networking

In the past couple months I’ve turned to social media to find people in the same situation as me.  I created a separate twitter account that only follows MS groups or people that have MS.  Luckily there’s a popular hashtag of #msSucks and it’s easier to find the others.  Making these new friends has lifted a lot off of my shoulders.  There are days when I’ll post my mood, pain, or other issues and someone always replies with “I’ve had that before” or “feel better!”.  Knowing that I’m not the only one with this disease and going through these things makes me feel a thousand times better.   

There was one day when a client was in my office talking about how his 40 year old daughter was just diagnosed with MS and I piped up and told him I had it as well.  He just stared at me and said “but you look perfectly fine!”.  I was so angry when he left – if he could just walk a day in my shoes and realize that I really do struggle.  This morning for example, my legs were so stiff that it took me twice as long to walk to the bathroom.  Or last week I fell over trying to take off my shoes because I lost my balance.  Even on the weekend I couldn’t sleep because both my hands & arms wouldn’t stop tingling.  Walls seem to jump out at me and the floor is never even so I’m always tripping and bumping into walls.  Plus I'm constantly tired and have no energy when I need it.

The thing that frustrates me the most is when people make up excuses for me. For example when I complain about being tired, people often respond with "well it was a long day" or if I'm stiff in the morning they'll say "you just pulled a muscle" or "everyone is like that".  My favourite for when my leg was numb someone said "you're just sitting on it so it fell asleep" - for three months??? They take for granted how hard it is for me to function at the same level as them.  I don't like going around complaining to people all day and I want it to seem like I live a normal life...