Two posts in one week, I’m getting a little wild here. But jokes aside, I had a lot of my mind and just feel the need to get it off my chest. Keep in mind, I am super emotionally charged today, so this post may end up not really making sense or having an exact point. Just a lot of feelings.
There comes a point in anyone’s journey, literally anyone’s, where things start to get better. Where the light at the end of the tunnel feels a little bit closer. Where the days feel a little more bearable and things may feel like they are starting to fall in place. And as you get to that end of the tunnel you should feel excitement. Everything you did, everything you sacrificed has led to this moment.
Now I’m not saying that I have officially reached the end of my tunnel (remission), but I am feeling better. Day by day my bowels feel like they are getting it together. I mean it’s not linear. Take this weekend for example. Friday I didn’t poop all day and then Saturday came and I gave birth to the antichrist, had these weird waves of extremely painful cramps, and fought on and off with a head ache, but Sunday was anti-climatic. I didn’t poop again until like 8pm and I was just tired- which is manageable. But as I begin taking steps towards that end of the tunnel (very very baby steps because my body can never just 100% commit), I feel not excitement, but this overwhelming feeling of bittersweet. Of good and bad. Of happy and sad.
And maybe not everyone in their journey has to go through this. This is like STRICTLY speaking from my experience. I have never had to endure something for this long where the aim wasn’t to have it go away forever, but for it to just be treatable and dormant essentially. So maybe it’s different for others or I’m just weird.
But this weekend I felt invigorated (as you saw in yesterday’s post) and today I feel defeated. I woke up feeling all the little aches and pains from the weekend. I woke up feeling like I could still use another 9375844 hours of sleep. And I pushed myself to get through my day. I went to work, I did my job, I came home and tried to adult, and then attended my pain management meeting. And as I did all of this I thought about how exhausting it all was. How there was so much I wanted to get done and I still can’t. And it dawned on me that maybe I really never fully will be that person again.
And this is where the bittersweet comes in.
Every single god damn day of this journey I have had to stare at this person in the mirror. Every day I have had to give my head a shake and tell myself “we can do this” because it was like if I didn’t say it out loud, then the silent negative voice in my head would be louder, and she is always saying “just give up. Is this all really worth it?”. And I’ve talked about this before, but I can’t even begin to describe to you how much it has affected me. Everyday I have to look at that person in the mirror and watch how she changes. Day by day, hour by hour, and sometimes minute by minute. And don’t get me wrong, there are so many changes that have come for the better. But god damn there are things I wish I could just erase. Getting better is great, but it comes at a cost and sometimes I really do wonder what it’s all worth.
And people SEE these changes. Whether they admit it consciously or unconsciously. People talk to me differently, look at me differently, and see me differently. Our conversations aren’t around my ambitions to be a psychologist and what I was going to do to change the world. Our conversations are on how am I feeling, how are things going, what is my treatment like. And that’s okay, I get it. It comes with the territory. But you also have people in your life, usually the closest, who start to take responsibility away from you. And sometimes rightly so, like when I am too tired and probably shouldn’t be driving. But sometimes I could do it, it will just take a little longer and a little more patience may be required. And I kick myself over this one, because I LET people take more responsibility. I tell myself “well I’m sick”, but it shouldn’t be an excuse. It can be a reason on my really bad days, but it shouldn’t excuse my actions. So I want to change this, I want to be more independent again, but I know this will be a bloody battle because I don’t think even after two years that I have figured out what my limits are.
Seriously. All these changes. I was a competitive dancer, dancing 6 days a week after school and now I have been limited to 1 day a week to workout because 2 and a half weeks ago I pinched a nerve in my back from working out 2 days a week. And believe me, I felt the pain. I couldn’t breathe properly when I did any gross motor movement, but I was so stubborn. In my mind I still should have been able to do it because a workout was nothing compared to dancing. So I finished that workout and booooy did I ever pay for it. At least I can breathe normally again.
But the change that breaks my heart the most has been my mental changes. I would give anything to have my brain again. It sounds funny, but it is a thing. When you have been on medication after medication, have a disease that does not allow your body to get the proper rest it needs, and you are constantly wrestling with fatigue- it gets to you. It catches up. And sometimes I can laugh about it, but other days like today- I just cry. Let me paint you a picture.
Friday we got to our hotel and I was exhausted. I had worked that day after not really sleeping well the night before, I had come home to pack our dogs up and get them to my moms, I had made sure the house was hopefully good before we were gone all weekend, and then I went to meet my boyfriend at his work so we could drive up to Calgary together. And I mean I didn’t even drive to Calgary (thank god because we might have not made it there). But I was on auto pilot mode. I was so exhausted. Like full body mental exhaustion. And really it doesn’t sound like I did that much. Not more than maybe the average person. Not more than I could have handled 3 or 4 years ago. But I was spent. How spent? Well my boyfriend had asked me to take the cart with our luggage up to our room while he parked the car, and on the way up I managed to lose one of his bags (he thankfully found it), nearly took out a little old lady trying to navigate that thing into the elevator, and then proceeded to get it stuck in our doorway because a wheel was turned sideways so obviously it would not roll properly, but the thought of walking to the other side of the cart, bending down, and straightening it felt more exhausting than trying to pull a cart that really wouldn’t budge. Logic at its finest. So of course my boyfriend walked in like “what the fuck is going on” because really what was going on? But it was like my brain and body just couldn’t compute and work together. My fine motor skills were just out the door. I was so clumsy. Then we go to the pool and I realized I forgot something in our room so we walk back, and as we leave my boyfriend asked me where they key was. And I stopped. I have NO memory of taking the key from him. But I know I did. Just that weird gut feeling. BUT NO MEMORY. My memory is zilch. And it drives me insane, because I feel insane. I forget things ALL THE TIME. I write lists upon lists just to remember what I need to do. And it wasn’t always like this. I would like to think that at one point I was a very bright person. Now I just feel like a dumbass half the time, especially on really bad days.
And as I stare in that mirror I wonder if this is how it will always be? Because a lot of these changes feel like they are out of my control. How do you change your memory? How do you fix your fine motor skills (aside from an OT but I don’t think we are THAT bad)? How do you accept that you will never be the same person you once were and it’s all thanks to one thing. And I cried today because I thought of all the little sacrifices I have made to get to this very point- and this isn’t even the end.
And this isn’t a woe is me tale. This is again me just needing to vent. But maybe you know someone who is going through this. Maybe you are someone going through this. And if you are, maybe you can know you aren’t alone. Maybe you can support that person you know by just being a little more patient with them. By recognizing that there is a serious internal battle going on that you may never understand because shit I don’t even understand it. And there are days where I am extra prickly, extra tired, and extra stupid. Days where I need a little more assembly required. And it might not seem like it, but I am trying really hard. I wake up everyday and find a reason to fight just to get through the day. Sometimes I nail it, sometimes life kicks my ass. But I am trying. I’m not perfect. I’ve never done this before. I don’t now the tips and tricks. I fly at the seat of my pants and literally somedays just hope for the best. But everyday I stare at the girl in the mirror and give my head a shake and say “I can do this” because I’m scared that if I don’t, one day that little voice in my head will be louder and one day I might not have that drive and purpose. And god dammit, I did not come this far for this to be all there is.