Lupus Support - Loved one who just don't understand

Author

Loved one who just don't understand

Steveo

2006-08-01, 8:29 am

Good day all, I am going to ask this hoping for some advise. After
being diagnosed with SLE I have found that my wife has no Idea at all
what I go through on a daily basis. The fatigue is the hardest part,
after 40hrs of work I just want to sleep. But I am never allowed to
sleep in or even take it easy. I use to be very active and always
working on something. Now I can only do a few hrs of labor before I
want to sleep for a month. I have started taking her to my DR apps,
but she still thinks that I need to work more and get ahead so we can
afford another child. I am a professional, I make good money and she
also works but the state we live in is very expensive. I am so tire of
pushing myself, I think I am making myself worst but I can't seem to
get to understand how my life has changed. I know this sounds like
venting, it is not I honestly want to know how other peoples spouses /
partners handled the issue. Perhaps I can find a way to make her see
things from my point of view.
-Steve

Mair

2006-08-01, 9:26 pm

Hi Steve,

I am glad you are here with our group... we always need more men with SLE
who will share what it is like for them. My brother also has SLE.

I can relate very much to what you are saying, because fatigue is my main
component. I came down with it as my main constituent when I was 17, and am
now 47. Being a woman with the illness, I got the "it's all in your head
treatement for years. But even knowing that it was and is *not* "all in my
head," I did not brush off the idea that some good psychological counseling
(with a sound and intelligent doctor) could probably do little harm, and
maybe even a little good. Fifteen years ago, just after my brother was
diagnosed, I went to a rheumatologist. Sorry to say that, because of my
gender, the doctors tended to believe me more because my brother had the
illness. Yack!

The rheumatologist that I see now... he never doubts the validity of what I
am feeling. It is interesting to note that not many irregularities show up
in my blood, but on biopsy the tissues are definitely undergoing
infiltration with white cells. Hmmmm.

The rheumatologist put me on thyroid supplement, and after about 3 weeks I
was like an appliance that had suddenly been turned on (hopefully not as
annoying as a weed whacker, nor as energy consuming as an electric heater!).
I still have plenty of other symptoms, but I think that the profound fatigue
is the very worst. I was practically bedridden when I was in my 30's. Now
I can have about half the day where I can be up, doing light tasks.

I know you are asking for spouses of lupies to talk to, and I hope there are
some who will write to you. Often it seems the only folks who write here
are the lupus sufferers themselves. But feel free to come here and rant!
Many of us do that, and I want to welcome you, to stay with us and find some
friends.

Best regards

Mary Rawle

"Steveo" <sjarrell@optonline.net> wrote in message
news:1154438737.793680.18380@m79g2000cwm.googlegroups.com...
> Good day all, I am going to ask this hoping for some advise. After
> being diagnosed with SLE I have found that my wife has no Idea at all
> what I go through on a daily basis. The fatigue is the hardest part,
> after 40hrs of work I just want to sleep. But I am never allowed to
> sleep in or even take it easy. I use to be very active and always
> working on something. Now I can only do a few hrs of labor before I
> want to sleep for a month. I have started taking her to my DR apps,
> but she still thinks that I need to work more and get ahead so we can
> afford another child. I am a professional, I make good money and she
> also works but the state we live in is very expensive. I am so tire of
> pushing myself, I think I am making myself worst but I can't seem to
> get to understand how my life has changed. I know this sounds like
> venting, it is not I honestly want to know how other peoples spouses /
> partners handled the issue. Perhaps I can find a way to make her see
> things from my point of view.
> -Steve
>

Ruth Tay

2006-08-01, 9:26 pm

In article <1154438737.793680.18380@m79g2000cwm.googlegroups.com>,

When Lupus first struck I slept 36 hours straight. My husband and I
had started a huge building project and 18 hour days were common.
It took several years for Paul to understand and also about 5 trips
to the emergency room. The normal response to Lupus is yes
it is bad today but you will be back to work full time in a few weeks
It is hard to accept a life-changing illness. Since we both work
at different offices in our home ...... he checks in on me and if the
office is empty he looks for me and asks to help. This has been
going on 25 years. He is extremely loving and caring. It has
changed his life in that I cannot go out on the job with him because
of the sun and he has had to take over about 25% of my work and
cut back the size of any jobs he takes on. He does not complain
at all but accepts the fact that Lupus changed both of our
life styles. It takes a while for the realities to set in and
cooperation with the new limited abilities. I adore my husband
and at the same time feel sorry he has had to make all the
changes. In a way it is good too. You have to slow down and
really enjoy the present. So Steveo give your wife time to
realize your situation. After all with all the prednisone and
other drugs you take " you look so healthy"........one of the
curses of Lupus is we all look so healthy. ruth

"Steveo" <sjarrell@optonline.net> wrote:

> Good day all, I am going to ask this hoping for some advise. After
> being diagnosed with SLE I have found that my wife has no Idea at all
> what I go through on a daily basis. The fatigue is the hardest part,
> after 40hrs of work I just want to sleep. But I am never allowed to
> sleep in or even take it easy. I use to be very active and always
> working on something. Now I can only do a few hrs of labor before I
> want to sleep for a month. I have started taking her to my DR apps,
> but she still thinks that I need to work more and get ahead so we can
> afford another child. I am a professional, I make good money and she
> also works but the state we live in is very expensive. I am so tire of
> pushing myself, I think I am making myself worst but I can't seem to
> get to understand how my life has changed. I know this sounds like
> venting, it is not I honestly want to know how other peoples spouses /
> partners handled the issue. Perhaps I can find a way to make her see
> things from my point of view.
> -Steve

Shelagh

2006-08-02, 2:26 am

Hi Steve
I feel so badly for you because it just doesn't have to be that way with =
the one you love and live with!
I am fortunate to have a loving husband of 35 years who has stuck by me =
through absolutely everything, multiple reconstructive spinal surgeries, =
pre-marriage!! as well as being dx'd with lupus post-marriage at age 28; =
and many more surgeries, spinal and others throughout the years
I really do feel that if your 'love' for each other is there you will =
make it through; =20
we have fought through so many really sad/bad things that happened all =
due to this nasty illness and yet because we fought back together IMO, =
we stand even stronger in our marriage now than the beginning!!

Have you tried to get your wife to go in to your appointments with you =
and talk to your doctor about all your symptoms? and what about books on =
the subject? have you bought any and asked her to read them? what about =
a local support group that she could go with you too and she could hear =
from other patients how they deal with it all along with their mates?... =
these things are what we did in the beginning and I still depend on my =
local support group just for company with those who 'know'; for you =
alone Steve it would be a good thing!

I am afraid I can't relate to the fatigue symptom so much as others, =
although I have had it, it has been rarely and for short duration =
<luckily for me I understand!>..... but maybe hearing from the doctor =
(and his/her opinions and statements on lupus) herself would help your =
mate to better understand all you are living with?

I wish you so much luck in all this Steve!=20
I can NOT imagine living with this illness without 100% support from my =
husband!=20

I wish you all the best and maybe too you could get your wife to read =
some of the online stuff out there from other patients and other posters =
who are telling her exactly what you have been trying tell her over and =
over?! Just that you just can't carry on as you once did unless you =
happen to get lucky and fall into a remission; and they too are not =
'forever' periods of time.. we all know that they can be short or long =
and then all the symptoms can come back on in fully; it is the nature of =
the illness; and also the symptoms you have most often will be the ones =
that plague you continuously throughout your life; this I know for fact =
as do most of the posters here who are their own medical self advocates =
with their specialists.=20

It is a big must for her to be able to fully understand what all is =
going on with you and especially the whys of it all!!=20
I wish you all the best and tons of good luck!!
So sending hugs for you, and hopes that it all works out favorably for =
you both! Living with lupus is tough enough without having to explain it =
to the one you love and live with.... that has to be exhausting! Stress =
is the worst trigger for lupus flares... another well known fact that =
she must also understand... I could go on and on but you have probably =
heard it all before from so many and I am not good on a pulpit <g>! so I =
will get off now and know that good wishes are heading your way to the =
both of you!
from Shelagh
http://clik.to/lupus

"Steveo" <sjarrell@optonline.net> wrote in message=20
news:1154438737.793680.18380@m79g2000cwm.googlegroups.com...
> Good day all, I am going to ask this hoping for some advise. After
> being diagnosed with SLE I have found that my wife has no Idea at all
> what I go through on a daily basis. The fatigue is the hardest part,
> after 40hrs of work I just want to sleep. But I am never allowed to
> sleep in or even take it easy. I use to be very active and always
> working on something. Now I can only do a few hrs of labor before I
> want to sleep for a month. I have started taking her to my DR apps,
> but she still thinks that I need to work more and get ahead so we can
> afford another child. I am a professional, I make good money and she
> also works but the state we live in is very expensive. I am so tire =
of
> pushing myself, I think I am making myself worst but I can't seem to
> get to understand how my life has changed. I know this sounds like
> venting, it is not I honestly want to know how other peoples spouses /
> partners handled the issue. Perhaps I can find a way to make her see
> things from my point of view.
> -Steve

Krista

2006-08-02, 2:26 am

Hi Steveo,

Welcome to the group and nice to meet ya. I'm Krista.

Though I do not have a spouse or partner I do understand what you're
dealing with. We all do I think. My entire family has basically posed
this problem for me. I'm 30 and had to quit my first real job 2 years
ago, a good government job I liked and was good at, after putting
myself through Grad School. I've always wanted so much to not get into
a bad situation like my Mom and sister, being a single mother with no
higher education working themselves to death to support themselves and
their children, that I made it the priority in my life. Well, I did
what I thought was the right thing, the smart thing, and in a normal
situation it would have been. But I put having a husband and family
last. And now it doesn't look like it will ever even happen for me. I
hear all the ladies and gents on here who speak so highly of their
spouses that do so much for them, it makes me sad. Just to have
someone to care that much would mean so much to me.

I never had to ask anyone for help in my entire life EVER - and now I'm
sick and although my sister is understanding but lives far away and has
a new husband and great new life, I moved near my Mom and family after
my Dad died and left me his place. My Mom supported me (not
monetarily) at first, but now she resents that I am sick and she has to
help me. And I have given her thousands of dollars when I worked and
she didn't and she needed money, I did as much as I could for her and
never thought twice about it. It doesn't make me mad, and I certainly
don't resent her for it. It was my choice to give her money and other
things. She even gets angrier when she does something that I didn't
ask her to do for me in the first place and screams at me saying "I
can't do it all for you!" Even if it's just a phonecall like last week
when I had laryngitis and I coudln't make the call myself. Yep I've
had it for a month and been on two courses of antibiotice and one
course of steroids. And she got mad because I asked her to call
someone for me. She holds every bit of her help against me and I have
no one to call on or, well, anything really, talk or ask to come be
with me because I've been so alone. My own mother resents me, because
I just need a little help. But it turns out she resented us in the
first place, one of her friends one time told me she had no idea why my
Mom wished she never had me, because she would have been so proud of
me. But that's just the blame game.

It does hurt and I am at the lowest point of my entire life. I do have
some wonderful friends but they live so far away and I have no one hear
who I can call on, or depend on. I've been alone in bed for 2 years
now. But unlike you, I can't sleep, so thank your lucky stars that you
can rest, I wish I could. It's my only respite from this miserable
world. I do it 23 hours a day if I could. I'd do it for the rest of
my life.

Sorry for the long build up, I digressed. As for your wife
understanding, there are some great books out there, education is the
only avenue I can see to help your problem. But she has to be willing
to understand it, and want to learn about it and be supportive of you.
And you might not be the right person to tell her that. I know that my
Sister and I, we never really got along, and the sickness made us fight
horribly. Of course we were still dealing with the death of our Father
to cancer. Turns out, she had a friend from work that is sick like me
and through talking with her friend she started to understand. She
heard what I said, but didn't listen, but she listened to an outside
source.

I lost one of my best friends, and a few prospective boyfriends from
this disease. People just don't think I'm as fun anymore or don't want
to deal with a sick person. Some people just don't get it. I wish you
all the luck in the world and hope you don't feel so alone anymore.
But you have to take care of yourself and do what's right and what you
have to do.

Good luck and God Bless.

~Krista

Steveo wrote:
> Good day all, I am going to ask this hoping for some advise. After
> being diagnosed with SLE I have found that my wife has no Idea at all
> what I go through on a daily basis. The fatigue is the hardest part,
> after 40hrs of work I just want to sleep. But I am never allowed to
> sleep in or even take it easy. I use to be very active and always
> working on something. Now I can only do a few hrs of labor before I
> want to sleep for a month. I have started taking her to my DR apps,
> but she still thinks that I need to work more and get ahead so we can
> afford another child. I am a professional, I make good money and she
> also works but the state we live in is very expensive. I am so tire of
> pushing myself, I think I am making myself worst but I can't seem to
> get to understand how my life has changed. I know this sounds like
> venting, it is not I honestly want to know how other peoples spouses /
> partners handled the issue. Perhaps I can find a way to make her see
> things from my point of view.
> -Steve

Krista

2006-08-02, 2:26 am

Mair wrote:

> The rheumatologist put me on thyroid supplement, and after about 3 weeks I
> was like an appliance that had suddenly been turned on (hopefully not as
> annoying as a weed whacker, nor as energy consuming as an electric heater!).
> I still have plenty of other symptoms, but I think that the profound fatigue
> is the very worst. I was practically bedridden when I was in my 30's. Now
> I can have about half the day where I can be up, doing light tasks.
>
Hi Mair, can I ask you what is the thyroid supplement he gave you?
Thanks!

~Krista

Diane

2006-08-02, 8:26 am

J O I N T H E C L U B

Steve, my husband left me and our 3 children because he just didn't
understand. I had always been a very active person. Swimming
competitvely, Teaching children Ballet, and beloved Yachting! The pain
in all my joints and the fatigue which I had never before experienced,
made him and I very frustratrated. I went from Specialist to specialist
and they counldn.t find anything wrong with me. At last he just walked
out because he said I was just lazy and had just lost interest in the
things we both loved to do.
I eventually found out what was wrong with me and received the Divorce
Papers the same day!
Even now, nearly 30m years later, I still don't think my family fully
understand. I have given them pamphlets to read. I have tried to
explain but, you see it's the "Invisibility" of this iollnes which
makes it so hard to deal with! If a Dr. had told you that you had
cancer your family would all "rally round" or if you had a broken arm,
you would have "visible" proof.
I can't offer much help, Steve, but I have found, in this group the
understanding and compassion which I need so much.
Hang in there! We know how you feel.
Hugs. Diane.

Mair

2006-08-02, 4:30 pm

"Krista" <kdp8575@gmail.com> wrote in message
news:1154497751.941671.39200@h48g2000cwc.googlegroups.com...
>
> Mair wrote:
>
> Hi Mair, can I ask you what is the thyroid supplement he gave you?

Hi Krista,

I am on levothyroxine, which is just generic for Synthroid. [I did ask my
doctor if there is any difference in using the brand name versus the
generic, especially when it comes to thyroid supplementation. He said to me
that the study on the subject was done *right here* (meaning UC San
Francisco), and paid for by the drug company, because the drug company
wanted to publish how much better the brand name is than the generic drug.
But the drug company's plan backfired when the test showed no difference at
all!] Anyway, that is what I take. I also take Cytomel, 0.5mcg

Hope this helps

Mair

Maggie

2006-08-02, 9:27 pm

Steve...

I so agree with Ruth. Although it is you that's suffering through this
illness, it's still a huge change for everyone in your life. And when
people are healthy, they don't like the changes that come with
sickness. I don't know what goes through their minds or if some just
don't care about anything but their desires, but they do deserve the
benefit of the doubt & hopefully, she is just having a hard time
dealing with all that's happened and in her frustration, she actually
thinks she can push you into being well again.

Between doctors, educating yourselves, counselors/clergy, prayer and
time, hopefully she will come to see that being understanding and
supportive is the only way. If talking to her about how you feel only
makes her defensive, then try writing your feelings down. If she only
gets defensive when she reads it, then keep writing in a journal and
let that journal be somewhere in plain site and let her know it's
available to her. The journal is not to vent frustrations (ye shall
hide THAT journal), but just to say things like: I wish I could be of
more help today, but I just can't find the energy. Things to let her
know you're trying. And things that may enlighten her as to how you
cope each day. Not neccessarily directed at her, but for her. She may
never read it, but a journal is therapeutic regardless.

Hang in there, Steve. Time has a way of taking care of things.

Maggie

Steveo

2006-08-02, 9:27 pm

Thank you everyone, I appriciate the replies. I guess, after
re-reading, I was venting. MY wife used to be the most caring and
compasionate person and now I don't see to much of that anymore. I
know she is having a hard time accepting the new me and feel sorry that
she has to go through this with me. I have tried to get her to read
books, go to my doctor apps, and her best friend has had Lupus for 15+
years. she should understand what it does to a person. I do agree
that time can fix anything, even if it a point of view. I just hate
being stressed at work, stressed about my health, and being stressed
out at home. Man thats a lot of stress,

I have noticed that ever since my wife started acting this way
that my SLE has become more personal, I do most everything alone
whether it be blood tests, dr apps or even a kidney biopsy ( I actually
checked in to the hospital, had the procedure and then checked out and
drove home the next morning, although my wife and son came and visited
me shortly after the procedure.)

astrid

2006-08-03, 2:26 am

Hi Steve,

I am fortunate that my spouse is very supportive and understanding
about my disease. I think it helps that he has back problems so he
understands that some things are beyond our control no matter what we
wish.

However, my family has not been so understanding although I will say
that over the years they have gotten better. When I was first ill, I
felt really isolated from them because I think they didn't know what to
do or say so didn't do anything which was the worst thing they could
have done. My family is also the type that if you just "push through"
it then it will get better. And obviously that isn't the case.

Overtime though they have gotten much better and ask questions so I
think at first maybe they just wanted to deny reality because it was
too serious and scary.

My brother was diagnosed with Lupus two years after me and I must say
it's much more difficult for a man. A man can't ask someone at the
hardware store to carry some heavy item. And men aren't allowed to be
tired, etc. You need to be careful though and get the rest you need.
For a while my brother was with an incredibly demanding woman that was
a night owl and made him stay up until 2 or 3 PM in the morning and
then he had to work a full-time job the next day. I think all Lupus
people need plenty of sleep. His Lupus was at his worst when he was
with her. After they broke up he became much healthier. You need to
know your limits and stick to them regardless of how others make you
feel. Because if you don't you'll only become more ill.

You said that your wife used to be the most caring and compassionate
person and I'm sure it's still there in her somewhere. Maybe she just
needs time to adjust. And if she wants another child maybe it's more
than just the money issue. Maybe she realizes that if you really are
this sick than maybe that child isn't a possiblity in the near
future???? As someone else mentioned chronic illness changes the entire
family dynamics and it takes some getting used to.

Best of luck,

J

Zuska

2006-08-03, 2:26 am

Hi Steve ~

My name is Susan, and I was diagnosed with Lupus (then changed to
'connective tissue disease' three months later because I did not have
any symptoms). At this time, my primary diagnosis is Sjogren's
Syndrome, and secondary is ~ well, pretty much a toss up, as I have
Vitilago, the 'connective tissue disorder' and most recently some other
something that they believe is a 'muscle wasting disease. I will be
seeing Neurologist #3 next week on that one...

Anyway, I am not in a relationship with anyone, and for that matter, at
age 55 I live with my 85 year old father ~ who (1.) Drives for Meals on
Wheels, (2.) has a girlfriend and they date every Saturday and until
this year would go on vacations together, and (3) he just stopped
volunteering for The American Cancer Society driving patients to their
treatments in a program called "Road to Recovery." The reason he quit
doing that was so that he can devote time to taking care of me ... not
how I expected (or wanted) things to turn out!

Luckily, I have found support from work (I am currently on medical
leave) and in my home, but sometimes I think that other than my father,
it is only because I have a visible symptom ~ which is that about three
months ago I *forgot* how to walk.

Three years ago, I was living with my partner, who died of cancer. I
joined some on line groups, and I was appalled with the stories of
people who their partners 'baled' on them.

As I see it, your wife is still there ~ not happy, but still present,
which gives you an opportunity to talk with her and work at exposing
her to facts about this illness. One book that I would recommend for
both of you to read is called "Sick And Tired of Being Sick And Tired.
It is available from the Lupus Society, and for me really put words to
having an 'invisible' illness.

There have been lots of other wise words here ~ I hope that you found a
nugget or two that helps.

Susan

Krista

2006-08-03, 2:26 am

Thanks Mair! I'll talk to my doc about it I see her next week!

Krista

Mair wrote:
> "Krista" <kdp8575@gmail.com> wrote in message
> news:1154497751.941671.39200@h48g2000cwc.googlegroups.com...
>
> Hi Krista,
>
> I am on levothyroxine, which is just generic for Synthroid. [I did ask my
> doctor if there is any difference in using the brand name versus the
> generic, especially when it comes to thyroid supplementation. He said to me
> that the study on the subject was done *right here* (meaning UC San
> Francisco), and paid for by the drug company, because the drug company
> wanted to publish how much better the brand name is than the generic drug.
> But the drug company's plan backfired when the test showed no difference at
> all!] Anyway, that is what I take. I also take Cytomel, 0.5mcg
>
> Hope this helps
>
> Mair