It can be so hard to love yourself, but one of the best things we can do for ourselves. As a society, we tend to think it
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I have always had the best support system from the beginning of my illness and beyond. Then I found a Central Pain Syndrome support group and it changed my life.
Before the Support Group
From day one my parents, boyfriend, and friends have been behind me. They were always there for me when I needed to complain or when I was scared. They never once thought I might be faking or being dramatic. It meant the world to me especially because there were times that I felt like it was in my head.
Even with the everyone I loved on my side I still felt so alone and like the biggest failure. I kept thinking why can I not be thankful for the love and support I have around me.
I’ll tell you why. I realized even though they were with me they didn’t necessarily fully get what I was going through. They only knew what I told them and from what they could see when I was in pain.
Feeling Out of My Head
With chronic pain and invisible illness nothing is as simple as breaking your arm and having a cast. I look perfectly healthy on the outside, but on the inside I feel bruised and like I have lost the biggest fight of my life.
I constantly had these crazy symptoms like burning all over, or pins and needles. The worst of them all was the bruising easily, the goosebumps, hardly being able to wear my cute clothes. I knew it was time I needed more help.
I continuously started to do my research and came across the Central Pain Syndrome group on facebook. I knew there might just be a bright light atthe end of the tunnel.
Finding My Support
Once I came across the Central Pain Syndrome Foundation Instagram page and their
My First Meet and Greet
I wrote my first post to the group where I introduced myself and talked about my diagnosis story. I had so many people commenting and welcoming me to the group. I heard many other’s stories about how they were diagnosed and found many of them to be similar to mine.
I started posting my blogs to the foundation’s website. As I continued to get more involved on the Facebook group I started to realize there were so many more out there like me.
Finding Relief Through Support
One day I was in a lot of pain and I decided it was time I ask about one of the weird symptoms I was having to see if anyone else has. Immediately members started to react and comment on what I was saying. Most of them had the same
I wasn’t the only one who couldn’t wear tight clothing anymore. I wasn’t the only one who bruised like it was nothing. I wasn’t the only one who had issues with cold and the shower.
I may not be able to physically fix myself, but it was surreal that I was able to actually talk to others in similar situations and know I wasn’t crazy or being a drama queen.
Continuing to Be Involved and Help Others
I have learned so much from being in a support group for chronic pain/Central Pain Syndrome. Sometimes it can be hard to find the right fit and it is all about continuing to find where you belong. It could even be as simple as finding one or two people who really make you feel comfortable and not alone.
I just want you all to know that I am here and I will always be a place of comfort for anyone who needs it.
Forever Strong has been my catch phrase over the last few years. We all have a story behind what we say even if we don’t realize it.
Why Forever Strong?
I chose the phrase Forever Strong because there have been days where I feel like it is too tough to go on and what’s the point. When my pain hits its threshold I will sometimes wonder if I can truly handle living like this for the rest of my life.
I have always liked the idea of the infinity symbol and it’s representation of forever. For a while I used the saying rise because I couldn’t think of the word I wanted. One day the phrase forever strong came into my head and I have used it ever since.
Using My Phrase To Help Others
I started using the hashtag #foreverstrong in all of my posts for With Love, Alexa. I continued to use it in my speeches, videos, and everyday life. I realized there was more that could be done. That is when I started to create merchandise. Originally it started out for just me to wear around, but then I finally created a couple of pieces that I wanted to sell.
My mission is to help people who feel like they don’t have a voice, or who feel like the are alone. At one point I was in such a bad place because no one could figure out what was wrong with me. Doctors were telling me they couldn’t help me anymore and sent me elsewhere. I also had a Doctor basically tell me it was in my head and that I am normal and healthy. I knew I wasn’t and I made it my mission to advocate for myself because in that moment I realized I am the ONLY one who knew my body better than anyone. I had amazing support with my family, my boyfriend and friends, but there were days I felt so alone.
How We Can All Stay Forever Strong
The more we talk about our stories and share how strong we are. The
REPEAT WITH ME… WE ARE ALL FOREVER STRONG
I have noticed how hard it can be to stay strong during times like these. Many of you reading this might even feel like they are going “crazy” just sitting around doing nothing. You might even feel your motivation slipping from you.
Maybe you are even depressed and anxious.
In these moments have you stopped and thought about those who are in crippling pain every day of their lives? What about those that have depression for years?
These same people are the ones you might have said to try meditation or yoga? You may have innocently asked if they had tried this, this, or that.
Those same people are still going through their day to day struggles while trying to remain positive while also trying to help you in anyway they can.
I am not speaking for anyone, but myself. Those same people who have given me their opinion on what I should do are now the ones struggling. I am now the one who is there to listen and try to help, but I will not be the one to tell them what they should do like they normally would to me.
I am not writing this post to seem negative or to make others feel bad. In fact I am writing it to open everyone’s eyes. Maybe now you will look at those who can’t work, who spend days in bed because they can’t move, or those who are in such a bad place they can’t function and realize they aren’t lying. They aren’t making this up in their heads and most of all they don’t want this anymore than you don’t want to feel this way because of COVID-19.
We are all human beings with struggles, with triumphs, with pain and with love. Some people were given harder circumstances than others. Maybe this quarantine is supposed to put us all on an equal playing field and show us the positive and negative sides of everything.
I decided to take my story with invisible illness and turn it into something that can help others. Aside from my blog and podcast I recently started my mini-series on youtube called Staying Forever Strong. In this series I interview others asking how they stay positive. I recently spoke to Britt from Bachelor season 15 and Zach Rance from Big Brother 16 among many other amazing people.
Besides spreading just positivity I recently launched my Forever Strong Merchandise where 20% of each item sold will go to help COVID 19. There are so many things we can do to help each other.