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It's been a few years, but hi readers!
If your new to this blog, let me give a quick run down:
Years ago during a MS support group, the idea of starting a blog/vlogs and documenting your journey was encouraged. Soon enough, I'd gain a decent following, met extraordinary people and great friends (a few I still keep in touch with). It was therapeutic. I'm not very open with discussing all the feels, but having this blog really helped with that. I'm opening it will help again, and perhaps help other people new to this disease reading this. I've unlocked all of my previous entries and will be unlocking my YouTube videos.
Since I last posted, I moved away from Philadelphia and made roots in Buffalo. Strangely enough, MS is super prevalent around these parts. I don't have to explain to a single person what Multiple Sclerosis actually is. However, over the years I became withdrawn. No longer being active in the MS community, I wasn't even telling people I had MS. I thought moving to Buffalo would give me a new identity.
Living with this disease has absolutely been no picnic. I stopped spending time with friends. I stopped dating. I stopped taking overall care of myself. I became angry at the world, kept people at a distance and avoided my diagnosis at all costs.
Life was going well, blissfully ignorant, with my head in the sand. Until I met someone new. Let's call him R. Now R is much younger -- I am talking real cougar, 9 year age difference. What started off as what I wanted to be short-lived and inconspicuous, I would quickly become aware that this was the real deal. Even though I've known him for 2 years, I've know him for much longer -- he was the image in my head of the ideal partner in crime for myself. Plane going down levels of anxiety would set in. After constantly being told you are perfect by someone you care about, it puts a lot of pressure on a person. Telling someone you are romantically interested in that you are disabled with a disease that has no cure, panic and depression sets in.
Then my vision started to become blurry, the next month I had pins and needles in my hands, and then the following month I started to have difficulty walking. I had to wake up to reality that this person who has put me on a perfect pedestal would see me at my worst. Then my mother would validate my worst fear out loud -- he is 25, you are 34 with a progressive disease, so why on Earth would he stick around? Like that, I would be at war with myself. One side started to purposely try and sink the ship. The other would put him to the test to see how he would be in crisis. Lies, deception, and an overall shit-show would soon happen once my health became worse. We had an expiration date and my mother could be right. But with talent, I pushed away. Ask anyone with MS and they will tell you that feeling like a burden is our worst fear realized. I wanted R to not see me as perfect, as it was too much pressure on this sick girl's shoulders. I cannot be perfect if there may come a day where he would have to help me take a shower, help me dress myself, or hold my hand when I'm unsteady. And let me say that he is possibly one of the most unreliable people I have ever known.
He told me the other day that I ruined us. And I did not because I purposely wanted to, but because of my own insecurities with being disabled. It took burning what I had with R down to ash to realize that.
So here we are. Losing someone I truly love very deeply was a wake-up call to get shit together, to take care of myself better, and to stop sabotaging life because I am scared shitless. I need to work on myself. In my 34 years of being on this Earth, I had never felt that way for another person. In the process, I ruined myself as well. And if I am going to welcome any relationships or friendships in the future, I am going to have to stop being a scared, self-sabotaging shithead.
I don‘t have many good years left, I need to start living. I need to get out of my head and enjoy life for what it is.
I hope to reconnect with a lot of you soon. This blog needs an extreme overhaul.
