I have never been the type of person who took a lot of medication–prescription or otherwise. However, since my lupus diagnosis I’ve had to adjust my thought process when it comes to trying to keep myself as healthy as possible. In my mind pills always carried the stigma of me not doing good enough. It was as though I believed that I was the root of the problem. Obviously, I wasn’t taking care of myself well enough and the consequence was that now I would have to take stupid little pills with horrendous side effects. It was very hard for me (and still is a lot of the time) to come to terms with the fact that I have lupus, that there is nothing I could have done to prevent it, and that I’m going to have to take medication most likely for the rest of my life.
For the last three years I’ve had to completely change my thoughts around it. What’s made it even harder is that now I am also taking 4 different medications to try to deal with my mental health and lately it seems that every time I see a doctor the number of medications or the doses I’m taking is increasing. I’m now up to 8 different prescriptions a day. And when you go from nothing other than the odd Tylenol or Advil for 40 years it’s a bit of an adjustment. After a bumpy road and some nasty side effects, I can say that it’s starting to feel like I’m settling into this new medicated normal of mine. I’ve seen the difference between taking nothing or missing a dose and taking something to deal with the symptoms of my lupus and it’s pretty much night and day lupus-wise. As for my mental health I’m just not sure yet.
I still find that my sleep is not as good as it should be. I still feel sad and detached a lot of the time. I guess I just don’t know which symptom is the one we should be tackling next. Is sleeping 60-70% of the time enough to move onto something else or should we try to get it to be better? My psychiatrist is great in that she doesn’t like to change too much, too quickly, so all that we’ve been dealing with since I’ve started seeing her is the sleep issues. I think it’s because if we can get the sleep issues under control, the hope is that other things might fall into place. So far that isn’t happening and I’m starting to get a bit frustrated. I just don’t know where to go next.
Do I need something else to help me deal with this sadness I feel all the time? And if so, where do we start? Do we up the Seroquel again to try to get the sleep even better or attack from another angle and maybe increase my antidepressant? I’d really like to get off of the Abilify and Klonopin if I can, but we aren’t sure how that’s going to affect me. I have another psychiatrist appointment soon and I’m trying to figure out how to be best armed with enough information so that she knows how things have been for me or the direction I’d like to go in. Perhaps I should start keeping a journal of my moods and sleeping patterns. I’ve never done that before but it might be useful.
I’m finding that the biggest hurdle is that I am a constant researcher and I just don’t know where to start anymore. Lots of people suggest melatonin to help with sleeping but I’m not supposed to take that with my lupus. Others suggest cannabis but it makes me super anxious which is something I don’t need at all as anxiety is something I already deal with. I also don’t know enough about herbal supplements and pretty much stay away from anything like that. And of course the big question seems to be which, if any, of these should we even look at? Is there an antidepressant that’s better than the Pristiq for depression and pain management? Are there some that are going to make me feel numb? Or sadder? Or something else? Is there one that helps with sadness and anxiety and pain (that would be heaven)? Do we stick with the ones we currently take that don’t seem to bother us too much (except for the arm tingling and weight gain) and just try to tweak those–because I’d like to avoid as many new side effects as possible? These are all questions I need to discuss with my psychiatrist until we can figure out what the best solution would be.
Whatever we do at this point in time, I think I need more. Just a little bit of an extra push forward, you know. Just to get me moving better instead of being stuck in this same, sad, tired place. I hope eventually that if we can get to a better place mentally I might be able to focus better again on my physical health because that’s taken a definite dive bomb since I’ve been on all of these new meds and I feel absolutely awful about my appearance and refuse to buy anymore new clothes.
I don’t know, but I have hope that there’s a perfect combination for me out there that will help me deal with all of these extra issues. We just need to find it.