RE: The other side of Stills

August 30, 2011

Dear Patty,Thank you! from the bottom of my heart. I do get it. Not only for

myself as my husband became disabled 4 years ago but I've got friends in the

same situation as well and have listened to the same words you've spoken.All I

can say is you are a strong lady and I know that's not what makes it better,

easy or why you do it. I would say from my experience of living both sides of

the fense that being the one disabled is at times esier than being the care

giver because being the one with the disease you have some control on good or

bad days of how I deal with my disability but with my husband I had NO CONTROL

and even though we are partially seperated I still and never did have any

control over his actions and that is, was one of the hardest things to deal

with. I couldn't make him help himself or do what was best for himself.Anyway, I

admire you and others I know. I thank you for sharing because over the years

other partners, husbands and wives have wanted someone to share with and you

just did and spoke so honestly.Wishing you a wonderful day and hoping you get to

have that vacation to your son no matter what.Hugs, P.s. intentionally

not trimming the previous message.

To: Stillsdisease

From: stillsman00@...

Date: Tue, 30 Aug 2011 08:14:36 -0700

Subject: The other side of Stills

Hello Everybody,

This is Larrys wife Patty. Larry felt that I needed to give my side of

living with Stills so maybe it can help a couple that may be in trouble....First

of all I want all you that have Stills, to know, I do understand the process of

this disease, and I understand the fatigue, the pain, the depression that you

all go through, I also deal with a lot of the same thing in my job, so when I

say I understand, I understand, I am a rehab director at a skilled nursing

facility.... I work with alot of people who have some type of autoimmune

problem, so yes I understand. However I do understand being a 24/7 caregiver.

When Larry got Stills, I got it to. As he has had to learn to live with

it, so have I...It is so hard to describe how hard it is to live with someone

with Stills, because, you see changes in them that you thought you would not

see, and you cant plan for a vacation, because a vacation is not going to

happen, your to afraid to go anywhere because no matter how he tries, all I

would get to do is sit and watch him sleep....Or go by myself in a strange town

around strange people, because he could not go out and shop or sight see. So I

would rather stay home and watch him sleep and be around people I know...It is

not that I don't want to try for a nice romantic weekend I am at the point i

dont want the disappoitment that comes along with the words " I am so tired " .

There have been so many times that we have had something planed and then " I am

to tired to go. " comes. So planning something with Larry is not going to

happen right

now. I pretended not to want to go see the fireworks this past 4th of July,

because I didn't want to feel guilty for having to leave Larry behind. We plan

family cookouts and he sleeps through them.....With the grandbabies wanting to

see PawPaw. it is very hard to deal with......And he gets to sleep through it,

though I know it bothers him to hear it, I have to deal with it......

Larry and I use to take off at the spur of the moment and spend a weekend

away from home just the two of us. but not anymore...

When Larry is down and out I still have to get up and go to work and then

come home and do all the things he cant do. When we moved I had to get my son

in laws to help me with the big stuff because Larry couldnt and I still had to

go to work everyday. He is sleeping I go to work, I come home he is sleeping,

no life at all....

You guys may have stills disease, but the care givers have to live with it.

You have the excuse to stop when your so tired you cant hold your head up, but

we cant.. You hear " But you dont Look sick " , well, we can't get sick, and if

we do we still have to keep going. I dont mean to offend anyone with this

statement, I do know that the disease causes this, but again I am talking

about the other side of Stills.

I have had to go through all of his surgerys with him too, then make up my

time at work for being out... I had to have a mild surgery right after his

first hip replacement and had no time to just heal, I had to get up and go to

work with stitches in my side. If I have a cold or anything else I have to get

up and go to work, because I have to pay the bills......No time off.

When Larry was on the vent 3 years ago and in a coma, he had no clue the

crap I was having to put up with his family, and I had to work, I would get up

at 3am so I could go by the hospital and check on him, talk to nurse then go to

work, then when I got off of work I would go back to the hospital and spend a

couple of hours talking with the nurses and fnding out what was going on ,all

the while having to put up with his family making comments about me not being

there through out the day, and no it did not matter I had to work to keep

paying for the insurance that was paying for him to be on the vent in the first

place...When I do take time off of work it is to either take him to the Doctor,

or its to get things done around the house that I have neglected.

So yes you have the disease, but we have the burden to make sure you have

all you need and when we dont then we get a second job.

I would so love to have the man I married over 15 years ago, but he no

longer exisits. The man that I am married to now, well though I love him, he

is just not my Larry and I miss him so much..Not only that, I am not the woman

he married, I am quick to anger, and ready to lash out and at other times I

feel as if I am going to start crying, and feel that if I ever let myself start

I would not stop for a while. I dont mean too but I have so much on my shoulders

that I feel sometimes like taking off and never turning back. I hate it when he

sleeps all the time, or when I get this punched drunk person because he hasnt

slept in 5 days... I spend so much time alone that I dont even feel married. I

try to keep myself busy, but It would be nice to hear, " Its ok honey, I'll

take care of it... Or that I didnt feel quilty when I go have my nails done

because he cant even go to the store with me...It seems to me that when he is up

and

able to do things I am at work or sleeping, because most of the time when he is

up and feeling better its in the middle of the night.

Knowing that stress will make a person with stills sicker, we, as

caregivers, feel that we have to keep alot of things inside to keep from

upsetting you. We try not to get into an argument because of the stress that it

can create. But you can lash out and say whatever comes to mind, and we feel

we have to take it because we dont want to cause anymore stress. And if we do

lash out and start a fight and you become totally stressed out and get sick, we

become the bad guys again.

If you feel that you cant stay in the relationship then you can leave or

throw that person out and everyone is understanding, but as caregivers if we

feel we cant stay, then we become the bad guys. It is so hard to deal with

sometimes, I have been doing this for almost 7 years, that you do feel like

quitting. But the guilt in doing so, is crazy.... The caregiver wants to have

a normal life to, just the same way you do, they want to have someone to take

care of them at times, and to be able to take off without worry of getting

somewhere and then not being able to do, because your down and out..... You have

stills disease to worry about and to make sure you have all your meds and stuff.

We have everything else to worry about, such as you, and making sure you have

everything you need, plus the home, kids, work, buying food, running errands,

and making sure that we get to the doctor when we can.....On top of that we

dont know

if we are going to get a call at work that something has happened to you or

that we are going to wake up in the middle of the night, finding you layed out

somewhere, due to a stroke or something. For most people that is a thought that

occurs once in a while, if Larry does not answer the phone when I call in the

middle of the day, that is the first thing I think about, has something

happened, is he ok? Did he fall and get hurt bad, or did he have a major

stroke and die...This is thoughts that always run through my head and I am sure

through others. Each day I leave I wonder if something is going to happen. or

when I get home and he is still in the same place ont he couch that I left him,

I am almost affaid to approach him fearing he might have died in his

sleep...These things are always in my mind, or I am afraid that I will get that

call..and you know the call.

In December I am going to England to spend a few days with my son, I wonder

if I will really get to go, because I am worried that something will happen to

Larry before I get out the door. Or what if something happens while I am

gone???? I have not seen my son in almost 2 years and have not gotten to spend

Christmas with him in 4. And I know that if something happens and I cant go I

will almost hate Larry for it.. I dont want to but I know I will have those

feelings...Like I said we just want to have a normal life, to be able to make

plans for our future and have a better chance of being able to following them

through. You see I am really afraid that something is going to happen to him,

even though the plans are made and the plane tickets are bought, thanks to my

son. This is a everyday feeling, not just once in a while but everyday....

I hate to see the man I married, who was always doing something, just sit

around and do nothing,,,,He is either asleep, or so tired, like is said before,

he cant even go to the store and help me buy food.....I ask him to make a phone

call and it can take days before its is done. If I dont take him to to Doctor,

most of the time he has to rearange the time so when he feels he can go on his

own. 9 out of 10 times if Larry is going to take himself to the doctor, he

ends up having to make a different appointment because he is so tired he cant

wake up enough to go....When he has to go to the doctor in Charolett I have to

take him because he cant drive that far.....Then again I have to make up my lost

day at work up on the weekends.....

I am not saying that a person with still disease has it better than the

caregiver, I am trying to explaine how difficult it is for the caregiver..Not

meaning to, but people with a chronic disease, can get so wrapped up in the

problem that they forget about the problems that the caregiver has, and that

just because we get to go to work and can go to the store or go on all day

without having to stop and rest does not mean we have it easy...And I am not

saying thay you dont care, its just that you can get so wrapped up in your

disease that we are forgotten about...So please try to remember that we are not

superhuman, we are only human, and we try to do the best we can do..There are

those of us who seem to be able to do so much without complaint, but most

people are flying be the seat of their pants.. I want to scream

sometimes.. " Just get up and do something " Or " I dont want to hear how bad you

feel today " Or sometimes " I dont

care that you feel bad today just leave me alone. " Like i said we are only

human and can only take so much...Some more then others... Sometimes it seems

that Larry only thinks of himself, not that he means to, but, not only does he

have stills, it seems that stills has him..... He seems to sleep, drink and

eat Stills all the time, and I know that he does not mean to neglect me but

there are times I want to say,,, " What about me, and what I need. "

So those of you that have Stills, the next time you feel down and out,

please stop for a moment and think about the one who is always taking care of

you and thank them because just a little thank you can go along way, and

remember that You may have Stills but we have to live with it too....... And

please, dont think for one moment that I dont know how difficult it is to live

with this disease, and I know that your dreams were smashed when you found out

about it,,,I also know how easy it is to neglect, or shall I say be so secure

with the one who is always there, and that you get so caught up in what you have

to do to deal with it, that you do forget that person that has been standing

beside you all the way...So from time to time please remember them..Send them

some flowers to work just to say thanks for all you do for me. or when you can

send them a card..Just a little reminder to them that you love them and are

thankful that you have

them in your life......

For those of you that have had caregivers to leave, the ones that tried and

could not do it anymore, try to remember that they are only human and some

people just cant handle seeing someone they love go through that change nor can

some take the stress that comes with being responsable for everything. For the

ones who have had their loved ones just leave, I am so sorry, because I would

not consider them human at all.... I truly think that this is a horrid disease

and I hope and pray that some day there will be some type of meds that can at

least ease the symptoms. And I hope that this helps because you can get so

wrapped in what is going on in your world, you can forget that your loved one

lost their dreams too...Take care and may God bless you and keep you safe, and

know that I care about each and everyone of you and hope that you understand why

I wrote this...

Patty Brown.

August 30, 2011