I Miss Me Too

So this is probably really random, but it hit me recently, that in conversations I seem to say, “I used to….”, frequently. For instance, I was playing basketball with my kids and some of my friend’s kids. Okay, not fully playing, but just shooting around. I was asked if I played… I said, “I used to… but not anymore.”

My husband does most of the cooking now a days, so in conversation, it’s brought up. People ask if I cook at all, and I answer, “I used to all the time… but not much anymore.” So what am I getting at? I’m getting to the point that there used to be SO many things that I USED to do, that I can no longer do… or that I can’t do as frequently.

It’s not something that I have fully looked into, until recently. I get random thoughts in my head sometimes, where I will just around and reflect on things that I used to frequently do in the past. They say people change with time, but people change due to changes in their life, and with time.

miss the things that I used to do frequently; maybe that’s why I don’t spend a lot of time thinking about the past. It can be depressing sometimes looking back and realizing that are so many things I can no longer do. It’s almost like I don’t even realize all that I’ve ‘lost’. It obviously didn’t all happen at once, but gradually over time.

One of the monumental things that I miss greatly is being outside. Obviously I live in Texas, so the heat isn’t something that is easily avoidable. It’s not that I can’t go outside cause of the heat, it’s that I can’t do all the things that I used to very easily. Some of them being swimming, fishing, hunting, going to the lake, river, etc. Going to watch outdoor sports, or even playing in them. I know some people are like, well swimming, you’re staying cool… very true, but if it’s over 100 degrees outside, my body is going to be fatigued from the heatand even more so after swimming.

I used to be able to go run errands all day long, or a couple days in a row… now it seems that even going to the grocery store is a chore that I have to plan out ahead of time. Somebody asked me if I was going ‘Black Friday’ shopping… that was a big NO! No way, nope, not gonna happen.

Some people wonder why I only wear comfy clothes, that mainly being jeans and a T-Shirt. Well for one, it’s comfy… the other… getting ‘dressed up’ takes a lot of energy, not to mention the whole girl thing of doing hair and make-up.

I’ve had people tell me that they miss the way I used to be… the things I used to… etc. It’s like, and I don’t… I didn’t ask for this… I didn’t want to stop doing the things I used to. I had to make changes to ensure I am doing okay, and that I do not have to deal with a flare up, or worsening symptoms.

Don’t act like I don’t miss the way it used to be either. But I have made changes in my life and have found new things that I enjoy. So with everything that was taken away, it’s almost like I gained something new that I didn’t know I would enjoy.

The bottom line… I do miss who I was before my diagnosis. I don’t like missing out on doing things because of it, but I do enjoy the things that I CAN do. I have to find the positive in my new life, because if I just focused on the negative, then it would consume me…

xoxo

Ashley Ringstaff

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***Originally Published on MultipleSclerosis.net***

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Why Are You So Negative?

Do you know how many times, someone has asked me why I’m so negative? Or why it doesn’t seem like I have hope? I can’t even remember how many times, but way too many, lets put it that way.

I know you’re probably wondering where I’m going with this exactly, but hear me out. I’m not a negative person, and I do have hope for a cure for MS and many other illnesses like it. However, it’s a bit different when you’re actually living with an illness.

When people bring up things they ‘heard’ or something they saw on Dr. Oz, or something like that… they share what they have heard with me. I really appreciate them thinking of me, and sending the information my way, but sometimes it can be overwhelming.

So let me explain the fact that I am signed up to receive all MS news updates to be sent to my e-mail as soon as it hits the Internet. How do I do that? Well, I make a Google Alert, with the key word multiple sclerosis, and I can choose how often I receive the updates.

With that being said, when all these up and coming new medications popping up, it seems that things are looking up for those with MS, and I’m not arguing that. I’m also not saying I’m against trying the new medication coming out… So people wonder why I’m not super excited, over the moon, jumping for joy, etc.

I wanted to take this time to really explain why I react the way I do. I don’t show much emotion when I hear these things, because I’ve been there done that. Meaning I’ve sat there and waited for a medication to be approved, so that I can start it immediately, because of all the great research and clinical trial results it came with. However, it didn’t end up working for me the way it did so many others.

While I am happy that there are more choices out there for people with MS, people also have to remember that a certain medication can work for some, but not for ALL. There is not a ‘size-fits-all’ medication for people with MS.

So, with me not taking well to the big headline medication, I’m a bit cautious now. It’s not that I’m NOT hopeful; I just don’t want to be TOO hopeful…. does that make sense? I don’t want to sit here and be let down, again and again, when I’m already dealing with the disease and it’s symptoms as it is. I’m living with an unpredictable illness that has NO cure to this day.

So no, I’m not going to jump up and down every time there is ‘breaking news’ for MS, because there is no telling if it will work for me PERSONALLY.

Now, because my reaction is polite, but not over-enthusiastic, people act like I’m a negative person, with no hope, and that I don’t even want a cure, which is so far from the truth, it’s ridiculous.

For all of those people out there, that think that since myself, or someone else with MS, doesn’t ‘react’ a certain way… or a way that the person expected, doesn’t mean we are negative people… or that we are Debbie-downers, etc.

That’s not it all… We are just people that have had so much hope in the past, and have tried all these new things, with no positive outcome. It’s called self-preservation… not negativity.

It could also be the fact that you’re probably the 10th person that has shared information with me, and you’re expecting me to scream and be happy and go try it out right away. Again, I’m not trying to be rude, I just get annoyed with it sometimes.

It’s kind of of like hearing Sheldon from Big Bang Theory say, “Did you know…” 50 times back to back.

Anyways, that’s all for now. I just had to vent a little about that, cause it recently came up in conversation. So for those of you who aren’t full of joy, hope, etc.? Don’t feel alone; because I know that you aren’t TRYING to be negative, you are just getting by one day at a time.

xoxo

Ashley Ringstaff

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***Originally Published on MultipleSclerosis.net***