Anger & MS

I’ve had many people ask me how I’m not bitter, mean & just flat out angry, with everything that I go through having Multiple Sclerosis. The truth? Just because those things don’t classify who I am as a person, doesn’t mean that I don’t have to deal with those emotions at times.

One of the things that I let people with MS know, especially the newly diagnosed, is that whatever you’re feeling, it’s okay. No one has the right to tell you how to ‘feel’. If we could control our emotions that easily, things would be a lot different in the world, that’s for sure.

I try to be a positive person, someone that can encourage others, but I’m also honest with how I feel with my MS. I’m not ALWAYS happy, I’m not ALWAYS positive, and that’s okay. I’ve accepted that. I wouldn’t be human if I was always Miss Happy-Go-Lucky, so to say.

A lot of people who don’t have MS, think that the anger and depression and all the ‘negative’ emotions, are only in the beginning, but that’s not true, for me at least. Until recently, I had NEVER had an MRI come back with NO NEW ACTIVITY. Every time I got in that horrible machine, I was hopeful that this time, it would be different. And for 4-years, that hope that things would be better, didn’t happen for me.

I was angry and sad and just felt hopeless, every time those MRI reports came back that had new/worsening lesions. Here I was, doing everything I was supposed to do with taking my DMT’s, trying to do my best to not aggravate my MS… with no luck. It was like I was doing everything by the book, and never getting a break.

I don’t want to sit here and tell you some of the things I did, thought, etc. when I reacted to the results, because it’s just ‘not me’. It was like, an out of body experience with the anger and sadness that overwhelmed me. Did I get past that? Yes, I did…. But it wasn’t easy. It didn’t always happen as quickly as I would have hoped.

I still deal with the anger, but it’s not an overwhelming type of anger. I get in my ‘moods’ where I’m just sitting here like, what did I do to deserve this? Haven’t I been through enough in my life? Don’t my kids deserve a mom that can do EVERYTHING for them and with them? Doesn’t my husband deserve the wife that he married?

I’m sitting here writing this, and I’m getting worked up about it. Because I’ve had a lot of time to think about all of this, and it’s depressing. Why am I writing this? Why am I showing people that have come to me for help that I need help sometimes too? That I’m not completely ‘put together’? I’ll tell you why, because I’m not a liar. That’s the cold hard truth.

I can sit here and tell you and so many others, that it’s going to be okay. And it will be okay, with time. There is no time frame on how long it will take to for things to level out, for things to calm down. But I can tell you that you aren’t alone. I can tell you that there are so many people out there who have your back. Complete strangers… that will be there for you, no questions asked.

I know that this isn’t my ‘normal’ type of writing. I try to stay positive… try to tell it like it is, with a sense of humor included. But there are some things that you just can’t sugar coat. I know I’ve talked about “Dealing with MS Diagnosis” before, but I didn’t sit there and elaborate on the negative emotions. Because who wants to do that?

What I have realized is that the anger, the bitterness, the sadness, and all of that… it has made me stronger. By feeling those emotions, dealing with them and getting better despite them, makes me stronger in the long run.

One thing that bothers me, about the representation of MS patients, coming from ads, graphics, whatever kind of marketing going on, is that there is always this positive person portrayed. This perfectly happy human being that doesn’t seem to be phased by anything. When, that’s a lie. I’m not saying it’s wrong to portray happiness & positivity. But with that, there is so much more going on. Are those people just putting on their ‘mask’ for the public eye? Is the happiness real?

Throughout all of this, I am happy with where I am. Yes, I have Multiple Sclerosis. Yes, I’ve felt things and done things that I wouldn’t have normally done. But all of that together, makes me who I am. I try to not ‘show it’ when I’m angry, depressed, sad… but I don’t know how well I’m hiding it. I don’t think I should have to hide it. Crying

Because in reality, there is no perfect, happy, positive person living with MS, that hasn’t been affected by negativity, anger, and depression.

So, what’s my point in all of this? It’s that, no matter what… you aren’t alone. Don’t let anyone tell you that you need to ‘get over it’. Don’t let something you see make you feel isolated. You have the right to feel how you feel, but I’m telling you from experience… don’t let it take over your life. Don’t let it change who you are in a bad way. Learn from it, become stronger from it, and keep fighting. Ask for help when you need it. Reach out to others when you are down, or just need to vent. Don’t keep the anger and negativity bottled up… because it will become too much at some point, and you will explode. Trust me on that.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net***

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Extremely Tired… but Can’t Sleep

This topic can come off as very confusing to some, and maybe even to you. I mean, honestly… from what people tell me, if I’m exhausted, tired, fatigued, I just need to sleep more. Simple solution, right?… WRONG!

Well, not for me anyways. I can be completely exhausted where I can’t do a lot, I have no energy to even move all day, and when it’s finally time for bed, I will lay there hoping I will get some much needed sleep. But sometimes, that’s not the case.

It seems that since I was so tired/fatigued during the day, that once I’m laying down ready to go to sleep, my brain realizes I’m relaxed and decides to go 100 miles a minute, about random things, about things I forgot to do, etc. This frustration of my brain not shutting up can last for 10 minutes, 30 minutes, to hours. It just depends on everything that’s going on.

It’s kind of like my body & mind are playing tricks on me… I’m not ‘supposed’ to take naps during the day, because for one… I usually have things to do that day, and for two I know that if I take a nap during the day, it will be even harder for me to go to sleep at night.

But that doesn’t stop my body & mind from pretty much forcing me to shut my eyes for a nap in the middle of the day. Now when I want it all to shut down so I can sleep, it rebels it seems like. Does this happen to any of you? I don’t even have the T.V. on when I’m ready to go to sleep at night, so it’s not that keeping me awake. I will just lie down, doing nothing in then complete darkness for a large amount of time, occasionally.

I know that they say not to play with your phone/iPad when you’re going to bed. But I’ve found that if I read, it helps me fall asleep. So It’s kind of like it’s taking up my brain power, so my brain can’t wonder about a million things, and just focus on the story, and then once my brain is focused, I can feel the affects of sleep coming on.

What is the recommended number of hours sleep adults should have? 8 hours? I think that’s it, but who knows. I know that I usually get 8 hours of sleep, and at times, even more. Especially now with it being summer, and the kids are out of school, I’m sleeping in a bit more, but not TOO late.

I’m just listening to my body, and doing what it needs to do, but in this article I’m venting about it, because I don’t think ‘outsiders’ really understand how we’re affected by fatigue, 24/7, even with medication to help with fatigue.

The reason I’m writing this? Honestly, because I’ve wanted to for a while, but the reason I’m writing it at this moment, is because I’m trying to keep myself… AWAKE! And it’s like 3pm! I got 10 hours of sleep last night… WHY?! I just wanted to have energy… and not be so exhausted that just walking, or laundry, or getting a drink is exhausting.

I know some people can’t understand why I’m tired, when I stay at home with the kids, do work online, etc. It’s because I’m doing all of that on top of doing chores around the house… and adding MS fatigue into the mix just makes is 10 times harder. There was a really good article posted on MultipleSclerosis.net about MS fatigue… I loved the way it was explained, etc. You should totally check it out, but I just kind of wanted to vent my frustrations about MS and my fatigue/insomnia issues. Read: Fatigue & MS: It’s Different.

Until next time,

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

When I’m Down

Are there ever times where you are just in a mood? Or maybe what someone would consider a “funk”? I seem to go through certain ‘episodes’ where I’m just in a mood, but there isn’t really anything that put me in that mood. Nothing caused it; I’m just not myself.

I’m not meaning that I’m in an angry mood, or upset and voicing it. More like, I’m just quiet, not ‘myself’, and I seem sad, but I’m not. It’s really hard to explain, but I never really had these ‘moments’ until a while after I was diagnosed.

I sometimes don’t even realize that I’m acting different, or that it’s noticeable that my mood has changed. It almost feels like sometimes I’m on the outside looking in, watching what is going on, but not understanding why.

So if you have gone through this, you aren’t alone, trust me. I found a quote that I really like. “That feeling when you’re not necessarily sad, but you just feel really empty.” – Unknown

I guess describing the feeling, as being ‘empty’, is the best way to explain it. Because there just isn’t any big emotion that is winning out on how you’re feeling.

When I get like this or if I have someone point this out to me, it will take me some time to digest what is going on… and try to figure out how to get back to ‘normal’… or whatever normal might be.

I tend to write, like I’m doing now. Trying to vent out my frustration on the situation. Because I have no control over why I’m feeling this way. I am not trying to push anyone away or ignore him or her. I guess when you go through so much like we do, living with Multiple Sclerosis, your brain just needs a time-out. Am I making any sense? If you haven’t dealt with this before, kudos to you! You don’t wanna go through this feeling, trust me.

So what do I do to get rid of the mood/feeling? Well besides writing, I listen to music… I do things to keep my brain busy. I talk to others in the MS Community, like on MSWorld.

There is also that saying, “Laughter is the BEST medicine,” well that’s true in my case. I will sit down and start looking online for something to make me laugh. Usually that ends up with me watching America’s Funniest Home Videos, Ridiculousness, or just searching on YouTube for funny animals, funny kids, etc. Believe it or not, it works.

It’s not something that helps immediately and magically… if only, right? But it slowly but surely starts to change my attitude… my mood, how active I am in my communication and more. Once I’ve started the cycle of getting my mind ‘back in the game’… I try to find things that will keep me active and not falling back in to my lonely/silent mood.

I love playing video games, for one, so that keeps me busy. I volunteer and enjoy doing Patient Advocacy. You would be surprised by what difference you can make in the MS Community, by just sharing your story, thoughts, opinion, etc.

So I guess what it all boils down to, is to know that you aren’t alone in how you are feeling. There is nothing wrong with how you are feeling. Just because you are in a mood, or your brain has just had too much and it needs a breather, doesn’t mean that it will be like that permanently.

I have gone and talked to my Primary Care in the past, as well as my neurologist, to let them know about my moods. I want them to be in the ‘know’ about what’s going on, just in case it gets to be too much, we can handle the situation with therapy and/or medication.

Letting others know that you are having issues emotionally or you aren’t feeling yourself, etc. is not a sign of weakness, or that there is something ‘wrong’ with you. It takes strength to admit these things out loud, not just to others, but acknowledging it on your own takes a lot of strength and courage.

I’m not on medication on a daily basis for these issues, but I do have something if it’s ever needed, or if I get way too overwhelmed.

Anyways, that’s enough from me right now. Everyone take care and know that you aren’t alone and you never will be.

“You are so brave and quiet I forget you are suffering.” – Ernest Hemingway

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Before vs. After

Have you ever thought or wondered if you will ever go back to ‘normal’? Whether it is after a MS Flare/Exacerbation, or just your life after your diagnosis? Wondering if you will ever be what you were before all of this chaos started? I seem to think about that issue a lot. I tend to sit here and compare or reflect on how I was before my diagnosis to how I am now.

I have been asked what I would be doing now, had I not been diagnosed. And I honestly don’t know. It’s not a question that I can answer easily. I had a job interview with the local county jail coming up, and then I had a really bad exacerbation and was eventually diagnosed with Multiple Sclerosis. So I can’t honestly answer what I would be doing. Would I have continued my education to be a Juvenile Probation Officer? Would my relationships with my family and friends be different? I just don’t know.

While I’m sitting here wanting/needing a Cure for Multiple Sclerosis, it’s kind of scary to think about what my life WOULD be life if I didn’t live with Multiple Sclerosis everyday. Would it be easier? Yes, it would be, obviously. But I’m not talking about my health and/or Quality of Life… I’m talking about life as a whole.

After being diagnosed with MS initially, all I wanted was my life back. I wanted to continue on the path that I was on, and have no changes to it. But now, I’ve matured, I’ve grown as a person, I’ve changed… and not just in my health, but I’ve changed who I am as a person.

I don’t have the same hobbies, day-to-day life, same circle of friends, etc. While yes, it stunk that I did lose friendships after being diagnosed, I’m thankful for the friendships I’ve made since then. I met my best friend after I was diagnosed; it’s because of my MS that I met her, because she has MS too. To think about not having her or any of the other friends I’ve made in my life, is scary and it’s not something I want. Most of my new friendships, including my friendship with my Best Friend, I made because of Multiple Sclerosis. I found them on MSWorld.org – and I found comfort and life long friendships.

One of the biggest questions we ask ourselves, is are we going to go back to normal after an attack. It’s possible yes, but it doesn’t always happen for people with Multiple Sclerosis. I’m weaker than I used to be, physically. It’s due to the fact that my MS has held me back from doing everything that I used to do, but also because the attacks I’ve had in the past have affected certain areas of my body as well.

We all want to be healthy, and not be on meds, and not be in pain… to not have to suffer the emotional tollthat MS can bring. Who would want to go through everything that we do? I wouldn’t wish this on my worst enemy.

I wouldn’t have had the opportunity to do what I have grown to love, and that’s being apart of the MS Community and really helping others, communicating, trying to make a difference. Considering I had no idea what MS was before I was diagnosed, I know I wouldn’t be here today had I not been diagnosed.

If you look at the before vs. after for me personally, you will see that I’m the same person over all. I just have limitations that I have to compensate for and/or deal with. But I’ve grown from the experience… I’m stronger, or at least I think I am. What I thought was hard/difficult to deal with before I was diagnosed, is not even a big deal now.

As time has gone by since I was diagnosed, which was in 2010… I’ve sort of stopped wondering if I will ever be back to what I was before I was diagnosed. The answer for me, is no. I might get back to how I was physically, but mentally I wouldn’t be the same. I wouldn’t want to go back and undo everything that I’ve learned and how I’ve grown over time.

Have there been hardships along the way? That’s a big fat yes… but no one ever said that life was easy. I know that I’m probably portraying a lot of mixed emotions in this article, but that’s because I have mixed emotions about the topic. Not wanting to live with Multiple Sclerosis, ever, but not wanting to rid myself of what I’ve gained in the journey since my diagnosis. Does that make sense?

I don’t know if others feel this way, so I don’t know if I’m alone in this, but I just had to put it out there. WHEN (not if) there is a Cure for Multiple Sclerosis, I know I can’t be who I was before, and I don’t want to be. But I will move on with what I’ve gained in my journey, and no longer be an MS fighter, but an MS survivor.

“What matters most is how well you walk through the fire.” – Charles Bukowski

 xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**