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Sunday, July 29, 2018

Sacrifice for Life

Sacrifice For Life


Do You Truly Live

Do you get up everyday throw on your clothes and rush out the door to work? Maybe you spend some time getting ready and then it’s off you go. When that work day is complete are you tired and ready to go home and relax?  Do you make dinner for the family and spend some quality time together, sounds nice doesn’t? Maybe you finish up work and have to run errands, pick kids up, attend their after school activities. Sounds like for the most part you might have a pretty good life, at least most would probably think so. Living can certainly mean that you took every opportunity to enjoy quality time with your family. That sounds like a pretty simple and nice life if you ask me.
Some people out there believe that if you are not seeing all the wonderful things the world has to offer that you are not truly living. That is something that can be done as a family activity, so why not jump out there and explore while you enjoy that precious time together. Are you an adventurous, thrill seeking adrenaline junkie? Take some risk and try a few new and exciting things. Do those things that most people either are to scared to do, or just cant do it. Whatever you do, don’t waste a single second of your life. Why, cause not everyone has it so lucky. Some people have to sacrifice everyday just to live life.

Quit Your Bitching

I wont go into how many people I know that constantly complain about their less than perfect life, that actually is pretty much what I just finished describing above. So many people don’t get it, and take for granted what they have. Do you have any idea how many people I know that will complain about their life but not get off the damn couch? This brings me to the point of this blog, my soul reason and drive behind this one is all in regards to what those of us with an unhealthy life do everyday in order to live life. Trust me, I have had many people tell me that they view me as lazy, unmotivated and just seeking attention. They can all just go right on ahead thinking that. Until you have lived it, you have no idea what it is like.

After spending a rather wonderful evening out for the Bristol Night Race, It made me think a lot about the sacrifices some make just to live their life everyday. I’m not just saying this, I am hoping that this falls into open hearts and minds. I am speaking to be a voice of many and maybe one day make a change in this world that means something. You truly don’t realize how much being diagnosed with certain illnesses impacts your life until you are faced with making That Sacrifice. For 20 years I have been making sacrifices, some I wasn’t even aware I was really making, but I was doing it. Now, I am having to make even more sacrifices than I ever used too. I am hoping that some people will open their eyes and maybe see how good they truly have it. If I could get one person to realize how negative it is to compare their situation to another’s. By all means offer support, but unless you have the same diagnosis its unlikely that you truly understand anything about where they are coming from.

It’s A High Price To Pay

Each and everyday when I wake up I have to think about what I can do to go about my day. I am constantly faced with having to cancel plans or change my routine because of my pain level or other symptoms. I loved to go dancing, something that just gave me joy. I know that by going dancing it will mean I cant do something else. Today I had to make a sacrifice I didn’t like having to make. After enjoying an evening dancing, then attending our home towns night race, My legs are in bad shape. This meant I had to sacrifice time with my family out on the lake.

When someone feels good, they don’t realize that other people in the world would give anything to do kids school events, and house cleaning and work full time and really still be able to enjoy time just relaxing. Sadly that is not the case. Especially not with AS. Sitting on certain furniture triggers more pain. Sitting to much can cause more pain. Standing can cause more pain and all the increase in pain can cause for issues walking or driving. It never is as simple as just saying lets relax on the couch and watch a movie. You cant get comfortable, always moving, getting stiff and frustrating those around you. Then there is the potential that having had to many bad days in a row sitting down might just mean you fall asleep and now you are completely missing out on that quality time.

It’s Not Easy Being The Loved One

It truly isn’t just those of us with the diagnosis that suffer. Our loved ones suffer not understanding why you don’t spend much time with them, or why you don’t talk to them much. What it all boils down too, is they struggle to understand and you have no idea how to help them really get it. I hate more than anything when someone says to me “but you did___, so you can do this too.” You are right, we might have completed a certain task, but that came with sacrifices. I most certainly sacrifice my comfort level far too often in order to just live life. I will push through unbelievable symptoms just to spend quality time with someone. I hold down my job, try my best to maintain my house and caring for my children and 3 dogs.

I love being outdoors and thrilling activities, I most certainly have made myself much sicker because I wanted to partake in an activity. I do it, not because physically I can, I do it because I want to say I lived. Unfortunately it is getting harder and harder to participate in these types of activities and I am finding myself doing less and less with the ones I care about because of where my health is at right now. By no means have I given up, I am making sacrifices everyday just to make it through the day. If I have to cook, or clean, or do anything at all and have participated in an outside activity it is going to take me a few days to recover from that.

How To Balance The Sacrifices

I am currently trying to find a way to balance these things better. I need to hold down my job, so I have to plan around this first and foremost or I wont be doing anything else at all.  Next I have to plan around the needs of my family, do they have anything scheduled, do I have any appointments or things outside of work scheduled? If I have had to do any of the above, you can forget me cooking dinner, I will not be able to stand in the kitchen that long. So most days my family isn’t eating the best of options for food. This also makes an unwated sacrifice, my health can be affected by what I eat.


This leaves me constantly sacrificing time with other family and friends, I must have the energy to work, and care for my home above anything else. Some days I feel like I can take the risk and go do something extra, other days I do not. Just going to the strore is a monumental task for me to complete. So yes, I choose to go live my life regardless, but don’t for one minute thinks it is easy. Because unless you have been there you have no idea what I am putting myself through in order to do those things. Please, don’t be one of those people with a healthy life that complains and does nothing productive. Don’t be one of those healthy people who accuse us all of just being lazy when we cant or don’t do something. Dear God please don’t be one of those perfectly capable people who just refuses to do anything because you feel self entitled to a world taking care of you.  Some of us would give anything to live a day without having to question if our choice would make us feel even worse.

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