You Don’t Get It… Till You GET It

You know how frustrating it is, when someone comes to you that does not have Multiple Sclerosis, or any other chronic illness, but tries to compare what he or she is going through to what we are going through. It’s annoying, at least for me. I know that I’ve touched base on this a few times in the past with, “You Can’t Compare”. However, I feel this is something that I need to touch base on again.

I’ve heard it all before

I wanted to write this article in more of a ‘scenario’ way, sort of like what someone says to you, and what I’m thinking in my head but try not to say out loud so that I’m not being ‘rude’.

  • “Oh! I get muscle cramps all the time too! They are such a pain.”
    • No, muscle cramps and dealing with spasticity caused by MS is NOT the same thing. There is no comparison. I wish it were just a muscle cramp that I had to deal with.
  • “I can’t sleep either, it’s so annoying. I am running off of so much coffee right now!”
    • Yes, not being able to sleep is very annoying. But the cause for the lack of sleep is most likely very different. I can’t go to sleep because of the pain that I’m in. And there is no way that coffee is going to help me the next day.
  • “Oh girl! I don’t know where my head is at half the time either! I can’t remember a darn thing!”
    • Yes, forgetting things is very annoying. But having to deal with cog-fog aka cognitive impairment is something completely different. This doesn’t just affect our memory, but many other things in our daily lives as well.
  • “Girl! I hate bras too! They are the most annoying things ever!”
    • True statement, they are pretty annoying. But when you wear once, it’s just that… it’s annoying. When I wear once it can bring on the MS Hug along with spasticity, where it feels like my insides are squeezing me in a bear hug.
  • “I don’t have any energy to do anything today either! I just want to be lazy!”
    • Having no energy for just one day out of so many, is not that bad in the grand scheme of things. But everyday having to deal with this chronic fatigue that is trying to keep you down when you don’t want to be ‘lazy’, you want to get out and do things. There is no comparison between being ‘tired’ and having ‘chronic fatigue’.
  • “My legs fall asleep all the time and it’s soo annoying to try and walk after that because your leg feels heavy.”
    • Yes, it is a horrible feeling for your legs to ‘fall asleep’, the numbness & tingling. But for those who do not suffer from a chronic illness like MS, the feeling comes back for most. I haven’t been able to feel the bottom of my feet and tops of my toes for I don’t remember how long. Also, that heavy feeling of the foot, it’s a constant for a lot of people with mobility issues due to MS. Not to mention the random spouts of numbing/tingling that comes on with no warning.
  • “Oh man, I hate it when my vision changes too!”
    • Yes, it is a common thing to happen to many people that are ‘healthy’, however, we usually experience drastic visual changes that can cause double vision, blind spots, dizziness & vertigo. I would love to only deal with ‘normal visual changes’.

Bottom line

These are just some of the recent things that have been said to me, when someone is trying to ‘relate’ to my MS symptoms. But the bottom line is, you don’t get it, till you get it. Meaning, you will not understand exactly what I’m going through unless you, yourself, getting diagnosed with MS as well. Which I’m hoping does not happen to the person making these comments either.

Some people just want to try to relate to us, and I can understand that, thank you. But there are others, those people that try and ‘one-up’ everyone else, that always have to have been there done that as well.

No one wants to deal with these symptoms, but we also don’t want what we’re going through to be categorized as something many others deal with on a daily basis that are ‘healthy’. Because there is no comparison… by making the comments like the ones above, you are making it out to seem like we are overreacting to our illness, when that is not the case. Most of us usually try and ‘hide’ what were going through from others, and just respond with “I’m fine”, when asked how we are doing.

xoxo

Ashley Ringstaff

(click on my name above for ways to reach me, etc.)

**Originally Published on MultipleSclerosis.net**

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Disability Discrimination Part 2

Have you ever had someone look at you, and not believe that you have Multiple Sclerosis, or something similar? Have you ever had to show proof that you are, in fact, considered disabled, due to Multiple Sclerosis? I’m not talking about showing proof where it’s required, but just in your local community, with people you are around.

This is something that I have had to deal with in the past. If someone doesn’t know that I have MS, and they are around me in a conversation, and my husband asks me if I’m feeling okay, do I need to rest, etc. They first off think I’m sick… but when they learn I have Multiple Sclerosis, the face they make when they hear that coming from me, can be pretty comical at times. They give me this look of shock, some of the time. Full on jaw dropping sort of shock, where you know they are thinking, there is no way that is true.

Discrimination and Disability

I never thought that after I was diagnosed with Multiple Sclerosis, that one of the things that I would deal with is being discriminated against due to a disability. I never thought that I would deal with people just trying to sell me bogus ideas, or judge me. There is a long list I’ve made in the past on what NOT to say to someone with Multiple Sclerosis. Click here to read that list.

Anyway, in today’s society you hear about discrimination against race, gender, religion, etc. However, you don’t ever hear the disabled brought up in regards to discrimination. Why is that? Is it because it doesn’t exist? Well for me, unfortunately, it has happened on multiple occasions. Getting told off for using my handicapped-parking placard when it’s 115 outside at the grocery store… Not being able to walk a straight line, due to vision/vertigo and gait issues. Being told I’m just lazy, or I’ve had too much to drink, and that I’m not really disabled really hurts. I didn’t ask for this, it’s already hard as it is, and people just add to it with their judgments.

Not just physical symptoms

For being called ‘retarded’ because my cognitive function is not ‘normal’ and I can’t think of easy things like I used to or I’m not able to understand a simple sentence. When I’m not able to get the words out of my mouth, which I have formed in my brain. Being made fun of for that is just despicable. I don’t have control over how my body is affected and being treated like I’m the cause of the problem, that I did something to be this way, is just very hurtful.

When I was using assistive devices, I felt like I was being discriminated against. I’ve had notes left on my car for parking in the handicapped spot. I never told anyone this, but one time I needed to use a scooter that was provided by the local store and I was asked to leave for abusing the store’s property. That the scooters are not there for joy rides. Now, when I get emotional in any way, my thought process does not want to work correctly either, so I just sit there dumb founded, not able to even come up with a response.

People are quick to judge

I’ve come to the conclusion that a lot of people are just really judgmental, and are quick to jump to assumptions without even knowing any facts at all. Just because I’m in my late-20’s and “look healthy” doesn’t mean that life is perfect and I don’t have any issues. This sad part is, that the reason people believe that I might be ‘abusing’ a handicapped placard, or an assistive device, is because there are people out there that DO abuse these things. So the people that are actually in need of these things suffer the consequences of people that have poor judgment.

I don’t really know if this could be classified as discrimination or not, but do you understand what I’m talking about? I have to carry my handicapped permit with me when I’m out and about, in case I get confronted assuming I’m abusing the system.

Not only that, but I have to deal with the emotional effects of any sort of confrontation, which in turn causes issues with my MS symptoms. I get fatigued, I get a migraine, and I get weak. Because I used all my energy I saved up to go out in public, and had to use it on defending myself, instead of completing what I set out to do in the first place.

I’ve just realized that I’ve already written about this issue a while back (sorry, memory issues) but I believe that this is something that needs to be brought to the attention of many people. To read my previous article on this topic, click here.

xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net**

My Apologies

As I was getting to my computer so I could sit down and write this, before I forgot, I made my first apology. I apologized to the end table that I repeatedly run in to with my toes. Yes, I am now apologizing to it, because I feel that I have caused it a lot of damage for jumping out in front of me all the time.

Now, on a serious note, I wanted to write a big apology, for those I have been abrupt with, rude, snippy, etc. Since I can’t remember things I have said or done to everyone I have come across that meant well, I just wanted to write one big apology and try to explain why I reacted the way I did.

I’m Sorry for…

To the person that saw me struggling, trying to do something over and over again with out being successful. You offered me your assistance, and I replied with an attitude in an angry tone, “No I got this.” I’m sorry. Please know that my response and emotions at that time were not directed at you, but towards my MS. MS has robbed me of many things since being diagnosed, and I continue to fight it, trying to prove it wrong, trying until I can do what I want to do… even if that takes me over an hour to accomplish a pretty simple task, like lacing up a shoe.

To the person that insisted on getting up to get something for me, when you saw me struggling at the end of the day, to get up and get moving after finally sitting down. If I was rude to you after you offered, I’m very sorry. My emotions were not directed towards you. I’m mad at myself, my MS to be specific, for not allowing me to do what I so easily did before. Things people do so easily without a second thought or struggle. My reaction was probably a bit of jealousy also.

To the person that genuinely offered their advice and/or opinion to me, with true care and just wanting to help me out. I’m sorry if I was rude to you in my response or showed that I did not care what you were offering to me. I am very grateful that you care, and my reaction was not meant for you. It just so happened that I had dealt with three other people that same day, but they were trying to sell me a ‘miracle cure’. It’s hard to be told so many things by so many people, that don’t really realize how much they are getting your hopes up with their ‘opinions/advice/products. It’s hard to want to try something new from advice or suggestions that were given, when I have done so in the past, and ended up disappointed with no result.

To the person that told me, “but you look so good” or “you don’t look like you have MS” while being 100% genuine about it, thank you. My sarcastic response was uncalled for and I apologize. Unfortunately there are people out there that gain their self esteem by being rude and/or sarcastic with their comments, and it has caused me to be on guard. This isn’t your fault, and thank you for caring. (For some insight on what people with MS have to hear from people that are not genuine, click here. If you are a loved one and/or caregiver to someone with MS, and are wondering what you SHOULD say, click here.)

Also, I’m sorry to my loved ones.

I’m sorry that you have to live with MS, because of me. I know I didn’t ask for this, but neither did you. They say there are so many people in the world that have been diagnosed with MS, what about a number of how many people have to technically LIVE with MS, by having a family member or frienddiagnosed. I’m sorry to my loved ones, for not being the person I used to be, and I thank you for still sticking around when others left.

Finally, I’m sorry to everyone else that has to live with this ugly disease, or any other chronic illness similar to it. I wish none of us had to deal with the pain and struggle that comes with a chronic illness. I’m sorry that I can’t be there to support each and every one of you, when we all deserve the most support we can get.

Living with Multiple Sclerosis and other illnesses is not easy. It’s a battle that you have to fight each and every day. Because of the constant battle, we are at times frustrated, angry, upset, emotional, etc. I’m not trying to use this an excuse for my behavior, but I am trying to help you better understand our point-of-view.

xoxo

Ashley Ringstaff

**Originally Published on MultipleSclerosis.net**