Re: helping my family understand

[Guest guest]

One article useful for this purpose is the spoon theory:

http://www.butyoudontlooksick.com/the_spoon_theory/

Sue

On Tuesday, July 8, 2008, at 04:23 PM, kmitch1966 wrote:

> They dont get it, they dont understand how one day I am

> rattling pots and pans and the next I am devastated.

[Guest guest]

You are not being too sensitive. Coming to grips with having the limitations

that this

disease puts on you is not easy. Getting your friends and family to understand

the disease

and how it is changing you and your life is also difficult. When I was first

diagnosed, I

found the wedsite,

http://www.butyoudontlooksick.com really helpful, especially the spoon theory

story at:

http://www.butyoudontlooksick.com/the_spoon_theory/

I gave a copy of this story to everyone in my family and asked them to read it.

Every single

one of them thanked me!

My family has come to know me as the new, different me now. I can no longer take

care of

everyone but me. I have been deeply touched by the love and help that they all

extend to

me. It took my learning to ask for the help and accepting the fact that I am

truly not the

same person (physically) that I once was. The unpredictability of this disease

is one of the

most frustrating and confusing things to cope with. Your family needs to know

that your

being able to rattle the pots and pans, as you say, one day and not being able

to even pick

up the pot the next is part of it. They also need to know that the

unpredictability of how

you are going to feel is probably more frustrating to you than it is to them.

Hang in there! We all have an occasional pitty party. Sometimes it helps to put

things into

perspective. The daily challenges get a little easier to understand as time goes

by. Please

encourage your family to help you. I have found that mine appreciates the

message of

trust that it sends to them. I have to trust them to understand that I really do

need the

help and I have to trust that they will still see me as the same person they

know and love,

even though I can't do everything physical that I used to do.

Best of luck to you as you go through this transition. Please let us (me) know

how you are

doing. I shall be thinking about you!

Pat

>

> Maybe I am being sensitive. Maybe they are going through the same

> pain I am. I am not sure my family sees or feels the true impact I am

> going through. Last weekend was great, went to a party, my husband

> and I even went out afterward to have a few drinks, it was great. I

> took a long vacation weekend for the holiday to have a great time. I

> spent 2 of those days in bed out of 4. I felt as though I was going

> to die. Now reality has set in. I cant be the person I was,

> entertaining, going and going, taking care of everyone, thats what I

> am , I am the care taker. So for 2 days, I have cried. Yep feeling

> pretty sorry for myself. My daughter..22..her and her son live with

> us, as well as my oldest daugther 23 and her 2 daughters and my 17

> year old son. They dont get it, they dont understand how one day I am

> rattling pots and pans and the next I am devastated. I was diagnosed

> in Febuary and so far it is still not under control. I filed for FMLA

> today at work to protect the days I am out. How do I get them to see.

> My oldest does to a point, she is in school and going for her nurse

> practioners degree. She tries to explain to them. My youngest

> daughter will be graduating this next may with her degree in

> Kineseology, she is going to be a coach and history teacher. Is there

> an article out there ? I would appreciate any adviced. Its hard

> enough when reality hits you head on...and your alone..or at least I

> feel alone. Today...Pity Party

>

[Guest guest]

Hi !

I've been disabled since I was 30 and am now 36.  One of my greatest challenges

at first was getting ANYONE to understand what I was going through! There were

days my mom would have to help me walk down the hall, 5 steps so I could take a

shower.  Days I could not brush my hair.  Then there were days I could do things

around the house.  It took what I feel like years for anyone to get it. 

Because  I looked FINE and I still had a great attitude.  My mom finally got it

by seeing my ups and downs.  Friends however, did not get it.  They couldn't

understand how later in the day I was not able to get out and socialize as by

then the fatigue, pain, and medications had caused my already extreme fatigue to

worsen.  The best thing you can do is educate educate educate them on the

disease.  The www.artritis.org offers free information packet.  Last I checked

there were classes and tips for caregivers as well so that they could vent and

understand. 

Most likely, they are as frustrated as you are as to what this illness does. 

However, the most important thing to learn is not to let the disease control

you! We can control it by not letting it change who we are inside! We are the

same we have always been, just more physically challenged.  Pace yourself, rest

when needed.  Journaling the negative emotions out or even support groups or

therapy are great as well.  When I first just had FMS my doctor told me for

every 20 minutes I was active I needed to sit and rest for 20.  Not to keep

going and pushing until something was done.  Rome wasn't built in a day is my

new motto! What doesn't get done today will have to get done tomorrow or later. 

I had to let go of my perfectionist outlook on life.  I had to let my college

education and career go too suddenly.  I work on advocating for my illnesses,

educating so people  understand.  And remember, we are always here for you and

we are all very

supportive caring and knowledgeable about what you are going through.  It is 

hard for families to understand because everyone is affected by chronic

illness.  Yet it is the human condition for our bodies to break down, wear down,

and we will all be sick and in pain at one point of our lives.  Patience on both

parts is also very important.

From: kmitch1966 <kmitch1966@...>

Subject: [ ] helping my family understand

Date: Tuesday, July 8, 2008, 4:23 PM

Maybe I am being sensitive. Maybe they are going through the same

pain I am. I am not sure my family sees or feels the true impact I am

going through. Last weekend was great, went to a party, my husband

and I even went out afterward to have a few drinks, it was great. I

took a long vacation weekend for the holiday to have a great time. I

spent 2 of those days in bed out of 4. I felt as though I was going

to die. Now reality has set in. I cant be the person I was,

entertaining, going and going, taking care of everyone, thats what I

am , I am the care taker. So for 2 days, I have cried. Yep feeling

pretty sorry for myself. My daughter..22. .her and her son live with

us, as well as my oldest daugther 23 and her 2 daughters and my 17

year old son. They dont get it, they dont understand how one day I am

rattling pots and pans and the next I am devastated. I was diagnosed

in Febuary and so far it is still not under control. I filed for FMLA

today at work to protect the days I am out. How do I get them to see.

My oldest does to a point, she is in school and going for her nurse

practioners degree. She tries to explain to them. My youngest

daughter will be graduating this next may with her degree in

Kineseology, she is going to be a coach and history teacher. Is there

an article out there ? I would appreciate any adviced. Its hard

enough when reality hits you head on...and your alone..or at least I

feel alone. Today...Pity Party

[Guest guest]

Thank you, thank you so very much...I have to admit, when I first came on this

site, I was Oh my gosh everyone is so negative, and sick...it only took 5 months

to get me here..denial can be an evil thing sometimes, thats where I have been

living, and boy coming out of that is hard...Now I get it, your not all

negative...your all true, reality in its own form..Thank you all so very much

for your encouragement and wisdom...I will educate myself, my family and my

friends....Wishing all of you a pain free day...

[Guest guest]

yes the purpose of this web site is not to be negative although at times it

seems that way , but to let others know that they are not alone in the pain ans

suffering they are haveing . we can relate to it and sometimes we may actually

be able to give some advice or steer them in the right direction to get it

From: <kmitch1966@...>

Subject: [ ] Re: helping my family understand

Date: Wednesday, July 9, 2008, 8:52 AM

Thank you, thank you so very much...I have to admit, when I first came on this

site, I was Oh my gosh everyone is so negative, and sick...it only took 5 months

to get me here..denial can be an evil thing sometimes, thats where I have been

living, and boy coming out of that is hard...Now I get it, your not all

negative...your all true, reality in its own form..Thank you all so very much

for your encouragement and wisdom...I will educate myself, my family and my

friends....Wishing all of you a pain free day...

[Guest guest]

Thank you to Sue and Pat for the link to

http://www.butyoudontlooksick.com/the_spoon_theory/ . This is the best

explanation/analogy that I have found to date that describes how I feel

since being diagnosed with RA/FMS.

I forwarded a copy of The Spoon Theory to all of my friends and family

with the note " Please understand that when I can't come visit you or

make a long trip to where you live, its not that I don't want to spend

time with you. Its just I don't have enough spoons to do it. And that

is the hardest thing for me to have to accept. I love you all "

I even forwarded a copy of it to my SS Attorney with a note that if the

SS Administration could only REALLY understand what someone like me

goes through on a daily basis, it would make the whole process of

applying and waiting for an SSD decision a lot shorter.

I appreciate all of the information, support and understanding that is

shared here in this group. There have been a lot of " A-HA " moments as

I understand more about my diseases as well as a lot of reassurances

knowing that I am not crazy. Thank you, thank you...........Doreen

[Guest guest]

I actually felt blessed the day I joined this group.  There isn't one individual

I viewed as negative.  I felt a warm, caring, supportive environment where

people would answer my questions and experience.  I was a member of another

health board for my FMS and THAT was negativity.  There was never any help or

support everyone always had to one up someone else on how sick they were. 

Myself, I choose not to BE my disease I still choose to be the person I am but

pace myself and take the treatments and live life the way it still should be

lived.  There are people born in this world everyday with an illness, some who

never have a pain free day.  They are the most positive people in the world and

truly my inspirations

From: <kmitch1966@...>

Subject: [ ] Re: helping my family understand

Date: Wednesday, July 9, 2008, 8:52 AM

Thank you, thank you so very much...I have to admit, when I first came on this

site, I was Oh my gosh everyone is so negative, and sick...it only took 5 months

to get me here..denial can be an evil thing sometimes, thats where I have been

living, and boy coming out of that is hard...Now I get it, your not all

negative...your all true, reality in its own form..Thank you all so very much

for your encouragement and wisdom...I will educate myself, my family and my

friends....Wishing all of you a pain free day...