This update is for my fellow Spoonies. If you don’t know already I have an autoimmune disease called Ankylosing Spondylitis (and Fibro Myalgia and Arthritis and IBS and…). Well, to make a long story short with the newest shift in one of my disks I have pinched a major nerve.
It’s been a really bad pain that hasn’t disappeared for two months now along my left leg. Sometimes, it even spasms by my pelvis and I go falling forward. What’s worse is that even with the nerve blockers I can’t really exercise at the moment and am limping at times.
Besides the pain, it is super embarrassing and frustrating. If you have ever had a health problem you will know that those two feelings are frequent and never ending. However, at the very least we can try to lessen how bad it is for us.
Tomorrow, I have planned to get a few shots in my back. It is supposed to be a few months of nerve numbing in that area. To be honest, the whole getting shots in places doesn’t make me flinch anymore. But the thing is that all forms of ‘relief’ seem to come with costs. I couldn’t take my normal anti-inflammatories for 5 days. That means going into this I am feeling like a crazy bitchy version of Quasimodo.
I can only hope the relief will be worth the next week of recovering from other issues.
They say it will so I am hopeful and optimistic. However, I will let y’all know if I think it is recommendable for nerve pain.
Last week I went to karaoke with a co-worker of mine and her friends and it reminded me of something I’ve always pondered in the back of my mind: should I ‘fix’ my voice.
What do I mean about that?
Well, I don’t know if ‘fix’ is the proper term or ‘broke’ is either but I’ve done damage to my voice three times in my life: puberty, high school and university.
I’m not 100% sure how I did and I don’t remember much. All I remember is that during puberty when my voice was changing I was playing around with my voice a lot. During it I ended up ‘cracking’ my voice at one point. The choir teacher at the time told me to rest my voice and stop talking. Which, I did. But since that point it caused my post-puberty voice to crack after awhile and sound as if I was running out of air.
The problem wasn’t that bad or noticeable so I left it alone. By the end of high school, the length of holding a note and ability to stay on one note/tone in general decreased. In fact, there would be times when I was acting or talking when my voice would crack for just a moment before returning to normal. Still, I was by no means a singer or voice actor so I didn’t feel the need to take action. Instead, I’d rather make people laugh with the new range of funny sounding sounds I could do.
Flash forward to university and where I am now and my voice is much worse. Holding tunes is a goal for me now. Most of the time I have trouble getting to or maintaining certain sounds. When I do I run out of breath often or my voice cracks.
I don’t know if it is something ‘fixable’ or just a thing that happens to some people but sometimes I wonder if I should of ever looked into what was happening.
If I did maybe I wouldn’t sound like I was screeching a lot and maybe I could hear what I thought my voice might become.
At the very least I’d like to go to karaoke and think about getting up there and singing or sing in my shower.
It’s me. I know I’ve been making a lot of statements and promises since the beginning of this year and haven’t really been following through with them. In fact, I’ve seemingly half-assed works and developing friendships. I’m going to do my best to explain and have it somewhat understandable.
Some of you have had the opportunity to be aware of some of things that are going on with me. Recently, I’ve had to make the decision to take down a lot of what I had posted and change my decisions of what I will post. A lot of this has to do with what I want for the future and how it all has been affecting those around me and changes on what effects I’m okay with. This may be one of the few posts going forward where I am so open about these things so I will try to make it worth it.
Before I went to university I was a pretty healthy person. I mean, I had my problems like everyone and knew I was someone who would have to work hard with my weight my entire life. That was why I ran, did martial arts, yoga and tried my best to remain physical.
Things started to change in my first year of university. At first, I gained the stereotypical freshman 10 pounds from change of lifestyle and being on your own. I did my best to not let that affect me and try to continue working hard.
Soon I started to feel sluggish and tired. It was harder to do things and my head would hurt more often. I attributed it to drinking way too much coffee and going out and trying to have a night life.
By the end of my freshman year I started to notice something really was happening. Everything was 10x harder to do and required more effort. It made me tired and weary. My head felt cloudy and dizzy. I often fell asleep or found my body severely hurting. The worst was my back and joints.
I tried to explain all of this to my family and doctors and at first they pretty much came up with a lot of excuses that implied it was all me. But there is something about a person just knowing that there is something wrong and it is everyone else around you that is saying utter bullshit.
It took two really bumpy years of resulting life problems and a surge of sucky progression for people to start believing me. The problem was by the time they did my entire life had changed. I was now a completely different person. I was someone sick. Leaving my bed physically was hard and painful. My head felt like it was going to split open and reading paragraphs felt like a foreign language. Forget being able to sleep or go through a day without wondering why my body was trying to kill me. Everything was pain and struggle.
A whole another year went by full of tests and random medication and speculation that just prolonged the confusion and suffering. So many people I knew that I was lying, exaggerating or causing all of it since no easy answers were given. By the end of it, the doctors just laughed and smiled happily. I was lucky and should be relieved that it wasn’t Cancer or anything exotic sounding. It was simply other ‘easier’ things.
I was 23 years old and my body was simply acting as if I was at retirement age. First, they told me I had Ankylosing Spondylitis. Something I couldn’t even spell if I didn’t have to. Apparently, back stiffness and pain wasn’t from scoliosis and bad posture. My immune system was causing issues with my back and joints. I had disks out of place, disks fading away, disks fusing and inflammation wherever my body seemed to be able to cause it. It was such an easy and simple thing to everyone. Then I had Arthritis. It was basically, in their own words similar and a common result of having the first thing. It was meant to explain why I have even more inflammation problems in my joints and when my body tries to heal from something. Lastly, they were ecstatic to tell me that everything else was the result of Fibro Myalgia so I should be relieved. My body was simply processing pain more intensely than the average person. Great, right?
Everyone expected me to bounce back immediately to the person I was and be amazing again. I spent another two years going through different treatment options, meds, physical therapies and professional opinions on how to handle it. Also, a shit ton of judgement. All that weight I gained from being stuck in bed for two years? Why couldn’t I immediately work to get rid of it? I wasn’t missing a limb or dying. And so many people who are go out there and do amazing things. Who was I to be such a failure? My pain was simple and easy. By my name I was expected to always be a fighter.
The thing is I am still working on it. I’m working on the crazy flare ups with no schedule, the ever changing symptoms, the emotional toll, the sleepless nights, the loss of self, the joints that pop out of place, the inflammation that can cause me to look like a hunchback, the use of cane some days, the weight that brings judgement, and the attention I’m expected to pay to myself. Boy, I am really really really trying to work on it.
And sometimes, I am not the best at it. It affects me and what I do. I hate that. I wish that wasn’t true. But it is true and I have to always think of ways to be content with that and try to live a happy life.
I think even before my physical health issues I’ve been open and weird about my mental health issues. I don’t keep a diary (hate it) and I go back and forth with therapists that my writing has always kept a part of myself and where I’m at at the time.
Growing up, I dealt with a lot of expectations. My grandfather ended up with all girls and all of us with our own problems. He himself had dreams he wanted to fulfill but didn’t. So all those hopes and wishes everyone had all felt to me. I was raised to think that was right and fight to make sure I fulfill them. That puts a lot of stress and pressure on a child even when they aren’t realizing that is what it is. Even worse, I never knew how to talk to them or other people about things that weren’t about the expectations. My natural introvertedness and social anxieties just got worse. I never knew who I was or what I wanted.
Then came bullying. It seperated me into two halves. The one who was always on in public and the one who waited alone in the shadows. That does work for awhile. The split functions with one stable and holding you together. The thing is that all it takes is one thing to bring it down completely.
For me, it was middle school. By the time I entered it that shadow part of me hated myself. It knew I was a failure and that I was doing only enough to get by in fulfilling my expectations. It mocked me and reminded me that there was no one I had a real connection with. I became someone who pitied themselves and that was what brought me down- that pity.
I accepted a lot for the idea of creating the image around me. What ever it took to seem like I was fulfilling some of those expectations. Whether it was complete or off or not. Some of it was being done right. The problem is when you make the chose to allow pity into your life the price for things becomes even more expensive.
I won’t go into detail about these things but I’ll say this: during puberty I dealt with massive family issues, bullying, rape, molestation and the complete denial of the idea of being my own person. I thought I was a tool for others.
That lead me into forming a lot of unhealthy relationships and making a lot of poor decisions for myself. That shadowy part of me was pushed aside even more. When any sense of a connection occurred I poured too much into it. I entered an extremely unhealthy relationship and allowed that to be the new thing that defined me. I had at this point completely accepted I was whatever those around me saw me as.
This didn’t change much in high school. The only thing I learned by the end of it was that I really never learned much about social relations and making decisions at all.
So, I thought entering University would be that fresh start with the new knowledge I had learned and the new opportunities that would present themselves. Yea, I was still pretty naieve and thought those problems I pushed down would stay down.
They didn’t. I broke. I had to face things I didn’t want to face and face even knew things. New lessons had be learned and boy oh boy did I struggle with them. There was no idea on how to balance them all with this new environment and this possible new me.
But eventually, everything around me was exploding and so I sat down to try to. It didn’t go so well at first and even now it is rocky at times. I’m Bi-Polar. It runs in the family. I have Depression and Anxiety. That also runs in my bat shit insane family. I have ADHD. Welp.
I can’t run away and live in my feelings when it comes to this. It’s always on my mind that even if I want to live in the feelings and writings that can be born from not dealing with it I can’t. Life is going on around me and I have to participate in it. So, I take my meds every day and always try to put that first on my list of responsibilities. Still, I can’t stop that there will be days that I will feel extremely down or days that I have a panic attack at the idea of something stupid.
What I can do is be responsible for knowing that I don’t have to be low enough again where I think of suicide or high enough that I am super productive for three weeks in a row at the cost of sleep.
It’s always going to be my bumpy ride
Growing up, I never had a problem in school. I was either great at something or if I spent some time on it could be better than average. It is something I began to define myself as. I was the smart one just like my grandfather. If I put my mind to it I could do anything I wanted. And yea, through high school I could certainly get by with being like that.
However, university is a whole different ball game. Especially, when you choose an elitist school in a foreign country that has a different system with different expectations. My first year, I had to realize I was not a special unicorn. I mean… I still was a unicorn just not a super special one or anything.
And that was fine… I like to be challenged and I wanted to prove myself. The problem was I wasn’t an adult ready to be independent. The school I attended expects a person to become independent.
Well, life hit me with a lot of challenges and I took them hard. School wasn’t the same for me and it fell way down on my list of things I need to handle. It came up only when feelings of failure and disappointment did. Or when I got angry and frustrated. When I wanted to lash out at the crappy things people did around me.
Now, I’ve been in University for six years and I haven’t finished my four year degree. Now, it isn’t completely me. There is medical leave and school class limit restrictions in there but still it’s on me.
All those feelings about it are really consuming. It’s not just the past me who expected to get through this successfully but the current me. I should be able to finish this at least and succeed in it in some way.
I am frustrated that there are restrictions on me causing this to be even longer and that there is a part of me that believes some of them are right.
All I know is that I have to figure out a way to finish my four years. That is a part of the old me that has remained and reminded me of what I always thought was me.
My family since I’ve been born has always been middle class or above. One side worked hard for it and the other was born into it. I was really naive and privileged with it. Private education, fancy clothes, fancy meals, and all the activities I could want were normal.
When the first depression hit from housing my side of the family took it hard and they never really fully recovered. For them it was a reminder of how they worked so hard in the first place to get there and all the feelings from losing that consumed parts of them. They acted like the things they did to get to middle class wasn’t worth the same anymore. They also realized that the spoiling they did for us may have not the been the best thing for us an individuals.
Over the years, that realization has become a crippling addition to their personalities. They have become overly difficult and hard as if to make up for everything they did in the past. The problem was they never accurately prepared their children for it.
In some sense, my age was beneficial that way. I’ve had the time and chances to start to learn as I’ve gotten older and realize the worth of money. That’s definitely a big bonus.
The problem is I don’t have the time, resources or ability to rapidly change and become independent. Let alone, help my family and their financial difficulties.
Recently, my mother’s hours have been cut to the point where staying in her house is truly a questionable choice. It could be done if my mom changed her life style but even with the changes she made she is used to a life style that can’t be afford. Much of which still requires money to be maintained whether you want to or not.
I can’t get mad at her for that because it’s always been her life, she doesn’t have the tools she should have by now and I myself fall victim to the same problem.
The issue is now I’m expected to do more than just help and I have no idea how I’m supposed to really do that. Besides, the new idea of trying to balance a full time job Monday through Friday and a part time job Saturday and Sunday. While, also trying to get online classes during this crisis and be able to do them with that work schedule.
Maybe then I can get enough money to cover my family and the mess they have dug themselves in.
Also, I need to pay for my university semester no matter what and float my credit card as a new card to use.
I’m really panicking here. It’s hard for me to do most jobs with my health issues. They are too hard on my body right now.
I’m really struggling with this emotionally and physically.
Over the years I’ve gone through a pretty big self discovery process. I’ve learned that a lot of the things I thought I wanted I didn’t really want. They were either expected of me or things I wanted because I liked the idea of them or even liked part of them.
Instead, I realized what the things I like or could want. I started to take a look at my hobbies and passions. Were there things I could make money off of? Make a life out of? Enjoying doing for a long time? There were… And all of them had different ways of going about them.
I thought here would be where I could still have that ambitious part of me fulfilled so I jumped in. I was only half prepared for it. So there’s been a few years of trial and error and mistakes and stuff. Can’t deny that.
I can say I’m trying to fix that. Do research first and set schedules I can keep. To say hey this is what I want so I will do the work for it.
With everything that has gone down in my life and whatever version of myself I have become I will always be a writer. That is a part of myself I can’t deny or not pursue. Whether I end up working somewhere else on top of it or being able to work enough to make that my life is still undecided.
I guess I just want to say that I believe that even with struggles I’ll never fully disappear or give up on this. I want to be a writer and share stories. That is my gift. Part of my purpose.
All I can do is hope that there is patience and understanding when it comes with those dealing with me.
My final subheading is about the current world crisis. It has basically blown up everything above to a level of extreme stress and wonder if I can handle it. The answer is I’m not sure. All I know is right now I am trying to survive and just keep going.
Because this pandemic has affected the system and structure of everything I deal with. From doctors and getting medication, to using online banking to pay bills, to taking classes, getting a job and to being able to leave my home at all has all exploded. Honestly, my mental health and physical health hasn’t been the only thing that has severely taken damage from all of these changes. I have in total of everything become over-worked, over-stressed, unsure, in unbearable pain, questioned myself to no end and have scrapped myself off my bed to try and just move through it all.
I couldn’t of even imagined the result of this pandemic on me and my family. On how it has changed everything. Like Taxes. Filing them was the most difficult thing ever this year. Like OMG WHY WAS FILLING MY TAXES SO DIFFICULT.
For anyone dealing with Chronic Pain and struggling to find a way to tell others you aren’t alone. My family doesn’t get it; my friends try to get it and my cat is certainly over it. Below is a copy of a post by Christine Miserandino and her Spoon Theory. It can really help you when you feel like you are digging in the trenches and lost trying to find a way to communicate things with others : The Spoon Theory