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Biomarker for Diffuse Scleroderma skin has been discovered!


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What a day!


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#1 queenie

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Posted 13 January 2011 - 10:32 AM

:temper-tantrum:
Don't I just feel like screaming out and telling everyone to go away and leave me alone today, but unfortunately I can't as I have my kids to see to.

I have awoken this morning and feel like I am coming down with a flu and a cough and to top it off I am unable to walk today or move my right shoulder as it is frozen stiff. My hands are like balloons so tight and swollen and I feel so tired I just can't concentrate. I have no movement in them at all.

I can't tell my mum as she will begin to over fuss and won't let me breathe and will try to do everything for me and I know it is what any mum would do but you know when you just want to be able to say "I'm not too good today" but then to be given a bit of space. I know that sounds really selfish and I'm not a selfish person and I would never ever let my children know just how bad it is, so I constantly hear myself saying "I'm ok, just a little bit of pain but nothing bad" when my insides are screaming to be able to tell the truth. The slightest movement in my neck and it is cracking and clunking away. I've ranted a bit here and I'm sorry but I just needed to get it off my chest, take a deep breath and start all over again.

Thanks for listening; sorry if I've gone on a bit but I just don't have anywhere else to turn and I'm exhausted. :excl:

Thanks again gentle hugs for everyone
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#2 Joelf

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Posted 13 January 2011 - 08:18 PM

Hi Queenie

I'm so sorry to hear that you've been having such a bad time.

Scleroderma is a very difficult illness for anyone to understand (even Sclero specialists are unable to know all the answers to it) so it's almost impossible for the average family member or friend to realise what you're going through.

We have a link here about The Spoon Theory and other helpful strategies for coping with chronic illness which I really hope will be of comfort to you.

Remember there is always an understanding and comforting ear on these forums should you need one. :emoticon-hug:

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#3 tisonlyme

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Posted 14 January 2011 - 03:46 PM

Hi Queenie

Sorry you're having such a bad time at the moment - there are people here that understand where you're coming from..

I found the 'spoon theory' that Jo mentions a really good way of explaining things - even though you don't want to 'burden' family with your issues it helps them to understand. I have a very close friend and the 'spoons' have become our Facebook code.. on particularly cold/damp days she will pop a note on my wall to say she hopes I have enough spoons and to call her if I need any - others may think we're mad but it really helps just knowing that the support is there.


I guess the people around us are good at noticing when something is wrong but the constant 'are you ok' and feeling that you have to tell that little white lie to save yourself from being smothered, or to save them from worrying is sometimes just too much

Hope things pick up for you soon

Take care

San


#4 martinisweetie7

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Posted 15 January 2011 - 02:08 AM

Hi Queenie,

I'm so sorry you were having a bad time. I frequently go through those kind of days too. It's like you want so badly to ask for help, but those of us who are so used to being the helpers often find it difficult, especially to people who may not fully understand what we are going through.

I agree that the spoon theory is a great way to help people understand the difficulties surrounding having a chronic condition. I have emailed it to many of my friends. Some get it, and some don't. It's the ones that get it are the ones to surround yourself with! You need to surround yourself with as much positivity as you can on these kinds of days.

I'm so happy you found this forum. I have to say this has been a really great place for me to come and share things with people who understand the bad days, as well as the good. We are all here for you!

I hope you are feeling better today.. :emoticon-hug:

~ J

#5 Amanda Thorpe

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Posted 19 January 2011 - 04:38 PM

Hello Queenie

Yeah I can't tell Ma how I really am because she will just freak out, she lives next door in the annex so I see her everyday. I know she wants to help but thinking I am constantly dying doesn't really help!

I struggle with telling people how I really am, I usually go with "I'm fine" and "I can do it". Why I don't know really because it doesn't do me any favours and I don't think it benefits others either. The key is to find a happy medium...when you do let me know how! :lol:

Take care.
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