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Black Clouds And Rainbows


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#1 barefut

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Posted 24 October 2007 - 07:19 PM

Anybody ever feel afraid to get excited/hopeful about the future/life for fear that as soon as you do your sclero will take a turn for the worse?

The last time I was excited about my future I was slapped with a sclero diagnosis. Kinda makes me gun shy about getting excited about anything.

For me, living with scleroderma is a delicate balance between functional denial and waiting for the other shoe to fall. Probably not unlike a cancer patient waiting for their 5 year mark of remission to pass so they can breathe a little easier.

But with sclero, there is no such magic number. Even when I'm feeling good and functioning, there's always going to be there, in the back of my mind, the little black cloud raining on my parade and sending out invitations to my pity party.

I have learned that bad stuff happens when you least expect it. So I expect it. But I have to expect it in the back of my mind and keep all the good stuff like fresh air and flowers and the love of my kids in the front of my mind.

It's nice though, when the sun shines on my little black cloud and makes a rainbow and then a bald eagle flies through it. B)

B

#2 MicheleM

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Posted 25 October 2007 - 04:24 AM

Hey Barefut. I think everyone with a long term illness, long term pain, well, long term anything (except fortunes of gold :lol: ) know exactly what you're saying. I have learned that although I am "dis eased" with autoimmune & it's many partners in crime, that when I struggle with it, I worsen. I have learned through others - friends, tv, therapists, doctors (yes you too Vee) - to embrace my situation, accept what I can and cannot do and then do the best I can with whatever situation arises. I have learned to advocate for myself, not just for my family & friends, and enjoy everyday and say thank you (sometimes I say I had a rotten, awful day, but thank you anyway) and I find the dark parts don't show themselves as often. When they do I depend on my friends who have dis ease who understand & try to make the other "dummies" around me understand. All these years later - I think almost 8 now after diagnosis - my friends still understand and prop me up and my "dummies" aren't so dumb and are starting to "get" what it all means to me. It's really all in our hands with a little help from our friends! Remember at the end of the rainbow there's a pot of gold & I'm gonna find it first!!!!!
Soft hugs your way,

Michele

#3 Vee

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Posted 26 October 2007 - 01:40 AM

Barefut,

Boy does that sound familiar! The first five years with this disease kept me from daring to hope for a bright future. Then one day after that five year mark, it was like I was looking up at that black cloud, just waiting for the storm that never came. I decided then, that I don't have time to sit and wait. To waste time anticipating something that may NEVER come my way. So I just carry my mental umbrella with me, and live! If it rains, then I'll use my umbrella. But until then, I'll plan for tomorrow, and next week and next year. Please don't waste anymore time with the what if's. Like they say, we could be hit by a car tomorrow. You just don't know what is coming your way. It's a journey, anyway you look at it. Ours is just a little bumpier! So get some super shock absorbers and get an umbrella and get out there and LIVE!

Lots of Happies to 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 epasen

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Posted 26 October 2007 - 09:43 AM

Hi barefut and everyone else,
that sounds familiar to me too.

I'm young, and I need to make plans for future. Our society is planned that way: you have to schedule your life and make plans for what are you going to do after graduation etc etc. I'm really trying to be optimistic and all, but it's sometimes hard when you always have to remember that you don't have every same option than all the others have.

You have to consider every possible option when you're making plans, when you're sick. It's really stresfull.

But while I'm able to do things, I will do them. I won't let this all stop me, cause there's no point. Life is too short for worrying all the time.

Emmi

#5 barefut

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Posted 26 October 2007 - 04:33 PM

Hi Vee, Michelle and Epasen,

All of your replies are right ON.

I didn't mean to imply that I feel hopeless in any way or that I am letting my sclero stop me from planning for my future or going for things I really want to do. Just the opposite really!

I just find that whenever I do find sucess or things suddenly going my way, I always put my joy in check, never letting myself ever get too excited about anything. In retrospect, I have done that even before my sclero diagnosis.

I don't know why I am like that. May be something for the therapists I guess... :huh: :lol:

B

#6 Vee

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Posted 27 October 2007 - 05:49 AM

Hi B

I know what you mean. As positive as I try to stay, there is always that little niggling in the back of your head that says, don't set yourself up for a fall. I've alsways been that way too. Almost like I think I don't deserve the happiness and I'm afraid someone or something will pull the rug out from under me if I get to happy. I've learned to ignore it for the most part, but that doesn't mean the little voice isn't still there.

Hmmmmm.......little voice? Maybe your right about the therapist part!! :lol: :P
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#7 barefut

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Posted 27 October 2007 - 11:29 AM

Exactly Vee!

Exactly! - Don't want to set myself up for a fall.

Exactly! - On a subconscience level I must feel I don't deserve happiness.

Exactly! - If I get too happy something bad will happen.

A therapist would have a field day with me! :blink: :lol:

Don't worry. Be happy!

Love ya,
Barefut