Definition of, “I’m Fine”

This is something that we say often, and that is spoken about often in regards to the daily conversations we have with other people, asking us how we are doing. Now, I’m not saying that I reply w/ “I’m Fine” to everyone who asks, but there are some people that ask more out of being polite, then actually wanting to get into a conversation about it all.

Because in all honesty, what is “I’m fine” to us? To me, it means I’m having an ‘okay’ day. Is my MS still bothering me? Yes, it does everyday… but it just depends on how much it is bothering me that day. So if it’s a day that is what I would call ‘normal’ for me at least, yeah I will reply with “I’m fine.” Lets face it… we are never completely fine, well at least I’m not. I deal with multiple MS symptoms everyday… it just depends on how severe they are.

But in actuality… when someone is asking us how we’re doing, I think that more of a, “Hey what’s going on with you?” – Not a, “Hey how’s your MS today?” Lets face it, it would be exhausting to tell everyone how we are feeling in detail every single time they asked. I know that some people wouldn’t understand everything that I even explain, and it would tire me out to hear everything that is going on with me every single day. I already deal with it; I don’t like to voice it every day too.

So, I think that’s why the phrase, “I’m fine,” has become one of our most common phrases. Now, I don’t use it when I’m seeing a doctor, etc. I let them know what’s going on, because that’s where we can address anything that needs to be addressed, change medication, etc.

I don’t want people who actually want to know how we’re doing, to take the “I’m fine” as a blow off comment either. If we know that you actually want to know, and/or we usually discuss how our MS is… maybe at that time, we are just having a hard day or something, and just don’t want to voice everything that we’re going through. So please don’t be offended if you hear, “I’m fine”.

I think that we do at times, use it as a mechanism to see who actually does care. Because for those people who actually do care, or know us better than that, they will try to show their support, despite us telling you we are fine. I will text my best friend, asking her how she is doing… and she will say, “I’m fine” (she has MS by the way) and I will respond, “Yeah, and I’m a Victoria Secrets model, how are you really?” Because I know she is just NotFinesaying it to not complain to me, because we know that we each have a lot going on with our own lives, but what are friends for anyways? But I always interject some humor into my commentary, when she tries to tell me she is ‘fine’.

I’m not trying to be complicated for anyone, when I say, “I’m fine”… I think I say it at times, out of routine, rather than really thinking about my answer. It’s kind of like, you say Hello, Goodbye, How are you, Love you…. “I’m Fine” is in my common phrase vocabulary. I can say it without even realizing I’m saying it. So please don’t take offense to me responding that way either.

I have also used it in a way to ‘filter’ out the people who actually WANT to know the truth of how I’m doing, and are doing it just to be polite. I’m not trying to be rude and ‘test’ friends… but I’m trying to make it easier on all of my relationships. So that I’m not overwhelming someone with how I’m feeling, when they may not be able to really handle my answer at that time. I get that.

Am I making any sense to y’all? Or am I just rambling? It’s hard to explain what I define as, “I’m Fine”… because if I was being completely honest, I’m not fine. I don’t have days where I’m not bothered at all by something that my MS has caused. Kind of like I explained in my recent article, “Is Your MS Bothering You Today?”

I love talking about MS and advocating for it, etc. But I have days where I just don’t want to talk to anyone… and I’m not trying to be rude or anything, I just get in certain moods where I like peace and quiet, on the outside at least. Because my brain never shuts up – so I have no peace from it obviously! When I’m in these moods, I tell people I’m fine, when they ask what is wrong. NothingPersonalAnd that’s the truth… in the way they are asking it. They are asking it, thinking I’m upset and/or mad, but I’m not… I just get in these moods where I like to be quiet, and I don’t want to socialize… it’s weird? But it helps me. I can do things I want to do – not worry about socializing, etc. I can just sit here and play games, or read, or something… I know I’m probably not alone on that feeling either. I found a graphic that explained it perfectly too… I’ve added it below.

Anyways – this is, in some way, how I would define the phrase, “I’m fine”; because there can’t be a single explanation and/or definition for the phrase, because it varies from person to person, and in different situations as well.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

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Is Your MS Bothering You Today?

Have you ever heard the sentence, “Is your MS bothering you today?” or something to that extent? It seems to happen to me with people that I don’t see all that often, or aren’t as ‘educated’ about the disease. But it tends to bother me at times. Mainly when people ask me things like this, that I’ve told multiple times the workings of Multiple Sclerosis.

I understand that not everyone wants to ‘hear’ about MS, and I can understand that. But don’t try and ask me about MS, and to take the time to really educate you so you can understand better, when you aren’t even listening. Because if you were even listening, you would know that my MS bothers me EVERYDAY. It just depends on the severity of it.

For instance, this past week I’ve been doing yard work/landscaping in my front yard with my husband and kids. Not a big deal, right? Well it is when it’s HOT outside… and I’m not talking about like mild hot, I’m talking like the other morning my phone app said it as 76 Fahrenheit outside at 9am, with a heat index of 90… because we had high humidity (82%). I was outside working on the yard and I had to stop because I could tell I was over doing it.

So that was a few days in a row that I was working on the yard, and every night I’ve been going to bed early, and sleeping for a long time. I even couldn’t remember going to bed, because I was so tired. So in general, the heat makes me worse. I’m more fatigued, I am just in pain, and my back is in a constant spasm… my foot is dragging a little bit, etc.

But the thing is, I don’t just deal with this when I over do, or it’s too hot out. I can have increased symptomsby plenty of other reasons, or just because… no other reason needed.

The moral of my point… MS does NOT go away. If our MS went “away” that would mean there was a cure, which we currently do NOT have. I have probably written about this before, but I can’t even remember because guess what? My memory is complete crap at the moment, and I literally can’t remember anything. I’ve literally been telling them that my brain is fired and/or “out-of-order” or what I have termed as Cog-Fog.

I’ve come to realize that not just for me, but also for many others with MS or other invisible illnesses, etc. that we can be very sensitive to how things are phrased. It’s not because we are mean, or just rude, it’s because we have been put through so much, that just certain words can put our ‘guard’ up, or it does for me at least.

So if we are snippy about it, don’t take it personal… if you are one of those people that ask us questions about how we are doing, and really mean it. Sadly, there are people out there that will put us down, or make us feel like crap about being diagnosed with MS, when we really had no control over it. We already go through so much, which it’s sad that there are people out there who actually make it worse for use, but it’s true. However, I fully believe in Karma… so I try and calm myself down and not ‘react’ to people who are rude or uncaring.

Now there are people out there that have MS, and don’t have deal with symptoms on a daily basis, and that’s really good for them. Those of us who you would probably ask about their MS, because it’s more noticeable or bothersome, we can’t control it. Yes, we do try. Who wants to live with the symptoms that are caused by MS? No one. I’ve done vitaminsmassage, chiropractormeds, stretching, Physical TherapyExerciseDiet, and the list goes on and on… and I do feel better than what I did initially, but it’s not GONE.

Bottom line, as of right now, this is a life long illness for many others, and myself until a CURE happens to those of us living with MS. Now remember as I have stated in a previous article “Calling Y’all Out”, what my definition of a “CURE” is, which I call the “C” word.

Ashley’s Definition of a CURE for Multiple Sclerosis: A medication and/or technique/procedure that stops any future demyelination to a patients Central Nervous System to happen EVER again. BUT this certain medication and/or technique/procedure ALSO correct any and all damage done to patients Central Nervous System due to Multiple Sclerosis.”

I also love the saying, “Looking forward to the day when MS stands for Mystery Solved” (I even have it on a T-Shirt)

Now, I’m not sitting here trying to be negative or anything, but I’m just being realistic. But also remember that what I personally go through with my Multiple Sclerosis isn’t what everyone else goes through. It can be better for some, and it can be worse for others, sadly.

I think a lot of people that really ‘know’ me, already know that since it’s starting to heat up in Central Texas, I’m not going to be out doing as much… especially things that involve outdoor activities. Not because I don’t want to, but because I can’t. I try to do as much as I can, believe me. I’m stubborn and don’t like being held back when it comes to things I want to do. But with the heat, comes overheating, and with overheating, comes fatigue… then possibly pain. So I try and not start that cycle up.

Oh! I was recently in Indianapolis, IN for the 2015 CMSC Annual Meeting covering the conference for MSWorld’s Conference Coverage. Which you might have heard about this meeting from Cathy Chester, “Hope and Collaboration: A Preview Of What I’ll Be Writing About As A Blogger For CMSC’s Annual Event

Myself, Christie Germans & Cathy Chester all posed for a ‘selfie’ as well, which you can see by visiting Cathy’s article. I also ran into Laura Kolaczkowski at the Conference as well! Needless to say, there were a lot of MS Patient Bloggers there, and it was refreshing to see so many familiar faces.

I totally just got side tracked, but what else is new? What is my main point of all of this?? YOU ARE NOT ALONE. There are many people out there who feel the same way as you – or go through the same situations or even confrontations that you do. Unfortunately, there are still people out there who are close minded, and don’t want to see and/or hear what’s really going on. We can’t FORCE education on these naïve people, even though we want to, it would be a waste of time, trust me on that.

But there are people out there that want to learn more, that want to hear what MS is all about, and want to know what is REALLY going on with us, not just an “I’m Fine”.

So cheer up buttercup! You aren’t alone in your fight and your feelings. It is frustrating… but this is something that we must move forward from so we can enjoy life. Are we always going to be upbeat and positive? No, absolutely not. We will have our bad days, because those of us that are affected my the symptoms that MS causes on a daily basis… there are ‘good days’, even though we still experience symptoms, they are just tolerable at that time, or maybe we have built up a tolerance to them? Who knows?

“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**

Well, that’s embarrassing

I know this title is confusing, but what can I say… it can relate to a lot.

We all know that MS can cause some not so pleasant symptoms that are embarrassing to discuss, or even want to deal with.

While I haven’t had the pleasure (heavy sarcasm) in dealing with all of the ‘embarrassing symptoms’… I have had to deal with some.

So as many of you know – I was diagnosed when I was 22, I’m now 27. So, I had never expected that I would be dealing with **GASP** bladder dysfunction, due to my MS… Yeah I know, I wanted to hide under my blanket when I first started dealing with it.

But then as I just ignored the issue like it wasn’t happening, it seemed to get worse. So, I finally went to my neuro about it. Now, I’m not gonna lie… it wasn’t easy. I think my face must have been beet red from my face being on fire discussing it. But I got a referral to see a urologist close by.

So, this is just… great. I just discussed a very… embarrassing thing with my neuro, and now I have to do it ALL over again. Couldn’t I have just like, recorded myself explaining it, so I didn’t have to voice it again?? But that would be kind of awkward, listening to myself on a recording stumbling over the word “leaking” and “close-calls”.

Now, let me just say that I don’t embarrass easy anymore, but this was just after being diagnosed, not even a year after. I wasn’t seeing my MS Specialist that I do now, whom I’m comfortable speaking with about these things.

So, I read some things online, about items that can help with urinary issues. I go up to my local grocery store, and I’m in the ‘pad’ area, just trying to look in detail about what each product has to offer. And I then have a woman stand next to me, letting me know that it was sweet shopping for these particular items, she then pointed out full on adult-diapers that her mother uses, and that my grandmother would benefit from most likely. Can you imagine how red my face was by this time?

I wasn’t having full-blown accidents, but I needed SOMETHING to help me out in case I had a coughing/sneezing fit, or laughed too much. I was going for something discreet, that I could also carry with me in my purse, if needed.

Now, I know that this is an embarrassing subject, and many people don’t really open up about it like I am, but it’s something that we have to deal with at times. For the men who deal with this, I’m sorry that you don’t have as many products available as women do.

So anyways, when I went to see the urologist, they scheduled for me to take some tests, that I don’t even want to explain here… but lets just say it wasn’t always the easiest things to go through. Now, please don’t let that keep you from seeing a urologist, if you need to.

Once I went through all the testing and spoke with my urologist about the results, I was put on a medication to help with my ‘leaking’ problem. After being on the medication for a while, I didn’t have anymore issues with leaking, so I decided that maybe I don’t need the medication anymore… I mean we already take A LOT of meds having MS; so trying to cut down on the amount we take in a day is something that we all want.

Let me just say that, taking the medication out of my daily routine didn’t seem to change my daily life too much, or have the urinary symptom flare up, but after a little bit of time being off of it, I realized that it WAS working, in the worst way possible to find out. So, now I need to go back to my urologist and talk to him about what he thinks I should do. Continue on the medication I’ve taken for so long, or discuss other options.

I mean… did you know that you could get BOTOX done for these embarrassing symptoms? Yeah! It’s not just for Hollywood stars wanting bigger lips and fewer wrinkles.

I remember after going through the whole thing about talking to my neurologist, I had gone to a MS Conference (ECTRIMS 2011) and found many resources available for people dealing with urinary issues and MS.

Did you know that there is a ‘discussion guide’ to help you answer those embarrassing questions I answered, without having to have the full-blown conversation first thing? If you want to check it out, you can do so here.

So, let me just end this on a more positive, less embarrassing note. If you are experiencing something that is annoying and/or embarrassing, odds are that it’s not just going to ‘go away’ with time. In fact, things can get worse if you don’t get certain health issues looked at. So, even though you might need to have an uncomfortable conversation with someone, that’s just taking a step towards getting better. I mean, c’mon, I’m in my late 20s and I am publicly speaking about urinary issues with MS!

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Dealing with Guilt as a Parent

Those of you that live with Multiple Sclerosis probably know… that there is no 100% known cause of MS. However, there are some things that scientists have found has contributed to people getting MS.

The causes that have been published are: Environmental FactorsGenetic Factors & Lifestyle Factors. One of the things that I know that a lot of people are worried about is the genetic factor of MS. As most of you know, I’m a mother of two boys. So obviously, when I first heard I was diagnosed, one of the first questions out of my mouth was, “Are my kids going to get this too?” This was with a general neurologist, by the way. He couldn’t really tell me a for sure answer, but said that the chance is slim.

Now, that wasn’t very reassuring, but I have heard from many other Health Care Practitioners over the years, that the chance of my children getting MS is very low.

One thing I would like to bring up is something that is posted on MultipleSclerosis.net’s Genetic Factor section, “If a person has a first-degree relative with the disease, the risk for MS increases to around 2 to 5 in 100. Despite this increased risk, even with a family history of MS, the chance of developing the disease is still relatively small. However, the risk does rise again in families which have more than one member living with MS.”

So what does that mean? It means that there isn’t a very HIGH chance that we will pass MS down to our kids, but there is a slim possibility. I’m still concerned about it, but I feel that more research needs to be done on the matter.

I also feel that, since I do have MS, I have a ‘sense’ as to what to watch for. Does the worry go away? For me, no it does not. It’s not something that I think about all the time, but when the topic does come up, I do have that scared feeling. I have spoken with people in the past, where a lot of their ‘close’ family had MS, so it seems that for some reason, their probability was higher. Now with me, I have a distant cousin that has MS… but no one in my immediate family has it.

If you want to read more about the genetic make up that is involved with MS, you can check it out by clicking here.

Now, remember… it seems that even if your children and/or direct family have the specific gene that scientists have researched, which is the HLA gene, it doesn’t necessarily mean that they will get MS. It is believed that, “A trigger, presumably something environmental, is what is thought to set off the disease process.”1

What is the HLA Gene? Researchers have identified particular genes that make some people more susceptible to getting MS, in particular the HLA complex, as containing probably the most important susceptibility gene for MS.1

Now there are different ‘numbers’ and data with every different resource, and I really believe that we need more research done in this area, to truly understand the concept of how genetics plays a roll.

As parents, we worry about our child, that’s just the bottom line. The worry will never go away, and now we have the worry about them getting MS. In all honesty, I do worry about this, but with the numbers being low, from what I’ve read… it’s not a HUGE concern for me and always on my mind.

I know it’s hard not to feel guilty about if you may have possibly passed MS along to your children, but please remember that we didn’t ask for this illness. No one wants Multiple Sclerosis. So until there is something out there that gives you ‘reason’ to feel guilty, try to stay as calm as possible. We all know that stress isn’t good for those of us with MS anyways.

I will be attending some MS conferences this year, and if there is any new information that I can find on this matter, I will for sure share.

If you would like to talk to other people with MS, and get their input on it, you can always post on MSWorld’s Message Boards. Visit MSWorld.org for more info about that.

Wishing you all the best.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

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