Ok, so here's the deal. I am human. (I know, it's shocking!) I feel all kinds of things during the day, and probably more than the average person does at that. Having a chronic illness is a scary thing, it's a painful thing, it's a lonely thing and a very depressing thing. I feel all of these emotions every day but I put a real quick stop to them as soon as they enter my head. It is far too easy to fall into a deep depression being at home all day on Long term leave from your job with nothing but your illness to think about, no one but your doctors to see during the day when everyone else is working and living a busy and productive life. I feel like a prisoner in my own body, and although it looks pretty good on the outside, it's a big disgusting lie every time I look in the mirror because I feel like absolute Sh*t EVERY SINGLE DAY in varying degrees. Now that I got that out of my system, here's how I've managed to keep my head above water and make my lips stay in an upwards curl for the last two years.
-A major key in helping me find peace with being diagnosed as a person with a rare disease was finding others like me in order to not feel so alone. At first, when you are sitting in the doctors office and they are just looking at you with these looks of sympathy and confusion and referring you to anyone they can think of, you begin to realize just how alone you are. Eventually I realized I couldn't count on these medical pros to give me reliable answers and that this was going to be a long and complex journey so I turned to the internet to do research and found all sorts of information. Much of it was very repetitive and standard and didn't really connect to how I was feeling or what I was really living every day. I also found all the horror stories, the obituaries, the YouTube videos celebrating the lives of those who had passed.. and that freaked me out and made me cry and start feeling sorry for myself.
Finally, I came across the Facebook support groups that changed my life and gave me the answers I so desperately needed. These people were living with the disease daily, they were pros and they were able to help me so much. Please, take the time to seek out others like you and ask questions, participate in conversations and make friends with people living life like you do every day. There's something so refreshing about sharing your story with people who actually UNDERSTAND you 100%. Friends and family are an amazing support system to have, but unless they've lived it, they just can't get it.
I later came across Instagram and I met some fantastic people on there as well but only a few who had my condition. I decided that I had received so much help and support from my group and it wasn't necessarily because we shared a disease, but because we shared life experience, understanding, pain and suffering, we were another type of human being that appreciated health and comfort unlike others who haven't known this type of life. I started connecting with others with all kinds of diseases, learning about them, sharing stories and symptoms, bringing each other up when we were down. I started posting little positive pictures and quotes to remind me to stay positive and I realized that these little things were making a big impact on others too and they started coming to my page just to get a motivational boost during their day. Their thank you messages would almost bring me to tears because I couldn't believe that I was making their day brighter. This was much, much bigger than I had realized. My own personal daily motivator was driving in a secret audience and inspiring others to stay strong and keep their chins up along with mine. All of a sudden I wasn't so alone. All of a sudden I wasn't so rare. In the end we are all in the same boat, suffering with some sort of pain or struggle and we need to push past our barriers to get to that light at the end of the tunnel whether it's finding a cure, beating addiction, finding happiness, being pain free, whatever it is, we can all relate.
As for changes in my home life, because I was on two short term leaves and then finally a long term leave from my IT office job, I decided to get a dog to keep me company at home and this little guy probably saved me from becoming depressed. Pet therapy is an amazing thing. He gives me a reason to wake up and get out of bed every day, he gives me someone to take care of, he gives me love, affection, company, forces me to do a little bit of exercise daily when I take him for his walks. He makes me laugh and brings a lot of joy into my day. I was never a dog person to begin with and today I could never imagine him not being a part of my life, he's my little baby!
Something I highly suggest if it is available in your area is a rehabilitation center for disabilities or injuries. I was referred to the Constance Lethbridge Center by my Rheumatologist for Physiotherapy, Occupational Therapy, Aquatic Therapy, Psychotherapy, and Nutritional advice. I went twice a week for all kinds of treatments, to help regain my strength, work on my mental state and teach me how to live with my new restrictions. Luckily, I live in Canada and this was all covered by Medicare but I understand this would be something that is covered by insurance as well since it's a government funded program. It was a life changer for me as well. Unfortunately I started getting seizures and needed to take a break from the center for a while, but I DO plan on going back.
This post is getting long, but I think an important last point is to try and look at the positives. You can't change your situation at the present time, therefore why complain and be negative about it, that honestly won't make anything better, it will just make everything worse. As I put it to a friend earlier in the day in poker terms, You can't change the crappy hand you've been dealt, but you might as well try and bluff it to still win the game. The cards don't necessarily determine the outcome, your attitude and how you play does. I don't want to be the sick girl, I want to be the same girl who just happened to be sick. There is no point in taking medications, visiting the doctors, doing tests and going through all the agony of the disappointment of failed treatments if you plan on being sick forever anyway.
I am still me, I am still here, still inside this sick body. I am doing everything I can to fight this disease and get back to my normal and healthy self, and in the meantime, I am trying to bring a few friends along on this positive journey to make their day brighter and show them that this isn't the end. I truly believe that we will all get better, it's just a matter of desire, effort, science and time. We will get there.
What do you do to keep you positive despite the hard days we go through?
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