As 2017 comes to a close I sit at my computer reflecting on my year and try to look forward to a brand new year and all it has to offer. Any “normal” 35-year-old adult would be excited to “party out the old year” and kick off a new year in style by going out on the town with their significant other or a bunch of their close friends. They would be buying a new outfit and making plans to “live up the rest of 2017!”
Sometimes, if I am really honest with myself, I do envy the people who are able to go all out for New Year’s Eve and spend a fortune on lavish outfits and expensive bottles of wine and go out for fancy dinners, eating filet mignon and lobster tails. I miss that time in my life when everything was so simple and the only problems I had were what dress to wear out for the night and which of my friends to hang out with for the evening.
The last time I went out for a New Year’s Eve celebration was when I was 20 years old. At that time in my life I was already diagnosed with scleroderma (a rare chronic illness that affects the skin, blood vessels, circulation and major organs like the heart, lungs, kidneys and liver, causing them to harden and thicken) for about a year, maybe two years. I was really denying my disease at that point in my life and so I continued on as if I was perfectly normal and I brushed aside all of the pain and discomfort I was feeling and chalked it up to feeling “under the weather.”
I had made plans to go out with a few of my close friends to a local bar and celebrate with a few drinks and some dancing. Sounds pretty normal, right? Well by the end my evening was anything but normal. I ended up getting sick in the bathroom after only a half a sip of my cocktail and feeling so dizzy I could barely stand, let alone try any sort of dance moves of any kind. I ended up leaving an hour after I got there by myself and having to pull over three times on my way home to vomit out my driver’s side door on the side of the road. I couldn’t understand why I was feeling like this or what was wrong with me that I couldn’t even enjoy a evening out with my friends. In my mind I was still thinking I just had the flu or something and the reality was that I was having a flare-up and serious symptoms brought on by scleroderma.
It took me several more years to finally accept I was not a healthy, “normal” person and I really couldn’t do all of the things I once enjoyed doing. Realizing that and eventually having to give up some of the things I loved to do was extremely heartbreaking and difficult for me to accept as a 20-something-year-old.
I am now a 35-year-old woman living with scleroderma and every aspect of my life has drastically changed since that New Year’s Eve 15 years ago. Going out to bars and hitting the clubs isn’t really an option for me anymore. I am so tired the majority of the time that I would never be able to stay up until 11 to go out to a bar or nightclub and drink and dance until 4 or 5 in the morning! That just isn’t possible anymore. Running around downtown in a sleeveless dress without a coat on, walking block after block to hit up every bar on the strip definitely is not something I can ever do again! For starters, it’s way too cold to be walking around wearing nothing but a cocktail dress and high heels. Secondly, I can barely walk up the stairs in my house and there are only eight, so trying to walk a few blocks in the middle of winter outside is impossible!
Learning to accept my disease and my limitations also forced me to accept that I have to live a lot differently than I was before my diagnosis. Having scleroderma meant I could no longer walk around outside without a coat, a warm hat, boots, a scarf and mittens in the winter. I needed to keep my body healthy and strong and that required changing my life habits along with my expectations for myself and my life. Trying to accomplish those changes was a lot easier said than done.
I wanted to still be able to have the same experiences and fun I had always had but I couldn’t because my body had other plans. I wanted to be able to enjoy going to outdoor concerts and walking the mall. I wanted to still have my life on my terms and as time passed I quickly realized that my disease was not going to simply fall in line and allow me to go on as if nothing had happened! Scleroderma was here to stay and it was definitely making its presence known!
New Year’s Eve looks very different now for me. I spend the night at home in my warm fuzzy pajamas watching scary movies and eating veggies and dip and cheese and crackers, drinking caffeine-free soda covered up with a warm blanket and slippers. Funny how different my life is now than it was before I got sick.
I think a part of me will always miss the days when I could go out and dance all night long and celebrate with my friends and come home in the wee hours of the morning exhausted and laughing, but that chapter of my life is long gone. I know my limits and I would much rather spend a quiet evening at home watching movies with my bestie than risk going out and maybe getting a cold that could turn fatal in the blink of an eye or slip and fall on some black ice and possibly break a leg or an arm. My priorities have 100 percent changed and although some may look at me and say I am boring or I am too cautious and play it safe, I would completely agree. I can’t afford to throw caution to the wind anymore. My life depends on me making healthy decisions for my body.
Yes! There are a ton of things I just cannot do physically anymore, and yes! My life has been changed forever and my disease may seem like it runs my life! In a way it does run a portion life, but only to a certain extent. I am myself and I am still the fun-loving, silly, sarcastic person I have always been. That part of me has not changed but I do have to consider the fact that I have a rare, chronic, terminal illness when making decisions that can affect my health and my body.
Now I realize a lot of people may not necessarily understand why or agree with my choices and might think I am being a “baby” or that I am “a party pooper,” and that’s OK – everyone is entitled to their own opinions in life. If you have not been around someone living with a chronic illness on a daily basis, you cannot possibly begin to understand the struggle that is my life and the issues I have to take into consideration just to get through my day, and that is OK too.
No, I may not get to ring in the new year at a wild party or out on the town with my other friends, and no, I might not get to enjoy everything I want to do in life. However, I am alive and I am doing everything in my power to keep my body healthy, and that is something I can celebrate for myself and be proud of. It’s not easy and there definitely are regrets for me and things I miss out on, but I think everyone has things they wish they could change in their lives. The reality is none of us can go back and fix our mistakes or fulfill the parts of our lives we missed out on in the past. The only thing we can do is live in the “now!” and not take what we have or the people who love us for granted!
So my New Year’s Eve celebration might not be the most amazing way to say goodbye to 2017, but for me it is a way to appreciate making it through another year living and as healthy as I can be. For me it’s a way to toss out the old year and all the ups and downs that came that year living with scleroderma, and quietly bring in a brand new year with a fresh outlook on my life and my illness and a positive attitude, so I can prepare to fight my way through another 365 days living with scleroderma!
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