I feel like a bit of a broken record lately. Just when I think I have hit my breaking point, that I've had enough, and that things possibly couldn't get worse, well - they do anyway.
Naturally, people always tell me that "it's got to get better from here" or "at least it can't get much worse, right?" At times, I've believed them. But lately I've been feeling, again, that freedom from this agony just isn't in the cards for me. I mean, I really hate to be a debbi-downer. Pessimism is obviously not an attractive quality. And I know you're probably all just as sick of hearing this, as I am of saying it. But I believe I have finally hit a point where that small sliver of hope has finally gone completely AWOL.
It's like out of all the baskets I was putting my eggs into over the years, Lymestop was the grand prize of an Easter egg hunt. I truly thought it was the answer to all my prayers. And to tell you the truth, I have to say that on most days I do see improvement in a lot of my symptoms. You would think that this would lift my spirits. And I guess it kind of does. But I would seriously take all those symptoms back if I could JUST. GET RID. OF THIS PAIN.
I look back on pictures from 4 or 5 years ago, before we moved over to Olympia - and even though I was very sick, I was still able to live life. It was super difficult, don't get me wrong - there were many, many times I had to bail on plans with friends, or call in sick to work to stay at home, writhing in stomach pain - and I spent even more time and money on doctor visits back then than I do now. But the hubby and I still got the chance to get out and socialize every now and then. I was still active - playing softball, going to the gym, hiking, walking. It was much easier to pretend, to myself and to the world, that I was normal. If I had known back then how hard things would be now, I defintely would have taken more advantage of the things I was capable of at the time.
Now, I feel like I'm on the brink of disability. I'm trying so many things to manage my pain, but nothing is working long (or even short) term, and every day is just getting worse. It's become so difficult to walk and stand, that I feel like it may almost be time for a wheelchair. Except that sitting hurts more than anything, so the thought of that makes me want to cry even more than I already do.
I've still never run across anyone who has the same pain like I have, and I've spent countless hours researching online, with a small ray of hope that one day I will find a blog of someone just like me, who has found a way out. It sucks when you feel like the only person in the whole world who is going through this exact thing. When you try to explain what the pain feels like to doctors, but they just don't comprehend it. It's like I'm stuck in a world where I have my own language that no one else speaks. It would be so nice if an office visit involved some sort of symptom transference. Like, if I laid my hand on a doctor's shoulder, he could feel exactly what I do, to properly diagnose and treat me. Oh, if only life were like a sci-fi movie.
Some Lyme patients don't even have pain. And those that do, describe it a lot differently than how I would. Yet there are so many reasons that I feel like this just has to be a symptom of the disease. Mostly because when everything else really flares up, so does my pain. I've had a few good days over the last 3 years - and it doesn't seem like a "regular old nerve problem" would just get better overnight like that. I was actually aware of these issues developing, years before the pain set in. I would tell medical pros about the extreme tightness and tingling in my legs and arms, but no one ever paid attention. Back then I didn't even know I had Lyme, so I was even more lost than I am now. I feel quite sure that because this specific pain all started post-back surgery, that the infection which was slowly infiltrating my nervous system, exploded after the surgeon cut me open. What I wouldn't give for a do-over.
When I was little, I used to get these horrible stomach aches at night. To this day, I still remember the dread I felt when nighttime rolled around. Lately, that same anxiety washes over me around bedtime. For years I've dealt with minimal sleep and heightened pain. The last few weeks have been the hardest yet - tossing and turning, waking up every hour to adjust my heating pad and pillows, trying to find some sort of relief, and then finally giving up and getting out of bed around 3:30am. I've reverted back to my childhood, where my husband has to practically drag me to bed every night because "I don't wanna go." If I could live off of no sleep at all, just to avoid that misery, I would.
I'm barely making it through a normal day of work, where all I do is sit. How in the hell I'm going to pull off a Home Show next month, I have no idea. I have an incredibly difficult time getting groceries - which is pretty much the only thing I push myself to get out of the house for on the weekends. Leigh has to do more and more of the cooking lately. Which, let's be honest, I'm actually ok with. ;) The only time my pain ever goes away is during a float, or right after massage and acupuncture. But it comes right back almost as soon as I get into my car. If I could live my life in a float tank, or on the massage table, I would.
I want to cry. I want to die. I want to scream. I want to give up. But I won't, because I can't.
I'm pushing my next Lymestop appointment up a few months, and flying over to Idaho in a few weeks. The doctor says that it's not normal to be feeling this way 4 months post-treatment, but that it could be a "layered" infection that was hidden by other infections during our first visits. I'm hoping and praying that he's right, and that one day soon I will wake up from this hellish, hellish nightmare.
