One month in and one month less sleep

It’s been a month since I’ve started these new medications and I don’t know if they’re helping. You would think that since it’s my body I would know, but I honestly don’t. Sleep seems non-existent, and I’m lucky if I get six hours a night. I’ll often find myself awake at 2am, staring wide-eyed at the ceiling wondering how I haven’t turned delirious. My brain is in a constant daze, and I struggle to think. Going from someone who had a response on the tip of my tongue to not being able to form a sentence after a few moments is the most frustrating and brain crushing feeling in the world!

Then there’s the wonderful effects prednisone has had on my body. I look like I’ve had my wisdom teeth out, and my face is constantly swollen, my nails have taken a beating and have thinned out drastically. Before they were strong! They could grow and never bent or broke, now they bend back and snap and have cracks. Then there’s my hair. I know I joked about it thinning, but it still sucks. My lips dry out no matter how much I drink (because I’m now also constantly thirsty!) and they peel and sometimes bleed, along with my gums when I brush my teeth. Then there’s the weird one. You know that feeling when your arm goes to sleep? Where you can still move it, and feel everything, but the skin feels numb? Well I have that. But on my face, and all the time. For the past three weeks I haven’t been able to feel my forehead and I’ll get a buzzing sensation that goes down to my chin. I can still feel temperature differences and have full range of movement in my eyebrows and facial features, but for whatever reason, the skin is numb.

And food. How you are conflicting my already messed up body! At first I went through cravings and I found myself eating cake, something those that know me know I would never normally do considering I’ve never liked it. Then there was the ice cream at 3am. And waffles.
And now, I’m not sure if it’s the effects from Topamax, the new medication I’ve started for my headaches, but I can go through days where the only thing I eat is a piece of toast with my morning meds, some crackers for lunch, and a little bit of dinner with my evening medication.

Then there are Fridays. The dreaded Day After methotrexate. That’s the wonderful chemo medication where the biggest side effect that I’ve been getting is nausea. I take it Thursday night so Friday I can spend the day letting my body try and sort itself out and recover because it really takes a beating. Imagine the feeling of being hungry, that painful stomach churning feeling, but also having nausea on top of that. That’s how I spend all of Friday and Saturday. Any food that I do manage to get in just leaves me feeling miserable and doesn’t usually stay down for long, so I’m not exactly the happiest of people to be around on those days.

This past month has been hard. So much harder then I expected, and I was hoping I would have better results. But I don’t. And sometimes I wake up in the middle of the night and my heart rate is sitting at 90 beats per minute, and my hands are trembling and I can’t seem to catch my breath and these are all side effects. I sit there and have to calm myself down and get through that horrible instant that doesn’t seem quite so instantaneous, and I have to remind myself that I can do this. I’ve survived this far and I can make it to my lung function test at the end of the week, and next months blood test, and my next lot of specialist appointments, and I can do this.