Re: explaining RA to my family?

July 6, 2004

> Hi. I am a new member to this site and joined to ask for help on

how to explain to my husband how it feels to have RA. He is very

intense, active and likes to entertain, travel, socialize and have

family over a LOT! I can't keep up with his needs. We also have a

six year old daughter and I am getting totally worn out by the both

of them. It is so difficult to set limits with my husband even

though he tells me to say no when I don't think I can do something.

Sometimes I think I will be able to entertain family or travel in

the future, and when the time comes I may be too tired. He then

feels let down and doesn't understand why I can't just take a nap

and push through to the next event. We just finished entertaining

30 of his family members for a four day fourth of July celebration

and now I feel like I am having a flare. My feet and ankles are so

stiff and I am so exhausted, I have little left to offer our six

year old. If anyone has any advice on how to explain the severity

and unpredictability of my symptoms, please let me know. Thank you

so much - Sharon

>

July 6, 2004

Go to this site and click on the spoon theory.

http://www.butyoudontlooksick.com/

I recently went to Boston to visit my friend. I go up there about 3

times per year with my daughter (she turned 4 on the 4th). The

drive is 5.5 to 6 hours long. I make it because I rest before and

after, and really, the trip is all about hanging out with my

friend. My daughter plays with her daughters and it's usually very

restful. This trip a few weeks ago was to celebrate her and her

friends 40th birthday. They had dozens of people over, weeks of

preparation, days of errand running, etc. All I did was helped the

morning of the party by washing dishes, setting things out on the

table, putting some food in the proper dishes, etc. It involved

maybe 2 hours of standing and walking. By the time the party

started I was wiped out. The next day I told my friend, " Do you

realize I could never throw a party like you just threw. " She asked

why and I tried to explain that with the RA I would not have the

stamina. I don't think I got my point across well. I didn't go

through the whole spoon theory, I think, because I was just to

darned tired to explain.

It's hard to make someone understand when they have never

experienced anything like this. It takes time, patience and

perseverance. I have no idea how you could manage to host 30 people

for four days! Of course you are having a flare. I am going to

have a flare just THINKING about it!

One way I have described RA to others is that it's like being 9

months pregnant without the baby. People get why pregnant women

need rest, they understand the lack of energy. It's easy when you

see that huge belly. People don't get it about RA because they

don't see anything. But to me it feels just like when I was

pregnant, and people seem to understand the analogy. Show your

husband your ankles. Explain to him that throwing such a party

means you are going to be in bed for days. Take him to the doctor

and show him some pictures of people with severe joint damage. Keep

doing it until he see's that not understanding your limitations is

going to cause you harm each and every time you over do it, and the

harm can be permenant.

Then try to UNDERestimate what you think you can handle. It's easy

to think that " oh, next week I'll be able to do that. " But the more

you understand your limitations the better able you will be to

predict what you can and can't do. Part of this is about setting

your husband's expectations that you can't do what you used to be

able to do. Part of it is about your own expectations of yourself.

Now, my mom is disabled from RA and when I told her about the Boston

trip and that I'd never be able to throw a party like that, her

response was, " yes you could, you'd just have to pay someone to do

the work. " And she's right. I'm moving in a few days and I'm

paying someone to move me. If I understood my own limitations

better, I'd have realized I needed help packing too. Oh well, I'll

remember for next time.

Jennie