Family becoming fed up

Cassie, I'm sad to say, but yours is not an uncommon story. There are so many people who don't want to deal with the problems of others, and we lupies often end up feeling very isolated.

Reaching out on this forum is a healthy step towards connecting with people who know just what you're going through. We're here for you.

During the first few years that I was incapacitated by lupus, this forum was a lifeline for me. I hope it will be for you as well.

Not just someone, Cassie, but lots of someones! I urge you to talk to your doctor about this because you need to fight depression, but you can't do it alone.

Hi All,
I have weekly therapy with a therapist who is helping, slow goings.
This too shall pass !
Once the ortho surgeon clears me, hopefully, next week I will be back on all my meds and just waiting for them to kick in.
Thank you replying. Makes me feel like less than a drop in a bucket.
One day at a time, nothing I can't handle just one day at a time.
Cassie

Cassie1289 said...

I guess this one more set back in a long line of them was more than the family could take. My husband of 25 years keeps making comment about all the places he wishes we could go. I was diagnosed at a teenager, this is nothing new to him. Lately getting out of bed is a major undertaking. The family went from spending time visiting me in my room, making sure I had food and drinks to barely checking on me.

I find myself feeling very much like a huge burden.

Anyone else go through this? How did you get through?
There are many days when I can't hold a brush or open a medication bottle. I'm frustrated and working hard to keep my spirits up.
Thank you

Hi Cassie, I just found this site and this is my first post....why? Because the EXACT same thing happened to me just now. I came on here crying because I had to cut short a day at the park. I didn't want to go because I wasn't feeling well and its way too hot outside for me to tolerate. I did it anyway. My husband's disappointment was so palpable it made me feel horrible. I've been ill for over 15 years yet my siblings and husband still constantly ask me to go places and do things they know I can't do. So that leaves me always having to say no or going any way and having to cut every one's time short because I just can't do it.
My adult son gets it and my Mom, who also had SLE, understood. I lost her to complications caused by the Lupus about two years ago. I have felt so alone since then.

Like you, I'm so very frustrated. If it wasn't for my brand new grandson, my son and daughter-in-law, I probably would stop taking all these medicines and let nature take its course, but they want me and need me even on my worst days - they are the only ones that "get it".

I could still be happy doing what little I can, I used to be, and I still try to be happy, but not when I'm made to feel like such a burden. I'm also angry. To me, they're not being forgetful and its not like they don't know about Lupus, I feel they're being selfish.

I'm so very, very sorry you're feeling like this on top of everything else you have to go through. Please know I DO understand and from reading through this forum, others do to. xo - Diane

If like to thank Pattylatty, Acquiesce, and Diane in fv.
You all helped me very much to find me. The part that knows I do all that I can when I can. To realize that is good.
Today my husband helped me bathe and he changed all the bed linens. Next thing I knew my two girls were cleaning the house!
I even watched a movie with all of them....from the comfort of my bed. A good day. I can still give out "mom hugs" as my girls call it.
That's a good day!
Thank you all for helping me find my inner strength!
Cassie

Cassie

Sorry to read about your lack of support.. I am in somewhat similar position myself: though I am long time single, I DO have grown children.

I've recently begun to have an internal debate - would I be better to live elsewhere, far away & be ignored
rather than being close by & be ignored? Not yet sure

I am blessed to have a friend who expects an email from me daily &, if she does not get it & also cannot get me on the phone, will contact authorities.. how wonderful, yet pitiful is that?

When she recently suggested I was depressed I replied I am sad - but, like the infamous 'which came first? Chicken or the egg?' Does our sadness cause depression or vice versa ? How could we NOT be sad?

Am Reminded of one of those short stories in Reader'sDigest- remember those 'feel good ' pieces at the end of a regular article? This one was about an elderly lady, being moved to a different nursing home: one of the nurses / aides was describing how beautiful the new room & facility was, to prepare her. The elderly woman's comment was designed to remind the reader that happiness is a state of mind, not a physical place.

Re: family - When days go by without a phone call, much less a visit from them
(which is not even out of their way every single day)
or, help w/a meal when in a particularly rough episode- now & then, etc. I think of the above story & know just to expect NOTHING, now or in the future.

That MY ability to be happy depends SOLELY on me.

My bitterness, like hate, will only effect me - obviously noone cares how I feel, much less what I need !!

That said, I do not, for one minute believe I would act the same way if our roles were reversed.

And when I once again read about how others are directly mistreated, like Barbara Lee, my heart breaks just a bit more.

Interestly I've discovered that this behavior is considered marital abuse.. even grounds for divorce in some states.
think about it.. ignoring the needs of an obviously disabled person, child or adult, in need is illegal as well as morally inexcusable.

It will continue as long as the victim allows it -& the victim can pay a high price for reporting it.

we cannot change others, only the situation, if we so choose.

As stated earlier in this thread, we did not ask to be sick. Yet we are punished for being sick..
like is often the case with abuse, if 'outsiders' knew they would be appalled.
& we are too ashamed to tell. Who would believe? Or understand ?

Thank goodness for this forum & the caring people on it !

Wish I knew the answer.

Gentle hugs & caring thoughts to you'll

I forgot to mention I have two doctors appts today. I am praying I will get the ok to resume my meds again!! I have been off all meds for two months because my rheumy thought they may cause the avascular necrosis of my hips to worsen. Hopefully today I will get good news from the orthopedic surgeon!!
My next rheumy appt is on my 46th birthday, next week, he better have good news or save it for another day! Lol
Best wishes to all of you going through this or a similar journey!
No Day But Today! You have all lifted me up sharing your stories.
I'm not alone! You are not really alone!
With great respect, thank you!
Cassie

Great news, Cassie! I'm happy dancing for you.