Hey yall! My name is Aly, I'm 23 years old and I'm a spoonie (chronically ill) Join me on my adventure through life! Along with medical updates, I blog about being a spoonie and my faith which influences my personal feelings and opinions on things going on throughout the world. I also review pinterest recipes and products!
Fighting to make invisible illnesses visible!
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God I feel like I'm being dramatic but ask anyone who's been around me lately and apparently I'm doing really good or better than they think someone in my situation would. I feel like that's supposed to count for something but it doesn't feel like it. Honestly, it's kinda frustrating because I feel like no one gets where I truly am. I lasted longer than when I had my first breakdown but since then I just crashed and I crashed hard.... so much so that my emotions and depression are so out of control I don't feel myself
But first a PSA: PLEASE STOP ASKING ME ABOUT MY NEUROSTIMULATOR SITUATION!! Sorry for the CAPS but I just can't deal with it right now and talking about it over and over and over again. If yall have questions feel free to ask my parents, If you have me on facebook my parents are listed as family members and you can message them. If you follow my support page leave a comment or message, my dad helps run the page and he can contact you.
If yall know me yall know I can put a positive spin on anything well, just about anything. As a spoonie we come to terms that our body have failed us and at some point it comes to an epic proportion where we're like ok I get it you can stop now. But rarely does it get so bad that it's like ok the whole world gets the point now....
I met with my neurosurgeon recently and surprise! My nylon stitches were irritating my skin so yeah those suckers came out even if my body wasn't ready, thankfully it was.
I keep flashing back to random things that have been told to me this last year on this neurostimulator journey... coming in at #1 "the good thing is the most natural thing your body can do is heal"-my neurosurgeon. Of course he had no clue that I would be his 2nd patient EVER to reject the neurostimulator but that sentence haunts me. Sure you can argue that my body was still doing what was natural, rejecting something it thought that shouldn't be there, but yeah nope not flying with me right now....
And then there's the typical way people respond when anything bad happens in life. They try to keep you positive and let me tell you it drives me INSANE right now! (Yeah see told ya, it's not me in this body right now) I can't stand it! No I'm not going to let this be a forever pity party but for the love of God can people just let me feel the way I'm supposed to right now? Me not being all sunshine and rainbows right now is NORMAL in my situation. It's also HEALTHY instead of bottling up which will just make at least 3 other illnesses I have flare up. For real though, stress can do some crazy stuff to your body even when you're perfectly healthy.
I'm not saying that you can't try to cheer me up, I'm just saying stop trying to tell me how to feel or act or whatever. To cheer me up send me cute and funny videos or pictures on Facebook or something, talk to me, offer to spend some time with me. Let me decide what to do.
And with that, if I oddly answer your "how are you feeling?" Question it's because I'm tired of saying I'm hanging in there or I'm ok or some other kinda true but still total BS line. So many people use that line to start a convo, sometimes it's hard to tell who's just trying to start a convo or who's really checking in on me. And even then, we spoonies tend to shield yall from the uncomfortableness that comes with an honest answer which I am so done with right now. So if I blindly look at you and spit out some random words, just accept it. Even if I was ok with talking about how I truly feel, it's not something I want to talk about currently.
I'm so broken beyond repair you guys it's ridiculous right now. When my neurosurgeon told me I was irritated by my stitches I just busted out laughing because nothing can surprise me at this point. I'm already KO on the floor but I'm still getting hit. So I'm just laying here taking it, waiting for it to stop. The upside is I can't get any lower. (Woo i said something positive!)
I make the effort to be how I've been lately. Why? Part of it is for me and as much as I hate to admit it, part of it is for those around me. If yall see me making an effort maybe yall won't worry as much. If I make the effort, maybe I'll get back to bring myself. So if I continue doing the things I would normally do or were working on before everything happened, maybe I'll find myself standing back up in the process
Which brings me to a semi-random thought, why the hell aren't we more open and honest about the crap going on in our lives? Why do we feel like we just have to share the happy moments on social media? Why can't we be real with ourselves and others? I'm not saying let's let all the skeletons out of the closet but that outfit you hardly ever put on deserves to be worn more and who cares what people think it's an awesome outfit. We're so afraid to be accused of being a drag, negative, dramatic, or even throwing ourselves a pity party that we block the real crap we're dealing from our social media. And when people do, we look down on them which I'm sure some of yall are doing to me right now.
Why are we scrolling through pages envying other's life and not reaching out to people to help us get there? Why are we so afraid of getting help of any sort? We're human! We are social animals and social animals don't do EVERYTHING on their own. We are made to lean on each other and like everything there's a balance. There is such thing as being too independent.
Sorry that random part was written a few days ago while I was still drugged but I still stand by it. This might be the libra in me, but life is about balance and at least from my experience, it's also being honest with ourselves. But a lot of the times we end up dealing with things in an unhealthy way. We numb ourselves by having several drinks so we don't have to think about our feelings, or we bottle them up which notice it or not, does affect you, maybe not right away but it does at some point, you may not notice it but people around you will. Out mental health is just as important as our physical, we need to learn how to properly take care of our mental health and say screw it to the stigma.
I have been in and out of therapy since a year after I got sick thanks to the whole "she's a teenager so she must be stressed out" crap that you deal with being a teen with undiagnosed problems in a children hospital. I often compare my therapist as a friend with an outside view that you see at least once a week who shuts up and lets you talk about your problems and you know what? It's freaking amazing. I've been able to understand not only the way I think. process, and deal with things but others. Sure in my opinion it kinda makes things difficult, I find myself understanding where the person I'm upset with might be coming from but it always sets the light bulb off in my head. No, I don't lay down and get poked and prodded about what's going on in my life, nor am I forced to talk about things I don't want to talk about. And if you are seeing a therapist who do those things and it's not helping you, I highly recommend finding a new therapist.
Anyways, that's my health update and ramble/rant! Thanks for reading
Ok the title of this post kinda made me laugh because my body has been betraying me since I was 12 but I couldn't think of anything else..
For those of you who don't know, my neurostimulator- the device that has helped control my chronic pain IMMENSELY, is being rejected by my body. Which means I have to have it taken out. The upside is, after we let my body recover I will be put on anti-rejection meds and we'll get it implanted again and hopefully, all would be good.
But despite all that, this has been a huge blow to us all. I mean, it's pretty obvious that this has affected my parents and me but it has also been a huge blow to everyone who has supported us throughout the years. Which for some reason, is kinda surprising, even my closest friends broke down when I told them the news.
I think deep down inside I somehow knew something serious was going on but everyone else around me wasn't as concerned so I just went with them. But then my pain got worse and what was once 2 open wounds became 1 and that really caught my attention.
I know some of yall might be thinking why did it take so long to come to this, well first, it was the holidays, scheduling doctors appointments around the holidays is really difficult for some reason, all doctors are just booked up. And then, it was because we were giving antibiotics a chance to work to rule out an infection. Oh, and because of all my illnesses we knew I would heal much more slowly so since there weren't any other signs at the time we just thought I was healing much slower than we all originally believed.
So how am I feeling? Oh gosh where do I begin? I hear "I can't believe this is happening," "I can't imagine how you must feel," "I'm so sorry" so much and it's true. I mean, my parents and I don't even know how to feel or what I feel. It's just a continuous flood of emotions with moments of numbness. My depression has obviously gotten a lot worse, in all honesty since seeing my doctor I've been mainly sleeping. When I'm awake I'm trying not to cry. It's a mixture of emotional and physical pain.
I'm angry, I think this is unfair but I want something to be angry at. I don't blame God and yeah sure this is life but I want something to specific to be angry at but all I can think of is my body and that sounds pretty stupid.
I wish I could workout because before I fell ill when I had all these emotions stuck inside I would just workout really hard and it'll help release everything. But I can't do that unless I wanna be in the ER or hospital...
Oh and to top all of this off I'm battling a cough/cold haha yeah I just can't win right now...
There's been a lot of questioning right now... Am I doomed to just suffer the rest of my life, should I just do what I did before and do my best to ignore all my symptoms and try to live the life I want? And what the heck is God trying to do in my life right now?
I'm frustrated because I don't know the answers to the questions I have right now. I mean, I know I shouldn't just try to push through because after doing that for a little over a year I became home bound/bed ridden for so far, 2 years and counting.
I'm confused because I see other people with disabilities and illnesses defying the odds and yet I can barely last a day without a nap. It makes me feel worthless but then I see the amazing and crazy amount of support I'm getting and that silence those doubts. Which btw, what took yall so long?!?! I knew I had support but for the most part, it was very silent most the time.
I don't understand, for the most part I believe I'm a good person and it upsets me that I and other good people in the world are dealt a pretty shitty deck of cards. Despite never giving up, busting our ass and staying positive we hardly get anywhere. I know it sounds childish but it's just not fair...
I was, finally able to try and make my life the way I wanted it to be. I had plans I was putting into action, I started physical therapy, was reaching out to people to hang out with and get out of the house, etc. But then it came to a screeching hault and now I'm stuck trying to figure out what to do again.
I've been going crazy being stuck at home! 2 years of hardly getting out the house really gets to a person who loves being around people.
So anyways this is where I'm at right now, I was hoping 2016 would be my year and who knows, maybe it still will be and Januaray just isn't my month. I just want to thank everyone for their love and support. The best thing yall can do right is just show me you're there. If you're friends with me on facebook shower me with cute and funny videos or memes or start a convo with me and try to distrat me from the hell I'm dealing with. If I need anything else I'll let yall know.
So I'm trying to write more in my blog I have a ton of stuff to say like many of yall know but getting on my laptop is such a chore and energy zapper for me. This is something I just quickly wrote and posted to a spoonie Facebook group I'm in and because of it's length figured I'd make it a post here. It's super raw and honest but then again when am I not honest?
I hope it shows you something you need to see or hear. I hope sharing my story my struggles help you not feel alone and helps you feel stronger to keep fighting. Whether you're a spoonie or just going through tough crap in life.
I'm slipping... I can feel it.. just slowly getting stronger and stronger but the real me is fighting and fighting hard but my body is already doing enough without trying to fight mentally and physically...
I had a neurostimulator put in in October we knew because of all my illnesses I'll be a slow healer but some of my wound hasn't closed fully with the incision for my battery being very sore. Had my follow up with my neurosurgeon after the holidays and I'm on a round of antibiotics hoping that'll help me heal because I might have an infection but he did mention that my incision looks like it could potentially be the start of a metal allergy....
I've been half letting my mind go there and half not, if it is an allergy I would have to get my stimulator taken out... i would have to give up the device that has allowed me to be more human.... I would have to give up all the progress I made and what's worse is I'll have to relive that horrible post op pain all over again without any benefits...
I'm forcing myself to do things, trying to make plans once a week with somebody but I'm afraid that's not enough. I'm scared out of my mind...
But then I see how much I have fought cuz let's be honest sometimes we don't realize how hard we've been fighting because this is our life and so we just live with it so that gives me hope. When I usually get self harm or suicidal thoughts I now am full of rage which my therapist says is a good thing because I'm allowing myself to feel and not just avoid, how I got there no clue.... I'm reaching out and trying to participate at my church more but it's tough for people my age we're a minority...
Today has just been a really tough day and those stupid American crime ads keep clawing at my PTSD malong everything worse... this isn't like me usually I only feel this down for 5 hours tops and then I move on but it's lingering... usually my depression makes me feel numb or I'm moody but I don't notice it or I just sleep, something other than how I feel right now... sure I've been home all day but the colors have become dull.
But I will fight, even though my body is so physically exhausted I'm not a quitter... yes I feel awful but I'm determined to make it through this. So maybe I'll be going through the motions.... but maybe those motions will turn into actions that'll help get me out of this, help me be happy again.
So not sure if yall remember but I was taken off my depression med about a month ago and instead of immediately putting me on another one while decreasing the other I had to go fully off of them. Since then, I was put on another I'm doing a lot better but I don't feel 100% me and I hate it.
I really don't care too much about things right now. I'm just here, doing whatever to pass time. I gotta fight to do the things I normally like or would do. I have my moments of true enjoyment and stuff but I'm not happy all the time. I still stay positive but I don't feel myself smiling inside.
I'm sure my opposite sleep cycle and easily exhausted doesn't help with all of this. At least I'm not having bad thoughts or wanting to throw things but I'm not happy where I'm at right now. I'm psychologist thinks this is more situational than clinical depression, if she's right boy do I hope I get my stimulator soon!
Anyways, that's what's up with me right now. Waiting on insurance to approve my stimulator they said it takes 4-6 weeks and it's been 1 or 2? I'm going to be blogging more often, even if it's just expressing what I think. The post might be more frequent and smaller and less flashy because it's easier to add pictures and everything on my laptop and these post will be typed on my phone instead.
Content/Trigger Warning: This post includes triggers for PTSD resulting from sexual violence. While it is the focal point of this post there will be NO details about the incident. This is just me, a survivor, expressing how I am feeling after being triggered. I will do my best to give warning to areas that might bring more vivid reminders.
So, to me it's no surprise that April, the awareness month for sexual violence, I start having my flashback nightmares, aka, night terrors. In my opinion, this is one of the worst ways to be reminded of your trauma aside from having to be where it happened. Sometimes night terrors can be random as hell but sometimes, when you think about it, even the smallest detail could have been your trigger. Others, you thought you might have dealt with your trigger but that night, days. weeks, or even months, later you're it hits you. This post's title was inspired by an organization called Red my Lips that encourages people to wear red lipstick for sexual violence awareness month to spread awareness and speak out against victim blaming a problem many survivors face once becoming public about their assault.
Do you remember when you were little and you had nightmares that you swore were real? You swore there was a monster in your closet or underneath your bed? Night terrors are like that but on a totally different level. DETAIL WARNING They feel so real, my poor dad, because I was flailing and kicking so much one time I clogged him in the face while he was trying to wake me. It's been 7 years and yet as hard as I try, I remember every last detail and in my dreams I am unable to distract myself for going deeper into it. I feel everything physically, I can recall and relive the whole experience in extreme details.
These last few months I've had night terrors and an increased in how often and how much thinking about my trauma. Not dealing with my past might be the reason some of yall might be thinking. Not exactly, I've seen sexual assault specific counselors, I've accepted what has happened to me and for 3 years I have been able to live my life without it consumed by my trauma. I'm not a woman hiding behind her laptop blogging about her problems, I am publicly open about my trauma in my personal life too. So what gives? PTSD is a life long conditions, as long as I live, my trauma will always be in the back burner somewhere ready to pounce no matter how well I'm dealing and that is another fact I have to accept. I know the culprit of my night terrors though, at least, the cause of tonight's. You see, these last 2 night my family and I would be watching tv and the show would involve sexual assault. Now, for the past 3 years I've been able to I guess, "push through" the unexpected plot of sexual assault but about a month ago this became difficult. So what happens? I shut down. Like many people who deal with PTSD I want to deal with it on my own, my stubbornness has me trying to just push through the scene. Part of my mind tries to concentrate so much on what just happened and the other part is trying to get myself to think of anything but that. I try to remain my composure, act as if I'm just really into whatever I'm doing on my phone but my parents notice. They change the show, make sure I'm ok, and out of not knowing what to do, we just watch whatever else we just put on. "It's stupid," I think, "I've been fine for so long why is this bothering me now?" More anger and frustration settles in.
When my PTSD becomes more difficult to deal with, without even thinking about it, my body does what it can so it doesn't have to sleep at night. IDK if it's because my trauma took place at night but me, coping, and night time doesn't mix. One of the few perks of bed rest, I can just sleep during the day without it affecting anything. Unfortunately, coping at night sucks because if you actually feel like talking to someone (which is rare) the likelihood of there being someone is slim.
DETAIL WARNING So what happens when you wake up? Somehow, despite already having this happen in your dream, everything comes flooding back yet again. You're drenched in sweat, hyperventilating and disoriented. So you're stuck trying to calm yourself down while processing. It was a dream, it wasn't actually happening in that very moment, you were asleep on your bed, you're at home, safe, and sound. (And if you're not safe and sound please seek help!) If you haven't passed out from all the crying and hyperventilating hopefully by now you're starting to calm down. Emotionally you start to feel drained and for me, I'm just so deep in thought I don't care to talk, eat or sleep.
The "it's just a dream" is a load of crap because it's not. Yes, right then and there it wasn't happening but it has happened there's not much more to it. You see, when you're having difficulty with PTSD it's like you're in a different dimension, anytime you're triggered it's like you've gone through the rabbit hole. You become so focused on it, you get stuck on repeat. Previous thoughts, feelings, questions, doubts, etc. come flooding in.
Sorry if this post was just a bunch of rambling nonsense, I just felt like I had to write and post this. Maybe this was just something I needed to do for myself but hopefully, it helped someone out there. Things will get better, and if they aren't you fight for it and make it happen. Once you have dealt with everything and have better times it will come back to you and you will have to face it all over again. I'm sorry it's that way, you never did anything to deserve this, but your battle has made you a warrior. You are not a victim and you are far from alone. Now listen to this song, cry your eyes out and fight on!
