MS Frustraions

Warning! This is a venting post!

I have been going through a very difficult time with my MS and you know what? It is not so much the fact that I can't move that is bothering me. It's the way people react to me and things they say that is making me upset and makes me want to cry all the time.
People at work, for example, have made comments like "can't you get on some medicine?" then I tell them about some therapies and they say "well get on that and then you will be okay". No I won't be okay just because I am on therapy. It will not prevent any relapses! I try to explain that it will just slow down nerve deteriation and that is not the same thing but how do you explain something that you don't fully understand yourself. Then they ask "why are you limping now and you were not yesterday?" I wish I could explain that one too so I just say "because it is MS".
One very well meaning woman asked me if I am taking my vitamins or drinking enough milk. Again. If only it was that easy. Fortunately I had my bottle of One A Days in my office so I could show her that I do take my vitamins everyday and she knows I drink milk because I have asked her on more than one occasion to get me some milk while she was at the grocery store. I don't know why I felt like I needed to defend myself to her.
Then at church one girl saw Abel for the first time so she started asking about it. Then she made the comment that so many people say because they are confused with other diseases and do not realize it is an unkind thing to say "Oh yeah. My dad had a friend who died from that."
I wanted to walk away but chose to politely explain that MS is not fatal. In some instances it does cause complete paralisys but that is not the most common cases. No one has died from having MS. Then she asked why it was acting up now. I admit it is a very logical question and I honestly do not mind explaining MS to people. It bothered me because all I could tell her is "I don't know" but that was not good enough. So, I foolishly mentioned that the season changes are very difficult for me and that Spring tends to be the worste time of the year for me. That is the truth but it was foolish to mention it because then she had the idea that once the weather stabilizes I will be fine. So I had to say, "Not necessarily" which confused her more. Praise God we did not get into a medicine/therapy discussion. I might have screamed or cried or just left the meeting.
I think what really set it off on Friday was my grandmom stopping by to visit. I really wanted to be alone and she kept asking me questions that I did not want to answer because she says them with tears in her eyes. Nothing upsets me more than seeing people cry over a stupid disease that I cannot control and neither can they! First it was "Did the doctor put you on any medicine?" So I had to remind her that the doctor wanted another MRI before prescribing anything. "Well why is that?" "Did you have the MRI?" "When do you see him again?" "What is he going to put you on?" (as if she knows the difference). Do you ever stop to think that I don't want to talk about my therapy and by you asking this questions you've asked 100 times and are the only things you say to me when I have trouble that it makes me want to avoid you at all costs? Obviously my telling you I don't want to talk about it does not work! And, have you considered I don't want to talk about the therapy because it requires a daily injection I have to give myself?? Would you like to give yourself an injection every day knowing that it is going to make you feel sick and won't even prevent the MS from ever returning again? Next series of questions had to do with why I was goign to work late. Fist of all, why are you watching my driveway?? Secondly, because I cannot move my arm! Do you really think it is easy to get ready in the morning?? You know this. Why do you need to ask?
Then she goes and asks the worst question! Are you dating anyone??? How many times do I have to tell her I do not answer that question!! I don't tell anyone in my family if I am dating anyone!! She knows that!! And do you think I really want to think about dating when I am walking with a cane and can barely lift my right arm? That does not make you feel like you are the most desirable person out there.

I think what bothers me is when people thinking they have MS understood get annoyed when it does not fit into their ideas of what should happen and then they make comments to me like I am letting them down.