Another bend in the road

Today I had an md appointment here in town and my elderly friends ( a couple both in their 80s) took me and there is a huge flight of stairs and no elevator to get into the doctor's office. We had a somber conversation which was both of us agreeing that my days of climbing those stairs are over. She suggested I find another doctor ASAP. Most of the time when I go out I take my rollator walker....however because of the stairs it would not have been useful....however I didn't know about thier plans for the rest of the day. They took me out to eat lunch, to the Dollar Store and out for frozen yogurt. I am COMPLETELY wiped out. My legs were so weak they were trembling while I was out. They STiLL feel shakey hours later.

My body continues to surprise me. I want to go out and do stuff. But it's so HARD to do anything without massive fatigue and pain, I end up wanting just to go home. What are the things you have had to give up. DO you 'listen to your body?" or tell it to "shut up and keep walking"?

I have that argument with myself endlessly. I hate feeling like I am giving in or giving up but at the same time, logic yells quite loudly that I will go farther if I pace myself. The battle rages on.

Perfect example is that I gave up the martial arts (for a lot of reasons) but now I feel like I lost a lot of my endurance and I have a hard time with everything. I couldn't tell you if that was what was happening anyway or if i let go of something that was keeping me strong. I think that's where the argument comes in for me.

Today I finally saw a doc and found that I have a bad throat infection and double ear infections. I am exhausted. The glands in my throat were swollen for a few days but I joined by co-workers at my supervisors home on the beach. It was a lovely weekend but I left after dinner the first night because I could feel it coming. I got home that night and literally slept for a day and a half, I was so wiped out. And I didn't do much of anything while I was out there.

….and I am supposed to get on a plane Wed morning to go see family. I wouldn't think much about it if it were a simple trip but it entails 2 flights and a 3 hour drive. I want to tell my body to shut up and keep moving (and I feel like I am hiding behind the illness if I don't go). Yet, I am literally trembling from the exertion its taking to post.

Sorry for rambling…LOL…I think I could sum it up by saying simply that I know exactly what you are talking about.

I just returned yesterday from a week at the beach on my family "vacation" and I sooooo wish I could have paced myself better! Even though I am extremely sun sensitive (and could never spend time on the beach itself) I still attempted to shop, walk on the boardwalk, do the rest of the things I used to do, and - the final "undoing" - clean my way out of the sandy-and-dog-haired-house for my brother's family who was coming in after us. And when I took a look at the flight of stairs I needed to climb to sit in the only available seats left in the "loft" at church yesterday, I nearly died!

It's so hard for me to watch others - especially my husband and daughters - run, bike, and take part in other physical activities - often before I can drag myself out of bed in the morning! All three of my daughters also suffer from autoimmune diseases and joint pain so I feel like a double-loser when they push their way through it but I can't. And yet, I also wince when I watch my youngest daughter (still recovering from Guillain Barre syndrome) who pushes herself one day and can't move off the couch for two days following.

I think we all need to strive to find the right balance for our own bodies and our own tolerance for pain and fatigue. And I think that takes "listening" to our bodies with the foreknowledge of what happens when we don't. We can't compare ourselves with others and each one of us definitely need to learn when to "call it quits".

So let's hope you find another doctor with an elevator. It seems like you already have some good friends - who,though in their 80's may have more energy than you do, but just may understand that the sometimes even the simplest tasks are just too much for us.

We all reach that "bend in the road" but prior experience may be the best teacher in letting us know what to expect once we round it!

All the best. . .


Hi Qadosh,

You know, I planned to respond to this, as I can relate so well to it. My body is the same way with me, and I push it too. I have to or I would never have the time I do with my grand kids, or ever get out of the house at all.

I know we constantly remind each other about pacing and knowing our limits, but that surely doesn't get us anywhere! Sometimes the only way we get to do anything that brings us joy, we know is going to result in a big crash!

I know that you must struggle terribly, having Sjogren's is challenge enough but add RA and PsA and you really have a fight on your hands!

I hope that you are soon able to get to a better place.

Wishing you well,


BTW, my mom is 82, we brought her down to live with us shortly after my baby brother died. She hobbles now too after a fall that resulted in a broken hip, and even on my good days, I sometimes struggle to keep up with her, and sometimes just cannot!

It never ends. At 3:00 this AM my husband woke me (out of a sound sleep) to go down to the basement because we have another leak. (what was he doing in the basement at 3:00? He was checking for leaks. He's saved our butts a number of times by his OCD checking. He goes to work at 3:15 which explains why he was up then) I however did not want to be up then. I got up and quickly walked across my foot got caught on a wire to my fan and I stumbled pulling the fan plug from the socket.....and breaking the toe next to my big toe. Just what I needed. Now I can barely put any weight on that foot.To top it off, it made my husband so anxious he has chest pain.

So I'm grateful I didn't fall headlong and break something bigger than a toe. But It's bad enough. I can't call the plumber until probably 7:00. I hope I can catch him...Then I have to somehow get downstairs and clean up the mess. My daughter is leaving this AM for NJ so she won't be around to help me.. Although my housecleaner is going to be here. I can have her help me ....what a start to a day!

I hope you can soon get through all of these trials and tribulations, seems you've had more than enough of them now!

Hope that toe heals quickly!

hi Susan,

Thank you for your responses to my discussion. It is good to know we are all pulling for each other ...even if our families or spouses don't "get it" we have each other we know what it feels like.

I have a BBQ invitation for tomorrow. I haven't gone ANYWHERE other than church in maybe 6 months or a year (not counting MD appts.) I want to go but am quite nervous about it. They do not have a single chair I can comfortably sit in or tolerate for more than 10 minutes. And that means I have to sit inside and not go out around the pool. Actually I think it is supposed to rain tomorrow....which makes it more crowded in the house so increases social contact but it also makes it competitive to get a good chair. (s/b "good" chair). I don't know if I'm going . It also means i have to stay out "past my bedtime" and the day following I have a tea party at my house...only a couple of women but still takes some effort. Tomorrow I need to shower, bake, make a side dish and then over see my house keeper (and stay out of her way), then go to the BBQ and stay til ten at least. I still can't decide whether or not to go. Any advice?

My back has really really been hurting and the peripheral neuropathy has me relying on even more drugs than i normally take for pain. I go fro the recliner to the bed every 20 minutes. I really do think I iwll be miserable tomorrow. And if I stay home and KNOW that (the misery) , even though I avoid the pain, I feel sad for yet another end to fun and social gatherings.

I know, sometimes we have to choose, which is seldom easy, but it sounds as though you already know which one to prioritize. It's always an internal conflict as our hearts and minds always want to be in on these gatherings, but the body just says no, or turns on us when we should have said no!

I have a promise to keep with my 11 year old grandson, to help him go through his dresser drawers and organize his clothes for school, which starts in less than a week. Of course the storms are all rolling in, which makes my movement even more challenged, but I won't let him down! I'm going to shoot for tomorrow!

I hear ya about making decisions. Seems like everything requires serious consideration these days. The storms are rolling through the area here too so joint pain is rolling in too. What fun. Thankfully, I love a good storm and watching the power of nature whipping though takes my mind off everything else.

I just got another layer of bad news yesterday. Well, I got test results but I don't actually know what its going to mean to me yet. A friend of mine keeps reminding me that I am too stubborn to let this get me though some days I think it is sheer fear that keeps me going….Fear that if I "lay down" to this, I won't get back up. The only thing to do is keep going! LOL…maybe he's right. I am too stubborn. From what I read, I think most of us have that element in some form. Yay us!

Dear EnjoyLife,

My thoughts are with you and your neighbors as I watch the flooding on LI today on the news! It seems entirely possible that some of you are still trying to get things back to normal from Sandy.

Always just one more thing...

Hope you are high and dry!

OOOHH boy. What a day. I went into work 2 hours late because all 3 routes I can possibly take were closed due to flooding. When I got there, only 6 people made it and the whole back of the building was flooded. Ironically, it stopped in the office just before mine so i got to work to the sound of fans and a gigantic shop-vac. LOL….we had some trees down, etc but you are right. The areas that are so devastated by Sandy were the ones that got hit hardest again this time. I lost my house in Sandy so I am inland and higher up these days, dry and happy but everyone is feeling the upset again. Thanks for thinking of us!!

We were hit hard by Sandy but fared well in this storm (I'm in NE PA) ...Im glad you are safe and dry....and that you can still work (happy happy JOY JOY)

You were too? I'm sorry to hear. The storm really packed a wallop for this entire coast, just about. And yes, I went to work because I was totally stir crazy. LOL

One coast in on fire, the other is in deluge!

Glad everyone is okay!