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Thank You

Thank you to all who helped us with our medical expenses.

We will always remember your kindness.

Sincerely,

The Hausfelds

Coping Advice

 

Letter To Normals: Getting Others To See Your Symptoms

by Ricky Buchanan *

These are the things that I would like you to understand about me before you judge me …

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed, and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover. Imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting up,” “walking,” “thinking,” “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Fibromyalgia <Lyme, Lupus, etc.> may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct — if I could do it, I would.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now — it can’t be put off or forgotten just because I’m doing something. Fibromyalgia/Lyme/Lupus etc. do not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro. If something worked, we would KNOW.

If after reading that you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you — people who are not sick — for many things.

But most importantly, I need you to understand me.

 (I did not write this……  But it’s great! …..Karen)

Lyme QuestiOn: Why do showers make us so sick? LH

It makes my blood pressure bottom out at times or makes me feel like I am on fire. Right now I do okay but thank God I have a seat in my shower.AR

thats what i think it is too…LH

detox DH

I use to black out in the shower. I’ve had that happen to me off and on since my teen years. AR

I just think it takes so much out of us standing like that LM

I lean against the wall LM

i would come out and feel like my blood was gone from my body NN

heat? LE

Yeah I agree that’s why sometimes I sit! AR

otherwise I cant stand LM

i wish i didnt need 30 mins to recover :( KB

I hate showers….LM

I agree…I can’t take a hot one, my body temp. doesn’t regulate very well. AM

I feel like I ran a marathin…LM

yep i can relate to all of you LH

omg!im not going crazy!good question NN

mine either I have to keep a fan on me at all times in there. LM

or I overheat LM

Used to have that problem…it’s gotten a lot better. Still I only take one if I have a lot of energy. Usually I just take a bath instead. :/ JS

i have handles all over the shower to help me stand…KB

Hot shower I get very sick…. But it takes alot… Shaving and stuff… It looks like a half a day job… : / KZ

Ok gettin in and out of the tub is harder for me than a shower…LM

I thought good HOT, sauna-like showers were good for killing off the buggers??? When i was real sick i would make my shower so hot that hubby didnt know how i tolerated it… it felt good. Mayb u feel a herxing effect???? JT

M had iv ivig,she was paralizes before the iv the bacteria must eat our plasma!yes thats it!wow NN

This is why we smell. LOL just kidding JS

herking toxins being shot out from die off NN

I can’t close my eyes to shower… vertigo.DS

I get panicky and feel claustrophobic can’t breathe too hot – I want to cry when it’s shower time PB

Showers don’t for me. Baths do. BH

I cant breathe either…the air gets too stuffY….LM

anyone feel like thier blood was drained… NN

I have to shower with the curtain half open and towels all over the floor and a fan…LM

Wow i had the same!omg NN

IDSA HELLO oh were crazy making this up! NN

We all need to go to court!we all cant be faking the same issues! NN

Sorry L got off the topic there! NN

I am so glad that I am reading all of your comments. Until I hooked up with L (haven’t since high school) I didn’t realize how pervasive and debilitating Lyme disease can be. You are all in my thoughts and prayers! KR

like peas in a pod…..LM

If I was single what a great job..”Shower buddy” for Lymies!! Lol JR

(JR) is always looking for the positive! Lol CU

The shower is a knowing fact that the heat will make the bacteria stirr up . Give it a chance I take wicked hot showers do lean and sit in tub its exhausting but I do feel better next day . Try it at night in the morning i feel worse when I take one but it stirs up activity.From what I was told they don’t like heat . I loved the summer and find i Have a much harder time in summers now . Sucks to put it midly…SG

I offered the job to someone today Jeff.but i guess he didnt want it :( LH

Foolish person… : ) JR

or..maybe wise LH

Sophie is 6 months old…

and growing & teething like mad! Her 2 bottom center teeth are all the way in and all the others are on the move too. She cut those at 4 1/2 months, just a month older than Kelley cut her first two. The time is going so fast….I want to stay “Stop! Don’t Grow anymore for awhile!” She loves all sorts of hand games, like “Sophie goes down, Sophie goes up” “Pattycake” and “This is the way the pony goes” and of course her first fave, “Peekaboo”. She giggles and it sounds like an angel. I swear, this child is so smart, good, special, and beautiful…has so much personality, that I feel like that old song “Close to You” was written for her!! (On the night that you were born the angels got together and decided to create a dream come true, so they sprinkled stardust in your hair and shone the moonlight in your eyes of blue!!”

Baby alpaca

We just had a baby girl alpaca born!! She’s BIG, fawn & white….they are so wonderful!! Babies are incredible gifts….

OK so I’m tired & sore during the day….b/c the past 4 nights have been hell. Itching, pain everywhere, last night a migraine….didn’t have this w the big IV meds dump…during it…but AFTER I ended that stage. WTH???

dogs…

The great pleasure of a dog is that you may make a fool of yourself with him and not only will he not scold you, but he will make a fool of himself too. ~Samuel Butler

Lyme requires courage

Courage does not always roar. Sometimes courage is that quiet voice at the end of the day saying “I will try again tomorrow…”

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