People Say the Darndest Things

chronicWhen I was first diagnosed, I remember waking up from sleep one morning with an idea on my mind – You must write something about what people might want to avoid saying to someone with MS. It was such a clear cut idea, I got up and wrote the first draft – 3 things you shouldn’t say… . After about 2 weeks of working on it, I became bold and sent it in to Momentum which is the NMSS’s magazine, and they accepted it! Well out of this came responses from people and the editor of my piece was kind enough to send me some of them. I read them with a mix of awe, outrage and understanding. I think anyone who has had – probably any illness can relate to the at times strange suggestions of well meaning people, it doesn’t seem to get old. Last week I saw this list for the first time. It’s amazing to see that things haven’t really changed that much.

This is a list of comments that I have experienced personally:

Why not just take a nap if you’re so tired?

Ah, we all have lesions on our brains!

Have you tried this supplement? It works wonders

Maybe you should become a vegan

Have you listened to that woman’s presentation? She cured herself, I’m sure you could too!

You know, eating sugar caused this for you right? Sugar is the DEVIL!

I wouldn’t have pegged you to have MS (A doctor blessed me with that one, he didn’t seem to believe that minorities got MS… moving on)

My stepfather has Parkinson’s maybe that’s what you have!

You should lose weight, everything is better once you lose weight!

All you need to do is exercise more – you’ll be fine

What’s MS? Ive never heard of it, Is it something new?

If only you put your mind to it – I know you could do it (lift my leg)

And the kicker:

You should pray and ask God to forgive you of your sins, the MS might go away.
(Yes, that really happened)

Such comments have the potential to be hurtful, frustrating, and downright rude, but sometimes it doesn’t pay to return rudeness.

How to deal with such comments?

Well depending on the audience, it could be a teaching opportunity to explain a bit more about MS

A kind “Thank you”

A firm explanation of the alternative that you currently make use of (which is working for just fine for you)

Smile and nod, just smile and nod.

How do you deal with strange comments?

The Struggle is Real

5 mins I often wonder about this little sign. I first saw it a year or two ago, and I don’t doubt its truthfulness, I just like to have what backs this up besides my life :). Some people find it hard to believe that. They want “proof”. Cold hard facts!

One day in January, when we were having yet another snow event, I made up in my mind, that although I could not shovel, I would try to help my sister by at least throwing the salt down. I was so happy I was able to do the smallest part of the walkway, and then when I finished I remembered that I had to get back in to the apartment. By that point, I couldn’t walk up the stairs, so I crawled up the stairs – it happens sometimes. I got to the top step and still unable to stand and step in – I knelt into my home. I got in – victory! Only that I could not get up.

In addition to being terribly tired, I could not feel my legs, so I didn’t want to risk breaking something by just hurtling myself up, so I tried easing myself onto the couch, rolling myself onto the couch, hand pressing myself onto the couch…by the time one of the rollings (with help from my sister) worked, almost an hour had gone by. I remember while on the floor just marveling – all I wanted to do was help. That’s a cold hard fact!

 

To learn more about Multiple Sclerosis see the links at the top of this blog. To help find a cure visit:

The National Multiple Sclerosis Society

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It’s MS Awareness Month!

Happy MS Awareness Month! I will be sharing a bit more about MS as the month goes on. Something I have learned since my diagnosis is how little people know about MS. Even medical personnel find it a puzzle.
The more we can learn, the more we can teach!

This video is less than 3 minutes and is chock full of information. It’s been a while since it was first released, perhaps 3 years or so, and I think it’s safe to say that all of the numerical figures have increased.

I think, especially in this day and age, people have a difficult time caring if they aren’t affected. Unfortunate, but true. I don’t know how much I would know about MS if it hadn’t affected me.

You won’t be sorry you watched it!

MS Awareness is still a month Nationally– March but it’s celebrated this week here (NYC) I will celebrate MS awareness this month on my blogs. Where’s my orange shirt?

MS Support Groups

msgetsmynervesIn one of my MS groups a lady anxiously conveyed that her husband told her that she was using MS as an excuse and she needed to “get over it”. Hearing things like this bugs me to no end, because many people who do not have MS feel this way. They look at life the way they would live it in their non-MS state. And they tell people who deal with it every minute of every day how they should live and what they should do because if they had MS (which they don’t and have no idea what it’s like) it’s what they would do. They truly believe they can “out think” MS. If you believe you can out think MS -for your sake I hope you do, because I already know if you were to get it…

You may very well not be able to handle it.

 

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We are grateful for the support of our families and friends ❤ because most times they are going through everything with us, but sometimes there are family and friends who are not capable of understanding whats going on. Many times the support of others going through the same issues is not only important but necessary.

 

Find an MS Support Group Online or in your area

You can also find MS Support groups on Facebook and Twitter

 

6 Things I Need You to Know about MS

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6 Things People Need to know about MS

 

1. MS is Unpredictable – The way I feel is sometimes minute to minute.

2. MS can be depressing – this is true, and more than just thinking about how life can/might/will change. A lot of MS happens in the brain – it can effect our emotions.

3. MS is neither contagious or more of a death sentence than you have (I’m not buying this one to be honest with you. in many MS circles, you will see or hear – you can’t die from MS, you can die from side effects of MS…ok what am I missing? If I didn’t have MS I wouldn’t have that side effect.) This is what I believe, I’m not telling you that you must believe it, I’m not inviting you to an argument to try to convince me otherwise.

4. MS can be invisible – Fatigue, my most severe MS symptom is invisible, but it affects my life completely. I cannot just take a nap and be ok. I cannot keep up with you – talking on the phone can exhaust me. My MS is makes itself known if I’m walking – I need a cane now. If you meet me and I’m sitting down, you wont see much more than tiredness – most of us have that.

5. MS is a constant battle – Some of us reminded each moment of the day that we have MS

6. MS has no cure. – Not yet.

My life is different, but it is mine.