Hi Tracy,
I just spent 15 minutes writing a reply and then went and hit some button or other and it has disappeared into cyberspace!! :lol:
I don't have much to add really but wanted to say sorry for your diagnosis even if, like you, when I was finally diagnosed I was also mightily relieved. I have found being diagnosed, treatment etc. to be easier to deal with than the "limbo" state of being undiagnosed that went on for years before.
One thing I wanted to say. If you have any questions on meds, or if you have worsening symptoms, you must remember to get in touch with your doctor or his secretary/nurse and, at the very least, leave a message. Often we don't "complain" enough or we don't want to "bother" people. Try to remember that it is his job, he chose to do it and he is supposed to be there for patients like you that need him.
Also, do try and adopt a kind of "zen" attitude when it comes to life. Even without a chronic illness, planning life out tends not to work terribly well but with one, it can then be incrediby frustrating and stressful. Living one day at a time and enjoying that day as much as you can does tend to work better. On the other hand, you musn't think that in a negative way. For example, it is not because you felt like death warmed up this Saturday that you won't be able to attend a friends wedding in two weeks time, you might be fine!
The disease will go up and down. Hopefully the meds will mean that you'll just have the odd day where you feel just a bit too tired and achy. There will be times where it is all a bit much and you don't quite know how to deal with those feelings and they will come at the most surprising times. It is at those times that you need to try and come here and write about it and get it out. It helps tremendously to feel support from others at those times.
I think another thing we all do is kind of deny anything is going on. I know I do to a certain extent in that I never think of myself as an "ill" person. That has certain advantages but also the disadvantage that, if I do get quite ill, I then get hit very hard by that realisation and that can be hard to deal with mentally. Again, the support from people here make all the difference at times like those.
Learning to pace yourself is also very important. You mentioned having to take a nap. Most of us here have to take a nap quite often and I have learned to do that without any qualms. I'm lucky to be able to work from home most of the time but even then there are days where I just have too much too do. Last week I had to work in town on Friday morning and then had loads to do when I got home. The problem was, when I got home I was so exhausted I was having trouble putting one foot in front of another. I had a choice to make. Either, I would go and sit at my PC and stress in front of a jumble of words that I couldn't possibly piece together (I'm a translator) or I would "waste" precious time in going to bed. I now know that I must go to bed so, I went for a nap, slept about an hour, got up feeling far more human and quickly polished off the work that I would have sat looking at all afternoon if I had tried to do it when I realy couldn't.
I also know that, if we have an evening with guests for dinner, I will be far better company if I have had a nap in the afternoon than if I try to struggle through.
I really hope the meds work quickly for you and that you are soon back to an almost normal self.
hugs :hug:
Katharine
