A.S. Gets Personal

impact those with as framed

 

 

Ankylosing Spondylitis affects more than the person suffering. Everyone in their life feels it one way or another. Obviously your immediate family and friends must adapt to help with daily routines we are no longer able to do. Outside of that circle of people the rest have a tendency to get upset with us. Some just don’t understand the reasons for repeatedly cancelling plans. Not being able to go do all the wonderful things young adults love and live for.

 

Going out for drinks can be a deadly cocktail with some of our medications. Dancing is too taxing on our bodies most days. We may be able to mask the pain on occasion but we’ll pay for it later! The pain and the fatigue way heavy and some days it wins but that doesn’t mean that we let it win. We must temporarily lose the battle to win the war.

 

Physically we just can’t keep up but mentally we want to so badly!

 

Dating? Who wants the baggage of someone with a chronic illness? I know it’s more common these days for everyone to be lugging around something but Ankylosing Spondylitis is not your normal baggage. There are mountains of medications multiple times a day, disability, deformation, and all this while you’re so young when most your age have no cares in the world. Trying to dress for a night on the town can be successful till you get down to the feet. I haven’t worn more than a sneaker in years and they don’t exactly match that little black dress. Attempting to put on jewelry with arthritic hands can be quite amusing and more often than not unattainable.  One “night out” can leave us with many more nights in. Not to mention life in the bedroom gets difficult quickly when your body is ravaged with inflammation and you’re battling the fatigue that comes with it.

 

It’s tiresome on all involved to say the least but being the one who always has to say no when you so desperately want to say yes is heartbreaking. Finding that amazing person who understands or at least tries is worth dealing with all that didn’t.

 

We may have a laundry list of reasons many run but for those that stay…they end up being the lucky ones.  After all we are patient thanks to our trials throughout life and extremely grateful for what we do and to those who love and support us. 

 

How many Spondy Mom and Dad’s wonder if they should be more for their kids?

 

I always wonder if they are forced to grow up too fast. Are they doing more chores than other kids their age? Not to mention getting them ready in the morning feels like an Olympic sport some days! Playing can be difficult; my daughter loves dancing but that is not something my body can do anymore, roller coasters are my sons thrill but those were banned by my Rheumatologist. How do you explain to your children the why’s of your limitations?

 

I have shown my kids the process broken down into pieces they can understand but just enough to avoid any fear. When they act like mommy’s pain is their own it really bothers me and I quickly remind them they are not like mommy and don’t have to worry about that and it’s normal for people without chronic illness to have aches and pains here and there.

 

What about what you want to do with them but know you shouldn’t? Do you go for it anyways? I do on occasion and pay for it most times but I wouldn’t change it for the world. My kids are worth it!

 

The way I see it our kids are growing up with more understanding of people with disabilities. They are learning responsibility and how to be a beneficial member of society. They know sometimes you just have to say no even if you really don’t want to. They know very well what determination and strength can bring. Most importantly they witness a love so strong by our fight to bring them the best through our pain. So I don’t think they are lacking anything in fact I think they are some lucky kids that are going to grow into amazing adults.

 

***

We are strong warriors and through all of our challenges we adapt and find ways to overcome them.  Even if overcoming them means sitting one out.  To further illustrate this you should read the Spoon theory! Thank about those spoons!!!!

 

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2 responses to “A.S. Gets Personal

  1. A dear friend of mine and fellow AS sufferer sent me your blog link just yesterday and WOW. I am so thankful to her. It will take me a while to catch up on all of it but THANK YOU. You put into words so many things that I have felt but weren’t able to find the words myself. Keep up the good fight.

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