Monday, November 7, 2011

An attempt to answer a question.

I got my first comment and question and I have been racking my brain trying to figure out how to answer it. The question was "What can other people do to make someone with MS feel better?"
This question if I was asked in person would branch out in me having multiple follow up questions.
MS is such an individual disease that there is no one answer for any question regarding MS. Even something so broad as "Does MS suck?" would get a varying degree of answers ranging from "Yes" to "No, its made me who I am today" or some horse shit like that.
So how do I answer that question?
Let me try and break it down into sections or topics. I will just wing it as I type.

I am not very happy so there is not much that someone has been able to do to make me happy. I refuse manufactured drugs to make me "whatever normal". I am currently seeing a psychologist that has MS. That person has helped me a bit with being able to talk about the relationship and MS stuff that has happened this year.
So talking to someone, communicating with someone with MS can be very helpful.
I was given my diagnosis over the phone while I was alone. I had no one to talk to. It would have been nice to have someone at that moment.
My visits with the psychologist have been reduced to once a month after 3 months of visits because the Dr. feels that I am mentally better now than when I first walked in. I have to agree.
So communication is a must. Talk to the person or at least let the person know that you are available for them any time.
I get calls from some family members at least every 2 weeks and it's nice to hear from them, but they get the same bullshit every time that I'm fine.
-Knowledge. I cannot stress this enough. Know shit. If you are a caretaker for someone with MS, know what the fuck is going on. Know how the disease works and treatments for it. The girl that lives with me didn't know shit, neither did I, BUT I hit the net and learned everything I could. I asked her 5 months after I was diagnosed to tell me what she knew about it.. She couldn't tell me shit. She has since learned some of the basics. But it would be nice for her to start a conversation one day regarding some new treatment or something like that. I don't really even tell her what I know. I'm not a fucking text-to-speech program. She knows how to read. I won't apologize if that seems harsh, she is a smart girl who knows alot about everything.
-Humor. I really do think laughter is the best medicine sometimes. During some of my lowest of lows I found some humor to perk me up a bit. While it takes some really funny shit sometimes to get me to laugh anymore, its nice to see something try.  

Feeling better can obviously come down to purely physical reasons. Numbness or spasms can put you in a bad mood for the day or more. I know I would have nights of loosing sleep due to spasms or The Hug keeping me up and I was cranky the next morning.
There is not much outside help from this other than trying to make the person comfortable.
Being clear with the neurologist can help determine if additional steps are needed to deal with a certain problem.
I was not sleeping well, I would get most spasms at night and after a few tries I have been put on a medication that finally helps me sleep and deal with the spasms. (Zanaflex)
I recommend stretching throughout the day. I haven't started it yet, but Yoga is supposed to work very well. I got a Yoga for MS dvd for free from Biogen.
 -Sex.(if applicable) The physical branches out to stuff like sex. I just want to point out, when having sex with someone with MS, be mindful of how comfortable they are, and remember fatigue creeps up anytime, even when your having fun.
For a male the fatigue issue can be one of the biggest confidence/moral crushing things about MS and sex. To go from lengthy sessions of passion to end up in a couple mins of tiredness nothing is bothersome. Usually I cannot get off before the body is too tired to go on. That is frustrating on multiple levels.
(I never thought I would write about sex here but there it is. Maybe it will get a full post one day)

Ok, so I tried to answer that question but it seemed to go off the rails a bit there. Not very organized answer. Again that kind of question is answered with a load of questions. Above is a run down of some things I guess that helped me.
In short they are:
-Having someone to talk to which included family/friends and a psycologist
-Physical comfort. Its nice to have someone help when things are hard to do.
-Sex. Nice if done right.

I'm sure this list will get longer or I will have more to say after additional time to think about it, but on November 7th 2011 that is what's come to mind.


  1. Thank you very much for your long and good answer! I find it very useful. I thin it is very hard to watch another person suffer without being able to do nothing. And when you ask any questions they usually say "It will be all right" or something like that. And sometimes it is difficult to ask as well, because there is nothing much one can do about their pain etc.

    Thanks again!! And all the best to you!
    Keep writing! I will keep reading:)

  2. I know what your saying. This blog is here because that is my generic answer to my problems, saying that its ok or nothings wrong. There is nothing anyone can do for me.
    Talking about the real problems here at least gets them out of my head.

    Thanks for reading anon.

  3. I'm reading too. Very informative blog:) Thanks for taking the time!