Some days it is really hard to put thoughts into words…..today I will try!!!!
I have thought about what to put in my blog for a few days….I have so many thoughts going through my head but today is different…….today I want to try and tell you what it is like to be in love with and married to a person with MS or Multiple Sclerosis. I was never exposed to any real disability issues growing up….oh I remember a few families in the neighborhood who had disabled kids but I never really questioned why they were the way they were……that is until they died so young from whatever disease caused them to be different from everyone else….it scared me to think about losing someone at such a young age and never really quite understood the impact that different diseases and disabilities had on a person and those who loved and cared for them……until now……you see my husband has MS…..he has Secondary Progressive, which is characterized by progression of disability from onset, with no, or only occasional and minor, remissions and improvements.
I find every day is a challenge in one way or the other. Rolands symptoms vary from day to day and he has his good days and bad days. Today is another bad day for him, the weakness, feeling overly tired and just wanting to stay in bed….and so I encourage him to do that. Some days I find myself feeling overwhelmed with his disability and find it hard to cope. Roland told me from the very beginning in 2009 about his disability so I knew what I was getting into, although some in my family thought me crazy. We used to get out and do things and enjoy nature and taking pictures, but it makes me tired to get him ready to go anyplace…..so I choose to stay home. I am afraid to leave him for any length of time….the fear of him falling and laying on the floor with no help….so I only occasionally step out and go next door for coffee….just to get away.
It is so hard for me to think about how he is now, with this debilitating disease racking his body. I sometimes just wish that I could take his pain away, even for just one day so he could enjoy being pain free and being able to get up and walk like it used to do…….but I know I can’t do this for him. Seeing him suffer like he does takes a lot out of me and some days I get angry and lash out at him……its not his fault but there is no other outlet for me. I find my release playing MMORPG’s like Star Wars: The Old Republic. I find it hard to understand how people can turn their backs on someone when they find out they can no longer do the things they used to do. I find this happening with him a lot in the last two years. People who are supposed to be “friends” are no longer there…..why? Are they scared the MS will rub off on them? Sometimes I just want to scream at them and tell them “look what you are doing to him by acting this way!!!” Even his own family sometimes….I just don’t think they understand what is happening to him and why……..yet they make excuses about why they can’t come and visit him here at our house…..they want him to meet them some place……I really wish they could all understand……what he goes through day after day, week after week, month after month, year after year.
I try to encourage him to write to keep his mind fresh so it doesn’t turn to mush……but it seems like in the last few months he has trouble saying the words he wants to speak…..oh the words are there…..they just won’t come out the way he wants them to. I asked his MS Nurse what do I have to look forward to because it scares the hell out of me to think of him leaving this world……she said the MS wouldn’t take him but the complications can and will……..eventually……I hate the thoughts of losing him…..after all I have buried two other husbands…..one to a massive heart attack and one to cancer……and I surely don’t want to do that again…..not now…..and those thoughts scare me……..all I want is to share my life with someone and be able to sit and watch the sunset together……….but Roland and I promised each other at least 40 years…..so we have about 37 more left to go!!!!! I just hope and pray that whatever higher power is out there will give me the strength to carry on when I feel weak….so to answer that question about what it is like to be in love and married to a person with MS…..we have a very loving relationship that no one can ever take away from us…..it is sometimes frustrating, there is anger, and there is the being scared of what is to become….but until that day we will live each day like it is our last!!!
So until next time from the Duskweald………..