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I'm Not So Tough.


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13 replies to this topic

#1 barefut

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Posted 27 May 2007 - 10:10 AM

I have learned that you only need to scratch the surface of me to find out just how emotionally fragile I am.

I am not sure I believe that the more I am dealt the stronger I get anymore. Instead I think the more fragile my shell becomes.

It's all lying there just under the surface and it only takes a hand on my shoulder to release the floodgates of emotion that have built up.

More than anything I feel insecure, unsure, alone, not safe. Walking on eggshells, living in a house of cards......and overwhelmed.

Does anybody else ever feel the same way?

Barefut

#2 jefa

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Posted 27 May 2007 - 11:04 AM

Barefut, living with scleroderma is a difficult enough challenge for anyone to face, but when it comes down to it, we are in spite of it all, only human beings with human frailties. You have been so strong and supportive for so many of us, here, but you have to know that we are all here for you, too.

Yes, indeed we all feel that way at times: insecure, unsure, alone, not safe.Overwhelmed. That's why this place is such a good place to gather and exchange information, emotional support and hugs.
Hugs to you, Barefut, and
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 WestCoast1

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Posted 27 May 2007 - 11:34 AM

Barefut....Yes, yes and yes. You are not alone in your emotional state. I will take a guess here, but many of us work extremely hard to keep that smile on our faces when we leave the house. Heaven forbid that someone actually ask us, and genuinely want to know how we are doing.....those flood gates will be breached!

My only words of comfort to you are to give this all a little time, then look back and see all that you have gone through and take notice of the strength that YOU possesed while you dealt with all of these experiences. Its okay to express your emotions and share them. Each day that passes is a day to hopefully feel better, learn something new or help someone else.

You are already a great inspiration to all of us. I will send you an internet HUG~xoxo
*WestCoast*

********

#4 Patty

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Posted 27 May 2007 - 12:27 PM

In a word........YES. Not too long ago I started on meds for this and now I seem to feel much stronger.

I hope that you start to feel better soon.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#5 Clementine

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Posted 27 May 2007 - 12:54 PM

Barefut,
You are not alone. I wish I could give you a big hug and take you out for a girl's day to cheer you up. It is difficult to live with Scleroderma. It's scary not knowing. Some days I struggle with putting on that happy face but I have learned it is so much easier to deal when I wake up and decide to be happy and make it a good day rather than focus on the bad aspects of my life. Now, whether this is a healthy approach, I don't know. I think I live a bit in the town of denial.
I hope you know that to me personally, you have been such a joy to get to know and you brighten my day when I get your emails and read your posts. So, hang in there baby.
xo
Jennifer

#6 Sherion

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Posted 27 May 2007 - 01:25 PM

Barefut, I know exactly how you're feeling. There have been times when a friend has sincerely asked me how I'm doing that I have burst into tears! Oh course, I then feel foolish, but sometimes the emotions are right there on the edge. I know from reading here that you've been through a lot and I wish you all the best in the world. You do seem to be a very strong person but we all have really low days. Just know that you're in my thoughts for better days.

Sherion

#7 RememberingToSmile

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Posted 27 May 2007 - 02:32 PM

Yes - and hang in there sweetheart. You are not alone.

Those well meaning, supportive comments, like "you look so good" and "it's amazing how well you are dealing with this" can sometimes trigger a desperate, visceral response from me... and other times I am very proud of myself for keeping perspective.

I am most grateful to one particular friend and husband who provide both support, strength, and normal-sy to my daily life. They watch out for queues as to my needs, and always seem to know what to say and do to help me through the moment. It helps me deal with the other friends and family who are well-meaning, but trigger too many conflicting emotions. Sometimes I feel like I am dealing with their issues - and I just don't have the energy to do that any more....

What do you do to get through the rough moments?

-RTS

#8 Sweet

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Posted 27 May 2007 - 02:40 PM

Absolutely!

There are times when I'm like a duck - everything roles off my back. Other times, it only takes a look or a comment from someone and I'm a virtual basket case.

Sorry you are feeling so down right now. I hope that knowing we all understand will make you feel so not alone.

Love you girl!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Sharonvandee

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Posted 27 May 2007 - 04:31 PM

Barefut I understand how you are feeling I too struggle with it all, just when I think I have cried my last tear and come to terms with all that is and may happen I hit another downward spiral.

I am lucky though to have a supportive family and husband that try their best to understand how I am feeling still though I often feel alone.

Being referred to this forum has been a wonderful chance for me to feel less alone finally I am able to see and read about other people who are going through what I am and somehow that makes me feel less alone.

warm hugs and hope you feel a little better soon
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#10 nan

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Posted 27 May 2007 - 04:47 PM

Barefut,
You have gotten some good replies. Scleroderma is the hardest thing I have ever had to deal with in my entire life. I am blessed with an incredible husband, a pretty comassionate 15 year old son, a support group in my neighborhood, and this site! I still have times when I have the feelings that you have now. I have admired you from the first time I read one of your posts. I don't know how you raise two children as a single parent with no support from your husband. That is a hard enough task if you are healthy. I send warm thoughts and hugs your way. Hang in there and I hope tomorrow will be better.
Nan :D

#11 Helen

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Posted 27 May 2007 - 07:49 PM

Hi Barefut

I find myself putting on a brave face so as not to upset my family and friends. They can't believe how well I seem to be dealing with it. I think this also helps me too as I'm scared if I start crying I might never stop. The only time I really cry is if someone seriously asks me if I am ok and do I need counselling, then the floodgates open. I read these posts about twice a day and it really helps me.

Hope you're feeling better soon

Helen

#12 Margaret

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Posted 28 May 2007 - 12:58 AM

Barefut ,

My heart goes out to you.

Please.....if you get so low that you hit bottom and can't stop the crying, see a psychiatrist. I know....one more doctor to add to your list. But, Gareth's reg psych (for the autism) brought in another psych who deals with the psychological affects of autoimmune diseases. I have mentioned this before.....autoimmune diseases CAN mess up the chemistry of the brain and depression is the result. Stress, alone, which is constant in your life, is the worst culprit. You people are going through so much.....don't be ashamed to ask for help from a psych.

Take care, Everyone, and Happy Memorial Day to those in the States.
Margaret

#13 Sam

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Posted 28 May 2007 - 03:06 AM

Barefut I agree with eveyone on here, Yes I too get that way myself. lately more often. But remember we are here. I can remember me mentioning that I was a very strong person until my husband left me and my children and that is when I started feeling like that I'm not as strong as I thought. what happen to the girl, etc. but I am here and we all are very strong realizing it or not. You are a strong person so do not forget that. You take care you know we are her for you anytime.
Sam

#14 barefut

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Posted 02 June 2007 - 04:36 PM

Wow........

Thanks everyone! I'm sorry I let this post get to page two before I replied.

I have read and re-read everyone's replies. You all always make me feel so much better! There is no way to thank you enough for that. I hope I have done the same for someone else out there.

Love yous!
Barefut