Altered behavior - family responses

[Carolina]

Dearest Sjogren's angel, and all the other angels,

Something has been on my mind lately.

I cannot do many things I used to do easily, for one reason or another.

I can't walk very far.

I can't be outside in high humidity, or bitter cold.

Because of the arthritis in my hands I can't pick up heavy things, or open jars, or manage fine motor tasks easily.

I am trying to learn how to accommodate these changes, especially not to rush into situations and places where I might trip and fall.

Not to get up too quickly so I don't fall or faint.

I try to anticipate when my granddaughter is coming at me, so I can avoid her hurting my 'owie places'.

I try to not carry things up and down stairs.

You get the picture.

BUT, my family sees me as lazy and inert.

We're planning a big vacation in August, to meet our French family in Cuba (yeah, it's complicated to go to Cuba!).

My husband started lecturing me yesterday about exercising more on the treadmill to build up my strength for this trip.

I tried to explain that it's not a question of strength, as far as I can tell.

That I won't GO on a hike or a zipline or canopy trip.  I'll stay at the hotel and read or exercise in the pool.

That I will stop walking and wait for people if we're out, or stay in the car.

I had to do that in China when I was overwhelmingly anemic and had a chronic UTI, as well as the start of the neuropathy.

My husband can go with everyone else and DO everything.    I will try to judge, and act accordingly.

We'll have two cars , so if push comes to shove, and I can go BACK to the hotel on my own if I'm out of my depth.

But........................    everyone is worried about how I will cope!    

And some of it is not so thinly veiled criticism about how 'inactive' I am.  

An some of it is probably genuine concern that i will get sick on vacation.

OK, first vent on the subject is over.

This is just tiring.  Everyone comments on little I get accomplished, how much I stay in one place, etc.

Of course, even tho' I was never an athletic person, I was a 'get 'er done' person, and accomplished tons of things.

Now I don't even want to do much cooking, forget about most cleaning, you get the idea.

I've lost some weight (more to go of course) and perhaps that will help more than I realize.

I just hate losing weight only to regain it (that has happened a zillion times).   Well, I'll keep all my old clothes,  

Feeling sorry for my self.

Sorry

Hugs

Elaine

[Joe S.]

Elaine, After I got fibro, my activity started to go down hill fast. On trips to central Florida, the family would often go and leave me behind. I asked for lots of pictures and that they tell me all about it when they got  back. I stayed in the hotel room. During the first trips, I was able to spend two days at Disney and one at hotel. Before we gave up travel, I spent one day during the week at Disney or Universal, Two evenings out and the rest of the time in the resort.

Do as much as you can for as long as you can. Enjoy being with your family as best as you can. Some activities may no longer be good for you. Take time for you. Bring a book to read, a note book to write in, and a camera or two for photos. I brought my laptop computer to work on a variety of projects, movies, photos, journals and games. I do my range of motion exercises and meditations.

[lynnmarie219]

Carolina,

I'm sorry you are feeling this way but I DO understand. While most people in my life are not judgmental about the changes that I have to make in my daily routines depending on how I feel...there are still some who look at me and tell me that I am just being lazy... it would be better if I exercised more...quit taking so many meds...etc. I know how hurtful those thoughts and words can be from someone that you thought and hoped would understand.

I don't have any solutions except for trying to not let others words hurt...but I wanted to let you know that you are not alone!

Hang in there....

[Carolina]

Thanks Joe and Lynn,

It happened again tonight.   

"you're just out of shape, from not doing anything".   "And there's nothing really that serious going on".

I just want to scream!

I swear I won't say another word to anyone ever.

sigh

Sometimes I just want to leave my entire family and be alone, honestly.

OH well.

That's not an option, either, is it?

Elaine

[lynnmarie219]

I just want to scream!

I swear I won't say another word to anyone ever.

Remember....you can ALWAYS come here to talk about anything and even scream here if that helps! I think there are many of us that use this space for just that becasue others in our lives just don't always "get it".

[kimbo]

Sweet Carolina,

Have you ask your loved ones to read, some of our fatigue threads here on our sjoggie family world?
And also some of the threads that express family and loved ones degree of understanding?

When you feel so frustrated, I understand, we all do here, I know you know that.

Sometimes it helps; when I am all alone, to pour it all out. OUT LOUD! all your frustration and all the words you can to describe how you are feeling. Empty it all out. When I do this in the middle of the night, and then in the quietness and stillness, I fill a new energy that fills all I have emptied out. For me personally I do it in prayer to the one of my life power source. I have a Great therapist!   

You will be in my thoughts.
Prayers, big hug and blessings. 

[season]

Elaine, I get what you are saying. The illness we deal with is bad enough but not being able to do what we use to do is terrible too. I tell my family that i am not 30 years of age anymore. Everything gets harder as we grow older.

Vacations. That is supposed to be a really joyful anticipation. I find that it can be really stressful even if you plan just a 2 night get-away. I like your idea about taking 2 cars. That would work.

[Meld256]

Carolina dear,

I'm so sorry.  When those closest to us do not understand or say hurtful things it is so hard to deal with.

No wonder you want to leave and be alone...good grief! You would think that someone who sees how you struggle daily would be aware of what your limitations are and be respectful of that.

As kimbo said, you know you can always come here for understanding and hopefully, comfort. I send you many hugs, and will keep you in my thoughts and prayers.
Blessings,
Melinda

[Rachel F.]

Well,
Just to let you know you are not alone!
There are many days when I think the only thing I can really do is sit down and have a conversation with someone. And I look perfectly fine. How are your doctors? Are they supportive? When something goes wrong, I think certain people are intent on blaming someone. Seems like you are getting the blame for your illness, which is so wrong! It seems like you have several very serious diagnosis already. It is too bad that people are not even realizing that these diseases might impact you! Is there any family member you can take with you to the doctor's next time you go? I would be upset at your family too. I find that some people- particularly some men- (sorry for the men out there!) have this belief that there is no such thing as sickness and no one should take medicine etc. I don't know what that is about but it is very frustrating. All I can say is- you are not crazy- what you are feeling is real- take care of yourself and if you need to get a doctor to write you a script saying you are under medical orders to not walk more than 25 feet without resting or that you shouldn't travel out of the country or something like that. Maybe time to talk to your doctor about the grief you are getting at home. If you doctor is sympathetic, that is. Sometimes, doctors don't believe us either.
Rachel F.

[Carolina]

Dear Rachel and all who sent love,

Your support has my in tears of thankfulness.

This forum is my refuge.

Since I am sero normal (negative) I have no doctor to support me here.

I tried when we first moved here last May, but when all the tests were normal, the neurologist blew me off.

And in front of my husband.

hugs

Elaine

[Pisces24]

I kinda had different with my parents. They were very understanding when I got sick and didn't wait around to take me in to see our family doctor.  This may sound odd, but I am glad the Sjogrens problems and diagnosis came up with me after they had passed.  Heck when I would get sick as a kid, I"D have to fight with them to let me go to school!!!! I am not kidding and I am probably the only kid that did that.

With us, we knew each other well enough and were around each other enough, to KNOW when someone didn't feel well. Never crossed our minds that the ill person was lazy, nuts or faking it. 
Makes me wonder if some of the things your relatives did or would de - if they are projecting that behaviour would be on you? Thinking you are behaving the way they would?

Well I call being yourself CHARACTER!  You don't have to emmunlate the behaviors of your friends, peers, etc.
They are not paying for the aches & pains afterwards.

[Rachel F.]

Sorry to hear you have no doctor support either. 
Keep us posted. Please don't overdo it on your trip. I had really been trying to do a lot when i didn't feel well. Recently, i just say "I don't feel very good. I'm going to go lie down." and then I do.

I'll need to hear more about your journey sometime.
Rachel F.

[Joe S.]

Elaine, when you see your doctor, do you bring an advocate with you?

[Carolina]

Joe, when I see a doctor, I take my husband.

He isn't an advocate, he's there to 'balance' me and be sure the doctor knows I don't get enough exercise, for example.

It is very discouraging.

He is NOT my advocate because he believes I am over reacting to my condition and making it more than it is.

He thinks I'm susceptible to believing everything I read, and thinking the 'worst case scenario'.

And so on.

it is discouraging

but I don't have anyone else and if he didn't go he would think I was misrepresenting things.

He also wants me to accept that what is happening is just 'old age' and everyone has it and I should just carry on.

He does NOT understand that I AM 'just carrying on'.  He never will.

No one in my family will, but my older son who lives in Paris, will be kind to me.  It is his nature.

He pays attention to me, not to a 'medical training' and a belief that I'm over dramatic.

It's interesting because any doctor will tell you that I have a very high tolerance for pain and carry on quite well.

I"m trying to fit this all into my feelings, Joe.  It's very hard because I get very sad and lonely.

Even the grandchildren say things that let me know that their parents think I'm 'lazy' and over reacting.

It has left me feeling that I just want out of everything.   

But self pity is so corrosive.  And I will try to get involved with a few more activities in the community next year.   The women I am meeting are more supportive than my family!

I took one of my beloved Aleves last night (I used to take four a day, two in the morning and two at night) and had a better night.  Which always helps!

My hands are swelling quite a bit (arthritis) so many daily activities are very painful.  I just have to move slowly.

Blessings to all of you who are giving me support.

I have read up a bit on the 'seronegative' diagnosis.  It isn't written about a lot, and isn't easy to fine.

But it seems to be about 15% of cases of Sjogren's and other AIs are seronegative.

I now realize how much I wish I had the diagnosis.  Then I could see a good rheumatologist at Duke.

Right now I wouldn't have a prayer of getting in, because the neurologist I saw tested me on every possible AI and I came up negative.  He doesn't think my neuropathy is serious, and downplayed everything i have, from SICCA to IC as just part of getting old.

It helps me somehow to get this out, to sort out my own mind.

Hugs.

Elaine

[Carebear]

Oh Elaine,

I read your posts with a lump in my throat.   I'm so sorry that your family is so unsupportive. 

Sometimes out of necessity we need to seek out a different sort of family...like the one you have here.  You mentioned getting out more in your community, and I think that's a great idea.  This can be beneficial in so many ways. 

Try to take care of yourself.  And come here any time you need to vent.