I had my doctor's appt today, and I received the prescription for Low Dose Naltrexone...in the future to be called LDN. I had to go to a compounding pharmacy, which was actually a nice personal experience, and they even price matched another pharmacy. A month's script costs only $18. It could be a whole lot worse, yes it could. I'm starting on 1.5mg with the intention of a likely increase to 3mg in 4 weeks.
I'm still not certain that I'm going to start it tonight, although knowing me I will. It's been an interesting experience examining my intentions and purposes for trying this medication. Of course I hope it will work, but there's a chance that it won't. I need to be open to both futures. I don't like the idea of being even more dependent on a medication, but in truth, I already am dependent about 3-4 times a day. Realistically what will adding one more med at bedtime do...not much on a practical level at all.
I've felt some level of anxiety and even some fear around this, and I've been exploring why. I thought most of the day that it was because it's something new, an off label use for a drug, an 'experimental' Tx. then I thought my anxiety was perhaps the perception of dependency....maybe a little.
Before class tonight I was chatting with a friend and I decided I must be afraid that the Tx will actually help, and that I might be able to return to some beloved activities, that my mind might be clearer in class again, and that maybe I'll actually make it through a tough nursing program. (something that's been in question with all the issues I've had this past year) I was certain that I was feeling anxiety around success...that maybe if I felt better then I'd expect more from myself, that I'd have to perform better..or something like that that seems rather silly in this moment. But it makes sense on some level.
And then after class I realized another key piece of the puzzle. I realized that a lot of my anxiety was about what happens if I feel better and then get worse again. I am afraid of further loss, of lower energy, I'm afraid that I'll feel better for just a short time and then it will all go down hill again. A fear that, considering the relapse-remission cycle that I've been in with this for at least 12 years if not more...seems perfectly reasonable too. Each time I've done something that helped I thought that I'd *finally* found the solution and things got better, sometimes I can say that I even felt well or healthy for short periods of time, but then I always went into another decline. This process has been emotionally devastating for a long time in my world, but at least now I can understand it. Now I can wrap my mind around making the best of each moment and each experience because I really don't know when things will get bad again. At least the trials of this past year and my declining health have finally led to a diagnosis and a greater understanding of myself.
So with the collective emotional experiences around relapse/remission, I think it's perfectly understandable that I may have some concern around a Tx actually making a difference in my overall health situation. I am forgiving myself for feeling discomfort and anxiety around this. I allow the possibility of health into my experience.
On another note, I do intend to journal more regularly about this Tx. It will benefit me, and I truly hope that others out there who might google LDN and ME/CFS like I did might find this blog and find some benefit too.
I'm told that there are only 2 reported side effects of this drug. The first is a possibility that I may have some trouble sleeping the first few nights. I guess I can handle that, although it does concern me because I'm already well wearied from my move last weekend and I haven't yet recovered. I don't want to feel worse because I can't sleep...I still have a life I need to make it through. The other reported symptom is intense dreams for the first few nights as well. I'm pretty ok with this one. I don't have a lot of experience with what some might call nightmares or scary dreams, perhaps because I've struggled with insomnia since I was 12 years old and don't often remember my dreams. I also hold the belief that dreams are en excellent way for the conscious mind to receive information from the unconscious, the Higher Self, from those who have passed on, and from Spirit guides. If dreams are more vivid, that's a plus in my world. ;)
Many blessings to all who are reading this and silently supporting me on this journey. I am thankful for you. <3
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