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***