Another year on

Last year I put out a post entitled “365 days” and it outlined what the previous year held and towards the end I stated that I hoped that I would have more healthy days. If you’ve been reading for a while you’ll know that that hasn’t been the case. I wasn’t lucky enough to be granted that wish. My New Years resolution of getting back to the Old Jordan wasn’t fulfilled. I’m not going to post about how this year has been one of doctor’s appointments and tests and hours spent in waiting rooms. If I spoke about that I think we would be here for another 365 days with the amount of time I spent in there this year. No, this year I want to say sorry, sorry and thank you.

Firstly, I’m sorry to the people that don’t understand what I’m going through, I barely understand it myself, there are times where I’m faced with so much confusion as tests come back negative again and again, so I can’t imagine what it’s like from an outsiders point of view. I know that for those close to me having to watch me go through this on a daily bases isn’t easy. I try to hide it, I really do, and when you ask me how I am I will usually answer with an “I’m fine” or an “Okay” because that’s the easiest lie to get out. I’m sorry for that, but understand this; it’s more for you then it is for me. If I was to be 100% honest with how I was feeling I would never stop complaining about my pain. From the moment I wake up my knees hurt, my hips hurt, my back hurts, and my head aches. That’s the truth, and I’m sorry if you find me lying to hide my pain more offending than me being truthful but sometimes complaining gets tiring. I don’t want to be the person who is always in pain, even though I am, I don’t want to outwardly show it. Yes I appreciate it when you notice my grimace when I make a wrong turn and a joint cracks out, and I’ll certainly be thankful for the hand when I stand up too quick and end up back on the floor after my head rushes. Those are the things that I can’t hide, but the everyday lie of “I’m fine” can pass through my lips without a thought because I don’t want to be a burden to the ones I care about most.

I’m sorry if I snap or lash out at you. Sometimes I’m aggressive and angry and cynical and just plain mean to people because I’m in so much pain and I’m just so so tired of it all. And I feel so guilty all the time because of it, but sometimes it’s just hard to be happy and understanding when your whole body is radiating pain. Add to this medications that alter your emotions and you have a grenade in an oven waiting to go off. When your body betrays you daily it’s a constant battle, and eventually you just get tired of fighting it and so the pain takes over and the anger seeps in because you just can’t keep up the constant competition. So I’m sorry to those that have caught me on the days where I was fighting my body the hardest and couldn’t keep the pain away, it may have seemed like I was at my weakest but what you may not have known was that was the moment where I was giving it my all. You see I’ve been handed a fight that I didn’t ask for, a fight that I have to get up and prepare for everyday.

Finally, I’m sorry if my constant talking about my chronic illness offends you. But know this, this is my life. I live it everyday and there is no hiding from it for me so while you may be able to close the tab or stop reading this post, I will never be able to escape this pain. At this point in time there is no end from this constant joint pain that riddles every moment and often wakes me. So while it may seem I go on and on about my health, and that may be true, but it’s almost as if it effects every aspect of my life wouldn’t you say? Actually, I’m not that sorry for this one, if it bothers you that much then please do close the tab and stop reading. I don’t have that luxury. I didn’t choose this; I was thrust into a club that I didn’t ask to join. I was shipped off to war even though I never enlisted in the army but I have to put on my armor anyway. And I’ve been lucky enough to discover new sides to myself… like a will I never knew I had. And I’ve even been able to see new sides to the people who matter the most to me as they wrap me in their love and lend me their strength when mine is running low. And then I go off and fight. I fight like hell. Because really what other choice do I have?

Now onto the thank you's, thank you to the people closest to me that have sat with me when I haven’t been able to get out of bed for days at a time, have watched hours of Criminal Minds, put together care packages filled with mugs, socks, and stickers, and to the people who don’t judge me when I throw up in front of them because sometimes my body just doesn’t like food and water despite it needing it to survive. Thank you for understanding that sometimes I’ll push myself beyond my limits and thank you for not telling me to stop. I know that you can see me suffering, and I know it hurts you as well, and we both know that at the end of the day I’ll either end up in bed or with my head down the toilet bowl but thank you for letting me do what I want.

Thank you to the people that let me rant to them. I know I can go on for hours about the side effects of prednisone or methotrexate or topamax, or how when I was working at the patisserie I could bond with the older customers over our joint pain and that the dementia ad on TV started to seem more and more relevant with my increasing brain fog. When I get started I can rant and rave for hours so it takes an understanding ear and a wonderful person to be able to listen.

Lastly, thank you to my mother, who has been by my side every step of the way. Every doctor’s appointment she has sat next to me, fighting my battles when I'm not strong enough to wield the sword. When the pain becomes too much and my body starts to shake and convulse, she’s the one that crawls into bed and holds me. Despite me already being well acquainted with the bathroom floor after many vomiting sessions, I'll find comfort with her beside me as she holds my hair and soothes my back because dry heaving gives your ribs one hell of a work out! She’s also the person who could see me slipping into the corners of my mind before I could and “getting stuck” in the far crevices, so she made a plan and we’re doing something about it. If it wasn’t for my mum I would still be trapped in my room following the same routine of meds, work, nap, food, meds, sleep, repeat; throwing in doctors appointments, blood tests every month, and any other test I may need. So while I may be on the road still taking all those meds and having blood tests every month and having dodgy health that still leaves me in dry heaving fits after some meals, I have things to look forward to and its all thanks to my mum.

That’s the biggest thing this year holds and what I have to be thankful for: this road trip. We’re two weeks in and what an adventure it’s been so far! We lost the car as it fell off the trailer; I got my forklift licence; I’ve learnt how much my body can and cannot take and it’s still very little. Where we have house sat they have two horses and the simple task of going out to feed them has given me something to look forward to. That sounds stupid, looking forward to feeding horses, but they like to nudge up against you and play around a bit and make you laugh and if this is just some inclination as to what the trip will hold then I’m happy with how it will turn out. Not the whole “car falling off the trailer and me having a breakdown on the side of the motorway”, but having a reason to get up in the morning other then to make coffee for people, that’s what I’m thankful for.

So we’re in Shepparton, tomorrow I’m organising my medications for the week as per every Tuesday and filling up scripts. After arriving in town the other day I found where I could get blood drawn, as I’ll also be getting my monthly blood test tomorrow because I’m on methotrexate and I have to monitor my liver function because, well, it is a chemo med after all and it can damage it. Then Wednesday we’ll be starting work picking plums and nectarines! It’s going to be putting my body through hell, but for once I’ll be choosing the damage that I’m doing, and if I can go to bed knowing that I’m tired because I worked a hard day doing something worthwhile and not only because my immune system is attacking itself, then I’ll certainly be sleeping better. Or I’ll just be exhausted.