Processing - Grieving - Accepting

I still am in the phase of learning to accept but I can say that for the most part I am closer to it than at any other time. It has been a journey and the hardest thing I have ever had to do in my life.

When I first got the diagnosis that I have MS, it hit me like a ton of bricks. I was told to read up information and get to learn it. I went home and brought out some of my old college text books and when I came across the section that was written on MS, I noticed that there were no notes scribbled around the edges of the text and no highlighting at all! Which can only mean one thing... it was a section we skipped over completely. I'm a fanatic for scribble and highlight but there are sections of the book are bare and I know that is because we skipped over it. I read what the text book said and in 1996 there was still so very little known about MS as compared to now.

Processing all the information on the internet, in books, talking to strangers on the phone, etc was just too much to deal with. Especially being a single mom and lying in bed every night on your own and wishing so badly that you had someone there to just hold you.

Then the greiving process of realizing this is just too much for anyone to jump in on. Does that mean I have to come to the realization that I am going to always be single now? Why do my children have to suffer because of what mom is going through? Why financially do things have to be so extraordinarily tight that my children have to miss out on things that others are doing (for example my daughter will not be able to go on the Washington DC trip this summer with her classmates because we do not have the money and I did not have the energy or time to help her raise the money etc). I guess I am still partly in this stage as well.

Yes, I am aware there are so many others out there who have it worse, who are currently experiencing horrific turns in their lives, but I was told that I need to stop diminishing what is going on with myself.

Some say to just deal with it and move on your not dead, etc. It is amazing how many people will say things that are so hurtful yet they are only being well meaning. For the longest time I smiled and accepted what they said and now I just want to cringe and scream inside when I hear stories that "so and so, and then there is so and so who all have MS yet they are leading wonderful productive lives." Yay! Kudos for them!! Truly I do mean that, yet I am tired of hearing it. Does that make me evil? People are just telling me that to give me hope, but then part of me wonders if they are saying it to also tell me "why are you making such a big deal?" Who knows, perhaps my moods have struck again and I am overly sensitive.

Yes I am quite aware of the woman who has MS and went blind and in a wheelchair for a period of time. I am aware she made the choice to go off all medications and just try a vitamin supplement (which she now sells as it is something believed by others as healing for many health issues) and now she is able to walk, see, and participate in every day life like there is nothing wrong with her. Kudos! Yes, I have talked to her. Everyone who finds out that I have MS instantly says "You really need to talk to her." I say I have and they ask me curiously if I have considered buying her product to use. My answer is that I did consider it but then I chose to keep with my MS medications and my neurologist at this point in my life as I am still young. Yes, I know she was a nurse for 20 years and has a lot of knowledge but it was her choice. They look at me like it is my fault that I am having issues when I have my "hiccups as I call them", but you know it is my choice. I want to scream. How do you get people to just lay off and if they want to give advice to please research the topic first.

Phew - is that a rant?

I am an advocate for MS research. I will not stay quite. I want to raise awareness. I want people to realize that this is out there. Of course I knew MS existed because my son's best friend when he was in grade school has a mother with MS. I remember going over to their house for very brief visits and she was in her bedroom the majority of the time. I remember seeing the wheelchair in the living room that she used intermittently. I remember never seeing her at any of her children's school activities, at the store, etc. I remember her talking of her church parishoners coming to see her because she did not get out. I also remember her as being a very beautiful petite woman. They moved out of the area years ago and I wish with all my heart that I could locate her. I want to say I am so sorry. I am so very sorry. I feel like a horrid person. I never asked her. I never had her talk to me about what she was going through. I took a blind eye approach. I went over to talk to her about the boys and never strayed from that topic. I never asked her anything. I chose not to learn. I never gave her advice because I never showed an ounce of interest in what she was going through. SHAME ON ME! I would do anything to locate her and just give her a hug.

I smile as much as I can and do my absolute best to keep a positive attitude. Except those days that I am mood swinging.... (smiles)