Searching for my long lost energy... Oh, where have you gone?

[carriej22]

Hi Guys,

I woke up today around 10AM. (Hey, it's my day off) I proceeded to lay around until approximately 330pm. I managed to feed myself somewhere in that time frame. I also fed the fish, and the cats. I then spent the rest of the time lounging on the couch or in the bed playing with my phone or looking at magazines.

I went to my grandparents for supper, and after I ate I spent 20 minutes walking around outside my grandparents estate looking at the gardens and I picked a few vegetables with my grandfather.

I got home approx 2 hours ago (it is 8:18PM my time now) and I went down the basement, fed the fish again and lazed on the couch in the basement and watched the fish for an hour. Now, I'm ready for bed and this isn't really acceptable. I want to go out and do things and go SHOPPING and buy new shoes. I want my new job where I travel all over the province because that's exciting and the old me would LOVE THAT.

The new me is just thinking this all sounds like a really big headache and would like to go back to sleep and forget about the world (until it's time to eat, of course).

Long story short (not really, since that was a bit of a looooong boring story of my plain day) I need to find some energy. Like seriously, this is getting insane... There are things I need to do, and I can't do them. No one seems to take any pity on me (not that I want it) and regular things are still expected to be done on time...

Any suggestions?

[Dirty Don]

Take up a low impact, short timed workout...doesn't matter...something you like. Stick to it....mmmmm, six weeks probably. You'll be amazed at how your energy, relative of course, returns. My problem is once I feel better, I tend to lapse...again.

[Wegetarian]

Sounds like me. After I've taken the kids to school / daycare I might go for a lunch with a friend and do some grocery shopping and then I just have to go rest. If I do something that didn't use to take my energy at all, like spent 4 hours installing stuff on my parents computer I was compeltely beat for the rest of the day. The doc did say I should regain some of my energy a month after the meds started. I did spend two months mainly in bed before I got sick due to an operation. Have the docs mentioned anything to you?

Fwiw Netflix and HBO Nordic and my library's movie collection kept me entertained for a lot of the time I had to be in bed. I bought my last shoes (and almost everyting else) online :) Hard work is rewarded in the future, laziness pays off instantly.

Thanks Don for the tip! I think I'll try to force myself for some short walks in the evenings on the evenings I feel fine. Too bad gym and swimming, which I used to do whenever I had time, are forbidden for me now. I think a walk would be best based on what I discussed with my physiotherapist. Also joined an exercise similar to Yoga, but felt so bad last time as I hadn't slept that I skipped the first class..

[drz]

I learned the hard way that some times a lazy day is the best I can do. It is too easy to get delusions of adequacy and think you can do things like you used to do because you are now recovered or much better again. Learning to judge your energy level you have left and amount you can expend without depleting your battery is difficult but you will get much better at "counting spoons" so you can estimate more accurately how many you have left and how many a task will take. But it will also vary so an accurate count is often not possible so you need to learn to be flexible and make last minute adjustments. Tonight I am going to bed two or three hours earlier and I left an activity this afternoon to take a nap so I could do something for a couple hours later tonight. It was fun and enjoyable outing but I now find myself tired and exhausted and going to bed much earlier than usual.

[Wegetarian]

That is so true drz, unfortunately something I'm not yet able to estimate. Like two weeks ago I went out for dinner, was up for 7 hours without lying down even though most of the time I was just sitting and talking with friends. Felt fine when I came home, and wasn't exhausted. At night I almost fainted on my way from my bathroom to bed, called the nurse the next day and she said it might have been a side effect of MTX. I kind of figured I'd probably over-did myself since I hadn't been up for so long since early June. It was kind of sad since I figured I won't go out during nights anymore and cancelled another dinner. I do know I get tired quite early, so it might be a good idea to not go out - and its hard to leave early when having a great time with friends. That's kind of the reason I decided to just go for lunches with friends, since I have most energy then and its much easier to leave since other people need to go back to their jobs.

[NikkiNicole]

Energy. Such a rare, whimsical creature for most of us. I have yet to get any sense of energy back. The moment I think I have it and start to do a few things around the house it's gone, slipped out of my grasp and I find myself retreating back to the couch to rest. Sometimes, I push myself to keep going and that never ends well. I just get so frustrated and angry that I'm not getting things done.
I desperately need to go through boxes in one of the bedrooms and by the time I'm done with laundry or with grocery shopping and packing my lunch/dinner for work after cooking ... I can't even imagine doing it.
Someday we will feel energy again. SOMEDAY!

[carriej22]

Sometimes I wonder if I just push myself I will grow accustomed to a busier lifestyle. At 24, life does not permit me to be able to spend a lot of time relaxing... I really need to get back into the swing of things.

[NikkiNicole]

For myself, on days that I've pushed through and tried to get stuff done, I'm usually more exhausted and down for the count the next day. I am still searching for that happy medium.

[drz]

For myself, on days that I've pushed through and tried to get stuff done, I'm usually more exhausted and down for the count the next day. I am still searching for that happy medium.

Even worse is when you end up with several days or weeks of forced rest by becoming an inpatient from over doing it. The more fragile your situation, the higher risk there is of this happening. Learning to pace yourself and to have patience are essential to learning to live your best with Wegs I think. Not all of us can climb mountains or do marathon bike rides but more power to those who can. What an inspiration they are so we too can dream about doing much better some day.

[carriej22]

Hmm...

Well I guess I will see what I can do. I'm kind of against the wall right now, so I don't really have a whole lot of choice.

[pberggren1]

I forget what dose of pred you are on Carrie? Maybe your adrenals are not coming back on line with the pred taper?

[carriej22]

2.5mg.. Have been for awhile

Today I didn't stop. I feel alright so far.

Tomorrow I'm driving 4 hours roundtrip for job training so hopefully it holds up.

[pberggren1]

Keep us posted hun.

[mzschaumkell]

Hi guys, my partner Luke was diagnosed at the end of June. He has been back at work fulltime now for a month and has gained a lot of energy back and is able to work all day and then still have energy to do what he loves. He is scuba diving and playing golf again, and has gone for light hunting trips. He is still on 25mg pred, but some of the things that have helped him (may be worth a shot!!). He has been taking apple cider vinegar (with the "mother") it literally gives you an instant boost. He takes chlorophyll, aloe vera juice and a tsp of active manuka honey. Alot with heaps of vege, fruit and fish. This has changed his energy levels!

May be worth a shot....

[mishb]

I friend of mine (another weggie) took some aloe vera juice, a little while ago.
He got very sick, had very bad stomach pains and the runs.

I like the above results, that Luke has had, but I would suggest that people google what each of the above will do for you, prior to taking them........in the case of aloe vera, this is used for constipation troubles - so could be of benefit to some, that may have issues from taking medications. The bad thing, for my friend, was that he didn't know what the aloe vera was used for, and gave it to his whole family.

Yes, you guessed it :crying:

Just do your homework first - maybe ask your specialist if it is okay, or even check if it might have interractions with whatever you are taking......prior to using any of the above.

[annekat]

It sounds like an ideal day, Carrie, resting as much as you wanted, spending time with your grandparents, etc. I think we all need days like that whether we have Wegs or not. Soon you'll be involved in your new job and I'm glad to hear you are looking forward to traveling around the province. The energy you need to do that will come about, I think, just don't overwork yourself.

Nikki, I like your new picture.

[NikkiNicole]

Thanks. Unfortunately, it is a pre-prednisone picture. (I absolutely will not have a picture taken until I have the energy to focus on losing weight and even then it will only be to document progress.)

[Wegetarian]

So many beautiful women in this forum http://images.deucescracked.com/suits/heart.png

[pberggren1]

You have no idea......:wink1:

[Alysia]

You have no idea......:wink1:

and the handsome boys...
:thumbup: