Isolation & MS

I know that I have probably touched base on this in the past, as many others most likely have… but I wanted to bring up the issue of Isolation & MS. I feel that this should be categorized as a ‘symptom’ of MS, because it can be very common after being diagnosed with MS.

When I was first diagnosed and learned about the disease, I started to feel isolated… not that I was in reality, but I had some people here and there just distancing themselves from me. So I then started to push people away, because it’s always easier to leave than be left, for me at least.

But my thing is, when I was reading over all the material…. What to expect, what symptoms came with an MS diagnosis, it didn’t prepare me for the isolation I felt, which worsened by depression.

A 12-Step Program for being diagnosed

I almost feel like there is a ’12 step program’ of being diagnosed, in a way. I dealt with steps of denial, anger, depression, acceptance, etc. Except for the fact that we have no control over the whole relapse issue. Well we do in a way, but not COMPLETE control. It should also be known that isolation can come and go… just like MS Symptoms.

One of the big differences in isolation compared to other MS symptoms is that there is no possible treatment for it, at least, not directly. It’s not something that people like to bring up, think about, or even speak to their doctor about… I didn’t speak to my doctor about it at first because I didn’t feel that it was something that was ‘important’ in regards to my illness and managing it. I was wrong.

Easier said than done

Some people would say, well if you’re isolated, talk more… or socialize more… Now let me just say that it’s easier said than done. I may want to talk more and socialize more, but I won’t. Like when I was first diagnosed, I knew that I needed to socialize and really try and bring myself out of the isolation, but I was scared. I didn’t know whom I could socialize with, with the topics that I wanted to discuss.

Isolation is unpredictable

Isolation isn’t something that can be fixed and then never return. It’s just like MS… there is no predicting it. It is present throughout different times/stages of your illness, not just when you’re first diagnosed. For instance, when I’ve relapsed… I’ve gone back to isolation. Yes, I purposefully isolated myself. Some people have asked me why, and it’s because for me, at the time, it was safer. I was safer to isolate myself than to be judged, looked at differently, or just have people talk about me behind my back.

I saw this quote a long time ago, and I wanted to share, because it’s a bit fitting for how I have felt at different stages in life since my diagnosis. It reads

“Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.” ~Socrates

So if you are feeling isolated, just know that you aren’t alone. Do we cause the isolation on our at times, yes, but that’s most likely because we’ve been burned before, and want to prevent it from happening again. Or maybe were making ourselves isolated due to depression, anxiety, stress… there are many reasons on why I have isolated myself in the past, and I’m sure there are other reasons for anyone else who has done it before.

I don’t feel like it’s a bad thing to kind of go on a ‘mental vacation’ for a night, etc. but be careful on how far you isolate yourself and for how long… because you don’t want to push people away that really truly care about you.

Until next time…

xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net**

My Emotions Are Broken?

Okay, so my emotions aren’t actually ‘broken’, but I feel that they don’t work… normally, if that makes sense. I have taken some time to really think about this, and look back at my reaction to certain things/situations. And I just feel that sometimes, I don’t respond with the right ‘emotion’ at the right time.

The “wrong” emotional reaction

For instance, if someone is mad at me… I don’t react the way I would have say … 10 years ago. I just seem to have no emotional response to the situation. And that can be a problem, cause then people think I don’t care about what they’re voicing to me, but that’s not it at all. There are times, that I feel the ‘right’ emotion, but I don’t show the emotion. It’s like my brain can’t compute how I’m feeling to really show through my actions/words.

I don’t know if this is just me, but it’s something that I wanted to bring up for a while now. And no, I’m not trying to ‘blame’ this on my MS… cause for the longest time I felt like something was just wrong with me… until I discussed with my doctor. He stated that MS could affect emotional behavior.

Now, let me just point out that my emotions aren’t always broken… but just at certain times it seems. And it’s not something that I can predict when it will happen. I’ve never been a very ‘emotional’ person to begin with, by the way. I had the mentality that crying was a show of weakness growing up, so I didn’t do it. But I then learned that it’s okay to be emotional, and it doesn’t make you weak.

My emotional response isn’t predictable

It’s just so weird… I will get in an argument with my husband (because no relationship is perfect) and there are times that I will show emotion during the argument and we hash it out, etc. But then there are the times that we argue, and I sit there, listening to what he is saying and it appears as if I’m ‘bored’, or not paying attention. And I can’t seem to get a hold of it to not make it seem that way. I have been able to repeat everything back to him that he said, and do it with no emotion, almost like I’m reading it off a script.

I guess I just come off with an attitude most the time of “I don’t care” when that’s not always the truth… I just get so frustrated with how my mind won’t let me compute my emotions then I get angry at myself, not the person or situation. It’s almost like being locked up and being held prisoner inside your own head. Same thing applies with the whole “broken brain filter” or “cog-fog” issue.

If you really think about it, MS is inside our nervous system, so we’re being held back from doing certain things, accomplishing certain tasks, etc. But no one is physically holding us back, or keeping us locked down. It’s our heads, nervous system, whatever you want to refer to it as.

There was this video that I saw a while ago that was made for MS Awareness, that I felt really fit what I’m talking about right now. I have included it below… Now, let me just say that the video is kind of scary for some, and doesn’t really sit well with some… but it’s just want I’m trying to communicate in regards to my thoughts, emotions, etc. literally being stuck and not able to communicate them properly.

“Trapped”

So, while I was looking for the video I posted above, I came across a series from MS Society of Australia called “Seeing MS”. This specific video is called “Seeing MS – EXPOSING THE INVISIBLE DISEASE”.

I’m definitely going to look into the whole series, but I always like sharing things I find online, and sharing them with my family and friends, and all of you.

That’s all for now. I hope everyone is having a wonderful New Year thus far.

xoxo

Ashley Ringstaff

**Originally published on MultipleSclerosis.net** 

My Definition of ‘I’m Fine’

I'm fine. Save me.

I know that most of you have said “I’m fine” in the past, when you really weren’t… you hear other MS’ers saying it, when you know they aren’t… It’s just something that I frequently say… and I’m going to try and ‘define’ on what it means when I say, “I’m fine”, when I’m really not.

Well for one, when I hear the statement, “I’m Fine”, it makes me think of this image I saw that I want to get in a tattoo… It shows the “I’m Fine” writing, and then you flip it over… and it reads “Save Me”.

What do I really mean when I say “I’m fine”?

So what do I mean, and maybe others with MS too… what does it mean when we say “I’m Fine”? Well for me, it just seems like it’s easier to say I’m fine, rather than explain everything that is wrong. Now that is not be being overly negative or exaggerating… because let me tell you, if I described to someone everything that was wrong, when it was happening, I would never stop talking. And I already talk a lot as it is (See I got jokes).

It's hurts, but it's okay.. I'm used to it.

So why don’t we explain how we’re really feeling, when someone genuinely wants to know? Please don’t feel like I’m brushing you off by answering I’m fine, for starters. But to try and explain it… I already feeleverything I’m going through because of my MS, I don’t want to have to describe it all the time. I explained this to one of my friends recently… and she sent this to me…

She basically stated that, this is what she feels it is like for me… just by seeing what I’ve gone through over the years. I can’t remember the last day where I went the WHOLE day without feeling any pain, or dealing with ANY symptoms. The only reprieve I get from the symptoms unfortunately is by medication to help treat my symptoms. But who wants to take medicine all the time? Not me… unlike what SOME people like to assume… that I am a pill popper. Which couldn’t be further from the truth.

So easily put, I answer with “I’m Fine” just so I don’t have to describe and listen to myself list off everything that is wrong. I don’t like to dwell on the things I cannot change, and I don’t like to be a downer, if you couldn’t tell from my heavily sarcastic posts in the past. But I do have my moments where I’m being blunt and honest, and I’m not looking for attention, or pity, I’m just explaining the facts.

Sometimes it’s just easier

Sometimes it’s easier to say I’m Fine, rather than explain what’s wrong… then have to explain in depth about each certain thing, because the person isn’t familiar with MS, the symptoms, etc. It’s tiring, and I’m already battling fatigue as it is.

So for the honest truth, that I myself don’t like to admit a whole lot… is that I say “I’m Fine” because it can be extremely depressing for me to sit there and think about everything that is wrong… I don’t want to think about it. Kind of like out of sight out of mind.. This is my ‘normal’ now… This is my everyday. You just grow accustomed to the things you cannot change and grow from it and move on and do the best you are able to do.

Did I even make any sense just now? Or am I just rambling? Oh well, you probably get what I mean.

Xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net** 

What Were We Talking About?

Have you ever heard of people ‘zoning out’ or doing it yourself? I’ve done it a lot, particularly when I’m not interested in what’s being said. However, ever since my diagnosis, it seems to happen much more frequently than before; and I’m not even zoning out on purpose!

I get so frustrated with myself, because I’ll ask a question, or be talking about something with a friend or co-worker, then my mind just draws a blank. It’s like I see the words you are speaking, I can hear the noise you’re making, but my brain is not computing what your words are saying/meaning and computing in my brain.

Feeling guilty

I feel so bad, when I am having a conversation, and I have to ask people to repeat themselves. This can also be because I’ve lost some hearing, but it’s also because my brain is blocking the information to compute in my brain.

I know that some people have been put off when this has happened with me. Then I feel bad… and try and explain… but it’s hard to explain, unless you actually KNOW what I’m going through.

This can also happen when I’m thinking about something… working on something… etc. I can read an article online, word for word, and I will have absolutely NO idea what I just read. This tends to happen more frequently if I’m tired, it’s at the end of the day, etc.

Forgetting things almost instantly

There are also times that I will be engaged in a conversation, listening and responding… 10 minutes later, I sometimes completely forgot what we talked about. My husband has noticed this because we will talk about something, then like an hour later, I’ll bring it up to him… and he just looks at me weird, then informs me that we just talked about all this not even an hour ago.

I think he finally understands that it’s not on purpose. I think this issue can really be classified as memory issues and cognitive function… sort of a mixture. Let me tell you, where I work full-time, I have to remember mileage on an odometer of a vehicle at times. For example… I went out to a vehicle, checked the odometer and by the time I got inside to my computer I completely forgot the numbers. Mind you, I repeated them in my head the entire walk back to my desk. So I had to go back and do it again… and it happened again! So I ended up taking a picture of the odometer on my third trip, with my phone, so that I could have it plain as day in front of me.

So let me just issue a BIG apology to anyone that I’ve spoken to in the past, that I’ve had multiple conversations with about the SAME EXACT THING… I know I’m a broken record at times, but you will have to excuse my brain, it likes to go on vacations with out me, it appears.

I can tell that me asking people to repeat themselves, sometimes more than once… or bringing up things to them.. more than once, it can be exasperating to some… trust me, it’s exasperating for me as well, once I realize that we’re having a repeat conversation… I’m also embarrassed about it at times, to be honest.

xoxo

Ashley Ringstaff

 

Originally Published on MultipleSclerosis.net

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***