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***

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***

Avoiding Sick People

It’s that time of year, where all of the viruses and infections are going around. Trust me, I just experienced it with my oldest son having strep, and I think he shared. Usually I try to avoid people that are sick, but that’s obviously not an option when your child, or someone you live with is sick.

I’ve been told that I’ve said rude things to people, without really meaning to. When someone says they are sick, while we’re all hanging out, I’m like, “Oh no. You gotta keep a 15-foot radius away from me. Stay away from my imaginary bubble!” Someone got his or her feelings hurt when I said this, and I obviously was trying to make it funny, so I wasn’t being rude, but I guess it came off rude.

So I’m going to try and explain on the WHY I won’t willingly go around sick people, as I’m sure others with autoimmune illnesses are the same way. Basically, with MS, our immune system is mistaking our nerves as bad bacteria, and attacking. So, naturally, I don’t want to have my immune system kick up to fight a virus/infection, cause that’s when it starts misfiring.

Basically, it’s nothing against you personally, if you’re sick. I’m just trying to make sure that I don’t end up in a infusion clinic for 3-days straight on IV Steroids, because let me tell you, some people think it’s relaxing and the atmosphere can be relaxing, but why you’re there in the first place is NOT relaxing. You had to get an MRI to see if you were in a flare, most likely, and those are in no way RELAXING. And then there is the AWFUL taste you get in your mouth, while getting IV Steroids. Which by the way, if you ever have to get an infusion of steroids again, get a big bag of jolly ranchers, or something like that. It helps with the nasty taste in your mouth.

Now let me tell you, some people things I’m overly cautious about avoiding sick people, like I have a time-frame of when I will go around them, depending on when they started meds, the last time they had a fever, etc. I’m not taking any chances. I’ve gotten to the point that I don’t really care if people things I’m a germaphobe, or crazy. I’m doing what I feel I need to do, so that I don’t end up laid up sick, or in an MRI machine, or getting IV steroids.

Also, from experience, if someone is sick with a virus/infection, and I somehow get sick because I was around them, shared a drink, etc. I will not only end up with what they had, but 10 times worse. Not even exaggerating here, it happened last year, around this time actually. My husband is a firefighter/EMT… and they are obviously exposed to illnesses. Even though they try there hardest to kill all the germs they come into contact with, it’s not always 100%. So there was something going around the department, and James, my husband, ended up getting it. Now most of you know, you can have the virus/infection for a little bit without showing signs. So I contracted it, before James started having symptoms.

Needless to say, I ended up with Pneumonia, and they were telling me that I might have to be hospitalized. Yeah, no thanks, I’ll pass. This doesn’t even begin to cover the increase in symptoms that can be experienced when your immune system is fighting an infection/bacteria.

Lets not forget that if you’re getting an infusion of Tysabri, like myself, I can’t get my infusion if I’m fighting an infection. So then there is all of that nonsense that can be affected as well. I know for most, if you get sick, you go to the doctor, rest take meds, and then you’re better. That’s not how it works for me.

Something else that I also want to talk about, that is still on the topic… and can be used in different obstacles of MS as well. So let me just answer the question that I get asked, when people see how crazy I am about not getting sick…. “No, I am not overreacting. The things I am trying to avoid are not being blown out of proportion.”

Obviously, there are people out there that think I’m overreacting to certain situations, or making things to seem worse than they really are. But until you see it first hand, you will NOT understand. My father-in-law that lives with us didn’t fully understand it until he saw what happened first hand. Now, if someone at his work is sick, he tells him or her to keep their distance from him.

Now with that being said, I won’t have the same ‘reaction’ to every situation. It all depends on what illness is going around, etc. It could just keep me in bed for a certain amount of time, or it could cause a flare up. There is no telling what can happen, and the unknown is one of the scariest parts for me when dealing with MS.

All right, that’s all for now. Since I’m currently not feeling good, and I think my son shared his strep throat with me…. Do you see why this topic came up? I know I’ve written about it before in ‘Tis’ the Season’, but I wanted to brush up on the topic.

Until next time!

xoxo

Ashley Ringstaff

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

Illness is NOT a Choice

Let me start this off by saying that I’m a bit frustrated…. Because I’ve had some people make comments here and there that imply that I ASKED to get multiple sclerosis. First and foremost, there is NO asking for multiple sclerosis. I don’t know anyone that would ask for it, or any other chronic illness. Who in their right mind would do that, let alone IMPLY that we ASKED for it.

It’s for those small-minded people obviously. It’s rude, and no one should EVER insinuate that we asked for this. I didn’t ask to take medications everyday. I didn’t ask to get infusions every four-weeks. I didn’t ask my immune system to attack my Spinal Cord/Brain.

It seems to be that these small-minded people only like to look at things from a certain point of view. That point of view being, having ‘benefits’ with a chronic illness. Now, let me just say that there are NO BENEFITS, except for meeting other patients that are AMAZING people. But to some people, they see certain benefits in having a chronic illness. What is it they see??

Well first off, they see that some are on disability and CANNOT work. Now let me tell you that this is a CAN’T and not a WON’T. Another ‘benefit’ being that we get medications, such-as muscle relaxers, etc. They also see that we take naps, or sleep a lot… because hey, who doesn’t like napping. But it’s the FATIGUE that we’re talking about here. They aren’t thinking about what’s CAUSING us to sleep more often, but just that we ARE sleeping.

It’s sort of like a ‘cause and effect’ theory. Except, these people are BLIND to the CAUSE and are only seeing the EFFECT, no matter how much you try and tell/show them otherwise. Trust me, I’ve tried to tell/show these people that it’s not something that I WANT to have, but they don’t see it that way. It’s almost like they are treating me like I’m ‘faking it’ to do what I want, when I want to. Which couldn’t be farther from the truth.

So, if you know of someone that is small-minded and has view of what I’ve listed about. Let them know this….

While you might see us sleeping a lot, or napping a lot… what you didn’t see is that the pain kept us up all night, with no relief in sight. While you might see us taking medications to help ease the symptoms, what you aren’t seeing is the side-effects of these medications… you also don’t see that these medications don’t make the symptom go away 100%. While you might see us using a handicapped-parking placard and compare it to a ‘valet’… what you didn’t see is us struggling to even get out of the house to get where we are going.

I could probably continue that list for a LONG time… but I think I’ve painted a good picture thus far.

So if you want to keep going through difference scenarios, it all leads down to this…

While you see all these so called ‘benefits’ … what you DIDN’T see is the COST that comes with all of it. So instead of trying to just summarize it all, I want you to take a look at some information I found from Rocky Mountain MS Center Website.

MS has a significant emotional and physical impact on the quality of life of those who have it as well as their families. Seventy percent of people living with MS have a level of impairment from the disease that interferes with at least one essential daily task. After 10 years of disease, seventy percent of people with MS will not be working outside the home. After 15 years, fifty percent will require at least a cane to walk. Thirty percent will eventually need to use a wheelchair.

Because individuals are diagnosed and become symptomatic during their most productive years, the financial cost for the individual and for society can be staggering. Direct costs are high. The medications used to treat MS cost between $20,000 and $30,000 per year and the cost for treatment of a disease flare-up is estimated at $12,870. MS also has high indirect costs— from lost wages to under or unemployment. The direct and indirect costs of MS are now estimated at $57,500 per patient per year. The total lifetime costs associated with MS for an individual is estimated at $2.2 million.

Although the cost of treating MS is great, the cost of not treating MS is probably greater. An estimated seventeen point two percent of Coloradans do not have health insurance. It is also estimated that, nationally, one out of three adults without medical insurance has a chronic disease and many of them do not receive regular medical care. The Rocky Mountain MS Center estimates that at least twenty percent of the MS population in Colorado receives medical care through the Medicaid system and have very limited access to MS specialty care. Individuals who do not receive specialty care are less likely to be on a disease modifying therapy and are more likely to experience more serious levels of disability.”1

On that note I’m going to end this article but I will most likely touch base on the subject in the future.

xoxo

Ashley Ringstaff

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

Pains of Being a Female

So let me start this out by saying, this is a post for the ladies that have MS… So you have been forewarned. It’s not ‘ew-gross’ or anything, just something for the ladies to relate to.

Now, let me just share on how this all came about, so you can get an idea of where my mind set was coming from, and why I’m writing this now. My best friend has MS, so just a heads up. We always share how we’re feeling, because in some strange way, we seem to go through the same thing at the same time. She is in Canada and I’m in Texas, so it’s not likely we have the same environment around us, etc.

But yesterday was a Sunday, and my husband and kids wanted to go over to a friend’s house to hang out for a bit. So I was like all right, let me get ready. As I go in my room to get ‘ready’… I’m thinking to myself, it’s kinda chilly outside, I should wear a sweatshirt/hoodie. Mind you, if it’s in the low-70’s are below, that’s considered cold for me, don’t judge. So as I was getting my hoodie, I thought to myself, “Crap, we’re going somewhere, that means I have to put a bra on.” Then a light bulb went off, and it’s like HEY! I am wearing a hoodie over my shirt, I don’t HAVE to wear a bra, if I really don’t want to. Is that weird? Oh well, I don’t care.

This isn’t me just NOT wanting to wear a bra, as a form of rebellion or just being lazy. The reason is because if I wear constricting things, it causes spasms/tightness and the horrible MS Hug. So I avoid wearing constricting material, like a bra, because of that… especially for a long period of time. Let me also say that the house we were going to, was out in the middle of nowhere, so no biggie.

I guess my secret is now out on why I love cooler weather… lol Well, I mean kinda obvious that I don’t like the EXTREME Texas Heat that we have during the summer for obvious reasons, but you get my drift.

Once I get home from work, one of the first things I do is take off my bra. If you have dealt with what I’m explaining, then you known that this is not an exaggeration. I repeat, THIS IS NOT AN EXAGGERATION. I have a very high pain tolerance, or so I’ve been told, and the MS Hug can me make immobile and almost in tears at times, same as muscle tightness/spasms. This is not your normal spasm either. It feels like my muscles are screaming at me, asking me why I am mistreating them! Am I making any sense right now? Am I the only one that deals with this? Well besides my bestie… but that doesn’t’ count.

Let me explain to you that because of all the stress I put on my back/shoulders, I ended up being referred to a pain specialist, and had to have a nerve block done on my shoulder area, to have some sort of pain relief. It’s obviously just a temporary relief, not permanent, but at least I get some sort of relief.

So basically, the topic of this article, is about the pains of being a female… we’ve all heard about it before, but can you imagine the ‘pains of being a female’ and having MS on top of that… Wearing cute clothes, having to wear dresses, which means heels… That’s just not something I can do. And it’s not just because of the fact that I literally don’t own a dress or heels, it’s because I will fall on my face if I attempt to walk in heels. Face meet floor, end of story, if I wear heels.

Most of my wardrobe is jeans, t-shirts, shorts, flip-flops and tennis shoes, and boots. Of course it’s easier just to throw those things on, then get dressed up, but it is also because I literally can’t deal with the ‘pains’ of wearing heels, having my hair and make-up done on point all the time, etc. This list could go on and on and on, not even joking.

Why do I wear jeans/yoga pants a lot? Their comfy, that’s for sure… but also, it’s not easy to shave my legs. My hand doesn’t like to steadily hold a razor for that long, all the time. Is that TMI? Well, sorry, it’s the truth. I know that men have their own issues that they have to deal with, and I’m not saying female issues are more of pain, or anything like that. I’m just sharing some of the struggles that I have to live with everyday. This isn’t even all of them, this is barely even touching on all the topics that can be covered, but I’m gonna stop here, because it’s been a long day and I just need some rest time.

Until next time!

xoxo

Ashley Ringstaff

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

It Must Be Nice

Have you ever heard someone tell you, “It must be nice,” when speaking about your multiple sclerosis? Well, if you haven’t, then you’re very lucky! However, if you have had someone say the words ‘nice’ and Multiple sclerosis in the same sentence, then I know how you feel. When someone first said that to me, I didn’t have a response. I just sat there, with my jaw almost touching the table, from being in shock and wondering if I heard the person correctly.

The most recent time I was told, “it must be nice,” that I have MS, was in regards to my two-hour long infusion of Tysabri. I mean, I’m sitting there for two hours in an infusion center, with an IV in my hand/arm getting pumped full of medicine. What is so nice about that? Well, apparently… the reason they stated that is because I get to sit there for two hours in a recliner instead of having to work.

Now first off, when I’m getting my infusion, I’m still working! But yeah, apparently having to getting medicated by an IV on a monthly basis is something to look forward to? I guess I never got the memo…

Another time I was told this… was when I had to go to the ER for pain meds because my MS caused a migraine that made me dizzy and nauseated. I didn’t know being ‘dizzy and nauseated’ could be considered nice but apparently, they were speaking out about the fact that I got shot up with pain meds. Well let me tell you, having migraines severe enough to take me to the ER is in NO WAY nice, and the bill you get from the ER is very far from being what I would consider nice. Instead of reacting the way I wanted to, I walked away, because I didn’t want to go to jail.

Are you tired of the word nice yet? When it comes to the phrasing I’m writing about, yes I am very tired of hearing it.

I know I’ve discussed a list of “MS & Things People Should NOT say” but I wanted to really touch base on this particular phrase because I’ve been hearing it frequently over the years, and for some reason, I’ve been hearing it a lot recently.

One more time I wanted to talk about, in regards to MS and fatigue. You know what I’m talking about most likely, because you probably deal with it on a regular basis. So when I said that I have to take fatigue medicine in order to not sleep all day, even though I slept throughout the night. I was told… you guessed it, “it must be nice.” But this one is a bit more complex.

I was told it must be nice to have an excuse to sleep all day if I wanted to. But also that I had the ‘option’ to take something to give me energy so that I could get things done throughout the day, and not have to deal with being worn out, like ‘normal’ people. Are you sitting here dumbfounded yet? Do people have NO commonsense when it comes to being courteous???

The sad part is that when these certain naïve people make such rude comments, there is no positive outcome if you react to it. Because they are never going to fully understand what we go through on a daily basis. But for those naïve people that might be reading this, or told to read this, here is a little run down.

Having an incurable chronic illness is no way nice, fun, an excuse, cool, etc. Having to get a two-hour long infusion, that has a possibility of causing PML with me being JC Virus Positive, is in NO WAY fun. Getting an MRI is not ‘nap time’ and is not comfortable, and is not fun at all.

Being so tired that it makes you miserable, and to the point that you miss out on things you really want to do is not fun/nice. Having to sit in the hospital to get your pain under control, is not nice, neither is paying for it.

Oh and one more thing that I’ve been told ‘it must be nice’ about. Having a Handicap Parking Placard is not nice. Do you know what kind of looks I get, being a 28 year old that “looks fine” using a handicap space?

So for those people that are small minded and say hurtful things to boost their ego… just stop saying things that are hurtful. Don’t ever imply that someone with a chronic illness is using it as an excuse, is lazy, or is ‘taking advantage’ of it and has it ‘easy.

Anyways, I just needed to vent a bit, and also let others know that they aren’t alone when people say rude/senseless things. Until next time!

xoxo

Ashley Ringstaff

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

Marriage, Relationships & MS

Marriage and/or relationships while living with MS is something I hear about often, so I wanted to touch base on it a bit. Even though I’m in my late 20’s, I have been married since I was 18. I also have friends that have MS that are in the ‘dating scene’ as well, so I’m going to share as much as I possibly can with everyone.

I think the first and most obvious thing to say is, that MS and marriage/relationships is not easy. I’m not saying that they’re easy in the first place, but if you throw a chronic illness, like MS, into the mix, it can cause complications and be very hard to deal with.

Like every relationship, there needs to be of course love, support, respect and trust, among many other things as well. I’ve had people come to me for support when their relationship ends due to MS specifically. Which, in my opinion, is just wrong. It really brings out your significant others true colors. If someone decides not to be with you because of MS and it’s complications, then it shows how weak they are and you are better off. However, that’s easier to say it than it is actually dealing with it.

I’ve had many people/friends comment about my marriage to my husband, saying how we’re so strong and committed and they want a relationship like us. I do appreciate the compliments, but let me just say that it is in NO WAY easy, whatsoever.

Just because people see us as this strong, loving couple… that doesn’t mean that we don’t deal with our own issues. We have overcome them, yes, but you both have to have the WANT to make it work.

My husband literally just asked me what I was doing, and I told him I was writing an article about marriage and MS, and how some people’s significant others leave them because of it. His response (edited for language), “If I can get married when I’m 20, and I’m now 31 and can make it work through everything we’ve been through, then they are just sissies.” Now, he didn’t use the word sissies, but you get the idea.

This also seems to be a very big topic at the moment, from a viral video that went out of a surprise anniversary present from husband to wife, and the wife has MS. (Watch it here & have the tissues ready.)

Okay, so back to the subject at hand… coming from someone who got married young, had kids young, a lot of people are surprised that my husband and I will be celebrating 11 years of marriage this December… but why is that so shocking? You have to both want to make it work. I’m not saying it’s all sunshine and roses having MS and dealing with that as a couple, but you have to work through the bad.

The person in the relationship living with MS, didn’t ask for that. They didn’t plan on that to happen… we are already punished enough by our own bodies from the disease; we don’t need and really at times can’t handle the disease causing the end of a relationship.

So if you’re reading this, and you are in a relationship with someone that has MS, please be patient, especially if they are newly diagnosed. Because when I was first diagnosed, I ended up pushing my husband away because I didn’t want him to have to deal with my MS too. We’re not trying to be mean, or hurtful, but for me, I was trying to give him the opportunity to not have to deal with my diagnosis. He didn’t know why I was pushing him away at first, but he finally confronted me about it, and we had a talk about it. I also spoke to others living with MS about it as well.

The bottom line is, if you’re going to be in a relationship with someone with MS, you have to realize what you’re getting into and what all it means. So, if you’re just starting to date someone, when is the right time to tell him or her you have MS? That’s a hard one, and I think it varies from person to person and situation to situation.

If I was in the ‘dating scene’, I don’t think it would be something that I would come out and say right off the bat. That’s not because I’m embarrassed about my disease, or that I’m trying to lie about it. I just think that I would wait past the 1st date for one. I mean, the date could be horrible and you could just not be compatible, so why even bring up the topic and try and explain it in the first place?

I don’t think that there is a ‘timeline’ in which you should have to tell someone you’re dating that you have MS… I think it should be brought up when the time calls for it, or you feel that it’s the right time to mention in. Don’t let your MS define you as a person completely… you are still YOU, you’re just Mighty Strong as well.

Now, to touch base on intimacy and MS… I will also admit that this has caused issues in my marriage. Now, I’m not trying to cast a bad light on my husband, or our marriage, I’m just telling you the flat out truth. I’m not saying it caused a HUGE argument, but after my diagnosis and certain symptoms I deal with, it did cause issues. I tried to brush it off, and just try and work through it, but then I realized that sexual dysfunction is an actual symptom of MS. However, that wasn’t the issue… (TMI sorry.)

The issue was mainly my fatigue. That sounds so cliché, but it seemed that every time I lay in bed, once my head hit the pillow, I was out for the count, snoring and all. There was also the issue of pain/numbness/spasms, which caused issues as well. At first, I was embarrassed and didn’t know how to really talk to my husband about it, but eventually we had a sit down chat about it, so that he could really understand where I was coming from, and that it wasn’t me trying to be distant on purpose.

I think when it comes to marriage/relationships and MS it all varies between relationships. What I’ve been through, and how we’ve overcome it, doesn’t necessarily mean that it would work for others. I guess my best advice would be to communicate. Maybe even write it down, so that you don’t forget what you wanted to say, or anything like that.

Just know that you aren’t alone in any of your struggles, especially in regards to marriage/relationships and MS.

xoxo

Ashley Ringstaff

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

Stress/Anxiety & MS

Now, I don’t know about everyone else… but prior to my diagnosis, I didn’t feel nearly as ‘overwhelmed’ as I do now. Life in general is stressful, of course… family, friends, work… it all can lead to stress at some point. So what’s the big difference with how ‘normal people’ are stressed out… and when an MS patient is stressed out/has anxiety? Well, I’m going to share my 2 cents on that.

So, let me just say that I don’t deal with heavy stress/anxiety 24/7, but at times it can feel like I do. Now, what the big difference in being stressed having a chronic illness, like MS…. And being stressed out while being ‘healthy’, so to say.

When I was first diagnosed, I was told that there are certain ‘triggers’ for MS that can make your MS flare-upand/or make your symptoms worse. Those three triggers I was told were: Extreme Heat, Extreme Cold, and Extreme Stress… When I first heard this, I was like “Great… I live in Central Texas and I’m a mother of two boys…” Now I said that in a joking matter, because I didn’t fully understand just how much stress could affect my symptoms, etc. Click here for a list of triggers. They are different from what I stated, but wanted to share. 

What I’ve noticed is that when I deal with ‘extreme heat’ it also causes ‘extreme stress’ for me, so I’m dealing with two of the ‘triggers’ at once. I know there are things out there to help with stress/anxiety and I have been prescribed medication to take if needed, but I’m already on SO MUCH medicine, why would I want to take MORE?

So, back to what I was saying… I’m thinking to myself, okay I need to avoid those extremes, obviously… but I didn’t know how much more ‘sensitive’ I would be to those factors as well. It seems that now a days, I become stressed easily, compared to like 10 years ago… I get that it comes with life, but it’s hard to explain. I feel like I have NO CONTROL over my stress/anxiety at times, and when I get like that, it’s hard to think clearly to calm myself down.

I have learned to not let myself get as riled up as easily as I used to. Also, if there is drama going on around me, or with friends… I will be there to listen, but I don’t involve myself into the situation, because I just can’t deal. I feel bad when people call/text me for help, or advice, and I don’t respond to them. I’m not TRYING to be rude, it’s just that, I probably can’t ‘deal’ with that kind of stress/anxiety at the moment. I’m not trying to distance myself from people, or not supportive, but I’ve got to think about my health first and foremost. If that makes me selfish, then oh well.

Now, what do I mean by saying, “I become stressed/anxious a lot easier than I used to.” Let me give you an example… I don’t like grocery shopping, let me just get that out there… I despise it. But, it was something that I obviously HAVE to do. Before I was diagnosed, it was just this annoying task that I had to do, that also put a dent in my bank account, but I dealt with it with no problem. Now though? Now, I really have to prepare myself to make those trips. The grocery store isn’t even far from me either. But I try and plan on going when I know it’s not going to be too busy, when it’s not too hot, and where I know I can get in and out with (hopefully) no issues. Why do you ask? Because when I put myself in stressful situations, I notice that my symptoms get slightly worse. It’s not noticeable to others most of the time, but it’s noticeable to me. Have I mentioned how much I LOVE online shopping now too? I get it shipped to me and I don’t have to ‘deal’ with outside factors… if that makes me lazy, oh well.

Now when it comes to just stressful situations, like an altercation with a friend/family member, or something like that, I wouldn’t bite my tongue at all, that’s just not who I am. HOWEVER, so that I don’t get stressed out and have an anxiety attack, that would lead to me having a migraine, vision issues or spasticity (because that’s usually the three things that get worse first), I usually just become silent. No, I’m not trying to be ‘rude’ by going silent, and I’m paying attention to what’s going on, I just have found that not responding to the situation immediately, has helped in my stress/anxiety levels.

Some people have said, “Oh, got nothing to say? You just going to ignore me?” No, that’s not it at all. For one, anyone that KNOWS me knows that I have a temper and I’m not afraid to speak my mind, but I’m trying to refrain from making everything else worse symptoms wise, and the situation as well.

While I was looking up information about MS and Stress, I found this MS Stress Test from WebMD, answered the questions, and I wanted to share some of the feedback I received, Living with a chronic illness, especially one with unpredictable symptoms, can be a source of stress. And for many people with MS, stress makes symptoms worse. That, in turn, can make navigating life’s normal ups and downs more challenging — and more stressful. Keep in mind that the symptoms of stress and MS can be very similar, too. So what you’re feeling might be a reaction to stress — and not your illness getting worse.” 

Research has even been conducted in regards to stress & MS. You can read more about one study here. There are of course multiple studies done on the topic, but I didn’t want to list them all in this article.

There is also a simplified explanation for stress & anxiety on MultupleSclerosis.net, along with treatments that are available… Read more here: Treatment of anxiety, mood swings, and other emotional problems.

Another thing that I have found that helps me is exercise. I’m not talking about hardcore workouts either. It could just be a simple walk, when able, and other small things. Anyways, I could probably go on and on about this subject, but I’m going to stop here for now, and will most likely revisit the topic in the future.

xoxo

Ashley Ringstaff

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

But I Want To…

I’m not sure about everyone else, but I seem to use the title of this article fairly often, or something similar to it. What am I talking about? I’m talking about being invited to do things with other people… I don’t think it’s truly understood that I do WANT to go do things I’m invited to, but there are times that I just CAN’T.

Now, I’m not talking about the ‘can’t go’ due to complicated schedule, etc. I’m talking about I physically CANNOT GO… How do I know this? Because I’ve pushed myself to go do things with others, when I know I should have just stayed in bed.

Here is an example: I was invited to a concert… floor seats, like 7th row… right smack dab in the middle of it all, for Lynyrd Skynyrd, mind you… So of course it’s going to be loud. I worked all day, came home, got ready, went to dinner, then it was time for the concert…. Usually when I get home from work, I’m exhausted as it is… so can you imagine going out afterwards, and having to work the next day as well… This is what I want people to understand when I say I CANNOT GO. I’m at a very LOUD concert, alternating between standing up and sitting down… You can’t hear the person next to you because it’s so loud… I’m having fun – don’t get me wrong on that.

Now for the embarrassing part. with the loud music, all the people, etc., What happened to me? I didn’t fall; my legs didn’t give out, even though it felt like they were going to… I KEPT FALLING ASLEEP! No I didn’t just have a typo or autocorrect moment… I seriously kept falling asleep. I kept getting these odd looks from people when they would notice, but I played it off like I just ‘had my eyes closed’ or something like that, because I mean seriously, who falls asleep in the middle of a concert? Well apparently, I do.

So what am I getting at with this rant? I wish people would understand that I do want to go do things, but I have to take in to account my ‘limits’ as I like to refer to them. For me, I’m more active in the Fall/Winter… and I’m a complete ‘Homebody’ during the summer.

I wish that others would understand that I’m not trying to back out of plans at the last minute, I’m not trying to get of things I don’t want to do… that’s not it at all. My own body is punishing me when I do ‘too much.’ I don’t need to be ‘punished’ from others on top of it.

It’s like, if I had plans to do something, and I had to back out of them, I don’t get invited anymore… and that just stinks… because I really wanted to go do this certain thing, but I just couldn’t. So instead of making my self suffer, and being a ‘Debbie downer’ the whole time, I do what’s best in the situation, and cancel, even if it’s last minute.

So to those people that think that their friends with MS just cancel at the last minute because we don’t want to go, or have other plans… this is just a reminder that we have limitations we have to keep in mind, and we’re doing what we feel is best in the situation. But please remember this: just because I cancel plans, decline invitations, etc., doesn’t meant that I don’t want to be there. I’m not making up excuses or cancelling just because… it’s none of those. I seem to be on repeat at times when I have to say, “I’m sorry I can’t make it after all, but I REALLY wanted to!” That’s not me declining politely, that is me really speaking from the heart.

I’m not trying to bring a pity party, or anything like that, whatsoever… It’s just really hard to deal with. Because once you cancel/decline a certain amount of times, it seems you stop getting invited anywhere… at least that’s how it appears to me.

I can tell you that the only people that really truly understand are the ones who physically see what I go through on a daily basis, or they have MS, or something similar.

Now, I can’t speak for everyone else… but for me, I’m looking for understanding. I’m not looking for sympathy, pity, etc. I want people to fully understand, not just say, “I get it.” Does that make sense? I mean I already feel horrible most likely, then I feel even worse for cancelling, so can we not stack any more negativity onto the stack?

Just because I’ve done it before, doesn’t mean I can do it at that certain time that I’m asked either. There are SO many things that come into play, and it’s not always just dependent on the weather… It depends on my fatigue level, pain level, cognitive function, temperature, weakness and vision… the list can go and on.

I’m on Tysabri now, but before when I was on an injection or pill, there were side effects… so I had to work around those as well.

I know that a lot of people that I’m close to will even vouch for the fact that I do well if I have people over at my house, or if I go to a good friends house, because I know that I can rest if needed. However, it all depends still, but at least I know I can relax if need be. So that’s always reassuring.

I just wish that I didn’t have so much guilt over the subject. I mean, if I can’t do something when invited to something, it’s not just me that doesn’t go most of the time, it’s my husband and kids as well. I feel like I’m holding them back from things, and I wish it wasn’t like that.

So, no… I don’t use MS as an excuse to get out of plans. Why would I want to deal with the entire blow back of it? I think we all know that I’m a very outgoing/blunt person, so if I simply don’t want to do something, I’m not going to be shy in saying so, however I will be polite about it.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Eeny, Meeny, Miney, Moe

First, let me start off by apologizing for it taking me SOOOOO entirely long to write something new! I can’t even BEGIN to tell you how hectic this summer has been for me, and it’s been crazy hot outside here in Central Texas, as I’m sure it has been for so many of you as well. Let me just put it out there, that I have enjoyed this summer, but I cannot WAIT for the kids to get back to school lol.

So, back to the title of this article, what in the world am I talking about for starters? Well, let me clarify that. I’ve had a lot of people message me and ask me if they should be on medication to help manage their MS, which medication they should be on to manage their MS, so on and so forth, you get the idea. So I thought that this would be a good topic to write about. I’m sure it’s been written about in the past, but this is a topic that I am VERY passionate about, and I wanted to give my opinion on it.

So let me start off by saying first off, that I’m not going to give you medical advice. I’m also not going to tell you what you SHOULD and SHOULD NOT do. But I can tell you what I WOULD do, in your position. Or what I have done, in my case.

I know there are many people out there who are not even taking DMD/DMT’s to manage their MS, and that is completely your/their choice. That is just not the choice that I have made for myself. As we all know, each of our disease courses is different and no two cases are the exact same. Not one medicine is going to work for every patient, so on and so forth. So for starters, if you do decide to be on a medication, you need to decide which one is right for you.

There are many factors that will come in to play on how you should, or should I say how I would go about choosing a medication for myself.

(You can click here to view the medications and information about them.)

So lets start off with the obvious, right? What everyone is going to look at first… how it’s administered. Is it a daily shot, it is a oral-pill, is it a so-many-times-a-week shot, monthly infusion, etc. That seems to be the popular way most patients are choosing their medication these days.

Okay, so you have looked at how the medication is administered, next is the safety of the medication. This is looking at the safety of the medication, the side effects, any warnings that may come with the medication, etc. This is obviously a VERY IMPORTANT step that needs to be taken into account.

Okay, so what’s next? You’ve looked at administration and safety/side effects? What else could there be? Well… I haven’t run in to this problem, but it’s always good to check and make sure that there are no issues with the medication you are interested in taking interacting with any current medications you are taking for anything else.

Now, the dreaded COST of the medicine, cause of course, there is going to be the cost of medicine… that might take a bit to find out what it will be with your insurance, but you should be able to get an estimate. Also, each DMD/DMT company most likely offers a financial support program of some sort that your neurologist can point you in the right direction to, or of course, many of the MS Resources.

So what’s next? You think you’re done? Most would think so… But, this is where I get… annoyed? I wouldn’t really say annoyed… maybe just disappointed that patients aren’t even aware or even know HOW to find the information that they really SHOULD be able to EASILY search for when it comes to the search on which medication they want to start with. The science of how the medication works, the relapse reduction rate, etc. I know… Science… My son loves it, me… not so much. But, I will say this… It’s good information to know when it’s time to choose a medication when managing your MS. This is also information you can ask your neurologist.

As you can see this is a very passionate topic for me, sorry if I babbled too much, but I really want to let the patients and their loved ones know that there are more things to know about the medications you are choosing, when it comes to that time.

Also, if you have gone through medication after medication and you haven’t found anything that works… you aren’t the only one, don’t ever forget that. Just remember that there ARE things being studied in the MS Pipeline that look VERY promising for MS Patients, even for those with more progressive forms of MS. You can see what I’m talking about by clicking here. Be sure to check back about MS Research often!

As for the topic about medicating and not medicating, choosing meds about symptoms and using alternative treatments are topics I will get to on the next few articles in the near future!

Wishing everyone the best! Try to stay cool!

xoxo

Ashley Ringstaff

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** Originally Published on MultipleSclerosis.net**