Having Sjogren's Syndrome Means I Can't Do Everything

We had bags and cans and packages stacked everywhere. 

I spend a great deal of time here on Reasonably Well blabbing about how important it is to know one's limits. To accept the realities that are the result of living with a disease that saps energy among several other significant symptoms. To then adapt and learn to live differently: not worse, not better -- just in a new way.

Easy to say. Hard to do. After a decade plus of living with Sjogren's syndrome, I still struggle with my limitations, not only in terms of what I can do but what I'm unable to do. And if I can't be realistic or honest about my limitations, then it follows that accepting help in dealing with them is almost impossible.

It's become increasingly possible -- possible, but not easy -- to find myself saying 'no' to many things: to decline invitations for events that I know I am unable to participate in comfortably, or to give up hobbies and interests that I enjoyed in my pre-autoimmune life.

But one thing remains almost impossible for me to do: to say 'yes' to my friends that offer to help me.

It's so much easier to be the giver of assistance, rather than the recipient, isn't it? The giver gets to share. The recipient has to swallow their pride and admit their deficiencies in order to accept help. What a bitter pill to swallow. Ah, but last week I made a baby step towards a realistic assessment of my needs and more importantly, to be able to reach out and ask for help.

This is a big deal.

So I'm looking forward to hosting our annual Thanksgiving day extravaganza. I expect to serve around 30 people a sumptuous turkey dinner with all the trimmings. I can't wait to fill my house to the brim with family and friends and good food. I live for those wonderful times...

It is one of those things that will require far more energy than I have but it's also one of those situations for which I'm willing to pay the energy price. And last week I was discussing it all with my friend Naomi. I told her that there were a few things that I wanted to do in order to make housing and feeding lots of people a bit more efficient and easy: I wanted to clean out my pantry and make some kind of inventory of what food supplies I had and what I actually needed. In years past, I would just make an enormous shopping list, buy it all and just stuff it into my already bulging pantry shelves. But this year, as I looked in there every morning, I realized that there just was no more room. And I wondered what the heck was lurking in the far back recesses. I couldn't remember the last time that I gave my pantry a good cleaning.

As we were lingering over our drinks in a coffee shop, I told Naomi that my goal for the whole week was to slowly and methodically remove every last can and crumb, examine expiration dates, scrub the shelving, and start fresh before I could plan a holiday weekend's worth of meals for a houseful.

She said, "How long will that take you?"

Oh, I won't be able to do it all at once. It will probably take me three or four days if I just work on it a little at a time.

"That doesn't sound like much fun. Why don't I come over one day and we can get it all accomplished in just a few hours?"

I thought, Oh, never! NO ONE is going to see all the crud and outdated food that's in my kitchen.

She looked at me expectantly but didn't say another word. And then after all these years of saying 'no', I realized how refusing her help would be a dumb stupid thing to do.

So I said 'yes'.

Wow. I said yes. The sky didn't fill with storm clouds and lightning bolts, the earth below me didn't split in a catastrophic earthquake, and well......nothing happened.

I just said 'yes', and she smiled and said, "Great!"

So last Thursday, Naomi appeared bright and early. I had coffee brewed and my cleaning supplies at the ready. For three and one half hours, she cleaned and scrubbed. I checked outdates and cut shelf liner. We discussed organization and the merits of various types of canned goods and --- had a great time.

Guys. It was fun. Saying yes was a very good thing.

Now I have a sparkling clean pantry, which doesn't mean that the rest of my kitchen matches it, but every time I open those doors I smile.

Yeah...I've kind of fallen off the organic foods wagon. I still always buy organic bread and milk though. Do you like my mother-in-law's cracker tin from the 1950's? Tucked way in back is a quart of the last batch of maple syrup that John's dad made. He's gone now. I'll never use it but I like to think of him when I look at it...

So what have we learned here, Julia? Hm. I would say that sometimes swallowing your pride is actually kind of a pleasant experience. And here's proof: last night after we finished a delightful evening with Terese and Greg, and Terese cleared the dishes from the table, I asked her to load them up in the dishwasher.

GASP. Yes, I did. And do you know what she said? She said, "Oh, goodie!" Seriously. And then she proceeded to whip all those dishes in there and we had the dishwasher humming away within minutes. After which we watched a really enjoyable ridiculously corny old movie.

Baby steps. I learn acceptance/reality in teensy little steps.

And, just for the record, the oldest thing that we pulled off those dusty shelves was a can with an expiration date of 2002. Ha!