posted
Hi all. I was just wondering what I can do to make this chronic illness less irritating for my family. I'm the foundation for keeping family
first and foremost. I'm used to taking care of kids, husband and even our dogs first before tending to me. I probably worked 3-4 years
longer than I should have and now I've hit the proverbial wall. I feel so whiny all the time. Everyone "gets" that I'm sick but they still kind
of expect the sane (first I thought that was a typo now I'm not sure)same mom and wife. They are helping with the house but I feel like I'm
letting them down all the time. I'm certain people have gotten separated or divorced over chronic illness and I'm looking to be proactive.
The kids always counted on me for school work and now simple math reduces me to tears. They always called me "webster" because they say I'm like a
dictionary. Now I can't even spell right, I'm going out of my mind. Help please if you can.
Posts: 111 | From Pa | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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BTW, I lost all my words twice. I had to learn to walk, talk, read and write TWICE during all this. And while I can type words, my speech is very stuck most of the time. Dealing with my checkbook reduces me to tears, too. I think the TBI go for the math station in the brain.
But all of these skills can come back.
Maybe an educator can set you up with some new tools for the kids to look stuff up. Less glitzy, I'm thinking so they don't get off track. Would organizing their "work" stations be cool?
You are in a tender place right now, but YOU are still here.
Now, though, you can take care of them by teaching them how to problem solve and take care of themselves. You then can be more present for the most important stuff or stuff you can do now.
I think better when lying down, so if you need to lie down to talk to them, fling open the curtains, poor a cup of tea and you can be the coordinator, delegating, solving rather than doing.
Is there a movie or story where everyone was stuck on an island and everyone had their duties assigned?
This also teaches them to listen to their bodies, monitor their own energy bank and think ahead. But, mostly, I think it teaches them that we are all only human. It teaches them skills and that it's okay to ask for help when needed.
But, depending upon their ages, I would like to stress that it may not be their "helping" so much as their "doing" what they can for themselves and the family as a team player.
Outside of the family, who might like to be on the volunteer tutor team or join the outdoor players association?
I think in terms of: Who, what, where, when, why and how?
Maybe not in that order, but
1. why, we as a family, need to expand our help network. Be honest, but not scary. A short lesson in injury and building back strength might do it.
2. what needs to be done or what needs to happen first?
3. who can do that or help you do that? Who else? Who else?
4. when will that happen?
5. how will that happen?
6. what do they need to help you?
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If grocery shopping is one task, many stores deliver now. It seems to take a long time to set it up on their website, but once you have a basic delivery cart, reordering is easy. And they carry it in !!
Good luck. You're not off the team, you are still in charge, and you, hopefully, will get some laughs at watching a team grow.
(Oh, by the way, I've never had a family, so please forgive if I am clueless to reality.
Your local support group may have some suggestions, too. If there is a United Way in your area, call and see if they have a volunteers' bureau. Be aware, though, that you would need to still screen people. And that's a lot of work.
Does your PTA have a voluteers' group of parent tutors? What about a local college . . . grad students ? Older girl or boy scouts? Honor students?
And, be sure to schedule in fun, fun, fun if you can.
My mom was sick a lot when I was a kid but I never really knew it. We were lucky to have domestic help (w/ 6 kids) but just watching a slide show of other countries might have been one way my mother engaged with us. She would like down a lot, but told us that was easier for us to rub her feet that way. It worked.
posted
Thank you geneal and keebler. I feel so lost. You cannot imagine how much your words encourage me to go on. I knowit may sound crazy but
sometimes I think they'd all be better off without me and my drama. Then I look in the mirror and tell myself to snap out of it. It's
exhausting some days just to have the energy to survive. Thanks for the life raft
Posts: 111 | From Pa | Registered: Oct 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm with you. My kids are 12 and 18 so my sadness lies mostly in the fear that this is how it will "end", that especially my older one will grow and leave home before it gets better. It's been like this for 3 years.
My younger son just revealed some real depression and stress he has been holding around this. I knew he was different, and more withdrawn, but when I really pushed him one night he said "I can't think about the Lyme disease because if I do I'll think there was something I could have done about it. Then I'll want to stay in a corner and never come out."
He never talks about it, ignores we are sick; so this was a real breakthrough.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I think this disease is very hard for women, expecially women who are use to doing everything for the family/work/friends and loving it. When I first got sick the guilt was unimaginable. I was not use to ever saying no to anyone or asking anyone for help; and now that I needed too, I felt horrible.
It's been eleven years now, and even though I still find if very difficult to ask for help, I do. And for friends, you really find out who they are when you have a disabling disease. I do know people who have separated and divorced over this disease because it was just to hard for the husband to take, they felt useless.
My advice, let your family know how you feel, and they will take it easy on you and respect you. It's very difficult for them sometimes to understand because it seems like every other day we are complaining about something else or hurting in a different place.
My husband is my biggest fan (now) and I would recommend staying as close to yours as possible(again, I think they feel so helpless) and he will realize this is not your fault. Glenn says, "I'm the strongest person he knows" and most days I feel like the weakest. Just hang in there and keep up your self-esteem, self-worth and smile as musch as you can. Keep saying, one day I will be healed!! Don't ever give up.
-------------------- Lisa Hines Posts: 18 | From Orange Park, Florida | Registered: Jan 2007
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