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I Just Can Not Understand


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#1 epasen

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Posted 07 December 2007 - 10:09 PM

I don't know what to say or how to feel anymore. It feels like I just can't live in my own house anymore.

I've had several bad days this week: constant pain on shoulderblades, knees and left side, I went to rheumatologist and we did some tests, terrible period in school and all the hobbies and social stuff to take care off. I'm tired, more tired than I've ever been. And how does my mum react to that?

Not well. Normally I spend the time I'm home in my room, but tomorrow, when I couldn't sit anymore I laid down in our living room. Mother asked me why am I like that and I told her that I'm in pain and tired. She basicly got angry with me because of me being sick! Started yelling at me and suggested that the pain is just "in my head", not a real pain at all. I told her I took 800 mg of Ibumax yesterday but I didn't help, and she got more angry, basicly claiming that it's my fault that medicines don't work for me.

It's like my parents are waiting for some miracle to happen, like this is a flue and the pain will go away and some day I'll just be totally cured and don't have to worry anymore. It's really hard to be sick and just wanting to rest while someone is accusing you for having this sickness on purpose. Like I ever wanted to get sick and chose this on my own?

My mother doens't understand that no matter how many doctors I visit, no matter how much time goes by, this won't heal. I've learned to live with this and so must she. Yelling at me and accusing me is not a solution and it hurts really bad. How more immature can my own parents be?

I know it might be her way to be worried, but it makes me feel even worse than I feel right now. It's not fair to accuse me because of all of this. It's not my fault. Or is it?

The other way my mother makes this all feel worse, is that she won't let me be sick. If I tell her that something's wrong with me and I'm feeling sick, she automaticly starts a) yelling at me B) telling what she thinks I need to do, which isn't really helping at all, just increasing my stress, or c) starts telling how sick she really is. She's having rheuma on her joints but it's all controlled with medicine and stuff, she can get help for her disorder. I don't have the same options and luxury with my conditions.

She just don't understand.

Even that I know that I'm not doing nothing wrong here, trying to act like and adult, a mature way, her behaviour makes me feel like I'm just a teenager and doing actually something badly wrong by being sick. It doesn't help at all. I just can't keep this all inside of me anymore. It's really hard to live within the same walls with her.

What am I doing wrong or is it my mother who's acting in an immature way?
Thanks for reading this,
Emmi

#2 susie54

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Posted 08 December 2007 - 03:33 AM

Dear Emmi,


As a parent of children, now grown, I think the parent feels a responsibilty to help their children be well, not sick. Feeling guilty because they cannot comprehend this disease, they may respond in anger and it seems as they don't care or just can't understand your pain. I would suggest a counselor or support group that you both could attend and help each other understand the other's needs.
Or maybe you could go to your doctor and ask him to explain the reason you are in pain alot. My family members are not very knowledgable about my MCTD but are companssionate when I need it. I hope you can reach a compromise. SUsie54

#3 Vee

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Posted 08 December 2007 - 03:58 AM

Oh Emmi,

I'm so sorry your mother is acting like this. Being a mom, I'm thinkin' that maybe it's the frustration of her not being able to help you. I know I would feel a tremendous guilt if one of my children had disease. And I also believe that parents need someone or something to put the 'blame" on. I'm not making excuses for her actions, just trying to put her shoes on. Can you go to her and talk to her? When she isn't stressing about things? Ask her if you and she can have an adult conversation without yelling. So you can calmly explain to her that the pain you feel is real. Just like the RA she has, but you can't get relief from yours. I have both RA and Sclero, and each one is painful, but a different kind of pain for each. Just be open and honest with her. I'm sorry that you seem to have to be the adult here, but maybe you can make her understand that her actions are making you feel bad about yourself. No mother should ever do that for any reason.

I'm thinkin' of you today. Try to keep your chin up. You know we are all here for you.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#4 bunny pomar

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Posted 08 December 2007 - 04:36 AM

Emmi,

I think that it is hard for your mom to accept that you are so sick and she can't do anything about it. People handle sickness in different ways and I think your mom's way id denial. She may even feel like in some way it's her fault. Try sitting down with her and really talking about your feelings and fears about the disease and maybe she'll open up to you about how she feels. It is hard to have this disease and not have family support. I hope things can turn around for you, good luck and I hope you are doing better.

Bunny

#5 Sweet

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Posted 08 December 2007 - 05:19 AM

Hi Emmi,

Oh love, I'm so sorry. I know how hard this must be on you. I think Vee has a good point. As a mother we want to be able to "fix" anything with out kids, and when we can't we feel frustrated! Your mom also may be having a tough time accepting this, being in denial. I'm glad that you have us here to vent to, to understand, and be there for you. I think it may also be a good idea to seek out a local support group. Someone close in distance that you can spend time with. Is there any such thing in your area?

Know we care very much.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 bookworm

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Posted 08 December 2007 - 09:06 AM

Hi Emmi,
I agree with all that has been said. I wonder if you could get your doctor to talk to your mom. Would your mom agree to go along to one of your doctor visits? Maybe you could tip the doctor off in advance so he would make some time and be prepared to speak to her.
Meanwhile, would she read anything on the subject of sclero if you printed it out for her?
Would she read the letter you sent to us? I thought it spelled out exactly what was going on and how it's making you feel. It might do your mother some good to read it.
I am really sorry you are having to go through this because family support really means a lot. I hope things improve around there.

Mary in Texas

#7 Margaret

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Posted 08 December 2007 - 01:30 PM

HI Emmi ,

I am so sorry your Mom can not handle your disease. Will she sit down and read many of the forum messages here? There are so many that deal with fatigue, pain, esohageal problems, etc. Perhaps if she read some of them she will see that it isn't in your head. As for guilt, I sure do feel that way with Gareth being the one so sick and I am heathy. I don't yell at him, though, 'cuz you guys have educated me on all your 'feelings'. I'd be willing to e-mail her privately if you feel it will help you any.

Take care, Everyone.
Margaret

#8 Sam

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Posted 08 December 2007 - 04:44 PM

Emmie I am sorry to hear that you have to go through that, it sounds like mom is scared and doesn't realy know how to react. My mom use to say to me your always tired and dont feel good. Then she went to the doctors with me and realized I was not faking.

I use to get sick when I was growing up. Never felt good. Took naps everyday and I still do. My dad thought I was lazy until I had gone into the hospital for some medical problems I was having. now they know how I feel and they support me .

Is there a support group that you and your family can go to, maybe seek some family consult would help. Has your mom ever came on here and read the post. Well Emmie, It sounds like you have a good head on your shoulder. Try not to let it stress you out to much. you take care and know we are her for you anytime... Love and hugs Sam from Ohio
Sam

#9 epasen

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Posted 09 December 2007 - 03:21 AM

Thanks for your replies,

I totally understand my mothers worry. But acting like I'm the one who's fault everything is isn't really helping anyone or anything, it makes just all feel much worse.

I printed some info for my mother and I hope she can read it objectively, without trying to "know better" than what's in the text. Hopefully I can make her understand at least something.

Take care,
Emmi

#10 Sheryl

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Posted 09 December 2007 - 04:17 AM

Good day to you Emmi,
We have a paper called the Spoon Theory. It explains to a degree how we feel and save our energies. I don't know where it is located on our sight, maybe someone could post it again for you to read through and possibly give to your mother to read. I think it will help a lot.
We as parents have pain and have learned to work through it and deal with it. Coping is something that is learned usually through some pain. Your mother with her arthritis still has to clean house, cook, and do everything that gets done daily no matter how she feels. She is trying in her way to teach you that sometimes you have to continue working through some of the pain.
Also, she sees you happy and running around and doing things one minute or on a given day, and can't understand how almost instantly you are worn out and exhausted. She knows that 10 minutes ago you had a ton of energy. But, maybe you forgot to reserve some of it and now the pain or exhaustion takes over. We all would like to lay down and forget we are sick at times. Just don't lay down to long or the process will get control. Exhaustion breeds more exhaustion. When we go through those severe fatigue peroids it seems no matter how much rest we get we keep needing more and more. I haven't figured out and it appears no one else has figured out how to get rid of the exhaustion that overcomes us, for sometimes weeks at a time. It comes on quickly and it usually seems to go away just as quickly.
If you are in pain on a give day and you mom says something that hurts you, maybe you can ask her to tell you what she needs done today or this week that you could do on a day that you are feeling great. We don't know when we will feel worse. Have a list of routine things you normally do and keep them done on your good days so that you can rest when everthing is done. Within reason. If you know you need to vacuum once a week then don't wait for the day or instant your mother wants it done. You know it needs to be done. Work it in when it is good for you on your time. It gets done and everyone is happy.
I hope you and your mother can figure out easier ways to achieve what needs to be accomplished. She's the only mom you will ever have. You get her for life. Love and enjoy her while she is able to enjoy things with you. One day the tables may be turned. Sheryl
Strength and Warmth,
Sheryl

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#11 lizzie

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Posted 09 December 2007 - 04:38 AM

Dear Emmi, I'm really sorry you are having such a hard time at the moment.You are right to feel upset and shocked by your mothers reaction - of course your mum shouldn't shout at you for being ill, its not what you expect from a parent, who are the people that love you more than anyone else and I am sure would truly give their life for you. However, all humans are flawed and so we don't always behave the way we should. I have behaved very badly and irrationally at times of stress both as a daughter and as a mother. When my mother was terminally ill with cancer and was living with me I would sometimes be irritable with her because I was tired, worried and, selfishly, just wanted the problem to go away and to have my life back as it was. I'm a bit in your mother position now in that my son has a chronic illness (renal failure) and I have SSc. I worry about him and the future constantly, but I never say that to him, instead just nag him about his diet, lifestyle etc . I am certainly guilty of responding to his complaints of tiredness by saying that I am tired as well and that therefore it is just as hard for me to do some chore. We end up laughing about how competetive we are - at how its like playing a medical 'top trumps' (not sure if you have that game in Finland or the US). It does help of course that he is a bit older than you and has just finshed university and no longer lives at home therefore we don't have that day to day irritation that you get living with a parent!
Your mums rheumatic condition is also likely to be a long term condition that probably won't go away either, it can make her tired and despite the medication she probably has some discomfort too. I don't know what age she is , but she may also be menopausal, which can make you irritable and feel low. She probaby thinks that you don't understand how she is feeling either! From your posts You always sound so mature and thoughtful so ,even though your mum is wrong to behave as she has done, try to forgive her and above all keep talking to each other!
Hope you are feeling more positive soon
Love
Lizzie

#12 epasen

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Posted 09 December 2007 - 05:59 AM

Hey,

Sheryl, I actually once tried to explain the spoon theory to mom who took it in a very wrong way and couldn't understand at all, started to tell how she thinks the theory is suppose to go. Now with all the sclero info I printed the it to her too. (Took me for a while to translate it to a form where it sounds fluent.) I hope this time she would read it and understand it.

We've never get along with my mom, cause we're just too different and too similar at the same time. We both want to be heard and seen and understood like everybody else. Somehow when I was younger we fought a lot and ended up hurting each other a lot. Now I just don't have spoons to waste, I'm tired of arguing all the time. It's vicious circle, but I only have one and a half year to live under this roof, and then I'll move out for university. There's just too much to fix but that's okay, maybe someday we both have grown up so much that we can work some things out.

Thanks,
Emmi

#13 truman

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Posted 09 December 2007 - 10:06 AM

Emmi:

As you can see by other posts on this forum, you are not alone. My sons have done nothing to acknowledge my illness or recent surgery. I have dealt with the pain and recuperation alone, with the help of neighbors and friends. I think your mother may just not want to acknowledge you have an illness that she cannot help you with. She feels pain in that you are so young, her daughter, and that she loves you so much, she does not want this for you.

I believe your mother's yelling and anger are not at you, but at the situation. How can she stop? I don't know. Perhaps if she seeks help for her anger, if she gets involved in a Sclero group and learns the facts, if she speaks to your doctor.

You mom is feeling the pain and anger you are, but she doesn't know what to do or how to help.

May a quiet talk between you both, where you both agree from the beginning, there will be no anger or yelling, only talking.
Tru

It is what it is...........

#14 Sam

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Posted 10 December 2007 - 03:08 PM

Truman I agree with what you mentioned to Emmy. yes it is hard for parents to understand when they do not know how to handle it. I to use to argue with my oldest son we would bump head alot we are so much alike, but what one day out of the blue he told me thank you for being there for him when he needed me the most. He said I did the best job I could for our fmaily I had raised my children by myself.

Emmie, I will keep you in my thoughts and hope that you and your mom can come to gether and get this all worked out. Alot of what everyones is mentioning would be great for your mom to do. So dont give up be patient and jsut let her know and keep giving her information to read.

Love and hugs Sam
Sam