[-jimi-]

Yea serious issue huh?

But yeh, I've actually got a few things done, things have felt worthwhile, I had some fun.

If I stay on this schedule, I will have three activities a week but after one week I'm done in. I'm not happy. I'm so tired. Now I'm talking one day of care worker, one day of work and one day of a thing I joined. It feels so rotten my energy is already spent on that. So that it is not fun anymore.... (Care worker 1.5 hr, work 5 hours, activity 3 hours, lame 9.5 hours of doing anything a week.)

I mean... I have a very hard time accepting I have a severe physical illness that will slow me down to this point or worse for the rest of my life. With it, they talk about "pacing". Dang, I want fun sometimes, not just pace pace... blah blah. I had a few new projects, but I guess I just will have to delay them.

Now I feel like I will never feel that alive again. Maybe having fun was a bad idea.

Maybe having fun was a bad idea.

nah...
You may just need to adapt and accept. Still sounds like progress to me.

[Sam2]

Originally Posted by jimi...

Yea serious issue huh?

But yeh, I've actually got a few things done, things have felt worthwhile, I had some fun.

If I stay on this schedule, I will have three activities a week but after one week I'm done in. I'm not happy. I'm so tired. Now I'm talking one day of care worker, one day of work and one day of a thing I joined. It feels so rotten my energy is already spent on that. So that it is not fun anymore.... (Care worker 1.5 hr, work 5 hours, activity 3 hours, lame 9.5 hours of doing anything a week.)

I mean... I have a very hard time accepting I have a severe physical illness that will slow me down to this point or worse for the rest of my life. With it, they talk about "pacing". Dang, I want fun sometimes, not just pace pace... blah blah. I had a few new projects, but I guess I just will have to delay them.

Now I feel like I will never feel that alive again. Maybe having fun was a bad idea.

Sometimes you have to prioritize. I too suffer with a lifetime physical pain that will never go away. Chronic, intractable migraines. I'm on a ton of pain meds and had at least a dozen surgical procedures to implant peripheral nerve stimulators. Most of the medications do little good, my body has developed a tolerance and no other meds touch it. There are on average three break through pain days a week. It does add to depression, and you must have days when you wonder why you keep fighting. If you have to give up one of your activities, so be it. You need to take care of your emotional health as well. The more tired you are, the worse it can get.

Don't give up on having fun. If you have an opportunity, go for it. I know that when I start a day, I'll have one thing that I can do before having to retreat to the dark and quiet. Its a balancing act and you have to be careful. I don't even know that some things can be paced. If I go slow, the same thing happens as when I go fast. Usually, if I want to do something, I pick a day before a weekend or a day before I don't have to work. That way, even though I know I will have to pay for the fun, I'll have a day off to do it. Currently, I am able to work two to three half days a week. A real waste considering what I had to do to get the degree!

Please don't stop having fun. Its those times that keep us going when things are bad.

Sam2

[-jimi-]

Thanx... ugh I hate making priorities. I didn't work for several months and I really felt better. But when I got back to work and saw the ponies they just filled me with such joy. I feel it is a privilege just being near them, feel them breathe on your hand, groom them, pet them...

And coming home to tired tired tired.

Yup it does feed into depression.

I think even after these years I just cannot accept my limits. One part is just me pushing or me wanting, the other part is everything I've been told, that I'm not tired I'm just lazy, even med staff have called me lazy. Some of them still think I'm a hypochondriac and that it's not "that" bad. I try to convince myself they have no right telling me things like that, but every time I'm called lazy, I want to go out and DO something to prove them wrong.

I appreciate your kind post.

[Hellion]

I don't have any real physical issues, but I can kind of relate. I end up having to pace myself due to my mental health issues because even getting too worn out doing things I typically like can get me too overwhelmed and stressed. So I kinda get the frusteration of being endlessly slowed down by something you don't really have control over.

[-jimi-]

Yea I feel ya.. it's a downer sometimes... Sorry dude.