Thursday, February 11, 2016

3 Reasons why I have a hard time in public with MS

MS and Living Life
Hey, There!

Last night I went to my first WW, (Weight Watchers) meeting in like two years. I was very apprehensive to go.  I had mixed feelings while I was on this twenty-minute drive.  I was feeling very unsure and may be experiencing a little anxiety.  

First of all, that I had to go to a "meeting" just to get this weight off that I gained due to my trial medication for depression. I had been going to Weight Watchers off and on since 2004.  Feeling disappointed in myself that I couldn't lose this extra weight on my own.  In turn, telling myself that; "I shouldn't be so hard on myself. That going to the meetings in the past gave me friendly support from others who want to lose as well. The local meetings did actually help keep me more accountable. 

Secondly, I knew there was going to be a new leader and well as new members. ---- New members? ------ Thinking, that there will probably people going that I had known from the past years. ------ Yes, maybe a little anxiety was going on? Living in a small northern Ontario community, everyone knows everyone. 

Let me explain why I was getting freaked out a little. You see, since my last major relapse. In which I got my original diagnosis of MS, this Monster had also taken parts of my memory.  In scenarios like these, it takes remembering who people are or were. I always see the face, but to remember who and where they lived? How were they apart of my life in the past? Well, the MS Monster has taken a big part of that memory from me. Remembering things that took place, people I once knew and sadly, sometimes even people I have recently met.

Sometimes, I do feel comfortable saying; "I am sorry, but how is it that I know you?  I recognize you. However, I just can't place how I know you?" Which sometimes in these cases, the situation goes downhill quickly.  As the person has no idea that I have progressed in any illness and becomes questionable. You can see the disappointment as  they showing discussed in their facial expressions. Often not even realizing it.  All due to the fact I can't remember them and I should. Oftentimes they quickly expose our dealings and that they were a major client of our families business in the distant or recent past. Sometimes it hearing their story tweaks my memory.

Ninety-five percent of the time I feel embarrassed and upset because of their unknown reaction I had seen.  Not only with myself not being able to remember, but their own reaction of feeling unimportant.  Then I explain why I don't remember them and apologize to sooth their quick judgment. 

Trying to ease the situation, their reaction is to brush it off as though they too have memory issues and that it is all a part of old age. Then they openly explain how we know each other. I have learned that when this happens it is their lack of knowledge of the disease itself and see that they are the one feeling bad. They by saying this are only trying to make me feel better about the whole situation.  Making others feel bad is never my intention at all.  These moments are the ones that make me feel most uncomfortable with having this MS Monster living within me. Other times introductions and meetings go smoothly without incident which comes to such a big relief to me.

Thirdly, when I am out there are when a few people find out what it is that I have they automatically think of someone they know who has Multiple Sclerosis. Then quickly spits out negative comments. I am now aware that they think they are trying to make me understand that they know what it is that I am going through.  Little known to them, that they are only just hurtful and negative comments.   Saying things you should never say to someone with MS.

Comments like: 
  • "But you look so good, how can you be sick?"
  • "You're not in a wheelchair or have a cane yet, you are doing so good!"
  • "I know someone with that and they are; in a wheelchair now, can't talk, and now needs extra care." 
  • "So and so died from MS."
  •  "My nabour has that and she now can't drive" or "lost her job because she can't work." 
  • "All you need to do is eat better and exercise"

  • "Did you hear about "so and so" they were cured. Why don't you try what they did?"

Knowing their intentions are not meant to be, curl or mean.  However, each case of MS is different.  I understand that they many are truly trying to be nice. Only trying to make me feel that they understand what I am going through and not alone. Speaking for many others with MS these comments are actually offensive. 

I use these moments to try and educate others on what Multiple Sclerosis is and how far they have come with gaining knowledge about it.  How close they have moved toward finding a cure for Multiple Sclerosis.  I also reassure them that those of us that are our own advocates of MS are on top of the research that is happening at any moment of any time.  Most of us who have MS, know more about what we have, how to manage it and what new treatments have come available then our own family doctors.  Keep in mind.  Our family doctors don't just specialize in one illness but help treat many illnesses.  I am truly grateful for my family doctor and her staff, as they are always there for me and are quick to help when I am having MS issues or a flare-up.

In conclusion to my first meeting. I feel that it turned out well.  We had enough people join that our meetings could run until the middle of April.  Sad that I had to pay for my meeting membership even though I had an online membership.  I did see a couple women that I do know and hadn't seen in a long time. I also got to meet our new leader, who seems quite nice and positive. She is more than willing to answer questions and help us in any way. I am looking forward to our next meeting in a week. 

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