Posted 11/8/2015 3:47 PM (GMT 0)
Hi guys! I've been lurking but haven't been posting much. I really appreciate all the kind thoughts and love you've sent my way in my previous posts.
I'm still trying to recover from this hellacious tale-spin the meds sent me down (specifically I think biaxin was the one that ended up doing a number on me).
I'm always sensitive to meds, but had been feeling relatively stronger and felt good about my new treatment. But these new meds ended up triggering my old terrible, nightmare symptoms: burning neuropathy and terrible non-stop pain at the back of my head that just overwhelms me (along with a few others but these were the two killers).
Even after over two months off meds, the pain that was triggered has been unremitting and exhausting, but it has gotten less acute. The neuropathy is a lot better, but still lingers. Back in September the pain was making me suicidal and has now gone down to a level where I'm still fighting to survive every day but it is not quite as crushing.
The scary thing about the pain pushing me to the brink is that I want to live. I want to live more than anything. But chronic pain, especially of the terrible unremitting 24/7 kind that crushes my head continuously really takes a lot out of me.
I can tell it will get better, but it is exhausting and has been completely demoralizing. And it is going to take a while still. I've had to hop off all meds as there is just no way for me to handle meds and herxing (which is always an issue for me) when my body is in such a state.
Basically, I'm dealing with the trifecta: pain, fear, depression. The pain is what unleashes the latter two, and makes it very hard to distract myself as I can't focus or concentrate (which has always been an issue for me with this illness). I'm trying to stay as positive as possible, family has been amazing in helping me through this. It also helps to share my story and what I'm going through. And it helps me to hear your struggles and improvements as it gives me hope and also helps me not feel so alone in this terrible battle.
You know, the most amazing part, my mom could see how much I was suffering. But I was scared to tell her how the pain was pushing suicidal thoughts into my mind because I didn't want to freak her out. But I told her about it, I needed to tell someone, and she had the most beautiful response which was what I needed to hear. With so much love and compassion, she just hugged me and said, "I understand." That was what I needed to hear for whatever reason, I just needed understanding about how hard and how terrible this all is.
I've been dealing with this illness for 10 years, bedridden for the first 4 with no help and stuck with a bland cfs dx. 6 years ago was put on azithromycin by a doc and that helped me go from bedridden to lowly functional but still a lot of pain and limitations but I tried to make do. It was only about a year ago that I realized there were a lot more treatment options out there and while I have improved this last year on new treatments it has been very grueling and difficult.
But I had no idea meds could send me down the rabbit hole to this degree. And that is what is frustrating, no matter how much I detox, I am always smothered to some degree by my symptoms and meds are always difficult for me to manage. I know these meds work, but my body has a terrible time handling them. And I don't want to settle for the quality of life I've had, I need to try and keep getting improvements which is why I have to keep trying to find treatments that can work for me.
One thing that has happened though after these last months is I am much more comfortable in sharing and telling people how hard this is. I used to not want to burden people with it, heck, I wanted to avoid thinking about it myself. But it has been a grueling terrible struggle, and I've gotten to the point where I am more open about the psychological and physical toll this has taken on me. I used to be scared of people thinking I was weak, or thinking I was being overdramatic, or just not wanting to hear about my difficult situation, or plain not believing my situation or discounting its severity or thinking it was purely psychological. Well, right now this is what I'm living, and I hope they will be understanding, but I feel more free in letting people know the truth (if they ask or are curious) of how hard this is even though for all intents and purposes I look like a very healthy human being.
I'm trying to remember and focus on the fact that I have had improvements over time, hard-earned, but it is going to be a tricky difficult path no matter what. This has been an unbelievable setback, but I want to keep fighting and figuring this thing out.
Thank you for listening. Sending you all lots of love and healing thoughts.