Some realities just plain suck

Tonight’s one of those nights where I hate my limits. I’m feeling weak, and I feel like I’m not strong enough to continue this fight. I know these thoughts aren’t good, I know these thoughts are the ones that cause me to get stuck in my head and into the dark places where I can’t get out, but sometimes the light at the end of the tunnel isn’t quite bright enough for me to see hope and I’m allowed my moment of weakness. You see, every now and then when I over do it, when I try and keep up with the people around me and try and be normal, the pay back is too much for my body. I think I can do it, I think for the time being I can be the Old Jordan and that for once in this god damn life things will go my way and I won’t have to face the consequences of being sick, because that’s what I am: sick. Chronically ill or whatever you want to call it. And when the fatigue hits, when I physically can’t move my body out of bed because I’m riddled with pain and my head is going to explode and I want to perform DIY brain surgery no. 2, I’m left with my thoughts and they aren’t too happy. They remind me how little I can do, how different my life turned out, because this wasn’t the life I planned for myself. I wanted to go to the Olympics, I wanted to be the best of the best in my sport and stand on the podium with gold around my neck, and I was willing to put in the effort and train my hardest to get there! Now my effort goes into getting myself out of bed and taking my medications. And what a joy that is. Steroids taste like shit going down and burn your throat so there’s an art to it: throw them to the back of your tongue but don’t let it touch your throat otherwise you’ll gag, wash it down with loads of water, milk would be best but I can’t drink plain milk and anything acidic would just add to the burn, and then it’s always best to eat something afterwards because there’s a residual taste you can never get rid of. Bread is best cause carbs.

Once a week, on Thursday nights I have my 20mg dose of methotrexate. This still hits me every time I take it: I am on chemotherapy. I get it’s not as high a dose as those who suffer from cancer so the side effects are nowhere near as sever, but I still get them. Fridays aren’t too bad, just a bit of extra fatigue and nausea, but by the evening the nausea is in full swing and Saturdays I barely eat because it just makes me uncomfortable. And that’s another reality that makes the tunnel seem darker and smaller. At twenty I shouldn’t have to be on chemo once a week, I shouldn’t have to see my hair getting thinner, I shouldn’t have to have monthly blood tests to monitor for liver failure that this medication can cause, and I shouldn’t have to be scared of this cough that has been following me for the past couple weeks because it may indicate inflammation in my lungs: all which is caused from this chemo medication. I shouldn’t have to, but I do.

For a while I could block out the medical aspects of my life while on this road trip, and only be affected once a week when the methotrexate side effects hit, or I filled up my medications. But my body just can’t seem to relax and has developed either a side effect to one of my medications or a new symptom. A facial twitch, where my nose moves slightly, but sometimes to the point it can pull my lip out of alignment and the scary part is that I didn’t even know it was happening. It took Mum and Dom pointing out before I noticed. How can I not even know that my face is moving so much? That’s the part that’s worrying me! So I emailed my neurologist, phoned him multiple times, but he still hasn’t replied, and I don’t know what to do. Could this be permanent? Is it a new symptom of chiari or syringomyelia (the cysts in my spine?)? Or is it my meds? We think it’s the Topamax and that’s the one that’s actually been working for my headaches so where would we go from there? I have so many questions and I’m thousands of kilometers away from all my specialists and I just don’t know what to do. Now can you see why my tunnel is looking a little worse for wear?

So yes, tonight I’m lost with my thoughts and my reality of chronic illness is just a little too much for me. I’m allowing myself this moment of weakness and giving myself time to feel this way because otherwise I wouldn’t be able to stand up again, and who knows how long this moment will be but it wont be forever because I will make sure to get in contact with my neurologist and sort out this new development. Tomorrows a new day, I don’t know how I’ll be feeling, it may be the exact same way, but there’s a chance that it may not.


Also, give this blog post a read. It really opens your eyes to the fact that chemo isn’t only for cancer and the author has worded everything perfectly!
http://thetubefedwife.blogspot.com.au/2015/11/chemotherapy-isnt-only-for-cancer.html



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