View Full Version : I need your help...

03-26-2013, 04:26 PM
I'm returning to England soon and will be living at first with my Mum. She has never known me ill, I've been away for over 2 years and ill for 18months of that time.

I was chatting to her on Skype last night and she is full of positivity and energy and determined to get a clear diagnosis for me, and to make me "better". I really appreciate the fact that she doesn''t doubt my illness, she's said she'll do whatever she can to help me be more comfortable, she'll pay for private health care if need be. She's an angel.

However, she accuses me of being negative. If I say anything like "I have to learn how to manage this because I'm stuck with it for the rest of my life" she sees that as me being negative. I tried to explain about finding a "new normal" as the chances of me getting back to how I was are very slim - again, she sees this as negative. I'm not being negative! I am being realistic.

It's coming at a very challenging time for me what with my recent break up and moving half way around the world again at short notice...and also because I am trying to do the whole acceptance thing (which is hard without a clear diagnosis) but I think she is misinterpreting acceptance as giving up.

Of course she's got all the energy in the world to fight this thing, she's not been fighting it already for a year and a half and she's not dealing with constant pain and fatigue. And I love that she wants the best for me. But how can I explain that I am not being negative? I'm just tired.

She's read about the condition, she understands how it affects people but all she says "thats them, not you Helen"...it doesn't help that shes watched me suffer with depression for years, so she is used to hearing a lot of negativity from me. It's as though now anything I say is pessimistic - even when it really isn't! It's so frustrating. I love my mum to bits and I don't want to fall out with her when I go back to live with her for a while, but I can see this causing quite a bit of upset. She wants me to fight, and I am fighting, getting out of bed every day is a fight.

How can I help her understand that I'm being realistic, not pessimistic?

03-27-2013, 02:22 AM
she may understand .... http://notdoneliving.net/openletter/cfsfibro

03-27-2013, 04:29 AM
I'd had this same problem with my daughter. She believes that if I live healthier and eat healthier I can extend my life. This is the way we should probably look at things. I like Steve's link it looks real good. I'm going there myself. Remember even in our family relations it's always two steps forward and one back. But we are still going forward. You will be able to explain better when you are with her and she can see for herself. People who don't live with us don't really understand.

Big Hugs and Good thoughts your way

03-27-2013, 06:46 AM
This is a problem we all face we the healthy. When they get sick, they get better. They don't understand chronic illness. Steve gave you a wonderful link and hopefully it helps. In time, with a little more understanding of the disease, maybe reading The Spoon Theory, she will come to understand better. You may also want to let her read here a little. It might help her understand better also. She could ask questions that she has.

just know that we are here for you and that we love and care about you. That doesn't stop no matter where you live

04-02-2013, 02:14 AM
Tgal you are always so kind, thank you, and to Nonna and Steve.

I think with my Mum it will be a difficult one. She understands chronic illness and doesn't for a second doubt the pain and fatigue...but just not sure she'll ever grasp how hard it is to be happy and smiley all of the time. As someone who suffers on and off with depression I find it so hard to be happy as it is, even before I got ill, even with treatment for my mood disorder - silly really, how it can be so hard to be happy.
Then since the illness it has become even harder...I try, and I smile, and most people don't even know I'm ill, even people who see me every day...so behind closed doors I like to take the mask off and just be ill and be sluggish because it's easier. Behind closed doors I like to be as I am.

I just want to disappear into a cottage in the middle of nowhere, with a months supply of groceries and fire wood and a beautiful dog to cuddle...and just stay there for a month. I want to stay in my pajamas the whole time!

06-08-2013, 01:26 PM
Is it just me or are these opinions just like the attitudes experienced in thet "5 stages of acceptace of death" thing they talk about. Except its not us, its our loved ones. Its as if they are stuck somewhere in the denial part and the nut of all their argumrnts is "you just have to get up and go" or some other crap that really just tells us to buck up and stop having lupus. They need to realize that Lupus is not an attitude, its a real disease.

The key to living with my situation is to radically redefine how I handle ambiguity, which Lupus embodies.

06-09-2013, 01:41 AM
Hi Helen,
I understand what you are going through. I have found very few people who see a difference between acceptance and resignation. It's why I keep a lot of my illness to myself because I hate hearing the judgment and seeing the pity. I am struggling to accept it myself. For me to feel accepted I need to talk, people think I have chosen to give in and argue then I don't feel accepted. So I have stopped talking about it.
I'm beginning to think that some people just don't get it and maybe that's their 'part' to play in this. Maybe we need people close to us to challenge us and maybe we need to be able to say "I can't hear that today, I'm trying to be realistic and live the best way I can".
My family are very supportive and I trust them, but I still can't share it all. my husband seems to think that I think the sun is making me poorly because I read it on here, he doesn't see that I need to protect myself from it as if I KNOW it's bothering me. Else every attempt to deal with this disease is hopeless guess work. Sorry, I'm trying to describe it and I dont think I'm doing a very good job!

But here, we DO understand the need to take every symptom seriously and we DO understand the difference between living in hope and living in defeat.

Maybe it's good that people don't get it, it means they don't have to suffer the helpless swirl of emotion that we do. I wouldn't wish it on anyone. I don't think my keeping silent about it is the answer tho! LOL If I find a happy medium I'll let u know!

Wishing you a good weekend x