How to get involved

Well, let me start out by saying that I have had a lot of readers message me on Facebook, asking me how they can ‘get involved’ within the MS Community. So, I thought that writing an article about it would help answer a lot of questions for everyone.

Now let me start out by saying that, when I was diagnosed in August 2010 at the age of 22, I wanted to ‘talk’ to other people with MS, to see how they were doing and answer some of the questions I had. However, I didn’t want to go to a local meeting… because at the time, I was scared… completely terrified of what would happen to me in the future. Everything I had looked up online made some sort of reference to wheelchairs, disability, etc. So, at that point in time, I didn’t want to ‘face my fears’ going to a local meeting.

I found MSWorld.org through the National MS Society. Why did it grab my attention? Because it offers a Live Chat Room & Message Board… I finally found a way to take part in the MS Community, and ask the questions I had but I didn’t have to do it one-on-one.

Now don’t get me wrong, I know now that there isn’t anything bad or terrifying about going to meet with people in a local MS meeting, but at the time I was clueless as to what MS really was and what was going to happen.

I have since been involved in the MS Community in many different ways. I still don’t go to the local MS meetings, hosted by my Local National MS Society Chapter, but it has more to do with… I just don’t have the time to get out to a meeting.

I am now a volunteer at MSWorld as the Social Media Director & the Content Management Director. Words can’t describe the friendships I’ve made by simply visiting their website all those years ago. I get to talk to people from all over the world, at any time of day, coming from every type of background.

So, let me just say that if you’re reading this… it seems that you have taken the first step in to getting involved in the MS Community, and talking with others that live with Multiple Sclerosis.

You can even use the MultipleSclerosis.net “Community” area or their Facebook & Twitter to get involved. There is even a list put together on MSWorld’s Resource Center, listing ‘legit’ MS organizations and resources you can go to.

It will probably surprise you about how much is out there and what all you can take part in. You can probably join a MS Community/Group just on your Social Media Outlet aka Facebook and Twitter.

Do you gain support by going to places like MSWorld and MultipleSclerosis.net? Yes, of course you do. But you also get to hear how other people live with MS, tips or ideas on how they make things easier… or how to find a MS Specialist in your area. I do know that it is hard to find a MS Specialist close by, if you live in a rural area… but there are resources that can help you find those resources, so you aren’t searching on your own. (Click here, then click on “How do I find a neurologist specializing in MS?” for some tips.

Another way I stay ‘involved’ in the MS Community, specifically on what is going on in the World of MS, is by checking the News Outlets available on many different MS Organization Websites. I also signed up for a “Google Alert”, which will e-mail me daily/weekly e-mails about what has been published online recently about Multiple Sclerosis. Of course, I go to MS Conferences on behalf of MSWorld’s Conference Center, as well. So that’s a good way to stay up-to-date on what’s going on in Research & News, but in a “patient friendly” manner. MSWorld also has a ‘news feed’ for MS News.

There are even Apps out there to help you out along the way. I really do need to make a list of those, speaking of which. Maybe I can do that soon? But I do use things like MS Manager by MSAA, for example. MSAA’s website also has a lot of helpful resources as well!

In the past, I wrote an article on “Building Your Healthcare Team” that you might want to check out! Some other helpful resources to check out if you want to get involved in the ‘studies/research’ for MS are NARCOMS & iConquerMS.

Also – don’t forget to follow other MS Advocates, like myself, that write on MultipleSclerosis.net. Click here to check out all of them.

xoxo

Ashley Ringstaff

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“My strength did not come from lifting weights. My strength came from lifting myself up when I was knocked down.” – Unknown

(P.S. I know that there are a lot of ‘linked’ words/text in this article, but there are some great resources & information to look into by clicking on them.)

**Originally Published on MultipleSclerosis.net**

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Scared of the Future

I know that I’ve thought about this in the past… and some of you probably have too. I think the general population is worried about what the future might hold. But that’s reality isn’t it? However, adding Multiple Sclerosis, or any chronic illness for that matter, into the mix… and your worries about the future all come to you and slap you in the face, or at least that’s what they did to me.

I can tell you that it’s okay to be scared… I’m a very strong willed person (a.k.a. stubborn) and I don’t like to show any sort of weakness for the most part… but does that mean I never have my weak moments? No… I have them, just like everyone else. I just usually have these ‘moments’ when I’m alone. Just kind of let it all out, so I’m not keeping it all bottled up inside just waiting to explode.

So yeah, the future is scary. But it can also be hopeful at the same time. If you compare what options people with MS had 20 years ago, to what options we have now… our Quality of Life has improved and disability isn’t something we have no way to fight against. In a way it is, if you want to be ‘technical’ about it, but those that choose or have the option to take DMT’s, seem to have a better EDSS score.

So after a General Neurologist first diagnosed me in August 2010, yes I was terrified of the future. I also didn’t have any positive outlook for the future for a while after I was diagnosed. I was in a wheelchair, paralyzed face on one side… and my diagnosing neurologist was pretty much telling me I’m never going to get better, or back to ‘normal’ ever again.

HOWEVER… Once I reached out to MSWorld’s Online Support group, and got a different perspective from other people with the disease, I had some hope and was really taking everything in and trying to keep notes of all the ideas sent out to me, etc. One of the best pieces of advice I received since I was diagnosed is to go see a MS Specialist. Now it wasn’t like an immediate switch from negative to positive with how I felt for my future. That took a bit of time. I had to build/establish that relationship with my neurologist to finally be comfortable & less scared.

I’m not saying that my fear went completely away, that would be a lie. I still deal with it. Every time I get in that MRI machine to check out if I have any new activity, I’m nervous, scared, and anxious… but I can at least add in to that mix of emotions that I’m hopeful.

I’m not just scared for what my specific future looks like, but also for my kids. I’m still hoping that I haven’t passed any sort of possibility for them to get Multiple Sclerosis.

For me, it seems that I’m more fearful of the unknown in the future, than I’m scared of what I knowMultiple Sclerosis can do to someone. Do those things correlate with each other? Yes, they do; I guess my point is, if we had some sort of disease map layout of what was going to happen to us on a timeline… I don’t think I would be as fearful of what lies ahead for me. Even if the things in my “mapped timeline” were vision loss, wheelchair, etc. I feel that having that forewarning would help me deal with the situation better when it presented itself.

Now don’t take that the wrong way either. I’m not saying that I wouldn’t be upset, scared, etc. But I would rather have a warning, kind of like the Tornado Alarms that go off when a tornado is coming. You would want that warning to prepare yourself, rather than no warning at all and it just surprise you out of no where.

But that’s something that we could have in a perfect world… and this isn’t a perfect world. This is real… raw… painful… but it’s life.

Each person does not follow the same ‘path’ as each other (aka MS Snowflake). So it’s hard to give a ‘mapped timeline’ for people with Multiple Sclerosis. It’s just a big rollercoaster ride… you just better sit down, buckle up and keep your fingers crossed.

I guess that’s why I don’t like people comparing my multiple sclerosis to something else… Don’t compare the disease I’m living with to something that has a common ground and people go through each of these phases and prepare themselves for that… And then they get better, and then get past it. I don’t have that option. People with multiple sclerosis DO NOT have that option. As of right now, Multiple Sclerosis is a Life Sentence… Pretty sure I’ve discussed this in the “You Can’t Compare” article, but oh well.

I’m not trying to do a comparison of what disease is worse than the other one, etc. Cause they are all horrible to be diagnosed with and change peoples lives but if they were all the same, there wouldn’t be so many different diseases, even specifically neurologic diseases. They are all named something different, because they aren’t the same thing. Can there be similarities? Yes, of course… but that’s doesn’t make them identical.

Wow, I’m ranting aren’t I? See what this does to me… it gets me all worked up. But I’m passionate about it all. I have all of you readers that will message me on here – or on Facebook or Twitter, thanking me for putting in words what you’re dealing with… and I appreciate that to no end. I keep writing because of the readers that have reached out to me, obviously… but it started out a way for me to vent, and that’s always the main reason why I speak out for people with MS, for people like me.

I’m going to end it on that note, for now at least.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

But You Look Fine…

If you’re reading this, and you have Multiple Sclerosis, you have probably heard this phrase before, or heard something along the lines of, “But you look fine/normal…” So how are we supposed to respond whenever someone says something like this to us? To me, it’s annoying and sometimes rude… it just depends on who said it for me. I think this was at the top of my list on my article, “MS & Things You Should NOT Say.”

Some people have said this to me, who are a part of the MS Community, like other MS organizations, other people with MS… so I don’t take it badly, when the person who is saying it does so and is knowledgeable about MS. They are meaning it as a compliment. Sort of like, you seem to be looking very good despite your MS. Now lets face it… MS doesn’t always make people “look good”. Whatever that definition might be. I’ve even been known to quote Beyoncé and have replied with, “I woke up like this…” Because the person who is educated about MS, know that this isn’t true.

I don’t care what commercials say, what celebrities portray… the majority of us don’t wake up ‘flawless’. I can straighten my hair the night before and wake up and it’s a mess…

Would they be saying that if they saw me on a day that I wasn’t expecting to be noticed while I was out… maybe I was in my PJ’s, no make-up, etc. Would I look good then? I’ve come to the realization that has also been said to me, in the way that I carry myself. That I’m not letting the MS keep me down, I’m not just ‘laying down’ and letting MS take things away from me.

But then there are the people who say it that mean well, but don’t know how what they are saying is coming off. I usually make a joke about it. Replying with something like, “ Yeah, well you don’t know how long it took me to ‘look’ like this.” Or “Yeah, I didn’t want to scare anyone, so I only go out in public when I have enough energy to be presentable.” So even though I’m making a joke about it, they can realize that I don’t always look the way I do that day. Am I going to go out in public unless I absolutely have to if my leg is dragging? Most likely, I won’t because if one symptom is flared up, then most likely other symptoms are as well, like fatigue, etc.

Now when it comes to the people that are saying, “But you look fine to me”, well those people get my sarcasm mostly. It just depends on what ‘mood’ or how much tolerance I have at that time for peoples lack of common sense.

I’ve responded with things like, “Maybe you should educate yourself about MS before you give me any commentary.” If the person in question, again a rude person, tried to give me advice about my medical condition… I ask them where they got their degree from, or to show me the study done in clinical trials about the ‘so-called’ technique or this ‘miracle diet’ I should try. I think one of the funniest (to me) responses I’ve given was, “Well you don’t look stupid… looks can be deceiving.” I think I actually have that on a shirt!

So I think how I would react to the statement would be based off of who said it. Good things about living in the south (Texas) is that I can tell someone that is being snarky, “Bless Your Heart” and they know to not talk anymore on the subject. Now how would they know that? It sounds like I was being polite to them… well, from where I’m from… “Bless Your Heart” is telling them to shut up but in a politically correct manner I guess.

There are times where I just ignore the person flat out, if they are being rude and make a comment. Because we all know that stress isn’t good for our MS, and we deal with enough of it on a day-to-day basis, why make it worse? But as most of you might know, I’m not really good at having a filter… even though I know that I don’t need to instigate anything further… sometimes my inner-child prevails and says to me, “Well he or she started it.”

Piece of advice… If you don’t like hearing any kind of comments in regards to “you looking fine” then let that person know in a nice way, how that can be taken in a negative manner to those of us with an invisible illness. Again, do this if you know that the person saying it meant no harm, and genuinely cares and was trying to be nice. If they were acting like, what I like to call a “Real House Wife”, then just go back to the 90’s saying, “Talk to the hand” lol

The bottom line is, there is no ‘one way’ for all of us to deal with the comments made in regards to how we “look”… it depends on not just the person who said it, but also our own circumstances. Sometimes you might need to bite your tongue, you can still go off on them in your head, right?

I honestly wish there was enough awareness about the affects of Multiple Sclerosis, where we didn’t even have to think about how to respond to certain comments made. Are these things said to someone (negatively) who is known to be battling a well-known disease? The answer is most likely no…. We need to have more awareness about Multiple Sclerosis in general. Do you know how annoying it is to have to explain WHAT Multiple Sclerosis is time and time again? Forget I asked, you probably DO know.

On that note, I’m going to end my ‘feeling’ towards this subject… maybe not completely, but for now. I did make a video for MS Awareness. If you want to check it out, click here.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**