What It’s Really Like

I just had an idea kinda hit me and I couldn’t wait to write it down and share my feelings about it, because it’s something that I seem to be encountering very frequently recently.

Well, I guess I can start off with how many times I get asked, “Is your MS bothering you today?” When someone talks to me, sees me, or something… cause I might be walking slow, or tired, or just not being very sociable in situations. I kinda think to myself, do they not realize that the symptoms that MS causes don’t just come and go? That’s how it is for me at least.

It might seem to outsiders that I have better days than others, because that’s true… but I think some people take is as, if I’m having a ‘good day’, that I’m not dealing with any symptoms caused by MS at all. Now, if only that were possible… I know a lot of us would enjoy that. However, I do know that there are people out there with MS, who have the luxury of not dealing with MS symptoms on a daily basis. Let me just say that I envy you for that.

I’ve even had someone tell me before, “Looks like someone woke up on the wrong side of the bed!” Which yeah, I know it’s a humorous sort of expression… but if I’m appearing ‘odd’ to someone, then there is a reason for that. In reality, even though I deal with fatigue all day long, and have to take medication to even keep me awake during the day, when I go to bed, it’s not like I can immediately go to sleep either. This graphic can sort of summarize that.

I know that a lot of people think that, well if you’re tired all day, then how can you not sleep right after hitting the bed. My body obviously likes to make my life difficult, so when I get to bed it seems like all the trouble I was having throughout the day that I forgot, come slamming in to my head when I want to go to sleep. Maybe I’m turning into Bella Cullen… (From Twilight Series, Breaking Dawn), I wonder if I will eventually sparkle! (Lol total sarcasm, sorry. And if you don’t know what I’m taking about, “You can Google it.”)

I know that I recently wrote something up about the laziness, and how hard it is to get through the day each day, but I don’t think people understand that when we explain what we have to do everyday, that we aren’t exaggerating and it’s not for just, when we need it. It’s most likely an everyday thing. Like my article “Day in the life of Ashley”, that was an example of a decent day, to say the least.

How do people NOT know that we deal with the same issues on a daily basis? Well we must be AMAZING ACTORS & ACTRESSES obviously. I mean, who wants to be a Debbie Downer all the time. This is why I try and joke about the issues I have most of the time, so that I’m not bringing everyone down around me, or complaining too much. Which I really don’t understand about complaining too much? Because I mean if the roles were reversed, and people had to walk a day in our shoes… they would finally understand that it wasn’t for attention, pity, neediness and that we were actually aware of how we complain, because I’m stubborn and I don’t really let on what’s going on with me except to maybe a handful of people on a day-to-day basis. I do let it all out in my writing though, but it’s different. I know that I don’t realize it when I complain, because I usually try and keep all that to myself… well that and my best friend who is oddly connected to me and we experience the same thing in some degree at the same time… (Yes, she has MS too.)

The bottom line is, everyone complains on a daily basis… but a large amount of people complain about the most ridiculous things… and I’m just like… How can you complain when you have no idea how others suffer?? Now I’m not just talking about me, I’m talking about everyone else living their life with a struggle, those who don’t know if they will be able to feed themselves or their family… those are things to complain about. I think people need to be appreciating more of what they do have there in life, and stop taking so much for granted. I’m one of those people and I think that I really need to evaluate WHAT I complain about, how often I do it, and to whom.

Now DO NOT take that the wrong way, you should always let out your true emotions in any form you can. Whether you vent it out with your family, doctor, friends, support groups & other ways. It all depends on your personal situation. What I do, doesn’t help with everyone. I’m just trying to share my feelings and how I’m learning to deal with them.

I recently told a close friend with MS that I try to not create drama, be judgmental, etc. But I do have my own personal view and beliefs, which are different from others. That’s to be expected, right? But I don’t think that we should be trying to like… ‘Recruit’ people to follow our own beliefs. We each have our own, and that’s what makes us our own person. Who wants to be the exact same as everyone else? That would be very boring.

I totally started rambling again, sorry. It’s been one of those days where I couldn’t comprehend or understand half the things that were said to me, I over did it doing yard work outside in the heat… and it’s just one of those days, where I just need to be like in a completely silent room with no one around and no unwanted noise…doesn’t it sound amazing? Well I’m a mother of two rowdy boys, so it sounds like Heaven to me.

So the moral of the story that I think EVERYONE should know about Multiple Sclerosis is… We are not all the same. Some people don’t experience symptoms everyday and that’s amazing. However, there are a lot of us that DO experience symptoms with different levels of severity. You may not realize it, because we hide it so well. But the symptoms, for me at least, are always there, just depends on the severity of them.

I’m not trying to discourage friends or family or anyone to ask about your MS… but I’ve come to realize that I like to have people kind of ask me in general questions, and not make statements… Like “Oh, you look so good!” or “It seems that your MS is bothering you a lot today.” Turn those two statements into questions, so that you are actually giving the person to answer in a way they want to. I think that the kind of commentary I’m referring to is in my article, “MS & Things You Should NOT Say” & I made another list a while ago, just to kind of give simple ‘ideas’ on how to approach a convo with someone with MS, when you want to talk about their MS – but not want to upset them in a way. Here are a few ideas…. “MS & Things People SHOULD Say.”

Needless to say, I’m probably going to continue on this sort of subject in the near future, so stay tuned J. One thing I will share is that one of the things that really helps boost up my mood, when I’m in a crabby mood, is PinterestPain PlayfullyJust looking for hilarious quotes on images, it’s amazing. Even if I’m in a ‘bubble’ where I don’t want to socialize and/or converse with someone, my head and I have a great time viewing funny things. Yes I said my head and I… I talk to myself, or have a full conversation with myself… because I feel like some days, I’m the only person that isn’t going to piss me off, or bug me. I never claimed to be normal, by the way.

Here is an example of what I mean about, trying to cheer myself up, while still being in my bubble. I know it’s not a funny one, but it kind of explains the ‘draw’ of why I like to search for humor, when I’m in a ‘mood’.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

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On a Scale Of…

You probably already know where I’m going with this, because honestly, how often have we heard the whole, “On a Scale of 1-10, how bad is your pain?” (aka the ‘pain scale’) Well, that’s really hard to answer. A lot of them will be like, compare it to the “worst pain in your life”… Why I find it hard to explain, or even try and answer, is because I feel like the levels of pain are different, when dealing with different TYPES of pain. Does that make any sense?

Our scale goes over a 10, to me at least. I found this on Pinterest, and had to share it. (I’m a Pinterest Addict, btw)

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So let me give you an example, not too long ago I got hit with a REALLY bad migraine. Now as of you know a migraine is NOT the same thing as a headache. So, I go into the ER Triage, and they start asking me all the basic questions. Need my med list, which by the way, he kept asking, “Is that all?” after every medication that I told him I was on. Which by the way VERY annoying; I will tell you when I’m done with my med list, I know it’s long… but you don’t have to be rude and try and ‘rush’ me along.

Don’t even get me started on my visit to this ER… I will never go back to it, if I can prevent it. My husband was there with me and he was getting angry that I was just sitting there in pain and no one was doing anything. Like, I’m in pain… manage the pain so that I can at least think enough to even speak. My mom had shown up without me even knowing she was coming. She came straight from work, and was in her scrubs, since she is a Home Health Nurse. Well when she sat there and was getting irritated that I was in a closet size room (that I couldn’t even have the light on, cause of the light causing the pain to intensify), with nurses and doctors laughing by my door, she went out there and not too long after, someone was coming in to start an IV.

Before they administered the medication… They asked me what my pain scale was, from 1-10… and I wanted to reply, “On a scale of 1-10 do you even want to know how bad I want to hit someone right now for asking me ‘1-10… 1-10… 1-10? IT WOULD BE A 10!” However, I didn’t say this because I didn’t want security coming to my room. My husband was about to have them called to the room with his agitation at the situation as well. Now, just an FYI… I’ve come to realize that the ‘type’ of migraine I had is considered a migraine without aura.”

Anyways, I was asked by many different people while I was at the hospital, “How would you rate your pain, on a scale of 1-10?” I feel like a lot of people think when you answer above a 5 or 6, that you are lying, and just trying to get seen faster, get medication, whatever. Well no, sorry that is NOT the case for people living with a chronic illness. The pain is real. No, we cannot ‘compare it’ to the worst pain we’ve ever experienced in our life… well I can’t at least. Because for one, my memory isn’t that good, for two… having a migraine, w/ the stabbing behind my eye balls, can’t stand light, noise, and am sick to my stomach??? That’s a DIFFERENT kind of pain, than what I deal with on my muscle spasms, childbirth, etc.

I mean, when I was asked about my ‘pain level’ when I was in a flare and dealing with a really bad episode of Nerve Pain, I didn’t even know how to rate it… For one, I had never dealt with it before… for two, I’m scared, for three… how do you compare your inside (invisible) burning/tingling, with like… a broken bone? (Which by the way, I’ve had my share of those too.)

I know that I’m on a rant right now, but I just can’t help it. I really think that I respond differently to this question, depending on the ‘bed side manner’ of who is asking it. I also have to take into account, that I don’t “feel” all the pain at times. Sounds weird right? Well I went in for acupuncture once, and she was blown away that I couldn’t feel any of the certain areas she was trying to stimulate or whatever. So, bottom line is, I have a high pain tolerance. I think I’ve mentioned that before… I can’t remember (memory issues again lol)

So basically when I’m being asked to rate my pain… 1-10… do you want me to rate it on what it would feel like if I didn’t have a tolerance to it? Or what? I also get the funny looks when I try and explain my pain tolerance to people, some understand, some don’t, but you can’t change that. At one point, maybe a year ago, I went in to the ER because of a… MIGRAINE! They tend to get bad when it heats up, or weather changes, which is a very common thing in Central Texas. My mom took me, and I got hooked up to an IV and they gave me something for the nausea, and then I think like some high dose painkiller through my IV, maybe morphine? Anyways, they came back in 30 minutes later, whispering to my mom, asking how I was handling everything.

Obviously they thought the medication would have knocked me out, because it does with a lot of patients. I tried to warn them of this beforehand, but they didn’t take my word for it. So instead of my mom answering the nurse, I decided to speak up… you are probably already imagining what I said lol. Anyways, I told the nurse while lying down in the dark room, “I’m still awake, the pain meds dimmed the pain down a notch and the nausea is sort of going down.” My mom said that the nurse, doctor and whomever else was tending to me, seemed shocked that I was still coherent from the meds that they gave me… this is another one of my ‘high tolerance’ issues.

I at times, get certain looks, where I feel like I’m being judged or lying about my pain level, just looking for pain killers? Has anyone ever felt like that too? HELLLOOOO, I don’t want to have to take more medicine than necessary. If I could just take a Tylenol and it actually did something, I would do that. But no, I’m looking for help, but I’m getting judged while doing it. I’m not saying that this is done with every doctor, or place I go. Just mainly when it’s an emergency situation, or if I’m seeing someone that I’m not familiar with, and they don’t know my history.

Because let me tell you, I know I’ve mentioned this before, but I am VERY stubborn at times. I usually just try and endure whatever I’m going through silently, or on my own. But do you know how hard that is to do with a husband that has medical knowledge and a mother that is a nurse? NOT EASY AT ALL! It’s like they team up on me, or plan behind my back. Isn’t that rude? I’m totally smirking as I write this, by the way. Because I know that they do it for my own good, and they know I’m too stubborn to make other people have to take care of me, or whatever it might entail.

So back to the whole scale thing, sorry I get sidetracked a lot. Do you know how many times I’ve had it in my head to come out with a smart remark to the person asking it? Something like, “Oh… about 50 maybe 60.” Just to see their reaction really. I think I’m going to be calling a “Pain Specialist” to help get everything under control, especially since it’s starting to warm up here. With the heat, comes pain for me.

Okay, that’s enough from me on this subject, for now… I just wanted to vent about that, since I just went through it, and I know I’ve discussed this with some of y’all on my FB Page. I also wanted to share this image I found on Pinterest, thought it kinda fit w/ the mood I’m currently in, and how I feel at times.

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xoxo

Ashley Ringstaff

MSWorld.org Social Media Director

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**Originally Published on MultipleSclerosis.net**