Having had MS for 17 years, my life has been greatly affected by this disease! What has happened recently, is that my speech has been affected for the past eight days. I noticed I was having difficulty talking last Monday night after my friend, Ami, left after coming over to see me because I am basically homebound. In the past two months since getting my motorized wheelchair, I have been out of my house a total of three times. Once to get my haircut, another time for an eye appointment, and lastly to accompany my son to pick out his Homecoming attire.
Each time I have left the house, I have to use my manual chair because I don’t have a vehicle to accommodate my motorized chair. My knee hurts every single time! My knee hasn’t stopped hurting for almost the past two years! But, the most frustrating thing affecting my life is my speech.
There have been times when my thoughts get muddled and my words get confused. I often times will point to something and say, “that” because I cannot think of the word I am looking for. When I can’t think of the word, I often will shake my head in an attempt to get my thoughts in order. It never works! MS is a neurological disease and that has been just something I have had to deal with periodically!
For the past eight days, however, this time, my thoughts are clear. I can think clearly but getting those thoughts to come out of my mouth is very difficult! Almost impossible! For the past eight days, during my most recent relapse, my symptoms have also affected my face and my mouth.
If feels like someone is pulling my eyes downward and my lower eyelids are drooping. My face feels very heavy and almost like I am wearing a heavy mask. My tongue has felt extremely swollen even though it is not. (I constantly will stick my tongue out at Sean and ask him if it’s fat!) During the day, my Mom will push my cheeks up when my face feels extremely heavy.
It’s most frustrating that my thoughts are clear and I can’t make them come out of my mouth. It sounds as if I am drunk and words are just garbled up. To try to avoid the jumble, I speak very slowly and sometimes I have to yell to get the words to come out. It is my extreme hope that this is temporary because if this is permanent, that is really scary!
This particular blog post has taken me A long time to, “write” because I have to dictate anything I “write” because I no longer have dexterity in my fingers to type into my phone.
When this first happened, last week, Sean told me that, “[my] voice makes [him] sad!” I agreed with him and told him that it freaks me out. He told me that it freaks him out too!