Should I impose more limits?

[susiestar]

Jessie is not getting any better. Her docs don't seem to care. The therapist cannot figure out why they insist it is anxiety except that the docs don't seem to care.

She WANTS to go and do things. She will push herself to not shake so no one comments or looks at her funny. It is not easy and it is quite painful.

Today husband's sister had everyone over for swimming and a barbecue. I couldn't go because I have had a really bad week, but Jess insisted she wanted to go. She knew she would hurt more tonight and tomorrow.

Now she is in really BAD shape. She is having a hard time walking because she is shaking so badly. It seems to rebound really hard if she suppresses it much. She has a nasty migraine. She has been throwing up. The muscles in her back are so tight that I can SEE them under her skin. They are also very swollen.

husband encourages her to do more and more and more. I WANT her to do more. He does not see how much it costs her. He goes to sleep and I deal with the all night pain, tears, medicine, hot packs, massages, falls, etc... With the outings she has done in the last couple of weeks I have not had more than 4 hours of sleep at any one time. Jess needs me to wake up for something every few hours. husband will help her up if she falls at night MAYBE once every couple of weeks. He has a hard time waking up once he is asleep. And thinking once he wakes up. So I get to see all the problems and he is totally unaware of much of this.

She will spend the next 3 days in horrible shape. She will be a trooper through it, but the cost is VERY high.

Do I need to start saying she cannot do some of these things? That if she goes somewhere she cannot do certain things, or that she can only be gone for a couple of hours at most? I do NOT want to limit her world or make her miss out on things. In the long run being up with her at night won't be that big a deal for me. I worry that she will stop trying or that she will be able to do less and less. I don't want that.

I just don't know how much she can handle like this. The pain drives her out of her mind. It isn't made up, of course. She doesn't even whine about it. But I can tell it is vicious.

What can I do? The docs will NOT treat the pain, or do much of anything for her. been there done that had to restrain myself from yanking the doctor' lungs out through their noses.

Thanks for any ideas.

 

[Josie]

Personally, I would not limit her activities. As you know, my daughter is in a similar situation. I encourage her to do things, but I don't push her. I have seen how she falls apart afterwards and would not pressure that choice on her. If she thinks the outing is worth it, I go out of my way to make it happen. I am not sure she will always be able to do things, so I want her to enjoy it when she can.

I think it is great that your daughter has such a desire to go do things. Better that than giving up. I would let her enjoy her life as much as possible.

Since her activities interfere with your nighttime sleep, in an ideal world, I would think about telling her she can't wake you up or getting husband to get up more. I know, though, it is very hard for a mom to not want to be there for their child in this situation. My daughter feels more of a need to be strong for her dad but will let it out for me. I am glad she has an outlet for her pain, but I have had husband be with her a few times, just so I could get a break. When she was not sleeping, we did take turns.

Maybe you could get everything together the night before that she might need, so she doesn't have to get up or get you up.

I have had to go to out of mainstream doctors to get any help for my daughter. I like doctors with an MD or DO that use alternative and conventional treatments. Going to the regular doctors is too frustrating. I think they are trained to go through a checklist of symptoms and if you don't fit into one of the diagnosis's, they call it anxiety.

ETA: I wouldn't add limits for her health's sake, but for yours, if you need a break.

 

[susiestar]

If I could get husband to be awake I would happily tell her that she needs to go to him one or two nights every couple of weeks. He simply cannot wake up and function in the night. He really tries, but his body does not work that way any more. He is great about letting me sleep whenever I can though.

One of the big problems is that after an outing she shakes so hard she cannot drink unless someone else holds the cup, cannot get food to her mouth reliably unless it is hard like a carrot or cookie and sometimes her throat spasms and her jaws spasm and it isn't safe to eat anything that hard. She cannot physically pick up medications and get them to her mouth even. Her legs will spasm so bad that sometimes they just go out on her while she is walking. No notice, no warning, just BAM and she is on the floor. Of course she is shaking so hard that she cannot catch herself with her arms.

The severity of the shaking is the reason I am considering limits. It becomes unsafe for her to eat, for crying out loud. Not to eat everything, but what you really WANT is what you cannot have at times like this. She also ends up with severe migraines and vomiting. NOTHING is harder on a migraine than being unable to be perfectly still. I am very much afraid all this will drive her nuts. She is so strong it is amazing, but how much can a person take?

 

[Josie]

It sounds like it does have an impact on her safety, then, if she goes out too much. My daughter feels worse, but is able to take care of her own basic needs, if she overdoes it, so that was my perspective.

You have more personal experience with chronic illness than I do, but I would think part of dealing with it would be learning how much to push it without making the whole thing worse. Feeling worse, shaking more, is one thing, but being unable to eat safely for too long is a different story.

If she goes out for less time, does this still happen?

Still, I think it's a balancing act between having a life and letting the illness take over. You've probably already talked to her about your concerns. What does she think? My daughter is only 12 and hardly ever goes out, but I would error on the side of letting her have a life. Your daughter might be going overboard on the activity and it is time to reign her back in. Only she and you can really know.