But I Want To…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Eeny, Meeny, Miney, Moe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wishing everyone the best! Try to stay cool!

xoxo

Ashley Ringstaff

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** Originally Published on MultipleSclerosis.net**