I haven’t written in a while..I really haven’t felt up to it..at all. My life is just on this rollercoaster that some days (most days) I don’t feel like we will ever get to the end of this ride. I have never been in such a dark place filled with so much despair and pain in my whole entire life..I want it to end..I want the pain to go away and for all of this to be a terrible memory. If I hadn’t contemplated ending my own life several times in the last while, that would be a lie..I have..things have been so dark and frightening that I just want to say goodbye some days..I can’t do it..I don’t have that in me to say goodbye to everyone and I don’t want to be a statistic..when I do die, eventually..I want my cause of death to be known…I want my brain to be autopsied and I want Lyme disease to be recognized..it is in me..it will always be in my brain..it controls my thoughts, emotions and how I react and it has been very active lately.
I stopped antibiotics 8 days ago today..Azithromycin has a total life of about 17 days and it is the one that has been causing all of my issues. I have been panicking, hyperventilating (randomly for no reason), feeling like I can’t catch my breath (when I actually am breathing just fine) and waking up with nightmares, fear, racing heart and in a sweat. This started when I went on this drug about two months ago and it hasn’t let up yet. It scares me because a few months ago before we had a diagnosis, I had a resting heart rate of 145-150 and I wasn’t oxygenating properly all the time..it freaks me out that this could happen again and I could suffocate or die while everyone is away for the day..I don’t like being alone..I am not ready to be by myself yet. I am also terrified of the dark..the darkness outside..this is new-ish..I’m not sure when this started but especially when I am by myself, I don’t like the dark. To say I am scared is an understatement..I am terrified.
I’ve taken solace in playing the piano again..it helps relax my mind when I can’t get it to stop on its own…sometimes it can take a couple of hours before I am relaxed enough to lay down. I have been really exhausted lately, I don’t think my sleep is of excellent quality (I even take melatonin at night just to help)..I slept about 10 hours last night and I am bushed..I just don’t feel comfortable in my body right now..it is a scary place to be.
I had expectations of myself for when I came back here. I had pictured life a lot different from what it is..I thought I would be driving my car, cruising the city, going for coffee and meeting my friends..I had pictured a totally normal life..I was overly optimistic. I have watched my life slowly slip through my fingers as I have slowly (over a period of years) lost the ability to do anything…ride a bus, get groceries, go for coffee..my life feels empty right now..I don’t even like being in my own house by myself..a place where I should feel safe..I don’t. I can’t even walk my dogs..that is what I wanted to do when I got back here..take them out for a walk and I haven’t been able to do that. I still struggle with noise and over stimulation of my nervous system especially trying to follow a few conversations at once..basically sitting at a dinner table. Loud children really bother me and I had to take a two hour mental break and go sit in the dark just to let my body relax. My nervous system can only handle so much..I feel like I have taken about a hundred steps backwards since week 6 on IV meds. I am a lot better since I got back, the improvement is really slow..I think writing helps a lot..I need to get some of this mental and emotional trauma out of me…I have a lot..my nerves are fried and I am struggling..every day I cry, break down and sob because this feels like it won’t end.
I am very lucky that I have people who care enough to come and spend time with me when I am just feeling like total crap and can’t seem to handle the day. I had a respectable morning yesterday and then went grocery shopping and attempted TV..I think my brain was still recovering from the weekend and it turned into a pretty crappy day of hyperventilating, feeling short of breath (which I am sure is me feeding it with being overly aware of how I am breathing and attempting to take a deep breath..when I feel like I can’t, I try again and the cycle continues..then I actually do feel short of breath.), super agitation (tried everything to take the edge off..wish I could have had some baileys…), more crying, a warm bath, playing the piano..nothing really seemed to help. I think it is unlikely that this is all “panic”..a lot of it is my autonomic nervous system being attacked and the subsuquent die off of Borellia Burgdorferi that is dying off inside my head..plus that crappy antibiotic that I apparently am having a slight adverse reaction too..I won’t take it again..it makes me feel to agitated. However, some of it is definitely deep rooted anxiety from everything I have been through and yes, I should probably talk to someone about it…I want to feel a teensy bit better first.
My promise to the people who are supporting me through this is to stay alive and fight until the fight is easy..I am going to keep fighting..I am not giving up..but I need to make the fight tolerable because all of the meds are making it pretty hard on me..the way the infection has invaded my brain (is terrifying) and my worst symptoms are my herxheimer reactions (panic, fear, shortness of breath, agitation)..I need to make this a lot better for everyone (myself mostly). My immune system is in over drive, it is fighting hard, it is reacting for the first time in a long time to this mass infection that has taken over my body and it is over reacting and making me feel worse. I have been taking anti histamines to try and dull the response but I don’t think they are as effective when I take one everyday..I am trying to refrain from taking one today..we will see how it goes. I have stopped most of my meds and just started back on CBD oil today..I am hoping this will make a bit of a difference and help calm my nervous system down a little bit (I doubt it..but its worth a shot). I can’t get over how tired I am..ten hours of sleep (give or take) and I am ready for a nap..I don’t nap..I often find it to hard to lay down during the day and have only managed a nap once since I have been home and it was actually nerve wracking trying to lay down and get comfortable when your brain just seems to be overly focused on everything your body is doing. I have to try at some point today..I think I am just exhausted and my body isn’t resting enough..it needs rest to heal..I am not getting what I need.
One day all of my broken pieces will be back together..I hope that is soon..the wait seems endless.
-M-
climbingoutoflymedisease 