It's winter. Where is hope ?

Maybe there is no one out there like me? Winter is getting long. Not because its winter only outside,but because my physical,emotional,and mental self has been going thru winter too. Its been so dark. I have felt so weary! And i feel like a failure as a wife and mom. I have no energy and i sleep alot. Soooo after a good hard cry this morning, i think i need to change my perspective a little. Maybe i just expect too much and feel let down when "less than" happens instead. I wanted to be a wife who builds her husband up-not one whos health issues weigh on his shoulders. And my kids? I was ALWAYS gonna be the one there for them-not you tube and netflix. But like i said...maybe i need to lower my expectations. I know we can learn so much from trials in life. But sometimes i feel so weary that i think i miss what i'm sposta be learning. I need to count my blessings. I know that can change your perspective very quickly. I wanted to come on here and offer hope to you all because i know alot of you are feeling the same way...maybe i'm not to that point yet,where i can say "you can do this"!!! Because i still feel like i can't. But maybe we would all do well to expect less out of ourselves...at least if we are the kind of person like myself who tends to be very critical of ourselves. Am i connecting with anyone out there ? please tell me i'm not alone :)

Never give up. You will still be the mom you want to be, and much more to boot.

I so know how you feel because I was there. I totally was. I couldn't see the end of the tunnel, and the few times I thought I saw light, it felt like it was an oncoming train.

But it changes. You get a hang of this disease. You get to know what you're feeling is associated to what. You know how to react to symptoms, and you also know when you don't need to react and just go with the flow. It's a hard ride at the start, but we are unreal people and we learn, we bend with the situation and then we thrive.

I mourned my old life. Terribly. But what I didn't know is that there is a whole new version of an amazing life waiting beyond diagnosis. Where doors have been closed, windows have opened to show me views I had never imagined before. Know that this is waiting for you too. You, your kids and your husband will all be better for this experience. I promise. Before getting sick, I never even thought of the possibility that a single thought, inside a single brain can affect positive change for many. Now I know that this can in fact be the case, and I'm going for it like a dog with a bone. I will not stop until the whole world knows about autoimmune disease. Didn't imagine that being a possibility as I sat at my cubicle, typing away on my keyboard for 'the man' and his agenda. Now it's all my agenda, and I trust that it's a good one.

You will get your energy back. It wont be the same as before, but it will be more than enough to allow you to do the things you miss and a little extra to do something special with.

Here's what I've learned from 5 years with this disease 11 Chronic Illness (Autoimmune Disease) Survival Tips | Find The Common Thread Foundation hope it helps.

Winter is a dreary time for alot of people and there is even a condition (S.A.D.D. ) that some people get. I know it brings me down. I HATE winter,I Hate the cold,I HATE the fact it gets dark so early, THE only thing I like is the clothes and boots ( a girl thing, I quess ) But ,for me anyway, the lack of sunshine and being able to get outside and smell fresh air really makes me tired and not want to do anything.But I do push myself. I have just recently joined I gym and I go 3 times a week.That gives me a boost and know I am fighting these damn pred pounds.
I think you will feel better in the spring but until then you need to not be so critical,you can't go on expecting less of yourself or you will just end up a couch potato. Do what you can on days you can, even if its just a little and evently you will start to feel better about yourself. Think positive and say "you can do this "

Thanks for the encouragement guys. Wish i could say this is all new and i just need to adjust, but i've battled wegeners for 14 years now. I've had many ups and downs. I know they come and go. I am currently in a flare and on prednisone...and sure thats much of the culprit for singing the blues. Sorry you have to listen. I promise when i feel better, i'll try and be an encourager then :)

You never have to apoligize for the way you feel and you know you can vent anytime. So you know the ropes and that things will get better.:hug2: Hang Tough !!!

Well its summer here in Australia - yippee - NOT

It's freezing in Melbourne and wet. It's humid and wet in Queensland. It's Hot in Western Australia.
It's freezing in Tasmania and so on.

I know it is not the cold that you guys experience, but it's supposed to be Summer, and here we are all wearing jumpers and rain coats, socks and scarves.......in SUMMER.

Did I mention that it is supposed to be Summer on this side of the world - LOL :razz:

I for one, don't mind the cold, because you can always put more clothes on and wrap up in a blanket and put the heater on.
When it is hot, there is only so much you can take off

Blessed, yes you are. Like Marta said, you may not feel like it at the moment but you will.
You have a husband and kids that love you and things will get better. You will get through it :hug1:

You are definitely not alone. You have expressed exactly what I feel most of the time. Before dx my daughter was my whole life. My daddy's little girl. I have to say I was a great dad.
Now. I'm mediocre at best. I'm too damn tired to get up and do anything anymore. I watch her go to her mom more and more with things that used to be sacred to me. I'm glad she has a mom too, but sometimes it seems like I am just in the way to both of them.
I've brought this up on this forum before, sorry if I'm predictable and redundant but I really struggle with it.
Another example is I used to want to pick my family up and move to Australia - I feel America is in a death spiral - but now I guess we,ll just rode it into the ground, cause I'm too tired to get up the motivation to try something like that anymore.
Really sometimes I feel if i lose my daughter - what's the point of fighting this off anymore.


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

I feel you in SO many ways. First of all, it IS winter and ... for me ... in California (please don't hate me winter dwellers) we are getting bathed in Sunshine. At least in my part of the state. It has been 76 for the last two days. This depresses the HECK out of me. I love the rain. I love cloudy days and cold. I love seasons. I was looking forward to snuggly weather and instead I am having a forever Spring. Yes, I know, "Stop whining" says everyone buried in snow. But it's true.
And, on the other note. I hate being less than who I was. I hate that my husband has me for a wife. Me, who can't do what I used to be able to do. Me, who is only 35 and wants to lie around as much as possible because I am so tired. I think often about how I should set him free.
Ugh. This thing ... it's a monster and I don't like it. But, honestly, does anyone?

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Originally Posted by im so blessed

Thanks for the encouragement guys. Wish i could say this is all new and i just need to adjust, but i've battled wegeners for 14 years now. I've had many ups and downs. I know they come and go. I am currently in a flare and on prednisone...and sure thats much of the culprit for singing the blues. Sorry you have to listen. I promise when i feel better, i'll try and be an encourager then :)

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You should not be apologetic for getting on here and singing the blues, as that is what this place is here for, as well as for more upbeat posts. You are definitely not alone. We have all been there, or are there now. Most of us get on here to vent at some point, now and then. Since original dx and treatment, I've had my flares in the winter. I think there are reasons for that. The weather, the recovery from any stress the holidays caused, etc., may easily take a toll on our overall well being, and Wegs will see an opportunity to sneak in. Luckily for me, it hasn't happened this year, yet. Which makes me feel I'm in recovery mode more than ever before. As a 14 year veteran of Wegs, you are in a better position than I, or most, to see the overall picture of the ups and downs. But that wouldn't lessen the disappointment of once again having the disease take hold, after you'd been out of the woods for awhile (I don't remember the number of years you might have been in remission). As for letting down your husband and family, that is not your fault, and I doubt they feel that way. Anyone can get a disease or become debilitated through circumstances beyond their control. I do think things will get better for you. In the meantime, we are here. :smile1:

Thankyou Anne.And you brought up a good point. I think all of my flares have been in the winter. I'm very suspicios of insufficient vitamin d. I just had mine tested and it is at 21. Thats pretty low i think. I looked in the archives here and found sanges thread on vitamin d. I think we would all benefit from checking our numbers.

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Originally Posted by im so blessed

Thankyou Anne.And you brought up a good point. I think all of my flares have been in the winter. I'm very suspicios of insufficient vitamin d. I just had mine tested and it is at 21. Thats pretty low i think. I looked in the archives here and found sanges thread on vitamin d. I think we would all benefit from checking our numbers.

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I take 2000iu of VitD3 along with 2000mg. of Calcium each day, as recommended by my PCP several years ago. But I don't know enough to know if it is enough. And we have a shortage of it from the sun right now, for sure. Sounds like Sangye's thread is worth revisiting, as are all of hers.

No, you are not alone, you are just brave enough to share your feelings. Everyone has down days or times when we question how well we are doing in life or how we measure up to what we perceive to be other's expectations of ourselves. Mine usually strike in the middle of the night when I can't sleep or reading about other people's lives and what they are doing. Facebook can be a prime example of this, a lot of people want to project what a perfect, happy life they have and you don't see posts about poor health, marriage or financial stresses, struggles with parenting or family, etc. So, I have to consciously remind myself that everyone has struggles and no one is perfect, we just can't always see that. You sound like a very loving mother and wife and there is nothing more important than that so you are a total success! I bet your husband and children think you are the best wife and mother in the world. So yes, you are right about lowering your expectations. Good enough can be a lot happier and more peaceful place to be than unattainable perfection.
I have talked to a counselor several times when going through major life stressors. I found it to be very helpful as they can help you put things in perspective and help change negative thinking, and always felt much better afterwards. Many workplace employee assistance programs offer free counseling sessions to employees and their families from a trained professional. If a down mood doesn't lift or starts impacting your life negatively, talk to your doctor. Depression is a biochemical disease no different than heart disease or diabetes and their are medications that can help.

I would echo the above post. Wegs is a depressing and life changing event and many of us had some psych help to help us with this adjustment. Many continue it on an on going basis just to help cope with the stress of this horrible life changing illness. Chronic illness often causes depression and we can sure use help with this. Good support also helps and this forum is one of the best for us too.

Well said Marta!