A Bump in the Road

I've really about had it with this Lyme thing. I started this blog a few weekends ago, back when I had a total and complete breakdown. This has happened on occasion throughout my journey. Usually I'm strong enough to keep it together, but every now and then I lose it. As in crying and screaming for hours upon end, losing it.

This time was amongst the most hopeless and lonely I've ever felt.

Three weeks ago, I was finally experiencing relief from my symptoms. I wasn't normal by any means, but I was noticing small enough improvements that were finally gave me an inkling of hope. You can read about it in my last blog, if you're so inclined. ;)

Then a week later, pardon my French here, but the shit hit the fan.

My pain was back with a vengeance. I don't know if I've ever really explained what this pain is like? Probably because it's really quite indescribable.

The throbbing is so deep and intense, it's as though a vice is squeezing the life out of my bones. It makes me feel like my body is slowly dying, and is definitely the worst of all my pain. When I stretch my arms and legs, they feel so tight that they will snap, and they BURN like crazy. Pushing anywhere on my body brings on a pain that's a mix between a bruise, a pinch, a zing, and pins and needles.

When I'm laying on the massage table, I feel like one of Dexter's victims - like the masseuse is slowly running a knife through my whole body. It's all I can do not to envision myself wrapped in seran wrap! Grotesque, I know. My feet and hands are always numb, heavy and throbbing. And have you ever had a muscle that just won't relax, no matter what you do? Imagine every muscle in your body doing that, all the time. None of this stuff goes away - it only worsens at times depending on other circumstances.

Which is why I think I've had such a terrible time lately. Right around the time my symptoms started worsening, stress at work increased. That alone can be catastrophic. I had also made a change to my diet and have been constantly surrounded by colds and flus. I'm pretty sure my immune and nervous system are saying, "hell no, I'm not up for this."

Lots of people have asked if I have "what's going around," which drives me nuts. I mean, I wish. When things get this bad, it's not just the pain that intensifies - every symptom gets worse. The sinus infection, nausea, dizziness and stomach troubles, energy drops to next to nothing, I sweat like craaazy...and so much more...right down to the throbbing nerves in my gums.

But the emotional toll... heavens alive, needless to say, there have been WAY too many tears flowing in the Bedell household lately!

I think the hardest thing for me is that I was finally feeling better!! I had hope! I saw a sliver of who I used to be! And then to spiral backwards so quickly and so typically - it's made me feel as though this is just my life, that this is how my forever will be like. How OUR forever will be like - because my husband doesn't have to deal with the symptoms, but he does have to deal with me (which can probably be even worse at times!).

The other thing is the loneliness. I have tons of support from my family and friends - and I thank God every day for each and every one of them. But the truest thing is that no one in my life actually knows what this is really like. No one can say, "I get it" and really mean it. And I don't fault anyone for that - in fact, I'm GLAD that no one I love can relate. But sometimes I feel like I can't bear to live one more day in this "normal" world.

BECAUSE I'M EXHAUSTED!

I'm tired of dealing with these symptoms and these emotions, most definitely. But I'm even more weary of trying to live the life of an ordinary person. Of going to work, getting groceries, cooking dinner... well, that's pretty much all I'm able to do.... but doing it all with a smile on my face.

Because with an invisible illness - you don't have the luxury of giving into your symptoms anywhere outside of your home. People who don't know you at all, look at you and think you're normal. So if you look sad or unhappy, or, say, you take a "handicap" spot on the bus, people will think you're a horrible person. And I think the invisibility of the illness even tricks people that DO know about the Lyme. Not only is it easy for them to forget what you're going through, but because the suffering is always internal, they've never really known the significant calamity of it all.

During my bitchiest moments at home (the Lyme rage is real, my friends), I sometimes tell my husband that I wish he could experience what I go through for just a day, to see what it's like. You're probably thinking, "she doesn't mean that." And most of the time, I would agree. But if I'm being completely honest right now, I don't think it's the worst idea. And I'm not talking about just my hubby here - I'm talking about everyone. There are so many of us Lymies alone in the world, with no one in their lives to understand what it's like to live in constant agony and brain fog, with sudden mood changes, memory loss and a whole host of uncontrollable symptoms. It'd be so much easier to cope, if everyone could walk in our shoes for just a day.

Anyway, I digress.

It's been a difficult few weeks, but things are starting to get just a tiny bit better again. This weekend we're Life's a Beach-in' It on the Oregon Coast. Despite the 100% rain forcast, I'm looking forward to the healing properties of the salty sea and ocean breeze with doses of sisterly love and niece adorableness in between.

Before I go, it's probably important to note that I have not lost complete hope, but am just having some prolonged moments of weakness. I touched base with my doctor's office last week, and they said it is completely normal to still be feeling crappy. To cherish the good moments, and to not overdo it when I do have them. I've scheduled another follow up appointment for May. Hopefully by then I'll either be feeling better or only have a few lingering symptoms that I need Dr. S's help with!