kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
My daughter has not been feeling well at all lately. She got a new bite last week and has added another antibiotic to her regimen.
Then, she was sick this weekend with what appeared to be a stomach virus. She is feeling better from that but I can look at her face and tell she feels bad.
She got invited to go to a concert tonight and then spend the night in downtown and go shopping with her friends tomorrow.
Although I am letting her go, I feel so anxious about it. She is so excited, but I KNOW she is pushing herself to go. I've made her promise that she will call me if she feels like she can't stay and shop tomorrow.
I hate this feeling. I just want her to be able to do normal teenage things without worrying. I just feel like breaking out in tears. I'm trying to act calm in front of her, but inside I feel like I'm dying.
I know if anybody would understand what I feeling it would be my lymenet friends.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear it's just so rough for her but it is so necessary to be with friends and out there having some fun. I hope this goes well.
With lyme and if on Rx, the ears can be damaged at far lower decibel level than normal -- even when around hair dryers and kitchen appliances.
Make sure the has EAR PLUGS (and spares) and will use them. You can still hear a LOT through ear plugs but they will offer some level of protection to ear nerves. Rolled up kleenex cannot even come close to protecting ears.
If she is light sensitive, she may also need sunglasses (&/or a visor) in the concert if they get into flashing lights, etc. And if they do, let her know that it's best to say seating during such times and close her eyes if she can - that will save her tons of energy output and nerve drain.
She may also hold her applause as that can be a huge energy output. I've not been able to attend any social gathering for years but giving up the applause when I could still go really helped. I took that time to breathe.
Load her up with good snacks and enough money to buy real food - to avoid junk food - and she may do very well. Nuts are good. Emergen-C packets to put in her water.
A neck pillow or sturdy scarf (or small hand towel) that she can roll up in her bag - neck support is helpful to reduce fatigue.
When she feels very excited, she needs to balance that energy output with good food along the way to keep from getting an adrenal/glucose drop & shock effect.
Let her know that if she starts to feel tired, she could even take a bit of a nap, anywyhere, just sit down, get still and close her eyes. Of course, she should be around friends and aware of her valuables, but being able to take a break is important to endurance.
Also - if she feels ill at anytime, she should connect with an usher. They may have a First Aid room somewhere where she can lie down. I've done this so many times, I learned to first find the head usher and let them know that I may need their help. Then, when I did, it went very smoothly and I did not have to explain much.
Actually, I now recall phoning the concert venue in advance - that worked out much better and then I just connected with the head usher and the one for my section when I got there.
They also then let me take my water bottle to my seat when others had to give up their water bottles. I would have passed out without steady water. (This was a symphony hall - and not water was allowed. I first sneaked it in but they saw me drink and tried to take it away. When I told them I would faint without it, they backed off.)
If you call ahead, you can also find out the location of the restrooms and if there are any couches in those. She'd want to have a scarf if she needs to lie down anywhere - to protect her hair.
I spent a lot of time in very nice ladies' lounges - on the floor. They were as beautifully decorated as the concert hall and larger than my apartment - but had no couches and I HAD to get horizontal.
By having called in advance, the staff made this work for me. One usher even kept me supplied with water. I would tell anyone concerned that I just had to rest. I had a tiny cross-body billfold so felt more comfortable closing my eyes for long stretches. I'm much older than she so am fine alone but she should have a friend with her at all times.
You can have fun going over some of the options for her but it's no laughing matter to be exhausted in public. She needs to know ways to make this work for her.
I had seizures so I learned - over time and many hard knocks and shocked or unhelpful ushers, etc. - to go to extremes with planning options. Still, these alterations can help others who even just tire easily.
Call the venue and ask if they have a "Cry Room" or other semi-sucluded (sp?) area. You maybe able to see the concert floor layout on the website. Seeing the layout in advance is helpful.
It's good that she knows to call you if she needs to leave at any time. I had to leave many events, even those in people's homes. But, having some time that was fun still fueled me and gave me some good memories and helped to build some relationships.
I hope she has an absolutely splendid time.
Tomorrow when shopping - she should also not hesitate to ask for a First Aid room if she needs to rest. In stores where they SAY they have no restroom, if she needs one, she should be comfortable explaining that she is dealing with a "health condition" - that helped me a time or two when told the closest rest room was a full city block away. I also learned which stores had public rest rooms and which ones did not.
In department stores, I pretended to be in the market for a lot of lounge chairs. She can pretend she is looking to buy her mom a comfortable chair. -
[ 08-17-2010, 02:19 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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1. my wheelchair is in the trunk of the car when we will be gone a while and walking may be involved. I don't often use it, but sometimes I just have to.
2. Most stores have wheelchairs and motor carts. Maybe she can learn that it is "fun" to drive one. Once I got stuck at the back of a store and they had to go get a wheelchair for me.
3. Most people are understanding and helpful if they realize you are unwell. Recently I bent over to see something and nearly passed out. The clerk promptly went in back and brought a chair for me. Then she went around the store to find what I needed. She was most kind to me and I greatly appreciated it.
4. I spent the second half of my senior year in bed....hepatitis from mono and an enlarged spleen. I spent 15 minutes at my prom. I was one of the speakers and could not remember my speech....most embarassing.
But a few friends understood and helped me. Mom used to fix a nice dinner with flowers on the table and a friend with me...in my room. Another friend would come by to take me for rides.
My social life really took a hit, but I survived. I think it is necessary to help your daughter understand the permanent damage she can do to herself by overdoing it. I made it through college, sometimes taking finals while staying in the hospital. My health has never been right since then.
I was very overactive in high school, spending many too many hours with my theater company, music groups, tutoring, working, etc. My mother later realized that I had indeed overdone it and my collapse was probably due in part to that.
It is so hard for a sick teenager. My heart goes out to both of you. Try to find as much fun for her as you can at home. Be creative, invite kids over, play games, have cooking parties, etc. PM me for more ideas.
I also encourage her to keep a diary, to record her feelings, her ways of coping, her goals, etc. It must be totally private and just for her. It helps to see what progress you are making, even if just a little.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Thank you so much Keebler and Farraday. You both went out of your way in helping us.
I found out that the concert is going to be outside at night, so the light issue is ok. She had already left or I would have given her ear plugs. Loud noises really bother her.
She does push herself too much, and I try to tell her that overdoing things will cause her body to be sick for a longer period of time. She dances about three hours a week, and if I even hint at her not doing that much she gets very angry.
This is a hard time in life even without being ill. She does keep a diary, and I would never even think about opening it. It's helpful to be able to put your feelings down on paper.
Thanks again my friends....
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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