Unrealistic expectations

[Ashewoman]

Life moves on with SJS. I've probably had SJS for over a decade but it has gotten worse as time has gone on. I have learned over the last five years that sometimes-- and more often as time goes on-- my body does not cooperate with what I want it to do. I believe this is what happens when you lose enough fluids that the central nervous system conductors (fluids transmitting signals within your body) are hitting and missing intermittently. The result is I sometimes unintentionally sit when I meant to take a step. I drop more than I actually manage to grasp effectively. And just walking across a room can be more of a lurching proposition than graceful. 

It's cost me some activities I greatly enjoyed. Had to give up my wire sculpture jewelry, never really mastered stained glass, and so on and so forth. But mostly I've found new things I can still do. My paper crafts are more like a kid in kindergarten than fine art but those are somewhat more manageable than some of my heavier art items and at least it's not so terrible I make a total mess of it.

I've also learned to expect less of myself in daily activities because expecting the impossible is just a set up for failure. One thing I could do to simplify my life was buy ice rather than try to twist a darn ice tray and get frustrated repeatedly while also hurting like heck. It doesn't solve the whole ice situation but I had to prioritize. I love ice in my drinks. I didn't want to give it up. And in the end, what the heck does it matter if 1/3 of the ice I'm attempting to put in a glass lands on the floor? Even after it melts it's just water on the floor and it dries itself after an hour or two. I still have a cold drink with the 2/3 that made it into my glass.

However, I have had no success at getting anyone else to understand these limitations or the great thought process that went into resigning myself to what I cannot change, what is hardly worth struggling with, and leave enough energy to maintain what I do want to continue doing regardless of the cost. Perhaps on a creative level because no one really cares about that, but they tend to care a lot about daily activities and my abandonment of those.  I keep hearing that I'm not trying hard enough.  WHAT?! Who are these idiots who think they have a right or the ability to accurately judge my "trying"?  Best I can tell, no one can measure another person's struggles from across the room.  And sometimes, these people are expecting the impossible and then berating me for it. Which frustrates me immensely .

I suppose after saying that I have to stop a minute and applaud the fact that at least I'm not still expecting the impossible from myself??? YAY me! but excuse me for being more than a little angry that I'm being judged harshly by someone who's hands work.

This morning a family member needed my help moving a mattress. HELLO? I can't pick up ice effectively 30% of the time? How likely is it that I can grab one side of a squish, heavy, dense object nearly as tall as I am and haul it inside without it touching the ground?  I dropped it of course. And then the yelling ensued about how I wasn't trying. I walked the heck away. After which a grand temper tantrum in the style of Old school Donald Duck only with proper non-duckish cussing began.  It ended with the pronouncement "And you didn't even TRY!"

Honey if I hadn't been trying I'd have said from the start. "I ain't doing that. I can't do that." In fact, if I did ANYTHING wrong today, it was not saying that to begin with. My fault in this WAS TRYING to do something I know is impossible for me.  I should have said so when I was asked. Being willing to give it a try may have been the mistake. However, I'm not sure that wouldn't have left me guilty as accused. But I'm not guilty of not trying.  I am guilty of having SJS and therefore having hands that sometimes do not work just because I want to help.

I apologize for my tirade here but I just needed to say all that. It is bad enough to have to deal with the frailty that this illness has given me.  But sometimes I think the reactions of others is the hardest pill to swallow. The bitterness is not something I feel I can handle without the support of this forum because people who don't have the same problems don't really understand. And I know it doesn't affect us all the same way exactly, but I also know if anyone could understand it's people from here.  Frankly, I had SJS a long time before it got this bad in that way. But I know stuffing my feelings about this kind of thing is just toxic. Thanks to everyone for listening. GG 

[Joe S.]

If you have not read and shared "spoon theory" please do so. It helps to explain what we go through.

[Carebear]

Dear GG,

You are welcome to come here to vent any time.  I hear your frustration.  I hope at the very least you feel less upset by this relative's insensitivity and lack of empathy.

So vent away.  It isn't healthy to stuff things.

Remember that beach...

[Carolina]

Dearest GG, please feel free to vent.  Venting and complaining here helps me to find my way THROUGH the problems and the feelings, to pick out what to keep, what to discard, and to find new solutions, on my own and from others.

We have to go through the feelings to get to the other side.  AND there isn't a soul on earth who will understand the way our Sjogren's Angels do.

Family?  Friends?  Understand??  Accept?  No, and I think it's too scary if they care, and if they don't, well, they don't care! Enough said.

Your stories about trying to do things and getting half of them done, half way, is perfect.  And when my husband says :GRAB THE END OF THE (Mattress, box, board, piece of furniture).  I just look at him.  Really, I have severe osteoarthritis in both hands, GRAB?? Ha.

And when people say, 'just back up' or 'step sideways'  this is a person with profound neuropathy!  It's all I can do to just stand there without falling over.  I cannot back up, or step sideways.

But I keep trying for various reasons, and learning again that I cannot do things.  So.  If I can't accept my own limitations on most days, how can I really expect others to do so.

And remember:  You don't LOOK sick!  In fact you look terrific. (with great effort, but who cares).  In fact I happen to look 20 years younger than my actual age, which is even more confounding.

So, unrealistic expectations describes life in general for us.

Hugs,  Elaine

[irish]

I hear ya!!! I will add that I am wondering if you have had any occupational rehab or rehab that shows you how to do some things in an easier way. There are so many new products out there that can make life easier to us.

Also, having as assessment of your condition can rein-force your own opinion of how you are doing. Heavens knows the friends and relatives wouldn't understand any of this if they were hit over the head, but sometimes it makes us feel better if we understand out own limitations better.

I hope that you can get some control over the people in your life. I know I had to have a talk with my kids cause 'You don't look sick". I also told one son that if I come and tell him something that is a health problem it is not to complain. Since my hubby died I have no one who really knows how I am doing. Soooo the one son was informed that he is my "go to" in order to keep him apprised of my health.

Man, having chronic disease wears a person out, doesn't it. Irish

[Head2Toe]

I hear you GG, and I feel your pain.  Or rather - I feel my own pain    I think one of the benefits of my getting older is that I have fewer and fewer problems setting boundaries.  I understand why you didn't decline right away - because saying no and setting boundaries takes some getting used to.  I would have immediately declined a request to help move a mattress because the very thought of it sends 'danger' messages to my brain.  I've learned that the consequence of pushing my body beyond its limits are MINE - while the other person carries on with their life without experiencing (or even thinking about) pain. 

I've done things like set time limits on telephone calls (15 minute max) because my arms may scream in pain for hours afterward if I hold the telephone longer. I've told everyone about the 15 minute limit (and why), so they have all been officially 'notified'.  So - when I'm talking to my Mom and we're 20 minutes into a conversation and she's already given me 5 false good-byes - if my arms are starting to hurt, I tell her - and she lets me go immediately.

Because of neck OA, I sit at the head of the table whenever possible in meetings because it minimizes head movement.  Twisting to look at people around boardroom tables for hours at a time can cause me pain that might last for days.  When I'm with groups I meet with regularly - I tell them about the OA, and so far everyone has been very willing to accommodate me.

Take baby steps to get yourself started, and once you get on a roll, it'll get much easier.  Your guilt will fade away, and most people will stop asking you to do things that hurt.  As for those people who don't seem to get it.... to them!

BTW - I love your perspective of ice on the floor!  That's a perfect example of 'Don't Sweat the Small Stuff!'

[quietdynamics]

I am finally getting around to moving some bins I brought home when my mother passed.
Things I needed to go through with more care and peace.
They have been in the dining room so long.. What I could have put a lamp on top and used for decoration? Not really but, feels like that.

Asked DH to take upstairs and then I lifted/moved a laundry basket full of photos, albums, framed photos closer to stairs and DH was mortified I would hurt myself... so my family 'gets it".

In a convoluted way, when I do not feel well, am in pain, etc, I do not  need to say anything because I do "look sick", strange pallor and behave sick much to my chagrin, no energy; a limp wet rag. I become very quiet... well sick.

Even 6 year old granddaughter is attuned to this..

Must be like living with someone with bi-polar. I have some energy, clarity one day, one morning.. then not.
Various degrees of flare/disease.. then less.
Drop a pebbles in water and it affects all around us.
I ask family "how are you doing with this?", "are you OK?" because I can see questions, concerns in their eyes, and they 'hold it in'.  Not healthy for any of us.

Setting limits is not building a wall:
I learned early on, as a single parent of two.. how to say 'no' diplomatically and clearly.
It is healthy to set limits.  Self preservation.

Life does happen and some things we do have to take on despite Sjogrens and we do the best we can and learn how ask for help. Difficult for our independent self.. but healthy in 'allowing others' into our actual world.
We each learn our daily limits.. which do change.

Hopefully, posting here and giving "the mattress moving" caper episode time to pass a bit, you can get to a point where you can factually tell your sister your limits, and the price your body pays when you exceed them.  Ask her to come help you do something in your new place.. "allow her into your reality?"  Seeing is believing and actions have more impact than just words.

*I turn ice tray upside down and  run under cold water; then they fall out..
and I moved the shelves in refrigerator so milk is at hip level..  lol.   Everyone adapts.

[Ashewoman]

I have read the spoon theory. It's one of my favorite explanations. I guess it would be nice if some of my friends and family had read it. LOL And if I've said it once, I'll say it many times again: "Life would be so much more predictable and simple without the pesky people."

Irish I have not tried occupational therapy. I wonder if I could afford it because my insurance expects a $45 copay on specialty appts. But I will mention it the next time I see PCP in May. Perhaps they don't charge per session or one or two sessions will be enough. I just know I never could afford traditional physical therapy when they suggest it. Although truth be told I also can't tolerate a person handling me like they do with the PTSD. It's like too invasive to be moved around like a doll in my opinion.

I will take to heart several of the other suggestions for ease of access that you guys made too many to mention. It's all awesome ideas for minimizing pain. I've been saying because my new home has this long central hall about 40 feet which I end up running stuff back and forth 50 times a day, that I'm going to get a rolling cart so one trip there and back carries more than I can hold in my hands. I just gotta decide which utility cart is best for that. LOL

Thanks to everyone for your support. You guys rock! GG

[Carolina]

OK, the words "rolling cart" just jumped out at me!

Time for a rolling cart in my life, preferably with handles like a shopping cart!

Or not as the case may be:  LIST:  grab bars for every part of my life and a rolling cart. 

I'm on my way to an easier life.

Thanks!

Hugs,  Elaine

[brooks1teacher]

Gentle hugs for those moments (and there are so many) when we get frustrated and exasperated because others don't understand the situation.

I also feel your pain with the limitations and I have set up a lot of boundaries which make my life quiet and annoy the heck out of others at times.  I can't care about that any longer, though.

I am 44 and have been consistently ill since 2004. I am single with no children but I have two awesome cats that I love with my whole heart and who give me unconditional love in return.

I work full time as a second grade teacher and that wears me out. This was the first time in months I got together with a friend and we shopped at 3 craft stores for a few hours. I came home and promptly went to sleep.

I don't do a lot of social stuff and have strong boundaries with my family. My brother and sister live out of state and my sis is getting married in May on a Sunday. I don't have the money or the amount of spoons to fly down one day, do the wedding the next, and fly back on the third day. I barely survive my weekends as it is.  She knows and wishes I could come but seems to understand. I missed my brother's wedding last June because I was still working. I just can't do a lot of things I could 20 years ago.

I am mostly okay with limiting myself because I know it serves me and my best interests.

Thank goodness we have this place to vent.
B

[litliwlowa]

GG

Irish I have not tried occupational therapy. I wonder if I could afford it because my insurance expects a $45 copay on specialty appts.

Have you considered looking into Vocational Rehab through your county? Worse they can do is say no, but they might say yes.

As to the vent, yes been there done that and have learned over the years to be more assertive about what I can and cannot do, and interact more with people who "get it", and limit my interactions with people who don't "get it".

Hugs

Amanda