I wasn’t going to write today. After all, too much of a good thing, even if really good, is still too much. But, no aspects of this journey are off limits right now. So here is where it’s at, to closely quote an Alley Cat.
I am having a mental crisis today. These are part of the equation too. As much as those of us who live with a chronic disease want to live side by side with our diseases gracefully, that is rarely the case. Hopefully though, we can break down at home, in private, or in our support groups whether web-based or physical meetings. (see sidebar for some helpful links to support groups) Best case scenario, we will have family and friends who are understanding and supportive as well. But the truth is this, many of us don’t have that. Many of us have friends and even family who don’t support us and don’t understand because they cannot physically see what we go through.
I’ll be the first to admit that I have it pretty good. My husband and my children are willing to pick up the slack when I am sick and really don’t like it when I attempt to do difficult things. But even they can’t keep it up all the time. They tire quickly when I can’t manage the stairs or am in so much pain that I’m ‘down’ for the day. They will accept that I need them to get me things, but want to do it on their terms. And they can be forgetful.
So I try not to need them. I try not to be sick. In fact, I have been trying to find ways to be able to go off my meds and manage my disease naturally. First because I truly believe that that will be more healthy overall and second, well, maybe if I don’t need the meds, then I’m not really sick. Then I can have my dream. I can be normal and not worry about the studies and the side effects. And I can finally stop hurting.
In order to do that I have talked to my doctors. But most of my meds are not relinquishable. Or so they tell me. I do know how to reduce meds safely. In most cases, I’ve been through it in the past. I have tried to reduce or go off meds before. I wasn’t as passionate about healthy eating and natural remedies then. I just wanted to see what I didn’t need. But I learned how to go about it and I have been applying that knowledge lately. And It was working. Or so I thought. Until the pain came back. I decided i would live with it for awhile. I’d rather have pain and have a healthier body or deal with it for a bit and get used to it right?
Guess again. It got worse. And I started to do nothing during the day. Nothing. And I kept on hurting. So two days ago I went back up to the full doses of everything. I hope it works. I think. Hence the reason for my mental crisis. I don’t really want to be back on my meds again.
Sounds crazy right? If my pain stops, take it! And I agree. But I also agree that the meds I am on are affecting my balance, my memory, my personality… My life in general. Therefore I shouldn’t take them! I am sooo frustrated at this very moment trying to figure out what I believe and what is best for me and my body. And I just can’t. I can’t figure it out, I can’t deal with the pain, I can’t put up with the side effects, and I can’t chuck everything in the toilet and flush! So I cry. That’s all I can do right now. Cry silent tears that don’t actually form or fall down my cheeks-I do have Sjogren’s after all.
Hopefully, I will be able to sleep now. I have cried and I have written. Maybe my mind can settle down enough now to make relaxation possible. And things are easier to think about and solve during the day. So I will end now. Oh, and I mustn't forget to take my pills before I go to bed!