Hi Jessica.

I don't have young children anymore, but I do have grandchildren that are my world. My 3 year old granddaughter now ask me EVERY time she sees me "Nonna, you feel better?" It's the most endering and saddest thing for me to hear this. First, because she loves her Nonna and wants to spend more time with me, and second because I know she is asking because she wants me to play with her and I just don't feel up to as often these days.

I'm in a flare right now, but when I am feeling decent I take full advantage of it without overdoing it. Most of the time all 5 of my grandkids are happy if I sit at the table and color with them, sit on the couch and hold them & watch TV or play a short round of 'tickle' on the bed.

My advice would be to take advantage of the 'feel good' times without over doing it. You HAVE to listen to your body and scale things back a little by what it is telling you.

(((hugs)))
Lisa

If you experience MS fatigue, you know that when you hit that wall, there's no way around it. All of a sudden, your simply out of gas. Unfortunately MS fatigue is likely to peak just about the same time that the kids are coming home from school/daycare, dinner needs to be cooked, and the family is getting togeher or the evening. If you're coming home from a long dy at work, you may not have much energy left for anyone or anything.

Make good use of power naps if you can carve out 30 minutes to rest before you have to start joining the family. Set your priorities. If quality time with your kids is high on your list, spend less time on the things that aren't as important. Figure out what you want to do with each child, read a bedtime story, or watch a program and plan around it. Become familar with the "Sppon Theory." Keep things simple, dinner doesn't need to be a banquet. Come up with some simple but nourishing menus and do the things the easiest way possible (for example, by using pre-cut salad ingredients or planning menus that provide plenty of leftovers) Take a look at the book by Shelly Peterman Schwarz called MS: 300 Tips for Making Life Easier for ideas on how to save your energy for the important stuff. Ask for help. It's okay to ask family members to pitch in and help, and to remind them how everyone will benefit in the long run. Even your 4 year old can pitch in and set the table. That will make him/her feel like a big girl/boy

Sometimes MS is going to get in the way of things that you or your kids want to do. But, by being open about the disease, and your symptoms, you make it easier for your kids to understand why plans sometimes need to be changed or activities need to be postponed. If's okay for them to be angry at the MS and in the end, they'll feel a lot less guiklty about expressing anger at the disease than at you. This will be easier for you to teach as your kids get older, right now, it is difficult at their ages to understand anything about this disease. Hell, I'm 55 and don't understand a lot about the disease! Most of all, try to enjoy your kids at this age. It is such a precious age and it goes by fast.

I saw the other day on the m s society site or just random Google search free materials u can get to explain to young children. It was illustrated books and videos online.. I'll look for the links.. my girls are 12, 13, and 14 and don't understand what it is.... I just got the DVD (free) in the mail.

Hi

Hope you recover soon. There is so much you can do from the bed, ask for them to brush your hair, get you stuff, snuggle and read, watch tv or just love, talk, put mommies socks on please baby, stuff like that.

My daughter had a friend in high school, her mother had ms, since giving birth she didn't recover and spent the next nineteen years bedridden. She attended graduation by ambulance on a stretcher, her daughter was happy. Not long after graduation she died. Her daughter said that even thou her mother was bedridden, she had a real mother, she kissed, hugged, listened, laughed, cried and talked about life with her. From her bed she raised an amazing young lady. Her daughter misses getting home from school and sitting on her bed to share her day, she is now in college.

Alma

Alma, that is the sweetest story and sad. I know some days my little one will just hang out on the bed with me telling me about her day. If I'm able I ask to blow dry her hair or curl it for her. It makes me feel useful and her like a princess. I have much guilt over not being more active with my girls so it must be much worse having small children.

Go to the M S A A website and order the book Mommy's Story. You can also request free publication magazines by mail and videos.

Wow Alma! That is a very sad but touching story. Hopefully it will be a looong loooong time (or never!) before I'm bedridden but it is comforting to know that someone was still able to raise a happy child from their bed.

I have to admit that as sad as I was to learn that I probably have MS, there was weight lifted off my shoulders because I was sure I had a brain tumor or something that would literally take me away from my kids. With MS I may not be "myself" but at least I'm still there.

My husband gave me a "talking to" last night. He's bothered by the fact that I've googled life expectancies, that I have mentioned statistics and that I talk about relapses as if they're a certainty. As I've said a thousand times, I have not been diagnosed but the last two years of my life make SO MUCH more sense when viewed through the lens of having MS. I'm convinced this is my disease and I think I owe it to myself to know everything I can about it. I have a feeling that the neurologist I'm seeing in November is going to start me on a DMD.

Lisa, I sat down and colored with my kids last night. They loved it. I'm going to have to come up with more low key things we can do together.

Lchoppel, I do work a full time job. I pick the kids up after daycare and take them home and have dinner ready by the time my husband gets home. I have adjusted my routine to try to make it less stressful and I know there are future adjustments to be made. My fatigue usually peaks at about 2pm. By 5pm I have a second (small) rush of energy and I'm back to the couch by 9pm. I'm going to have to learn to slow down a bit in general. I'm a gogogo kind of person.

DairyFree, I'm going to google the materials you mentioned. I may even call the National MS Society to see if they have something specific for a younger age group to send.

Thanks again for your thoughtful responses!

The other thing that bothers me is that I'm fairly sure my son has my propensity for autoimmunity. He has a lot of allergies and at 4 months old he had an attack of ITP (his body responded to a virus by attacking his blood platelets) and had one round of Winrho and a round of IVIG. He recovered fully but I'm scared to death that he is going to inherit this disease or some other autoimmune issue from me. :(

I have 5 kids obviously lol. My oldest just turned 15 (son) my daughters are 13, 11, 8 and almost 6. I have told them what's wrong with me and try to explain current issues even allowing to see me receiving shots my daughters are really open to understanding. My 15 year old not as much. 2 and 4 are hard ages to get them to understand I remember that age and my MS I just always told them what's happening. I always did what I could to keep them aware that I'm still the old mom even if that means mom has trouble walking but she will watch you play. Also keeping up playing games with them and other..... Tough, really tough. I wish you luck.