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evelynrmontgomery
01-29-2008, 09:46 AM
Hi! My name is Evelyn, and i was diagnosed w/ Lupus about 1 1/2 years ago. I have been reading the boards and man, can I relate to so many of you! The pain, frustration, depression and the feeling of being so alone! I wanted to find a place that I could get some support-my husband, as much as I love him, doesn't understand what i'm going thru. I don't feel like I can talk to him because every time I mention anything, it's like he thinks i'm whining. Ugh. So, I bottle everything up-I don't tell him about the nights I can't sleep because the pain keeps me awake, or how my joints and muscles hurt so badly in the morning that I can't even pick up our 7 month old baby, or how the feeling in my hands disappears and I can't function! I know that there are others that have gone thru this or are going thru this w/ their spouse/significant other. I just get so frustrated that he's not giving me the support I need. Any advice on how I can get him to understand, or even believe what is going on with me?

Thanks!

Suzique
01-29-2008, 10:41 AM
Hello, Evelyn,
Welcome, from one new person to another! I have only been here 2 weeks myself. It has been an awesome experience for me. The people here are very supportive and knowledgable!
I understand the hubby thing. My husband is very sweet and tries to be there for me, but it must be hard to listen to the constant complaints. I keep a lot to myself, but sometimes I feel so overwhelmed, I have to talk to someone!
Tell us more about you. Are you working? Any children? What do you do to distract yourself?
Look forward to talking to you.

Susan

Pearl
01-29-2008, 02:45 PM
Hello Evelyn -

I'm new here too, and just wanted to welcome you. I relate to your sadness and frustration. It is difficult for those around us to understand and to deal with the chronic nature of this illness, especially when we feel rotten at the same time that we are having a day when we look perfectly fine. That's why this type of forum is vitally important to your overall well-being. It can be emotionally and spiritually healing to visit here.

I wish you peace and health.

Jana

sick n tired
01-29-2008, 11:36 PM
Hey Evelyn,

Welcome to the forum.

I can relate to the husband thing. I went at least 10 years feeling like that. Your husband needs to be educated. Maybe there is a support group where you live, or he could at the very least read on this forum. He needs to understand what lupus is. My husband started reading on it and came to the doc with me. He got scared and now he has become protective and understanding. It is a world of difference. It is taking me a while to get used to it. Of course, I just got diagnosed a few months ago so I hope when the newness wears off he won't go back. Right now I am in a flare and not able to do things.

Your husband could be trying to remain in denial about the seriousness of your illness and everytime you say something about the pain or exhaustion, it just reminds him again. I think that my hubby is there at times. Perhaps you should take him to the site butyoudontlooksick.com The name alone says it all. We do not always look sick. I don't know about you but I don't want to look sick if I can help it. It is almost if we put makeup over the rash and try to dress up then the world thinks that we are well. I know that I can see their point. I probably have been guilty of that before.

I am sending a cyber hug for you. When I can't sleep because of the pain, I get up and get on the internet.:)

Cyber hugs to you,

karen

evelynrmontgomery
01-30-2008, 08:48 AM
Thank you all for your kindness and understanding! Suzie wanted to know more about me...I am a stay at home mom w/ 2 children-3 1/2 years and 7 1/2 months. My kids are what keep me distracted, although most days it's hard to keep up with them! I had a follow up appt. w/ my rheumy yesterday-my husband wasn't able to go to this one-he said he would go to the next one. Hopefully he will so that he can talk to the dr. directly and ask the questions he wants to ask. Hopefully he'll come around and give me the support that I need! Keep your fingers crossed for me!

Saysusie
01-31-2008, 11:46 AM
Hi Evelyn :lol:

Welcome to our family. Many members here have had to deal with loved-ones not understanding our disease and feeling that we are just whiners and complainers. Many have suggested letting our loved-ones read "The Spoon Theory". It can be found at: www.butyoudontlooksick.com
They have found it to be very helpful in explaining how we feel to those who do not understand.
Also, here are some good books that he can read if he is willing to try to understand:
1) "The Lupus Book: A guide for patients and their families" By Daniel J. Wallace
(There are three editions of this book)

2) Lupus: A Patient's Guide to Diagnosis, Treatment, and Lifestyle
by: MD, Iris Quintero Del Rio

3) Coping with Lupus (Coping with Chronic Conditions: Guides to Living with Chronic Illnesses for You & Your Family)
by: Robert H. Phillips

We are here to help you in any way that we can and to make sure that you know that you are not alone!

Peace and Blessings
Saysusie