Wednesday, September 3, 2014

Just being truthful


Okay, I know my blog has been negative recently but that's because I'm going through a difficult time. This blog's purpose is to be transparent. I am not going to act all happy go lucky when I'm not feeling that way but at the same time, I'm not going to be a trigger. I am NOT trying to get pity, I'm just showing the truth to my life. I'm showing those who are in my position (aka a spoonie) that they are not alone and for those who don't know what people with chronic illness deal with an inside look. With that, I hope to break the stigmata against people who are chronically ill.

We finally have things in place and got the ball rolling to get me "better". The couple of doctors I've already seen have given me hope. They want to help me and believe that I am truly in pain, they aren't giving up on me and want to find out what's wrong just as bad as my family do. 

But lately I've had to accept the way my life is currently. I'm 20 years old (almost 21!) and I walk with a cane. I'm 20 years old and I have a temporary handicap parking permit. I'm 20 years old and looking into getting disability money. I'm 20 years old and my body acts 60.



It's hard for a spoonie to come to terms with their needs. And from what I've noticed, it's mainly teenagers and young adults. For kids, they don't know any better, they think their braces, wheelchair, oxygen tank, etc. is normal most the time. For older folks they may be stubborn but within, they accept that they are getting old. But for teens and young adults we know this isn't normal and that our bodies shouldn't be acting like this. We also are self conscious because having an invisible illness we don't look like we need a cane, wheelchair, or oxygen tank. Sometimes we over react, people see us and just go on with their day without showing any reaction. Other times, it's like everyone is staring at us like you see in the movies for a popular kid, except we don't have wind blowing our hair and instead of in admiration its WTF. We never know what crowd we're going to get.

A couple of weeks ago I went with a friend to a movie and dinner. Before the movie no one really paid attention to me hobbling around and sometimes tripping over myself (yup I'm a klutz) but after the movie there were several groups of teenagers here and there staring at me with the WTF look. Yeah it bothered me inside, I hate any and all judgement, but it didn't make me self conscious. Honestly, I kinda felt like saying something but I ignored them and just kept on wobbling. At dinner I got treated "normal" which made me feel good. I love when people don't treat me differently. I'm still learning how to deal with a cane though, like if I'm at a counter or a table I'm still figuring out how to not let it fall. It's fold-able which makes it easier when it won't cooperate.

Another problem I face is weight gain. I've never been self conscious of my body despite everyone else being. Up until recently I've been naturally skinny, no matter how much I ate I was tiny. But in the last year, especially since summer, I've put on weight. It's so foreign for me, I've always been able to look in the mirror and say oh well. I naturally have a pudgy stomach, and if I'm wearing the wrong kind of clothing or just finished a meal I look pregnant. I even get asked how far along am I by strangers. I've always been able to laugh it off. But now, I look in the mirror and I see my stomach and stretch marks and wish I could loose weight. I've also faced having most of my clothing not fit anymore, my shorts and pants can't button and fitted t-shirts don't fit. I quickly learnt how tiny or average people can feel like an enormous whale.

Some of these issues are because of my illnesses, with any food I get bloated, and because of my medication it messes with my body too. Also, since I'm in bed and not active I can't burn off anything I eat. Getting ready for a doctor's appointment I had the other day I broke down crying because nothing fit besides my athletic shorts. My parents calmed me down but my body is confused. I'm not use to feeling like this. I know plenty of people still wished they were in my shoes. I know there are those who wish they can gain the weight I have and those who just wished they had my body.

I honestly feel selfish. With all those people who wish they were in my shoes and those who don't even have enough food to eat I'm over here uncomfortable in my body. I personally feel that if someone is taking care of their body by eating right it shouldn't matter what weight they're at or how their body looks but here I am being hypocritical wishing I could workout and loose this weight. But you know what? I'm going to continue holding my head up high. I'm not going to let how my body looks consume my thoughts. I'll repeat what everyone has told me and accept that things are ok and once I'm well enough, I can get going and most likely loose the weight easily. If not, I'll workout until my body is back to it's "normal"

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