Never Feeling It Again

There were two days last week that came and went without my headache showing up, and I’m scared. It doesn’t make any sense to be scared, I should be happy that I might be getting better. Actually, I should be way more than happy, I should be ecstatic! But I’m not. And I’m trying to figure out why.

I’ve waited for this day for so long, for a day that’s headache-free. It’s been over two years since I’ve had one. Every single freakin’ day I have pain. There’s really no exception. But I’ve been on a new treatment plan, made up of three components: a concoction of herb extracts (nicknamed “potion”) taken twice a day, acupuncture, and a gluten-free, dairy-free, processed-free diet. I was told that if I follow the plan, I should be feeling much better after three months. To say I had full faith in it would be a gross exaggeration. I’ve been told that many times before. In fact, two and a half years ago I was told my recovery time frame will be two-three months.

But because I had two days without a headache, everyone around me asked me if I’m feeling better. Actually, I was told by other people that I’m feeling better, based on my behavior, apparently. So I started to really believe it. Excited, I happily shared the news with just about everyone that I might be getting better.

But now I know what I’m scared of. What if this is a fluke? What if this week is just a hiccup, and I go back to my sorry state and stay sick for many more years to come? And now everyone thinks I’m getting better, everyone is going to expect me to act healthy and be happy and yadda yadda yadda. I’m going to have to play the thankful survivor who made it out of the darkest time in her life. But I don’t want to! First of all I don’t want to do that even if I do keep getting better, and I especially don’t want to if I don’t keep getting better.

It’s like suddenly there’s all this pressure.

What if I don’t know how to be healthy? Oh great, I’m crying again. I hate when this happens. But seriously, what if I don’t? It’s been so long. Being healthy is something I dream about, not something realistic. I’m so used to being sick by now. It’s just my life, and it has been for a while. All this time I’ve viewed fibro as something that’s holding me back. But how much of it is ingrained in me already? How much of the sick person will disappear once I’m no longer sick? This isn’t just a blip in my medical history, it’s become (unfortunately) a part of who I am. So that’s it? If it even goes away, everyone will just expect it to disappear from me. They’ll think, why is that girl so ungrateful? It’s gone, why is she so caught up in the past?

But… But… I don’t know what to do with myself. I’m still working my hardest to get better, following the plan, exercising, not over-doing myself. And I’m training myself to see the positive in getting better (which is ridiculous, because it’s literally been my dream and goal for years and I’ve just been yearning for it, but now it feels like some impending doom, which probably means there’s something wrong with me and I’m ruined for life), but it’s scary.

It’s scary because I also don’t want to let myself believe it’s happening. What if it doesn’t? Then it’s just this tempting tasting of what I need and it’ll be taken away from me once I stop being scared of it.

Do I even make any sense? My tears are blocking the screen, I can barely follow what I’m writing.

Yours truly,

Ella

Song Quote:

Seems to me like I’m just scared of never feeling it again. –High Hopes, Kodaline

 

P.s. Cameron Von St. James sent me an email the other day, letting me know about a beautiful tradition his family has started since his wife got sick with cancer and needed to have a lung removed. They created a beautiful website (you only get the full experience if you view it on a desktop), and I’d like to share it with all of you:

http://www.mesothelioma.com/heather/lungleavinday/#.UuTHdf3g7u0

Let It All Rain Down

It looks good doesn’t it? Well you’re about to be told you can’t eat it. Then it’s going to drip, and rain down on your brand new boots, and you’re going to slip in the puddle of your own misery. I’m in a good mood.

I want to quit. I’m sick of feeling this way, like I’m doomed, because of the pile of homework that is staring at me. I want to quit advanced math and advanced biology. They’re making me miserable. I’m just barely managing to go to school every day, and they’re making it impossible for me to ever feel okay.

I don’t think I can do school. I just don’t think I can do it. I know there are harder things in life, but I don’t see how it’s possible for me to survive this. Actually, let me rephrase that: I don’t see how I can survive this while not losing my mind and my health.

Guys, I’m so tired. It’s insane. My entire body feels like it needs to stop and wheeze every time I try to move because I just have no energy. Every day I wake up and something else is hurting me, and I just have to deal with it. I don’t have a choice. I don’t get to say, “well, it’s my fault, because I should be going to bed earlier”, then change my ways and see results. I get eight or nine hours of sleep every night, and it makes no difference. My pain and fatigue are the same.

The homework, the pressure, the stress: it’s all becoming a little much for me. I have a stiff neck right now on top of it all, and I literally can’t look down, so homework has become this hill I can’t climb over. Every teacher thinks they are teaching the only subject that matters, so they happily grant us the gift of hours of work, without thinking about the fact that maybe we have other stuff to do.

I don’t want to complain about it anymore. I don’t think it would help. I just want to officially put it out there: I am sick of this. My brain is tired, my body is tired, my neck is tense and my patience is gone.

 

_______________________________

 

My school is going on a trip next week. I don’t know how I’ll manage. It’s a three day trip, so for now the plan is for me to leave with the school in the morning (5:45 am), and in the afternoon let my mom know how I’m doing: if I’m fine, she’ll come the following afternoon to pick me up, and if I’m not, she’ll come that evening. The thing is though, that I can’t do any of the hikes, so I’m just going on the bus with them (the student body), dropping them off at the trail, and then going with a bunch of teachers and the secretary to do the food shopping. Then we go pick them up, and when we get back to camp, I’m on kitchen duty (every year, 11^th grade is in charge of food). So I’m basically there to be the mom.

Last year I missed the trip entirely, which pretty much sucked. I don’t want that this year, so here I am. I just hope it’s worth it. I have a feeling that ten minutes into the bus ride I’m going to feel sick to my stomach, and half an hour later my head will explode. Then I’ll go do the shopping, and I’ll hurt my neck and knees. When I get on the bus and pick everyone else up, I’ll get a horrible migraine. When I’m working in the kitchen, I’ll hurt my hands. Not to mention I’ll be having cramps all day.

But I’m not pessimistic at all.

Dammit, I just want to have a good time and feel like a normal human being! Is that too much to ask for?!

Virtual hugs are welcome,

Ella

 

Song Quote:

Let it all rain down from the blood-stained clouds, come out, come out, to the sea my love, and just drown with me. –Shallows, Daughter

P.s. Yes, I know the song quote is dramatic and depressing. It matches my mood. It is what it is.