posted
I am so bumming. My family is downstairs having an end of the year party for my son's class, and I'm laying in bed w/ light and sound sensitivity, fatigue and depression.
I hate this *$&(#@ disease. I want them to have fun, but having 50 people in my house with 20 screaming kids when I'm in the middle of an IV herx is horrible.
I know you all know what it's like, but. . . my only trip out of the house this week was to my doc. I feel like my life is slipping away. My husband says he knows how I feel, but NO WAY. IF he knew how I felt, this BBQ would be being held at someone else's house.
I am just counting the minutes until these people leave. I've spent the last 2 hour crying my eyes out.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
My heart definitely goes out to you since I know so many of us know EXACTLY what you are going through. It's really impossible for others to understand if they haven't really been through it.
I've spent many a time in a dark bedroom with the shades drawn and earplugs stuffed in my ears. It's one of these things when you feel so darn LONELY, even though there are so many people around.
Try to hang in there. They say "It's always darkest before the dawn."
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Catskill, please know that we care for you. You are not alone here on Lymenet.
It is hard when you cannot even find refuge in your own home. And like Tdtid said, others just can't understand unless they got through it themselves.
I feel like I don't have the words to say to comfort you right now. Wish I could send you a big hug, one that wouldn't hurt of course.
Just know that I am praying for you.
Take care.
Posts: 5237 | From here | Registered: Nov 2007
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bettyg
Unregistered
posted
mama,
i also have the extreme light, sound/noise, and chemical sensitivies you have ... so i really can empasize.
i'd be a mad woman going into LYME RAGE ORDERING EVERYONE OUT OF MY HOUSE! was very inconsiderate to have it there with you being so sick.
since i'm on here really late/early am; parties over by now...
recuperate tomorrow, and give your graduate an extra hug and kiss!
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posted
Thanks guys. I was about to fly into a rage and it literally took everything I had not to.
It wasn't a graduation party-my son's in 3rd grade. But during his first couple of years of school we had a bbq for the families. Last year we didn't I was too sick. Now I know that I was too sick again.
For 4 hours the party went on and not once did my husband come see if I needed or wanted anything which really sucked because I felt trapped in my room.
He later tells me that he was trying to not disturbe me. Are you kidding me with the noise of all those people? I was in agony. Anyway, he doesn't get it and he was mad and yelled at me because I was so upset.
We never fight in front of the kids or raise our voices with eachother. He really scared and confused me and I'm not saying that I was rational or communicating well, but I think it's normal to feel bad and sad and mad when there's a big party at your house that you can't go to and no one even asks if you want a drink or some salad.
Thank goodness for lymenet.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
oh my, I can soooo sympathize with you! Sometimes even anticipating ainvolvement will exhaust me before the actual event even occurs.
I have a birthday party/end of school party next Friday with 12 10-year-0ld's coming with super-soakers to water my backyard with mayhem. I'm looking forward to it...being over.
I've done all the planning and set-up. My husband will run the bbq and I will try my best not to fly into rages and scream at people.
I want life to go on as usual for my family, so I plan. But when I'm sick or exhausted, I feel left out of my own planning! Then I weep and feel life is passing me by.
Sound and light sensitivity really make a person just hide and cringe. And if you've got kids, even normal sound cuts like a knife in a brain of butter. Exhaustion is the message of "no reserve" and the need to shut down. Respect the message.
There will be better moments...not alot right away....but here and there...
Hang in there,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Cobweb
Unregistered
posted
They also say it gets darkest just before it goes totally black! Oh My.
I wouldn't have to be herxing for a party with that many 3rd graders to get on my nerves!
Glad you survived-and how sweet the quiet once it was over must have been. At least no one said "But you don't look sick."
I can understand your husband's dilemma. Should I or shouldn't I go check (bother)her? Lyme Disease is a Family Disease. No doubt about it.
posted
The party's over and things are much quieter today. Unfortunately, I really don't trust DH now and our communication is so strained.
I feel like he won't even look at me and my ability to trust him is quite shaken too.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
wow that sounds miserable-and vaguely familiar.
This time a year ago my marriage was in the can... I couldn't participate in my own life, let alone those of my immediate and extended family members.
I've bailed on lots of social engagements with my husband trying to talk me into going-"it will be good for you. its just a couple of hours. you don't have do anything, just relax"
Its hard for people to understand that sometimes just sitting upright is hard, not to mention smiling and making pleasant conversation!
I was lucky enough to find a good therapist and my husband and i have lapsed into a new normal.
I don't go all social engagments. My husband does all sports things. If i say "no" it means no.
At the same time I try to honor their need for normalcy. So if I opt out of something, then I just let them go and don't expect them to look back and worry about me. Chances are they need a break from me and my illness.
now, i'm not my old self physically, but im happier with all of my relationships. be patient and gentle with yourself and your spouse. You guys can see it through
Posts: 368 | From freehold, nj | Registered: May 2007
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posted
Till a rotten disease. I have been on IV for 2 months then orals before that. The worse is worse and when is the better. Did you just start abxs? barb
Posts: 167 | From USA | Registered: Jul 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
No fair, no fair, no fair!
Twice I bailed on parties thrown for me, and just went to bed crying. Nobody seemed to notice and just kept drinking.
My sister used to tell me she thought I would get better if I would only just go to church... A morning full of that many people and that much activity, however positive and well-intentioned, would have left me a sobbing heap.
Even loving husbands can't know what this is like unless they have been there. And I can't bring myself to wish it on any DH, even when I'm angry.
Does your husband have a cell phone? If so, he can make up for dissing you by carrying it around even in the house, and responding to your every need, until you feel more secure.
It stinks to miss out on the fun, to not be able to tolerate the fun, to be ignored when you tell people not to have sensory overload fun around you, to feel alone in your misery.
Well, anyway you're not alone. Most of us have been there.
Hang in there. You'll get better!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry things have been so rough
I know its hard missing out on things and people dont always react the way we would like...
since my symptoms arent always the same symptoms or the same degree it can make it hard for people around me to know if they should disturb me or not.
(i have had those ow my head hurts - lay in a dark room with sunglasses and earplugg days too)
posted
Thank you all for your replies. This just got bumped up again in the last few days so I figured I would give an update:
I am feeling really good. I can drive the last 5 days. I took the kids swimming today!!! I have my PICC out, and I'm still getting daily infusions of IV rocephin for 2 more weeks for a total of 8 weeks total.
I added zithro, acupuncture, rife and some detox supplements.
Emotionally, I am in a MUCH better place. I can tolerate being around people and most light and sound. I'm still a little hurt that hubby didn't understand and move the party that was here, but I also don't want my families' lives to stop just because mine did.
I also worry that he's in major denial about his own possible symptoms. My daughter is probably one visit away from finishing treatment under dr. J and my youngest son who was breastfeeding when I was dx is going for a tonsilectomy. Dr. J is having the tissue and bloods from that sent to a lab and then we will be taking him to Dr. J in Sept.
I know 10 people dx with lyme in my area in the last 2 weeks. These aren't people that know people I know, these are people I know directly: mother in law, sister in law, friend from highschool's son, teacher's granddaugher, mother of classmate of son, daughter's ex-classmate and that's just of the top of my head.
Thank you lymenetters.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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bettyg
Unregistered
posted
mama,
glad to read some HAPPY NEWS AND PROGRESS FROM YOU!!! yippee! finally ...
glad son's tonsils and blood will be checked out good.
wow; that's an awful lot of relatives/close by friends!!!
if your area was NOT considered ENDEMIC BEFORE, please make sure it is now!! we need lyme nos. reported!! *******************************
best wishes on your lyme journey with us!
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