To My Lovely Family

[sbeach78]

The support I have received it's been just humbling. Between family, friends, and surprisingly total strangers. I guess you never see the caring side of the world unless you really need it. To all the people that have and are supporting me through this I cannot thank y'all enough , but to my wife, nothing I can say could show much it means for her to be by my side. She has takin the burden of the house, bills, and kids. She works just to come home and work some more. Not a day goes by that I am not greatful for my wife I fall on love with her everyday over and over. Just thought I would brag a little feel free to add your stories below..

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[annekat]

I so happy you have her, Shawn, and I'm sure she feels the same way about you even though she is having to shoulder extra burdens right now. Someday you will be able to contribute to the household the way you did before and you can treat her to something extra special. You are blessed to have each other. BTW, you are a good looking couple.

[marta]

Shawn, I am totally picking up what you're putting down.

I thank god, or the universe, or whoever is in charge for my amazing husband. Without him I have no idea where I'd be now. He was so solid throughout the whole ordeal but in the early days when I was completely useless, he did it all. I've always thought that it's much easier being the patient than the caregiver. As patients we feel like we're doing something toward the end goal (getting better) by just dealing with the pain and the crap at the moment, whereas the caregiver feels helpless in a situation where they can't do much other than try and make you comfortable and eliminate the stress. It's a hard, thankless job. I just experienced it with Brian (the tables got reversed a couple of weeks ago) and I felt so helpless, much more so than at any point in my Wegener's journey. It sucked.

So we have to kiss, and love, and be grateful beyond anything for those caregivers that give everything to us. I for one thank my lucky stars every single day and love the fact that I got hooked up with the best guy in the universe - in my humble opinion.

[windchime]

Shawn nice picture of the two of you. I'm glad you have someone to support you and help when it's tough to do anything but eat and sleep. Someday you will be able to help out again. It may be in a different way, but you will be able to again. Have you invited her to join the forum. If not please do so as we would love to hear from her. It might also take her understanding of wegs to another level. I'm very happy for you.

[Pete]

Nice photo of a handsome couple. Hope you get more strength soon. Wish I could give you some extra spoons...

[sbeach78]

I am still very new here what's the meaning behind spoons?

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[Michael Bell]

Hi Shawn, spoons is a metaphor for the energy we have, 1 spoon used to get out of bed in the morning, 1 for getting dressed etc. When we plan our day we try to save our "spoons" to do the things we need or want to do. No more spoons, no more things we can do that day. You will find that you have more spoons somedays than others so you have to plan your day on how you feel and what is most important to you or your family. We do tend to get more spoons to use as we improve with treatment, some of us can do a full days work, others less so at times. The new you will take some getting used to and the new normal in your life is sometimes hard to come to terms with. Have a rant on here when you need to and tell us your highs too please.
Mike

[LisaT]

It's a way of explaining the fatigue and need to ration energy with chronic illness. Link below.

The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

[BookNut]

What wonderful praise for your wife and family!! you really know what it means to be there for each other. There will be many days to come when you will have more good days than bad and you can be there for your wife and family in many ways also. My husband went on disability many years ago, and I was the breadwinner. But I can tell you, it was easier on me than before he went on disability. The constant failed attempts to go back to work were nerve wracking. We became a MUCH happier family when he finally faced it and applied for disability. Having someone holding down the home front eases many other burdens. Now that we are retired, his health issues have improved because we have assembled a good team of doctors. So, now it is my turn to be ill, and he is my rock. I could not get through a day without him. This is why family is everything! We are there for each other, no matter what! Keep in mind that not only are you blessed to have your family...but your family is blessed to have you!!

[sbeach78]

Thank you all for the positive post. Means a lot to me..

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