do the things I would like to with my kids.
This is how I manage the baby when my hands are messed up.
667-IMG_20130319_161902_981.jpg (1.06 MB)
Good plan Bumble. I spent A LOT of time (as did my husband) carrying the kids in a sling (which one of the them preferred) and a Baby Bjorn (which the 2nd child preferred).
Bumble, I can only do the sling for a short time. I have Psoriatic Spondylosis and degenerative disc disease in the neck. Sitting or laying on the bed is about all I can do comfortably. Thanks anyway!
I haven't been on here in awhile and just saw this picture. The sling is great...but never worked for me because my primary issue is my lower back and neck....but great that you have found a way.
bumble said:
This is how I manage the baby when my hands are messed up.
Juggling PsA and little ones is definitely a challenge and takes a lot of creativity.
The first thing I recommend is lowering your expectations. We all want to be supermom, and that's just not possible for anyone.
I have five kids, who are now ages 14 (with Aspergers) , 12, 10 (with joint issues), 7 (possible Aspie), and 5 (incredibly precocious and a bit scary) and I take care of any number of other kids, ages 6 months to 6 years old. We also homeschool, so the kids are home with me all day.
Here are some things that I've found help a lot:
- using a sling or ergo/babyhawk/mei tai with the little ones - I have spondy in my neck/back/sacroiliac joints and for me it was simply finding out which carriers work for me. I'm blessed to have friends who are babywearing experts. Here's a photo of me with a baby in a Maya Wrap (old school) on my front and a one year old in a custom made mei tai on my back:
- setting up craft and activity bags ahead of time ... I take paper bags and put paper, crayons and stickers or model magic and cookie cutters or craft foam shapes and a little spray bottle of water in them (the foam sticks to windows when wet, so kids can make little scenes with different foam shapes). Then, when the kids need an activity and I'm not up to participating, they can get a bag and have at it
- setting up snack bags ahead of time: put pre-packaged snacks in bags and put the bags in a big bowl that's relatively easily accessible to the kids along with fresh fruit - when they want a snack, they can get it themselves ... you can also put together containers of mango slices or veggies and dip or whatever in the fridge.
- having books, balls, puppets, cars, and puzzles easily accessible from where I'm lounging: These are all toys that you can play with with minimal energy
- setting up a safe play area outside - somewhere you can let the kids play while you lounge
- making sure I'm drinking enough water, eating healthy snacks, and moving enough throughout the day
One thing that made a huge difference for me is having my bed in my living room. Our queen size bed is an oversized couch by day and bed by night - we just put a comforter and LOTS of pillows on the bed during the day (and a large cushion along the wall to lean against) and I can sit or lay down as needed and still be in the midst of all the action in the house. I also have the littles I babysit nap there.
We also have quiet hour in our house every day. The kids can rest, nap, read, or do some sort of QUIET activity in their rooms and must leave me alone for a full hour so I can rest. This is also naptime when I'm babysitting.
Great tips Nym! And fantastic picture of babywearing. My kids are far apart in age, so I never did two at once.
Love the babywearing! It can feel tough sometimes, but knowing me, if I wasn't worrying about the effect PSA was having on my child I'd probably be worrying about something else I was doing 'wrong.' Trying to go with it now and just enjoy the good times. xx