I'm back from sunny Turks & Caicos and back into the cold. Just curious, but I found myself almost paranoid around sick people. I was near coughing, sneezing and nose-blowing people on the plane. I know you can't avoid sick people, but being on Prednisone and feeling like crap without energy I don't want to add in a cold or sore throat. I almost laughed at myself at the last connection when I realized I was breathing into my own little travel pillow stretching my neck away from the person sitting next to me. Am I a nutcase or what?
It was nice to get away, but a 5 hour plane ride wore me out. I got to my destination and went right to bed. I couldn't even go out to dinner with my husband. I slept for 14 straight hours. I've never done that. At best, I sleep for 6 hours and that's with a sleeping pill. I think it was on the 4th night on vacation that we left the property and went to a restaurant. I had my husband bringing dinner into our room. Kind of sad, not like things used to be where we tried a different place each night. Oh well, the new "rhupus" me.
I did notice that the warm weather was okay though, I was moving around a little better and loved being in the water. Great being able to "move" in the water, but swimming didn't work. I found that moving my wrists to pull back the water was torture.
I didn't walk the beach, which I've always enjoyed in the past however I did get rest. In 11 days I've read 5 books. I basically sat on my ass and rested only going into the ocean for exercise. Fun, but way different.
Well, blah blah blah, I'm sure you're bored with my blurb but I'm not sure how I feel. I mean, I know I feel like crap,lol....but I'm not used to the "new me". I feel lazy. I feel bummed out for what I had vs. what I have now. I feel guilty. I should be saying "there are worse things, etc. etc., but I want to scream at the top of my lungs how much this sucks. Wah wah wah....such a whiner. sorry.....
It sounds like a lovely vacation though.
Do you cover up in the sun? This is extremely important with Lupus as it can worsen your condition. You should check out www.lupus.org. I am very sun-sensitive and take extreme precautions. When I've been over-exposed to sun, it aggravates everything for months. I use heavy duty sunscreens and keep covered. I try to keep my skin unexposed as much as possible. This means long skirts, long sleeves and pants, not exactly what I desire in the way of style.
Sounds like a good time even though you had to do some things differently. Welcome back!Debrakay, you're at the stage of raging against the disease. I suppose that feeling comes and goes always when we have this, but at the very first it's intense, consuming. I've tried to let myself rage away, within reason, when I feel it so much, and not blame myself for the feeling. I hope you can do the same.
If you had lost a home/career/loved one or a combination of those, you would be expected to have a good run of anger, despair and disorientation. Getting rhupus and trying to adjust to a new you and new life--and definitely not a "new and improved version"!--is an enormous loss. And unlike losing the home or career, this loss can't be recovered. I think it's more like losing a very important loved one. You're left with the sweet memories of what was, the grief for what can't be any more, and the struggle to make a new life without them.
In a few months you will notice improvements in how you're adjusting. You'll start to feel a little more like your old self inside the new and unimproved body/life. Doesn't sound very encouraging, but actually it is a better place.
Even though you had a nice vacation in some ways, you've lost your old vacation self, which means you've lost vacations and travel--something that means an awful lot to you.
But, as you adjust mentally and physically, you'll get vacations and travel back. I know you haven't given up vacations and travel up literally, but you've lost them in an important way. It's in that way that I believe you will be able to get back to some extent.
Most likely you will eventually find the combination of drugs, treatments, and life adjustments that makes you more functional, less fatigued and miserable. Then you'll be able to go out more in the evening, even if only 2 or 3 times instead of every night of your vacation. Maybe you'll be able to walk on the beach--even if it's just sunrise, sunset or evening strolls to stay out of the sun, and the strolls are shorter and slower than your old self used to take.
I despaired of ever being able to go beach walking again. I'm still in the adjustment and medicine experimenting stage too, so I don't have my travel/vacation self back either. But I'm getting some of it. On a recent business trip that took me to a great beach I was able to take a very short beach walk--in shoes, no bare feet for me these days I'm afraid--before the fatigue and foot pain sent me back. It felt good to do that much. I haven't had a beach walk on our own beach yet, though (we live a couple of miles from the water). There's some sort of grief and anger stopping me from trying, I believe. But in the spring I don't think I'll be able to stop myself from trying.
Anyway, welcome back. You're one more experience closer to feeling adjusted, one more day of medical experimenting closer to disease control.
Thanks for listening to me go on and on.....I bounce between being "okay" with this and being "pissed off". I really do appreciate your replies and advice.
I know that I'm not supposed to be in the sun, so if you're at the beach and you see a gal with long sleeves and a hat in the water...that's me. And on the beach...under an umbrella, long sleeves, hat, sunglasses and a towel over my legs incase the sun is seeping through. Yup, quite the beach babe, lol....NOT. Even though the sun feels good on your body, I know it's not good and not only will make me ill, but make me look older so I don't mind being the overly dressed gal, lol.
Rk - How's your rhupus? How long was it until you had some energy?
i have been in this house for four months. vacation sounds good. does it feel better just to get away even tho you feel lousy? i hope you will get better. i think all of us get down at some point in our problems. be encouraged GOD IS STILL ON THE THRONERKGal, that was a great description of what the loss is like. You're a pretty good writer yourself. I love reading your posts.Welcome home Debra. Glad you're back.
Try to let go of the quilt. None of this is your fault and if you could change things you would....you've got enough pain and suffering in your life without adding that to your list. I know that's easier said than done; but one day you'll be able to let that go and you'll feel like a load has been lifted.
Again; Welcome back. We've missed you.
Debrakay, I don't have rhupus, just RA and maybe Sjogren's. Sorry I was unclear.
I started getting some energy back after a good round of prednisone, and now some more improvement after a good while on plaquenil. It's all relative. And it varies by weather, stress, rest, and who knows what else.
There are no more days like the old days! At least not yet. Maybe with continued drug experimenting and better disease control there will be some days + nights as good as the old days. I try not to expect that though, have adjusted my definition of a good day and am getting ok enough with that, usually.
But now there are more days with better or longer energy than how constantly awful it was when this first started. And, as I'm getting better at knowing (and doing) things like pacing myself, resting at times during the day, saying no to all kinds of stuff, exercising enough but not too much, etc., my energy management is getting better, which also helps.
Deanna, thank you for kind words. That's high praise coming from you.
[QUOTE=lolo] i have been in this house for four months. vacation sounds