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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If you know me, or have had any interaction with me you know I am a very positive person.
I've been told all the things a positive spoonie hears:
"You're so strong!"
"I really look up to you."
"I don't see how you do it."
"It's amazing how strong your faith is."
And honestly, it's comments like those that keep me going sometimes.
Michael Ancher, "The Sick Girl" 1882
Because the truth is, the people in my life don't see the Aly at home or in the hospital. You get to see the Aly having a good day or the Aly that is pushing herself.
Very rarely will you see at home or hospital Aly. It's not that I'm afraid, I just don't want to make a scene or make anyone uncomfortable. I don't want pity or sorrow. I don't want you to feel even worse for me. But this post isn't about that.
This is the straightforward and blunt Aly. And the reason as always is, I want to show my spoonie family that yes, we all have those completely blinding dark days that we think we will never escape. I'm here to show those who are healthy that we spoonies honestly hide so much from yall. There's a reason why they're called invisible illnesses. But like I said earlier, this post isn't about that. This is a post about a spoonie being completely honest.
Almost a year ago I went on my journey with my amazing family to Arizona in search of answers from one of the top hospitals in the country. We got some answers and I had a pain med injection which had me pain free. Unfortunately, my body plummeted after several months, I was back in pain which obviously was very frustrating. Thus started more doctor appointments. I got a pain management doctor where I live, Awesome! I thought, we'll just have them repeat the procedure. And so it happened. But I was still in pain, turns out there was 2 different set of nerves and that x-ray injections are different than ultrasound injections. So due to the second set of nerves that didn't receive relief I got another. My doctor then mention a procedure to burn the nerve that was causing my pain and cease it I was so excited I thought I have found my holy grail! My pain came back less than a month after so we schedule the nerve burning procedure for this coming Wednesday.
Since my pain came back things have become very difficult. The daily frustrations were my "normal" and didn't really affect me that much. However, having a procedure that I had previously that last me 6-8 months barely last me one, troubled me. I did what every human being does during tough times and started asking why.
Why didn't it last that long?
Why am I experiencing intense pain?
Why must I go through this and when will it end?
As time went on, my pain became stronger I went from using my cane rarely to using it every time I got up. My pain doctor prescribed me a high dose of hydrocodone and I'm stuck taking them because it's that bad. Even then, it doesn't do too much for my pain and I hate it. I don't like the high it gives me, I try to go back and forth between that and my other pain med that isn't a narcotic. Narcotics scare me. Not only is there a potential for addiction but the side effects can make my GI issues worse. My energy went down the drain. I would sleep through weekends only getting up to eat, drink, and go to the bathroom.
I HATE this but I keep myself preoccupied so I don't think about it. Needing someone to help you walk around sucks. Not being able to just get out the house with just anyone sucks. EVERYTHING ABOUT HOMEBOUND SUCKS! This isn't the life you're supposed to have in your twenties. You're supposed to struggle surviving school and finding the balance between working enough hours to pay bills but while still having time to study. You're not supposed to struggle getting to point A to point B or questioning if it's really worth getting out of bed when no one is home just in case you pass out. Although not having to deal with the now 100 degree weather is great and probably the only good thing in this situation.
I thought hanging in there till my procedure would be a manageable. It was at first, because all I did was sleep. But recently it has become increasingly difficult. When I had my appointment to set up the procedure I was in so much pain, my dad was with me in the room because I was crying my eyes out. My doctor was explaiing the procedure but I was unable to think so any questions I had didn't get answered. And either dad was okay with it or felt it was not his place to ask questions. So I reached out to my spoonie community, did research online and learned what I was getting myself into. I was already scared, just the injection procedure hurt so much more compared to how it was at Mayo. I was traumatized by my injections and now I'm expected to go through that again but also have it a little more invasive.
I couldn't find many people who have had this procedure so I was in the dark. But the few I talked to and the ones I found on message boards didn't help at all. All I saw were people who backed out or said the procedure was living hell and at most, had relief for almost a year. I was told that this would give me 1-3 years of relief and the way my doctor explained the procedure was totally different. (But I was looking up the same procedure.) My intent was to find information to help me calm down, not to make me worse.
I'm already scared and nervous at the fact that I have to be awake for the procedure. Sure, I'm sedated and they slightly numb but no one willingly just allows a needle to be jabbed where they are having pain. My doctor told me I would have to help him find where it hurt the most. I would be less upset if I was guaranteed results but I am not. I'm apparently crazy/desperate enough to let them do it anyways. Frankly, I'm scared shitless, I can't sleep... I just... I can't... I just want to get this over and done with because being stuck here waiting is so intense. My pain is already bad enough but the added, I guess, emotional and mental pain is overwhelming. But of course, my health isn't the only thing I have to deal. There are many things in my personal life going on as well and it's not all rainbows and flowers.
I commented on a fellow spoonie post. The topic was that people think cancer is the "worse" chronic illness out there. But all spoonies know no illness is greater or lesser than another. A lot of "normal" or as I like to call it, healthy people tend to ask if my illnesses are life threatening and when I say they're not they try to be positive and say, "well that's good!" Sorry to disappoint you but it's not. To me they're equal. Obviously having your life at risk is huge but so is your life completely changing and never returning back to "normal." Not having your life at risk pretty much means living hell for the rest of your life. And honestly, if any of my illnesses were life threatening it would make saying yes to every procedure, surgery, medication etc so much easier I feel. Knowing my numbered days are coming quick I'd do anything to stay fighting and have a good day to simply enjoy everything. But this isn't fact because the only way we can know for sure is when we're in those shoes and thankfully I'm not.
Having a non-life threatening illness that you know causes pain for the rest of your life makes you question the things to "help" with pain. Part of me feels like what's the point. What's the point if I'm going to put my body through more trauma for a possibility of it helping me? What's the point if it does help but doesn't last that long? Is it worth trying whatever new thing that's out there? Or something that is questionable? What's the point of wasting so many people's time, energy and my parent's money on something temporary and not long term? I sometimes wonder if I should just stay at home. But that's not fair to my parents. They deserve for me to out of their house and paying for all of my medicines, doctors, etc..
You face a lot of questions being chronically ill. You just have to learn to let yourself feel the proper amount. Life isn't made to be sunshine and daisies everyday, we are made to struggle. But it doesn't mean we should just waddle in self pity forever. There is a time and place for everything. You fall, let your body/mind figure out what's going on and then you pick yourself back up doing whatever needs to be done and move on.