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Hi every one I am so fed up with feeling ok one min and then the next not ok I was on my way to work waiting for the bus and I started to feel unwell people say what do you mean unwelll and I cannot explain I managed to get home collapsed on the bed very out of breath ( i do have lung damage ) i did eventualy manage to undress and get in the bed but I couldn't move I was in so much pain my phone was in my coat pocket and I couldn't get out to get it but I really did not want to phone my boss as she just does not understand she always says what do you mean unwell have you been to the doctors I dont need to go to the doctors I know whats wrong with me im just fed up trying to expalin to her that I cannot not control this , i am feeling a bit better today and feel better for having a moan Lynn

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Hi Lyndylou, we don't mind you having a moan because I think we have all been their!

 

I know what you mean about the ups & downs of this strange illness, one moment I feel great & then it hits out of the blue & I have to stop everything to rest & get myself back together again. It is not easy when often you look fine on the outside but feel dreadful on the inside and people at work don't seem to understand.

 

My work certainly do not give me any understanding & expect you to be working on all full cylinders at all times!!!

Do you work full time? Is there chance of doing part time?

 

Thinking of you

 

Jensue

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lyndalou, I too understand what you mean unwell. I just take it as it comes. That is one thing why I am so glad that I just started my own business from home, if I dont feel good I only answer to myself, and if I dont want to work I dont have too. I think that is why we get so stressed out even more when an employer doesn't understand why we call off when we dont feel good. Well I'm glad your feeling better today so take care, Sam


Sam

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Hi Lyndylou

 

Sorry to hear you had such an awful day....I think you should moan all you want! :) After all, you have an endless supply of ears here that are ready and waiting for you!! Glad you got some rest at least and I hope tomorrow is even better for you!


Sending good wishes your way!

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Hi Lyndylou, my dear, its not moaning, its being truthful about whats really going on inside of you. These are realities of our days, and they need to come out. I believe for me, years of bottled up feelings have helped to contribute to my illness. These feelings turn to stress and anger, depression and anxiety, all the recipe for an illness. I am learning, that its ok to say how you feel and no one is going to hate you for it, in fact, ive found the opposite, people love you even more and their hearts soften, it provides a window into your heart. Relax Lyndylou, truth is our freedom Susannah x

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hi lyndylou,

i dont think your moaning at all,and if u were your intited to do :rolleyes: and I think your a very brave and strong woman who goes to work, i just couldn't see myself doing half of what u do , as im bed ridden most of the time, its lack of knowledge and ignorance from the people around us who dont understand, maybe your boss could be more symaphetic and take a look and get to know about what your going tho, after all u work for her and she could understand a bit more, i dont mean her going and getting right into it in dephts but a little understanding could safe u a lot of energy trying to explain, my thoughts are with u warm hugs from jaxsx

(hope this makes sense sometimes I can't explain and write down the things I want to say it sometimes comes out googly dee goog)


live life for today and not for tomorrow

 

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Hey Lyndylou and All!

 

I totally agree withjaxs... working and having our illnesses is very tough, for sure. As you intimated, folks who don't have knowledge about these illnesses... really have no idea "what is". And... the ups and downs make it even more difficult.

I get that completely... I can't even remeber the last time my entire body felt 100%... yet, for those who are braver than I, such as yourself, continue in the workforce, nevertheless.

I started withsymptoms in 1991, but couldn't work anymore... plus my rheumatologist insisted I stop working... 2 years before I actually did. !997 was 2 years after I finally got diagnosed... I simply couldn't do it anymore. I hurt so much, was tired all of the time and I felt like I was climbing a mountain constantly :(

So, Lyndylou... please take care of yourself.

Big, soft hugs...

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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