- Diseases, Disorders & Conditions
Having Multiple Sclerosis Can Be So Frustrating!
I am having a rough relationship with my disease right now!
The past 3 months or so have been the hardest MS months I have had in some time. Especially the past couple of weeks. I suspect this is due to the fact that I just made a move to the opposite side of the state, have been struggling with my finances, AND dealing with a dental problem--so my stress level has been high right at the same time of year when the temperatures begin to rise to that uncomfortable level. Other MSers understand how it feels when the heat rolls in and you just feel less and less like yourself. Maybe the quiz I took on Facebook that said the idea place for me to live is Finland was on to something, I suspect overheating would be much less of a problem there!
But I digress. The past couple of weeks I have grown progressively more frustrated by the cognitive problems I deal with in association with my MS (I am sure that getting older makes it worse as well). I am a smart person, and spent most of my childhood in gifted classes and programs. The librarians at the local library knew me well as I was in constantly to check out a new pile of books. There is not much that makes me happier than learning something new and reading books is almost always a good way to do just that. I was also always a fast reader, often finishing a book in a single sitting if it was so good I couldn't put it down, and they often were. In my teens and twenties if you handed me a Harry Potter book and I had a free day I would have easily been handing it back, finished, less than 24 hours later. In the past 5-10 years that has just been less and less possible, and it is worse during high stress and/or high heat periods. I just don't absorb what I read, I think that is the best way to explain it. I make it through a paragraph and I see each word, but I get to the end of it and realize I have no idea what I just read. This was most apparent when taking a test for school last week, I had to read most of the questions numerous times before I felt ready to attempt answering the question. And I sit here right now looking at the biography of Marie Antoinette I am reading, 10 years ago I would already be gathering dust on my shelf again, but I have been reading it for months because I keep having to re-read parts. It just infuriates me!
Another problem I have been having is with typing. I am calling it typing dislexia, and sometimes typing psychosis. I will be typing along, and mind you I was never a super speedy typist, typing with the home row and not looking never worked for me, but I usually managed 50-60 words per-minute with few errors if any--all typing hunt and peck! But now frequently when I look back up at what i have typed the letters in many of the words are jumbled even though I felt as if I typed them correctly while typing. Other times I will be thinking what to type in my head and look down and see that I have typed a different word here and there, kind of like you do when someone is talking to you while you type and you type a word they say instead of what you meant to type, except it is just me in the room.
But today's frustration is totally outside of me, today's frustration is with the outside world. I am a fortunate MSer, so far I have the use of my legs--most of the time even without a cane or assistance of some sort. But because of this, when you use things meant for handicapped people you get looked at like you are crazy, or rude, or both. Today, after having a lovely root canal I might add, I had to take the bus back home. When I got on the bus it was rather full and there were no open seats, and though I can walk my balance makes standing on a moving bus quite disastrous. I struggle with riding sideways (I have become far more prone to motion sickness in the past few years and need to look into a connection with MS, maybe the balance and/or vertigo aspects?), so I asked a teenage boy sitting in the first front facing row if I could please have his seat. He refused. I then explained that I was handicapped and he laughed and said I didn't look handicapped, just fat (and I am overweight though I have lost an additional 16 pounds recently). His friends and some others on the bus found this very funny, thus making this into a scene. So here I stand feeling a mix of anger and embarassment. Thank goodness this boy, his friends and the others laughing at the situation are balanced out in this world by kind people. Two (obviously well raised!) young men intervened and told the boy to get up, and then the bus driver asked him to get off the bus. All's well that ends well, and no permanent damage, but this has happened before and it just frustrates me. There is so much good in this world, but in some ways we have such a long way to go!