phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Do we need plenty of rest or just try to go and be as normal as our bodies will allow? There are days I think I just can't do this but I am still pushing..Not sure if this is good or bad.
No matter how I feel I am going to try to get myself together today to attend my great granddaughters' school Christmas program and luncheon. They are my sunshines, my daughter is raising them (a long story) but she is a widow and has to work so hard to be able to feed them.I have tried to always be there for them..
For this very reason I am going to take and do what it takes to keep functional..
Thanks to each of you for your support..
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Sorry you are struggling. Its awful and you are not alone. You need to do what you can handle. If you overdo you usually end up paying for it. Sometimes you have no choice but to do things like attend Christmas plays. You will be happy you went, but you will likely need to recover after. That's how it goes for me. I hope you have fun. If you don't participate you may feel depressed and it spirals out of control. So give it a try. Wishing you the best. M
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks Merry, I trying to just get a shower only have an hour I am in tears cause I don't think I can do this one.. Plus for some reason I can't stay out of the bathroom, the runs.., the off balance oh I hate this darn disease.. But its not going to get me.. Well, I say that .. but????
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
phyl,
It is always good to have a motivator like your great grandaughters and daughter!!
Keep a positive attitude as much as possible.
Listen to inspirational music, read inspirational stories about overcoming adversity, pray, join us on the weekly "God Thought" thread in General support, etc
You have many reasons to press forward and keep up the fight!
Big hugs!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Oh I am so sorry. I will pray you can get there. God bess you.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
Yes, it is extremely difficult to get ready and go! Yesterday, I went on a field trip with my daughter and granddaughter...and about 40 first and second graders to see the Nutcracker Ballet.
I, too, was in tears trying to get ready to leave by 7:00 am! But, I made it and was so very glad I did. Additional pain meds really helped!
Despite the total sensory overload...the loud music, the movement and colors of the dancers (we had seats very near the front) and then the trip to the pizza place for lunch....It was a wonderful day.
My granddaughter's beaming face made it all worth it! She was so proud that I (and her mother, of course) were there.
I hope all goes well for you today!
Posts: 101 | From MS | Registered: Feb 2001
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I made it.. Thank God.. It was well worth the the effort. I know people think I am drunk with my vision problems, off balance and the noise .. I actually yelled at my granddaughter and was so ashamed of myself.
Missy, I want to take the little ones to the nutcracker.. not sure I can tackle it but sure going to give it a try..
Just can't seem to adjust to crowds, noise and lights.. Oh, well.. I am so proud.
I have no meds except for xanax and the darn antibiotic and my supplements..
Thanks and God Bless,
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For the Nutcracker:
Depending upon how little the children are, if you get an aisle seat near the back half, you can go in and out. If they are too small to leave unattended, see if an older friend or relative can be there for them so you can go in and out.
You also should have someone with you in case you need help with balance, etc. They don't have to hold your hand or hover but if you are dizzy, it's going to be harder to keep track of little kids who are excited and in fantasy land. It'd be good to have someone at least of driving age with a cool head on their shoulders.
Also, if you are off balance, tell the children. They will know, anyway and if you tell them you may get a bit dizzy at times and if so, to just be still, maybe take your hand and wait a minute, they will be comforted that you know how to take care of yourself and think enough of them to share - otherwise they will be scared. Kids can handle a lot if we just share the basics.
It's probably best if you don't drive yourself so that you will be fresher to actively enjoy the performance with the kids. Even being dropped at the front door while the car is parked will take off stress of walking in traffic.
Getting there as early as possible will help you avoid the mad dash and thick crowds. Try to keep a vantage point in the distance, just over the heads of the crowd. If you have trouble with balance in a crowd, look down to directly in front of your feet where you are walking.
Call the head usher or the production manager for the theater and ask which rest room might have a couch and if the staff sees you taking a rest, they should know that you are okay. Most theaters have speakers in the restrooms so that you can know what's happening.
Most also have some ladies' rooms that are very lovely and as truly a lounge. Don't know about the men's rooms, though I've spend a few hours even on the floor of the ladies' room at my local symphony hall. Having called ahead made this possible.
Get earplugs to soften the hyperacusis. MAGNESIUM, too, be sure that is a constant supplement for your ears.
FLASH CAMERAS may be a concern. And, although many theaters say "no flash photography" the rash of cell phone cameras in public is a rude ship that has sailed. Sunglasses may help but you would need to be aware that - even if posted "no flash" - there will be flashes. I found that out the hard way.
Sitting the last row works best for me as, then, you know no one behind you will startle you with a shriek or flash. However, for little kids and the Nutcracker, the last row would likely be disappointing.
However, see about a side row - so that at least you have no activity coming at you from one angle.
Go to the website for the theater and study the seat arrangement in light of where the rest room or a resting couch area may be. The general manager may help you with this. There may be some alcoves just waiting for you but not evident on the map.
The general manager can put you in touch with the stage manager -- call well in advance and find out exactly when the cannon will go off (I do think there is a toy cannon or a bunch of toy guns used at some point). Ask about other startles of sound or light. Get the timing of those and keep an eye on your watch.
After the performance ends, it will be best to wait until most people have moved on out - you might ask in advance if you might take the kids up to the stage for some sort of educational diversion while others exit.
Plan to rest for a week before and a week afterward. Excellent food choices the week before are vital to being able to pull off any outing. Same with a rest schedule - and with gentle exercise but nothing that wears you out.
They may not allow you to take in water in but tell them it's medically needed. You may also need a bit of snack - like nuts. A packet of a nice greens powder (Green Vibrance) to mix in water works best for me - in a stainless steel water bottle. In a clear bottle or cup, this will gross out people.
Blood sugar can drop like a rock when the adrenals are stressed. Be sure you have a nice meal before you go but I have found it's best to have cooked that the day before.
Always carry nuts with you and maybe just a bit of 85% dark chocolate or just couple dried cranberries mixed in with the nuts.
Shower well enough ahead of time to rest for an hour or more afterward. Get your clothes ready at least by the day before. Making any decisions can be overwhelming so go ahead and figure out shoes, bag, etc.
These are just some of the management techniques that have helped me at times.
Oh, when you call the theater general manager (first), you can just say that you have health issues that affect your inner ear and energy level. That covers a lot of ground and you need not be too specific. I found all the folks at my symphony hall exceeding nice - other than the first time they tried to take my water away from me.
Sadly, though, it all become too much effort and I suffered injuries from trying to push it. But I got to see a couple very nice performances - or parts of such - and I'd not have been able to do that much without some of the accommodations mentioned.
Hopefully, with whatever accommodations you need, this can be a wonderful experience for you and your family.
===================
Specifically for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
The importance of ADRENAL support is also discussed. -
[ 12-03-2010, 06:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And, oh, if you don't think the Nutcracker will work, there are so many other options.
You might see if any of the actors would like to come and perform a scene at your home. It may cost you more than the cost of the performance but not necessary as much as you might think.
I once arranged for high school string quartet to go to my father's house to perform at Christmas. The students were professional so their fee was $25 each but there may be a wide range of fees and kinds of in-home or smaller performance options.
Local theater troupes, colleges and even some high school have varied performance menus.
Even for large groups, sometimes you can get tickets for the dress rehearsal and that is far less vestibular work. Be aware, though, for some groups they do not necessary run through the whole work. For a symphony, they may do just bits and pieces. Just ask in advance.
Another thought with getting someone else to drive if the Nutcracker is the choice - if you don't feel well enough that day, they can still go.
For much of the time through lyme, last minute cancellations are no stranger. It's nearly impossible to tell until the last minute if it will be possible to pull it off. And that is why advance planning and energy allotment is so vital.
Also, for family photos - be sure anyone who is taking a photo announces in advance (at least to YOU) to be sure you are aware a flash is about to happen, even if you are in the next room. Flashes carry.
You might ask your doctor about a referral to a vestibular therapist so you can learn other ways to ensure your safety if you are caught off balance. A couple good tricks can save the day.
Wherever you go, take a neck pillow or roll up a scarf for neck support. The reason is that the less neck strain, the easier sensory stuff will be. Relax and support your head and neck as much as possible.
And, when others applaud, you might unobtrusively position your fingers to cover your ears. Use that time for rhythmic breathing and you can show your appreciated by trading smiles with those around you rather than pounding tender hands together and getting auditory assault from those behind you.
Good luck. I do hope you have a wonderful Christmas season. -
[ 12-03-2010, 05:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
If I have somewhere to be, I always make sure to shower the day before the event. It's just too much to do it all in one day. Then I plan to have the day after completely free so I can rest up.
Posts: 707 | From Colorado | Registered: Jul 2010
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Glad you were able to make it. I can't recall the last time I went somewhere like you did.
But, when I did I found I needed time out or quiet time away from the movement, lights and noise...
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Remember to Smile
Unregistered
posted
I'm with jlp38, shower day before.
Keebler offered good tips, esp warding off hypogylcemia.
While you're a LD patient, treat yourself gently. Don't push yourself & get overtired. Be sure to sit and rest often.
If there's a "big event" I very much want to attend, I clear the calendar completely the day before & after so I can rest up.
IP: Logged |
I learned by experience. I used to need two weeks and sometimes way more to recover from such effort. and prep time before to pull it off.
I've used the foam earplugs when I just couldn't stand the room volume level.
But some things are just worth it... if for no reason other than we remain engaged in life besides having lyme & co.
that itself is therapeutic. I am glad you went phyl
As wellbeing/energy returns you can jump out ahead of yourself since by contrast you feel better.
But it is a process that needs to be honored.
Whenever you want to just push through without respecting your needs.
I needed the reminder. And it validates... even in retrospect...what we go through or have been through.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
| IP: Logged |
Just wanted to share.....today I took my grandkids (boy 9 and girl 7) to the movies to see Tangle. My daughter had to go shopping and run errands, so she dropped us off at the theater for the late matinae (sp?). (kids were out of school b/c of teacher workshops)
I forgot to bring ear plugs, so had use tissue. That surround sound is so loud! We then went out to dinner.
But the kids had a blast! They are very understanding and don't seem to mind that Nana has to use a cane right now. They are just thrilled to be with me. What a precious gift that is!
Tomorrow I'll likely spend the whole day in the recliner, but it will be worth it! I am more upbeat this evening than I have been in a very long time.
Thanks for listening!
Posts: 101 | From MS | Registered: Feb 2001
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I always end up feeling better when I push myself to go somewhere, even when I feel like I just can't handle it. Once I go, I feel more alive and more normal.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Glad to hear
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic