Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: Cricket on October 20, 2011, 01:40:30 PM

Title: Golden Years??????
Post by: Cricket on October 20, 2011, 01:40:30 PM
If these are my golden years - forget it!!

It's not like I expect to live a super exciting life, but come on.

I'd like one that at least I could cope with the pain

One that I could have some enjoyment (garden, shop, go out some)

This pain is consuming my life, all I do is take meds and sleep.  I think when I am sitting down I will clean my living room, just dust and pick up then I stand and I think well   maybe a little later.

I am SICK OF THIS!!  Sick of TV, sick sick sick!!!

I think my dh must be sick of me too!

Enough of my whine as it does nothing except make me feel bad for writing it.  >:( >:(
Title: Re: Golden Years??????
Post by: Cheryl on October 20, 2011, 02:28:16 PM
I'm sorry, Cricket!  Whining is allowed here, though.  I'm wishing you a better day tomorrow!
Title: Re: Golden Years??????
Post by: Carolina on October 20, 2011, 03:18:54 PM
Heavens!  Cricket.

Whining is perfectly acceptable here.

You are whining for all of us at one time or another, believe me.

I wonder what medications and remedies you are trying for your various symptoms?

Some times a small change or addition can mean a larger positive result.

I leverage myself up out of my reclining position to go to the Y to do some water aerobics several times a week.

It is hard to shower at the Y and even just put on a muu muu to go home in, rather than dressing completely.

But the outcome is that I feel better having moved around a bit in the water.

And I have some OTC pain meds that seems to help, and an RX for Cymbalta that helps too.

What are you trying?

Inquiring minds want to know.

Hugs

Elaine

Title: Re: Golden Years??????
Post by: Meld256 on October 20, 2011, 09:44:45 PM
Cricket,

Please never feel badly for venting to us.  Many, many of us have had the same thoughts of being totally sick of the pain and fatigue from time to time.  I know I have and it stinks.

When it goes on and on, it can really wear on our body, mind and spirit.  I'm glad you reached out to us. 
Like Elaine asks, is there anything at all you think you might try differently?  Different meds, counseling?

Remember we are always here for you. I hope that gives you some bit of comfort.  ;) Please keep posting.
Sending you some soft hugs,
Melinda 
Title: Re: Golden Years??????
Post by: A66eyroad on October 21, 2011, 06:02:40 AM
Cricket, you are singing my song!

I am also having a very hard time. I can't walk even a couple of blocks, I keep losing my car keys, I spill things all over the floor, I burst into tears at the drop of a hat (and then I drop my hat). I have sores on my tongue and I keep hitting my teeth against them by mistake. I have a headache and an earache and a sore throat. I wake up at 4 a.m. and can't get back to sleep, and I work full-time so I can't sneak in a snooze during the day.

I just feel crappy and I'm tired of being me.

I want a do-over.
Title: Re: Golden Years??????
Post by: Narablueeyes on October 21, 2011, 08:15:02 AM
Quote from: A66eyroad on October 21, 2011, 06:02:40 AM
Cricket, you are singing my song!

I am also having a very hard time. I can't walk even a couple of blocks, I keep losing my car keys, I spill things all over the floor, I burst into tears at the drop of a hat (and then I drop my hat). I have sores on my tongue and I keep hitting my teeth against them by mistake. I have a headache and an earache and a sore throat. I wake up at 4 a.m. and can't get back to sleep, and I work full-time so I can't sneak in a snooze during the day.

I just feel crappy and I'm tired of being me.

I want a do-over.

Were we separated at birth???
Title: Re: Golden Years??????
Post by: Carolina on October 21, 2011, 08:47:48 AM
Nara I think we're triplets!

Elaine
Title: Re: Golden Years??????
Post by: Narablueeyes on October 21, 2011, 08:56:38 AM
Quote from: Carolina on October 21, 2011, 08:47:48 AM
Nara I think we're triplets!

Elaine

I wouldn't doubt it!!  I just spent the last thirty minutes retracing my steps to find my iPhone.  Then I spent another ten minutes cleaning up the mess when I knocked my glass of diet dr pepper off the table.  Durn...
Title: Re: Golden Years??????
Post by: irish on October 21, 2011, 10:55:41 PM
Me thinks that when we get AID we turn into klutzes. I have never spilled so many soft drinks, coffee, iced tea, water, you name it, in my life.

I am always digging in my purse and breaking into a sweat cause I can't find what I need and then have to start digging all over again.

Then, and this is the worst of all, I have turned into the biggest slob in the universe. When I cook I just throw things here and there. Especially when I bake. I never clean up until I am all done and it looks like something exploded in my kitchen. My husband can't believe it. I tell him that I have to hurry cause I need to get it all done and in the oven before I fall down. Get it in the oven and then sit down and rest so I can clean up the bloody mess I made.

Then there is the getting the laundry done, folded in the basket and placed in the living room to put away---as in what week was it I was going to put this away?? Hubby comes some days later and asks if I have washed underwear. Well of course I washed the underwear, look in your drawer. Oh, yea, I was going to put that away wasn't I. Who have I turned into.

The dining room table is always full of old mail, folded clothes, medical reports to be filed, some items from Walmart that need to be put away. Oh, then there are the boxes that I set in the office. Husband wants to burn them and tell him "no way" cause I am going to clean and get rid of some things. Like what month would that be??? My life is paved with good intentions only I can't remember what they are. Irish ;D
Title: Re: Golden Years??????
Post by: gemmax on October 22, 2011, 04:20:48 AM
Hi. I am new here, but we have a lot in common. Age, some of our illnesses and definitely sometimes feeling like the golden years are definitely not the proverbial pot at the end of the rainbow. I don't blame you for whining...I mean who are you going to whine to if not to others with the same problems? I am too ill right now to sit up comfortably, am in constant pain, and for some unknown reason as of yet, my blood pressure has suddenly taken a dive.....Anyway, what I wanted to do is to tell you how I get through the days. The old saying 'one day at a time' if one is able to apply it, really does help me. There is no need to look toward to the future for me, since I have been ill for 19 years. But I can look for to the small things just today. Like you, I feel really sick of TV, Books, etc. I've taken up sketching, writing in a journal. I know that sometimes, we can't even use a pencil, but if we can, it can be fun. I don't claim to be good at it, but I can entertain myself for hours trying and using my own hands, etc as models while drawing. I guess what I am saying is...there is no path except the path of acceptance, and then trying to make our lives okay for just one day. I am a Christian, so my faith helps me a lot, and if you are a person of faith (whatever your particular faith) it can be very helpful. I have had a Christian blog for a long time, and just recently began an autoimmune blog. Last week I wrote about what I had done to my bedroom to make it more comfortable, more fun, etc. since I live there most of the time. If you are interested, you will find it at Shakin' The Tree http://shakinthetreewithgayle.blogspot.com  (http://shakinthetreewithgayle.blogspot.com)and the Christian one at The Bloomin' Blog http://gaylesbloominblog.blogspot.com (http://gaylesbloominblog.blogspot.com)If you do not blog, it is an activity that can be fun as well. I feel for you, and I am so sorry that this has happened to you. I know what it is like to have to change your dreams because you life has changed.  Take care of you today.
Title: Re: Golden Years??????
Post by: Pisces24 on October 22, 2011, 02:44:32 PM
yeah I've often wonder what they mean by The Golden Years??

I have to rely on Social Security as I didn't get started until my late 30s to save any money. My folks were disabled when I was a teenager so what money I made, went to help the family. And No they couldn't life on $700 a  month with their medical bills!

I won't be able to stay in my house when I retire as I won't be able to afford it. I amhoping that  what money I do have in my 401k (which has went down  :'( ) will at least cover my medical insurance!    Since Sjogrens is progressive, I don't know what my condition will be then. So plan is to get a mobile home so I don't have to do yard stuff.

Believe me I live pretty frugally right not and the prospect of living even more frugally after retirement is not pretty. I'm solo too - no close family anymore. I honestly don't hold out hope for a Golden Years Retirement.  :(
Title: Re: Golden Years??????
Post by: smallfry on October 22, 2011, 06:02:04 PM
I wonder if the spinning wheel on the other post dose "do-overs" ? :D

I am with you Cricket If this the Golden years someone else can have it.

Cheryl
Title: Re: Golden Years??????
Post by: soycoffee on October 22, 2011, 07:38:10 PM
OH, big groan, followed by gig sigh.

Well , the good thing is that I have a lot of challenges on my plate.

The bad news is that I have a lot of challenges on my plate.


I'm thinking that in three years or so, it will get better -- with some good points in the process.

Well the good part is that it is six days since the last "I don't want to do anything" day, when I was virtually flat on my back, with no energy, maybe two "spoons." So I may be able to cope, basically, as long as the "two-spoons" days stay about 10 days apart. OR, if only, if only, if only, I could get a prescription for Prednisone, about 35 or 40 mg /day.

Looking forward to drugs, I am.

SoyCoffee


SoyCoffee
Title: Re: Golden Years??????
Post by: Meld256 on October 22, 2011, 08:43:28 PM
I think many of us must feel the same.  I'm "only" 55 but don't see my Golden Years looking very golden. 

I feel badly when I read of those diagnosed in their 20's and 30's.  I understand that it's frightening to think what their health will be in another 25-30 years.  I do not intend to offend anyone younger, by any means, but hopefully they can understand our feelings, too.

Here when we have worked hard for years, our children are grown, and we are getting a bit older, we might think we have the money and time to travel and do things we never had time for.  Now our money is spent on doctors and meds, and our time is taken over by pain and fatigue.  I try my best not to look at it this way, and to see the blessings that I have anyway.

My husband's grandmother was the best person I've ever met who always saw the goodness in life. She went through many tears and joys in her 92 years, and saw the positive in everything.  If she were still around, I'd ask her more how to do that.  ;)
Title: Re: Golden Years??????
Post by: soycoffee on December 02, 2011, 11:17:56 PM
I reread this thread tonight, and realized that life has gotten better. Made up with my daughter, and got a prescription for 5 mg of Prednisone /day, and have been exercising a little, which improves my mood, and am sleeping better.

Sometimes it's very small things. I still have to move, of course.

As I read others' posts, I listened for the dreaded "step-over-it syndrome." That is when one doesn't even bend down to pick up something on the floor that has fallen, or is out of place. It's just too much bother. Step-over-it (SOvIt Syndrome) has been understood as "shove-it" syndrome, or SOLVE IT syndrome. The signature feature is a floor full of stuff, and no preschoolers in sight. One negotiates from room to room by stepping over the small things that have fallen to the floor, and not been picked up.

I had it about three years ago. Nobody above actually complained of the full syndrome, which is heartening.

All the best, and with tongue in cheek,
Soycoffee
Title: Re: Golden Years??????
Post by: Meld256 on December 03, 2011, 12:02:54 AM
soycoffee,

I'm so glad that life has improved for you!  Sounds like some really positive changes have happened. Amazing how things can happen in just a couple of months.  ;)

I'm in a better place than the day I wrote my post, too.  Like most of us here, I have my roller-coaster weeks where I can feel pretty good or rotten and that can change within mere hours. However, I have many things for which to be thankful, and just maybe I'm looking forward to the golden years more than I thought. 

I hope you continue in your "upward swing" of things.
Melinda