[Stellatum]

I'm really disappointed. All my symptoms are back. It took a week and a half for the IVIG to make me strong, and then I got two weeks of health. Now I'm back to where I was before I got bad enough to need IVIG.

Did I "overdo" it while I was strong? You bet I did! And I'm not sorry. I made up for lost time. I did a huge spring cleaning on the house, taking care of all the messes that had piled up over the months I was sick.

Two weeks of surprising strength was enough to convince me that the IVIG helped, which is good for my peace of mind--it's confirmation that I have an autoimmune disease and that Imuran is a reasonable treatment. But, oh, I was really hoping for at least a month. And now I have to get used to being sick all over again.

While I was healthy, I was able to start seeing a psychologist for help dealing with this. I'm grateful for that. Now I'm in the swing of it, I should be able to keep it up--it's just the starting up that's daunting and required energy. She is helpful to me. I am going to ask her to help me figure out how to deal with periods of low energy where I just don't feel like doing anything, even things that don't require muscle strength--it's those periods that really get me down.

Abby

[Annie59]

Abby, I am glad you spoke of this. The part of feeling like not doing anything. I struggle with this. AS I wrote swallow test today I did far far more than usual these past days. It came to me that I wondered if I was even being a somewaht self distructive out of frustration, anger and pushed beyond what I know is safe for me and my breathing , maybe my whole body.

The other side of the coin is that down time I generally know has to be factored. But are there points that I am just throwing in the towel with appointments that are badly needed (my teeth are a big big one) and backlog of laundry, a shower that I am just giving up cause I am so weary, sad that this is my life and the complication level itself is exhausting.

I would be interested in what your person says about this if you are comfortable to share it.

Annie59


She is helpful to me. I am going to ask her to help me figure out how to deal with periods of low energy where I just don't feel like doing anything, even things that don't require muscle strength--it's those periods that really get me down.

Abby[/QUOTE]

[Stellatum]

Well, first you have to realize that my situation is quite different from yours: I am not nearly as sick. But she did point out something that was helpful. I told her that when I don't feel like doing anything (even the things I could do, like read to my kids), I tend to just browse the internet, etc., and that spending time like this depresses me. She said the reason it depresses me is that the whole time, there's a voice in my head saying, "You should be doing this, or that, or something worthwhile!" So even though it's physically restful, it's not mentally refreshing.

She's right about that, at least for me. Next week I'm going to ask her for suggestions for things I can do when I'm in this sort of don't-feel-doing-anything state that are both physically and mentally restful. But I have a feeling I'm going to need to discover these things for myself. I think the main job of the psycho-therapist is to help you identify exactly what it is that's bothering you.

Abby

[alice md]

Abby,

First, I don't think you need a psychotherapist to understand why its bothering you. It is obvious that if you have to slow down and stop what you are doing normally it would be very bothersome. It can even be quite devastating. And it requires time and adjustment to learn to live with that.

I don't know if this could help you, but it helped me.

At some point, after a lot of frustrations, I realized that this illness makes my times scales different. eg-what I once accomplished in one day, would take a week. Also, deadlines had to be stretched. And there was no place for multitasking of overlapping of tasks in any way. Trying to keep on doing what I did before in the same way, just couldn't work.

So, what I did, apart from my usual schedule diary, I got another one, in which I would mark a long arrow with a marker going from where I have to start working on that task ( I always took at least a week back or more if it was a more daunting task, or I was going through a rough period in which I could easily have a few days of not being able to get out of bed). I then made sure not to schedule anything else during that week or so.

The task could be something at work or something at home, or with friends. everything was a task and required time to prepare and sometimes time to recover from, which were both marked in my calender.

This way if I had days in which I could do nothing, they were taken into account. (even normal people don't do anything at night when they sleep, so for me nights were sometimes a few days long).

I then decided to see those times, in which I could only lie in bed, as a time to learn. I would decide to try and learn new skills. for instance I taught myself to write in my head (never thought I could do that). I could eventually write an entire page, and even edit it with "copy" "paste", and then an entire paper. Before, I would have 20 versions for each manuscript, after, I would have the final version ready and just had to write it, once I was doing better and could sit next to my computer.

I also started telling myself stories and writing books. (something I never did before), or listening to music my son chose for me and put on my MP3 player. Or just lie in bed and let my thoughts drift where ever they want.

I also made sure to have proper cover-up for those times, so that I would not feel guilty (as I initially did) for lying in bed instead of doing what I need and should. I also got my friends, family, colleagues and even patients to understand that if I am not there as planned it is not because I do not want or forgot, or think its not important, but because I can't. And whenever I missed something like a good friend's wedding or an important meeting, I made sure to apologize and explain why I wasn't there, and schedule something else (eg-come and see pictures of the wedding with the friends and bring the present I planned to give, or send a report of what I was supposed to say etc.).

when people would occasionally be angry at me, I would suggest that we make a shortcut, instead of them being angry at me, and me being angry at this illness, why don't they just be angry at this illness instead of using me as a go-between? (this almost always worked ).

This way of living has now become so normal for me, that I find it hard to believe that only 6 years ago, I could drive to work, see 20 or more patients in my clinic, take a short break, go to make rounds on the wards, run back to the parking lot, pick up my son (always in the last minute), take him to his cello lesson, and go shopping while waiting for him, drive back home, make dinner, eat it with my sons and husband, then, after they went to sleep, go and read, sometimes go back to the hospital at night, or go to work in the lab (on my research) in the evening, see a movie, go out with friends etc.

It was a long process for me and for those around me to adjust to this significant change in my life. And I don't think there are shortcuts in doing that. Even with that, there are times in which I feel angry sad and desperate when I find myself having to stop, miss and postpone all my plans.

[Stellatum]

Thanks for telling us this, Alice. It's very helpful and encouraging to see examples of how someone learns to live with a disease like this.

Abby