Who does understand?

[wendiem]

style_emoticons/<#EMO_DIR#>/aww.gif Hi all,
My name is Wendie. I'll make this as short as I can. Basically as a child I had incredible joint pain, in nursing school my instructor noticed the Raynaud's. I went to a rheumy was watched for a while and diagnosed with Rheumatoid Arthritis. When I hit the childbearing years I was pregnant 6 times and yielded 2 healthy children (but problem pregnancies.) This and the fatigue I suffered sent up the red flag and it was discovered that I was misdiagnosed , and that I had lupus the whole time . (thats what caused me to miscarry, along with the anticardiolipin antibodies) I have had it since childhood (most likely), and I have been with my husband since age 16, and he has always seen me needing lots of sleep. So, when I have to take frequent naps, he and other members of his family tell me "lupus patients live long and productive lives , and you need to fight the sleep and get up and move around. You have always liked to sleep even before you got lupus." For a long time I believed this, and felt really lazy. (the house is always messy and causes alot of friction when I can't do the housework, I have a 6 and a 2 y/o also and work as a nurse)My husband always says he is sick of doing the housework and me conking out on the couch. My ANA is 1:1250 and I have the thyroiditis. I hate it also that I am constantly reminded of how I don't play enough with my kids and don't take them outside. I love them to pieces, and we do indoor things because after too long in the sun, Im in agony. I don't want to miss my time with them. They are great kids! I know I have used the word "I" alot, but I have no where else to turn! I feel like maybe it is in my head and I really am a piece of c*#p. I don't deserve my kids I guess. Someone please help me!
thanks,
wendie

[cath]

Dear Wendie,

Hallo and nice to meet you style_emoticons/<#EMO_DIR#>/flowers.gif

I'm sorry to hear that you are struggling with lupus and the demands of your family.

A lot of people here can identify with you. Fatigue is one of the major symptoms of lupus, and one of the least well understood or treated.

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I wonder if it would help your husband to understand that this is just something you CAN'T fight , that not getting your rest will make you sicker and less able to do things. By resting as you have to, you are probably coping as well as can be expected and managing to do some things. If you over do it and get really sick, you won't be able to do anything.

The same goes for avoiding sunlight. If it makes you worse, doing it anyway isn't doing anyone a favour in the long run. Don't waste energy on feeling guilty about something that is actualy the best decision you can make in the circumstances.

Have you heard of the spoon theory?

try this website: http://www.butyoudontlooksick.com/

It sounds to me like you are actually doing a very good job. You are still able to work (and Nursing is very demanding - I know style_emoticons/<#EMO_DIR#>/hehe.gif ), and you care for two small children. Your kids won't remember that the house was messy when they were small. The will remember if they got cuddles and stories and if they felt loved.

I remember reading from another member how her partner was frustrated at her limitations and didn't understand how when the doctor said she was doing well, why she was still unable to keep up with normal people. The doctor replied that ''well" for her wasn't the same as for a normal person. We live with a chronic illness, and staying alive and out of hospital is "doing well".

The other thing to think about is do you think you might be depressed? Depression is very common with Lupus, and many doctors belive it is an organic consequence of the illness, not just a reaction to being ill.
If you are depressed, getting treatment for it will make coping with eveything else so much easier.

It seems to be an unwritted rule that mums aren't allowed to think about themselves. Personally I think that is completely wrong. Please don't feel guilty that you have needs. One of the adantages of using this forum for support is that we have common experiences. People also only answer if they are up to it, so there is no reson at all to feel guilty for asking for support.

Hope to hear more from you,

X C X

[MAMAJOE]

style_emoticons/<#EMO_DIR#>/wavey.gif Oh wendy you poor thing don't be so hard on yourself of course you deserve your children. Its very hard for people to understand lupus and all that goes with it, how can they, i know i don't understand it and i've got it. the fatigue we get is not normal tiredness so please never think you are lazy cos it aint true. When i am bad i can't even stand long enough to brush my teeth my last flare up left me in bed for 3 weeks.
of course its hard not doing what you want to with your kids all us lupie mums know how that feels but i bet they love your indoor activities just as much its not worth the trauma of getting ill just to be in the sunshine for a few hours. I do know how you feel the frustration is one of the hardest things to deal with, but now i just come on this site and have a good old moan, i find it hard to talk to family and friends cos i can't be honest, but here we can and that is the beauty of it. if you ever need a freindly ear you can always mail me us lupies have to stick together, maybe you could show your hubby the site it might give him a bit more insight of what is normal for lupus sufferers. take care of yourself and i hope you are feeling a bit better.
much love
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mamajoe


LOVE ENDURES

[helloos]

Hi there.

I agree with the others.

I think the first step is your hubby and family need to understand that when you need to sleep YOU NEED TO SLEEP. You need to rest or forget it.
Maybe he should go to your appointments with you to meet the doctor so that it can be explained a little more to him.

I too think working as a nurse and taking care of a family means you are doing a great job living with Lupus.

The house is the house, it will still be standing long after we are all gone. It can wait. Maybe try getting on a schedule to make things easier and not to try to do them all together.

I understand your frustration about your children, but as someone else said I am sure they enjoy the indoor activiites. You need to take care of yourself first because if you don't you won't be able to be there for anyone !!

Please don't be so hard on yourself, we all have felt or feel the same way.

[alobreto]

Hi, Wendy! style_emoticons/<#EMO_DIR#>/wink.gif
Goodness! Gracious! style_emoticons/<#EMO_DIR#>/sad.gif You are WAY too hard on yourself, girl! style_emoticons/<#EMO_DIR#>/doh.gif If this were someone else in your life, I'll bet your estimation of them would be a whole lot more accepting. You deserve the same consideration you give to others.

Lupus causes a fatigue that is UNLIKE ANY OTHER TIREDNESS!!!! style_emoticons/<#EMO_DIR#>/afraid.gif People who don't experience it themselves don't have ANY IDEA what it can be like. They only know what it's like to be tired for a REASON and that is TOTALLY DIFFERENT from lupus fatigue. Tiredness for a reason goes away with rest. Lupus fatigue requires more than just rest. It requires an alteration of activities, too, until it resolves.

I agree that treatment for depression can prove very valuable. Many of the newer antidepressant meds have the wonderful side effect of increasing energy levels and must be taken early in the day. So there are 2 benefits instead of 1. Not only do you have a better outlook, but you feel like doing more.

As for the sun, do your relatives know that it can lead to ORGAN DAMAGE in lupus patients? Something to say to them when they say your indoor activities are not enough or don't count or whatever it is they are saying.

I'm sorry you're having such a tough time. Hubby needs to know that your lupus didn't start the moment you got the diagnosis, but years earlier. Maybe the doc could fill him in.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[angie1]

Hi Wendy,
I agree with the other ladies. The fatigue we experience is so different that just "being tired." I know for me, the fatigue feels like my whole body has just shut down and I can't even lift my head up. When that happens, I lie down on the couch and take a nap. I don't care if it's dinner time or in the middle of the afternoon (if I'm not working). My body is telling me I need to rest. Your husband needs to go with you to your doctor or have him read something on lupus and fatigue. It's not laziness, so don't beat yourself up. The fatigue is uncontrollable.
Take care and I hope everything works out for you.

Angie

[livingonaprayer]

<span style="color:#993399"><span style="font-family:Comic Sans Ms"><span style="font-size:14pt;line-height:100%">Hi Wendie,

First of all, BIG HUGS to you!! (((((((((((((((((((((((Wendie))))))))))))))))))))) ))))

I can say that I feel the exact same way you do! I am 29 years old and I have a 4 yr. old daughter. I always feel like I am "cheating" her out of something, but with the friends I've made here, they have helped me to understand that I am being the best mother that I can be. I AM HER MOTHER and no matter if I am sick, I am her MOTHER and there is no one better for her than me!! The same with your kids. Your kids will understand as long as you talk to them about you being sick. I talk to my daughter and tell her that mommy has good days and bad days. On some of my bad days, I put her in bed with me and we watch Cartoons or her favorite movie together. Of course, I rest or sleep, but we are together and that's what matters. You do what you can when you can.

You sound like you are doing an AMAZING job, handling a chronic illness, taking care of your family and working as a nurse!!! WOW, you sure have your hands full. Please don't be so hard on yourself. There are some people out there who AREN'T sick that can't handle what you are doing right now!!

Now to answer your question about "who understands", well, really only someone who knows what you are going through will understand. My family "tries" to understand, but they will never really know what people like us go through.

Keep up the good work and try not to be so hard on yourself! You are doing GREAT! If you'd like, you can PM me anytime to talk. I'm a good listener! Take care of yourself cuz your children need you.

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Always,
Dee</span></span></span>

[RAD1]

Hi Wendie,

You sound like a young version of me, bless your heart !!
It is hard for most "normals" to understand the overwhelming fatigue that we Lupies suffer, it is most devastating both physicaly and emotionaly. I used to beat myself up ( in my head ) over how I was such a loser.......... when all my friends' houses were ssssoooo clean and they all looked so good and could just do it all......... Well, you are wonder woman and you do it all and work too, so they should shut the **** up and cut you some slack!! You do the best you can and then rest or you will sooner or later fall flat on your butt. To me the kids come first, they love you even if you serve peanut butter and jelly for supper. Do your best for them and let the hubby do the chores too and don't feel so darn bad about it either. You would take care of him if it was he who was ill. And hey, you didn't marry his family either, just him. He should care more about you than what they say. But, I'm just an old 55 yr. old "been-there-done -that" lady. I wondered for years why I just did not have the energy to do things and emotionaly I did suffer for it. Now I cope so much better, not perfectly but better because I know I did the best I could with the energy I have.

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Ruth