Zanaflex seems to be working well. I am still on the titration schedule of just taking one before bed. It knocks me out quick and I sleep through the whole night without waking to spasms. Seems that these good nights of sleep are helping me get up about an hour before I used to because I am sleeping through the night. Legs do feel a little weak in the morning. Zanaflex is known to cause muscle tone issues over time so I will need to ramp up my work outs to counter that. After 2 weeks of taking Zanaflex before bed you can start taking it in the day, but I probably wont as long as I have some pot to smoke. I don't normally smoke during a work day. Maybe on a slow friday or if I'm hurting real bad. Most of the time I will just wait until I get off work. Its not that I get so stoned I can't work. I just like to feel as sharp as possible when I talk to customers. I already have some cognitive issues at times, don't need to add to it.
I have a post regarding relationships and MS in the works.
Friday, November 11, 2011
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.
Communication
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.
Physical
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
-Laugh.
-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.
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.
Communication
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 "
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.
Physical
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
-Laugh.
-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.
The Wall (aka ticket prices)
What a disappointing morning. Roger Waters is doing The Wall tour again this year, last year he did it but I was in the middle of moving when he came to a city nearby. Presale started today and the cheapest tickets are $115 each. I just cannot afford that.
Last two times I saw him they were $25 each but they were lawn seats at an amphitheater. Because of all of the theatrics involved in this tour, it's all indoors.
A couple of my favorite memories are while going to see Roger Waters. I saw Waters with my dad when I was about 17 and that was nice, and I smoked Pot with my mom the first time at a Waters concert sometime in my 20's.
The last show was nice, I bought tickets for my parents (and gf) and we all went. Waters was doing the Dark Side of the Moon tour. Aside from all of the college kids there getting smashed and loud it was a nice concert. One of the last times my parent's seemed happy together before their divorce years later.
Over the years I tend to miss out on a concert for one reason or another and can't shut up about it later in life.
There are only a few that really stand out. When I was 16 or so The Black Crows with Jimmy Page were on tour, and at that same venue The Who was playing the next night. Ugh I wish I could have made those two nights. I was willing to sleep in my jeep at the time if I could just pull together the money. Busing tables and washing dishes at the time wasn't paying much.
I also skipped going to see Jethro Tull do an acoustic/electric set. That was right around Christmas and couldn't get the funds together.
And recently I missed Johnny Winter play at a small club. That was due to not walking well and unable to stand for any extended amount of time.
Last two times I saw him they were $25 each but they were lawn seats at an amphitheater. Because of all of the theatrics involved in this tour, it's all indoors.
A couple of my favorite memories are while going to see Roger Waters. I saw Waters with my dad when I was about 17 and that was nice, and I smoked Pot with my mom the first time at a Waters concert sometime in my 20's.
The last show was nice, I bought tickets for my parents (and gf) and we all went. Waters was doing the Dark Side of the Moon tour. Aside from all of the college kids there getting smashed and loud it was a nice concert. One of the last times my parent's seemed happy together before their divorce years later.
Over the years I tend to miss out on a concert for one reason or another and can't shut up about it later in life.
There are only a few that really stand out. When I was 16 or so The Black Crows with Jimmy Page were on tour, and at that same venue The Who was playing the next night. Ugh I wish I could have made those two nights. I was willing to sleep in my jeep at the time if I could just pull together the money. Busing tables and washing dishes at the time wasn't paying much.
I also skipped going to see Jethro Tull do an acoustic/electric set. That was right around Christmas and couldn't get the funds together.
And recently I missed Johnny Winter play at a small club. That was due to not walking well and unable to stand for any extended amount of time.
Life on the Road
I always thought as a youngin' that it would be fun to do some RV traveling but as I have gotten older I have gone from always wanting to drive on trips and skip the airport bs, to not wanting to make some trips period.
Took a 12 hour trip this weekend (6 each way) and it was very hard to sit in the car that long. Made stops every 2 hours each way to stretch and move but trip was painful. My back is throbbing in pain. Seems like I can feel my heart beat in my lower back. I have been on a regular schedule with chiro and luckily have appointment today.
Got to visit with some family which was kind of nice except an uncle was put in hospital Friday while he battles cancer, so half the family was at the hospital and half at his house and would rotate to keep the traffic down.
Despite the situation it was nice to see some family for the first time in years. It became clear I do have some cognitive issues, I had a hell of a time remembering some names.
My MS was only brought up one time, I quickly spoke about it and changed the subject. I was standing over my Uncle that has less than 3 months to live. Seemed like bigger things were going on.
I was disappointed to see Alabama lose to LSU18 6 to 9. Bama beat themselves with 4 (5?) missed field goals. Oh well, it's just a game.
Got my first comment on a previous post. Of course I got a question that was tough to answer, it was roughly based on how you can make someone with MS happy/unhappy. Its a good question, and I should be able to answer having MS... but I am drawing a blank. I haven't been able to pinpoint in my life what makes me happy/unhappy (to an extent, some things that have happened are glaring issues but unrelated to MS). At this second I look at my old dog sleeping and snoring in the chair next to me and I guess that makes my happy but it really seems temporary. I turn my head and I am faced with the reality of having to work to survive. Having back, leg and arm pain. Numbness in various parts. It goes on, and with every step I have a monkey on my back reminding me of MS.
Since I have trouble pointing out what makes me happy I can probably point out what makes me unhappy easier. That will be another post. What I will probably do is just list what this girl has done wrong to me and that will answer some things. But that would be a waste, its simple common sense stuff like don't cheat on someone, or endlessly lie to them, and if they have MS with various issues, don't tell them they are making it up.
Took a 12 hour trip this weekend (6 each way) and it was very hard to sit in the car that long. Made stops every 2 hours each way to stretch and move but trip was painful. My back is throbbing in pain. Seems like I can feel my heart beat in my lower back. I have been on a regular schedule with chiro and luckily have appointment today.
Got to visit with some family which was kind of nice except an uncle was put in hospital Friday while he battles cancer, so half the family was at the hospital and half at his house and would rotate to keep the traffic down.
Despite the situation it was nice to see some family for the first time in years. It became clear I do have some cognitive issues, I had a hell of a time remembering some names.
My MS was only brought up one time, I quickly spoke about it and changed the subject. I was standing over my Uncle that has less than 3 months to live. Seemed like bigger things were going on.
I was disappointed to see Alabama lose to LSU
Got my first comment on a previous post. Of course I got a question that was tough to answer, it was roughly based on how you can make someone with MS happy/unhappy. Its a good question, and I should be able to answer having MS... but I am drawing a blank. I haven't been able to pinpoint in my life what makes me happy/unhappy (to an extent, some things that have happened are glaring issues but unrelated to MS). At this second I look at my old dog sleeping and snoring in the chair next to me and I guess that makes my happy but it really seems temporary. I turn my head and I am faced with the reality of having to work to survive. Having back, leg and arm pain. Numbness in various parts. It goes on, and with every step I have a monkey on my back reminding me of MS.
Since I have trouble pointing out what makes me happy I can probably point out what makes me unhappy easier. That will be another post. What I will probably do is just list what this girl has done wrong to me and that will answer some things. But that would be a waste, its simple common sense stuff like don't cheat on someone, or endlessly lie to them, and if they have MS with various issues, don't tell them they are making it up.
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