I understand this issue because I was diagnosed with Systemic Lupus 5 months before I got pregnant with my soon-to-be 16 year old daughter, Shelby. A year later I had Rheumatoid Arthritis as well...then Fibromyalgia. Oh, I had a stroke some where in between but who is counting the coumadin tablets!
I was still married then, but my husband was traveling a minimum of 3 days a week which meant I was a de facto single parent. Everyone has to deal with parenting when you are sick with a cold or the flu. But usually within a week you are back to 100% and everything in your home is going swimmingly. However, when you have an illness that flares more than it doesn't you have to find new ways to parent because rarely is anyone willing to help you all the time.
Here are a few tricks that I have used myself, and suggested to my patients.
1. THINK OUTSIDE OF THE BOX
When Shelby was a newborn it was a very difficult time for me. My husband was gone 5 days a week, I was in constant pain so I had to get creative. My pain was worse at night and I was breast feeding and it was impossible to wake up, pick her up from her crib, nurse and change her, then put her back. So I did something that many of you will probably be horrified with.
I put her in the bed with me (awaiting gasps of horror). Yes, I knew the risks. But I had a king size bed so I would nurse her before bed, the put her down between two pillows (yes, there was room for her not to smother). Then I put the Diaper Genie by my side of the bed (do they even make those any more?) put diapers, wipes, etc on the end of the bed . When she woke up I could just move one pillow and slide her up on my chest, nurse one side. Burp. Put her between my legs and change her, then nurse on the other side. She would fall asleep and I would slide her back between the pillows.
Now, those of you that are very anti "family bed" may be running from your computer (Or scampering for the comment button). Before you go postal, please understand I was so sick and in pain this was the only way to do it alone. Also, because I was breast feeding I couldn't take any biologics and I felt that at that time, breast feeding her was more important that taking care of me. My Rheumy let me do that for about 9 months...then I got too sick and it was out of my hands!
If your kiddoes are a bit older you need to figure out how many things you can do with them while you lie in bed on a heating pad (or on a lot of pain medication). Drawing with crayons, watching videos, playing board games are all things you can do when you need to rest but they need attention. Computer games are great if you have a laptop. When they are a bit older and needing homework help, you can do this from the bed too. Consider buying one of those bed tables so your child can write on a firm surface and not get crayon or marker on your comforter.
There are also computer stands that look like Hospital Bedside Tables. They are on wheels and slide over your bed (it will work for you too!).
Communication is difficult when you don't feel well. And if you have little kids under foot they can take your crankiness as a sign that you don't love them, not that you are in a lot of pain. One quick and easy suggestion is to buy some construction paper - get 3 colours: Red, Yellow and Green. Cut the red paper to look like a stop sign. Yellow can be a circle and green a tall rectangle.
Run string or ribbon through a hole in the top of each sign so you can hang one on your door nob.
Red means - STOP! I'm in a lot of pain and need to sleep. Yellow means : caution, I am hurting and may be a bit cranky so understand it's NOT YOU! And Green of course means, "I would LOVE company. Come in and play!"
This won't be necessary as they get older. They will start to get the signals when you are not feeling well.
This is a tricky age even when you are healthy. They are starting to pull inward, and they start getting embarrassed if mom or dad "looks or acts different." If you have been sick their entire lives this will not be as big of a deal. But if you get sick when they are teens it can effect them in different ways.
At this age they are starting to be mobile - going to dances, dates, overnights. First - get a good calendar to know what is coming up when (I know, many teens/tweens don't know until 15 minutes before). Post your doctors appointments and things going on in your life - this means that on those days the fatigue factor may have kicked in and if they want to go someplace they may need to find a ride.
Technology: this is where you are going to be thrilled your child has a phone with unlimited texting! Make sure you keep in touch - what are they planning and does it work with your body! Also, they can keep you abreast of changes of locations or when they need to get picked up.
Carpool: make sure the other parents of your child's friends understand that you are sick. If you go to bed earlier, offer to take the kids to the event, and have another parent do the return trip.
Events: During High School kids really start participating in after school events and they want you there. If you know you have to attend a play, football game, or Music assembly, try to rest up for the 2 days before. DON'T PUSH IT. Rest as much as you can the day of the event (take a nap). Then take medications before you go (or bring some break through pain meds with a bottle of water in your purse- if your meds make you loopy, make sure you have a designated driver!). If you are outside, make sure you bring blankets (if you get cold) or a pillow, if sitting is painful. Think ahead!
4.GET RID OF THE GUILT
If you are dealing with chronic pain, or are in a wheel chair or using a cane, you may not be able to throw or kick a ball with your kids. I promise, I have never seen a patient in my office because mom or dad refused to throw a ball because they had MS - as long as they did other things with their children! It's QUALITY not QUANTITY. And quality mostly means LISTENING as well as TALKING TO THEM. If you feel terrible, have them come lay down with you and ask about their day. This is great with teens. Have them tell you about who they ate lunch with, what teachers are truly evil, what books are they reading. Have them show you the video games they are playing, ask about Facebook, have them play their iPod for you. You are going to want to tell them how crappy you have been all day, but they don't want to hear it. Not because they don't love you but they just can't fix it. Call YOUR friends and download. Or find a support group (online if you can't drive) to find people to talk to.
Look for websites or people on twitter (or Facebook) that are struggling with chronic illness. ASK FOR ADVICE! A great website is www.butyoudontlooksick.com. The woman that runs it is a mom and has Lupus. She is also on Twitter. Here is a forum on iVillage for chronic illness: http://forums.ivillage.com/t5/Chronic-Health-Conditions/ct-p/iv-ChronicCondz.
Depression happens to all of us, but when you struggle with a chronic illness it comes at you like a freight train. If you are having symptoms of Depression contact a therapist. If you can't drive don't worry, a lot of therapists do Skype Therapy. All you need is a computer with a camera (if you don't have one go to walmart - they are about $20) and then download the free program from Skype. If you don't know a therapist ask your specialist or go onto Psychology Today, Good Therapy, or Therapy Tribe. All you have to do is put in your zip code and they will list out all the therapists in your area.
As I have mentioned, when I studied Child Therapy they explained that working with kids and teens requires that you ENTER THEIR WORLD. With little ones that is through play, with older ones it is through technology! You can parent with an illness - it isn't easy, but it can be done. My daughter understands a lot about illness now - mostly because (sigh) she has developed Fibromyalgia which is devastating for us both. But we spend time eating popcorn and watching movies in bed. It's all about BALANCE and BEING CREATIVE!
How do you balance parenting and an illness? Please post any suggestions you have, I know I have just scratched the surface!