My name is Eric J. Miller (Nittany on here) I have Secondary Progressive MS. I've been with this for the past 5 years. I know how it has affected me. I would like to hear from others in the same stage as me. I would like to hear the different ways we are dealing with it. I ‘ll be honest with you I’m not so well at dealing with it..
Dear Eric, Resistance causes persistence. The more I rejected the new world the more difficult my life became. Accepting the changes brought on by ms was my smart move. In doing so, the symptoms lessened, my days became easier and my life less complicated. Many of my prescriptions became unnecessary. When i broke my ankles I did not fight that I could not walk, I accepted it, rested and moved on to the new world unable to walk. Fighting ms is a noble gesture, but knowning when to fight is a trick. Some symptoms can be overcome by exercise, medication etc. others must be endured.
Losing most of the use of my arms and hands is an odd event for me. Some people, like my partner, have their brains hot wired to their mouth, not me, my brain goes directly to my hands, I have always used my hands to express myself, they have always served me well. Not using my hands is like cutting off my head, another loss to mourn, another link to the old me, lost, Oh well, as i become less and less productive I celebrate that i did use my time wisely. I lived hard and fast. I remember wondering why i was always moving so fast, always in such a hurry. Now, most of the time I sit and wait, for whatever.
Finding the harmony within is relevant everyday, what can i do, what should I do, what will i do, what is right to do, what am i able to do. Knowing what I am able to do is the harmony, not the dreams of what I want to do, wish i could do. Being at peace with the new me, the one that looks like a vegetable to me, the one that does little. The new who that i am. My new chair in the game of musical chairs.
Now I receive more than i give, tis my turn to be the recipient, to know what that life is like. to observe others sharing their wealth with me, as I once did for others. It is nice that others think well of me to share their time, their assets, their energies. When I gave easily and freely it was an automatic generosity, now I see it truly as a gift I am receiving, none I take for granted. Receiving is an uncomfortable seat for me, one I do not like, one i do not want but in my time if need, it is not one i take for granted. I do squirm in my new seat but am grateful for all the generosity and kindness. I hope i do not become an ungrateful wretch that makes the givers lives a struggle. i hope i will always be as kind to them as they are to me.
I 'm excepting my MS and were it has me. I was just wondering what other people in my situation is doing to bring meaning and happyness into there life. What kind of activites there able to do with thier spouse and others around then for interaction with people and have fun. I trying to chose life and once again adapt myself to the new me again!!!!!
What is helpful about this comment? Isn't there any sympathy or do we all just have to hear the same meaningless gibberish about accepting things as they are? Why does everyone benefit from one persons perspective? I am quite sure that my friend here was hoping for an actual answer, prefaced by I am so sorry to hear that you have progressed, not a rambling description of your life which clearly isn't what he was asking for. Maybe telling him to give in to it is just the push he needs to end it for himself!
Eric, I shared the way I was dealing with spms. I am happy that my situation is unlike yours and that you are able to venture around with others. Finding things to do with family that includes your limits is wonderful, and I applaud your wishes to be included. It is good that your world is expanding and you want to make it larger. I on the other hand, am making peace with what i have, which is the way I make it better. maria
My name is Amanda. I've had MS for 12 1/2 yeas. I read your bio and, like you, I started off with RRMS and after time passed changed to SPMS. The change happened about a month or so ago. I'm not going to lie; it sucks. I have broken down in tears because it gets tough sometimes. but have to keep going. Better to take it for what it is than lie down and quit.
I have found that Physical Therapy and massages have worked. I see many people diagnosed with MS do PT. I wrote a list of things that I want to do and I want to do them now before I can't do them anymore. I wanted to see a shooting star. I wanted to go to Disney World. I wanted to ride a horse (big mistake!) Now, I want to see the Sistine Chapel. I want to go to Niagara Falls. Just keep checking them off :)
It’s a pleasure to make your aquatints. I hear what you are saying about making and keeping your goals. I’m finding that the goals that I made (which seemed reasonable) are getting harder and harder to obtain. Maybe I set my goals too high. Now, I’m just happy if I can go through a day with keeping my emotions in check. If I can make it into my wheelchair and make it outside onto the rear deck to catch some fresh air and take in the outdoors for a while. I must say I am very bitter about progressing to this next level, Secondary Progressive, (which is odd, because when you’re playing a game or at your work place, you always want to make it to the next level) but I’m slowly realizing there’s nothing I can do about it. So, just like when I was at the R&R stage, I have to evaluate, adjust and overcome! But I’m finding this new stage very hard to attack with my normal attitude and creed. I have some great people in my corner but I’m still really struggling. My mental state of mind is in a bad decline. I can’t find any thing that makes me happy, I find I have nothing to look forward to, as well as nothing seems to bring me pleasure any more. I do realize I need to come to grips with this, I’m just not there yet. But, I’m trying to.
Eric, have you considered taking an antidepressant? I take 10mg cilatopram daily to take the edge off, me and my partner with declining memory and repeating ourselves.
I'm on an Anti-depressent and an Anti-anxiety pill. My Doc. did just adjust and change my Meds.. I'm able to get some sleep now. Still wigged out about life, but sleeping is good.
Maria, There you go with medical advice again. Where did you get your medical degree?!
But Maria, you posted under the webinar about anxiety and depression that YOU CHOOSE NOT TO HAVE ANXIETY & DEPRESSION! Why would you need to take an antidepressant if you have the choice not to be depressed? You demeaned all people with mental illness by saying that it is a choice, with no physiological cause. You demeaned people whose mental problems are CAUSED BY MS, and told them they have a choice not to have these conditions. And your judgemental attitude is the very first thing underneath the webinar announcement, making people feel bad about themselves just for needing help. Is is your purpose to drive people (who desperately need this webinar) not to sign up, since they have a choice to be like you and not need help. Oh whoops you do need help too it would seem.
Sleeping is good. Even if it is not the great sleep of pre-ms the body, mind and spirit will rebuild. The little pleasures are worth enjoying. Cant wait to hear from the rested you.
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Yes, tracy, we all need help! And I have not been doing this mindfullness long enough to free wheel it. As I stated in the THUNK discussion, we all have habits that have been inbred in us. We are so indroctrinated into how to feel we have no idea if they are our own or someone elses.
Wars have been going on since the beginning of time, but the current newsmedia tells us it is scary, and frightening. When they report the news tey tell usw how to feel about it.
Our parents controlled us with fear, do do that the boogey man will get you, dont do that you will get hurt.
It is not demeaning to say that these are not who we are, we have a choice to feel what we want about anything. Just because I was always afraid didnt mean that I would have to remain that way. Alternative thinking is a proccess of examining our thoughts and actions. Do we like being afraid, some are comfortable with the status quo, change is very difficult.
Fear of the unknown is the greatest demeaning thought our parents gave us, we have been doing it since birth, we think we own it, it is just a habit. I also mentioned in that post all the tools I have used to change who I am. I share how I am feeling better being responsible for me and offer it as an alternative. I did not say it was easy, nothing is.
I also shared that depression was mine too, and all i did was damage myself. The glass half empty was mine and it is still on a shelf for when i fall back to old bad habits.
If you feel demeaned because i suggest that there are other ways to look at things then you must really like where you are. I throw you are line to stop from drowning and you think i am insulting you because you are drowning.
Okay, you want to drown, my life sucks, i dont own anything, i have no savings, i am isolated away from from friends and family, i am no longer able to care for myself, i can not handle money, walking is very dificult, my hands are becomming useless, some days i can not even brush my own teeth, i must do my own cooking because there is no good food here, and even if i go out to dinner i must travel at least sixty miles which is more painful and takes a week to get over. And then there is very little i am able to do, i sit like a vegetable staring at the boob tube or laptop. i dont remember what i did yesterday. i can no longer do any of the things i enjoy, i cant even sew. i am a prisoner in my home and spend mounds of time alone. Some days i am suffering so much i hope i am dead sooner rather than later. There does that make you feel better. I took the half empty cup off the shelf just for you, do you like that better. I sure dont, it is so awful to me my eyes are getting cloudy and i feel depressed. I will do my best to shake it off, i hope i succeed quickly because it is a truly awful story and one i do not want to own. maria
Maria, I think your attitude is beautiful. You stay positive.
You're so awesome :)
I have just gotten into mindfulness. It's a stunning process. I'm consciously changing old habits. I am practicing at sleep hygiene now even though there are nights I really want to slip into the old pattern of playing on my iPad till the wee hours. I go to my office in the morning and read or listen to music instead of watching TV. Again, a choice to change my physical patterns in an effort to change my mental ones. You are right. We can't change what is, but we can change how we feel about it. I think sometimes joy is a scary thing because we know it's transient. Allowing ourselves to have it makes us fearful we will lose it. Or worse, when we're doing better, we fear others will stop seeing us. I'm in process of learning to slow my days, my moments, and let joy in.
I'm alittle stunned by the anger your response invoked. My father always said people have to be on the edge of learning, meaning that people have to be ready to hear you. Buddha is reported to saying that the teacher can only teach so far, that the last step has to be the student's.
Anyway, I appreciated your responses very much.
I was moved into the secondary progressive category a few years back. Mostly it's been a steady decline. Not going to lie, its a sucky hand to be dealt. I've had more then one argument with God about this.
A spot of hope on the horizon: a new drug coming out called Ocrelizamub (I think) specifically used to treat secondary progressive, the first of its kind. It's being fast-tracked through the FDA under the category of ground breaking. They report a unique drug profile of low side effects and an average 25% increase in fuction. Doesn't sound like a high percentage, but I keep wondering what's in that 25%; my walk? fatigue-relief? increased coordination? stamina?
I got on a list with my neurologist of people interested in trying this new Med when it comes out.
As far as what is helping day-to-day... My interests have become more sedentary. I listen to books on tape. I do graphic art on my computer. I play games. I meditate. I do go out with my hubby sometimes when my energy is up. I exercise. The MS Society is paying my membership to a specialized gym more in line with my needs. My fitness instructor (who has MS and is in a wheelchair) said something interesting when we talked about my getting fitted for a wheelchair. He said it may open some door that were previously closed to me because of my difficulty walking any distance. Next summer, I can go to festivals again! In the north, summer is an intense celebration and I missed it last summer because I couldn't imagine walking any distance. He also called me a "newbie" who'd figure out the obstacles as I go along, the scamp. He was teasing me good-naturedly, but it's true that we can't know what we don't know till we get there.
Despite some heated disagreement on this thread (that still kind of confuses me), mindfulness mediation has been very helpful. I've been in some dark places with this disease and I expect I'll be there again from time to time. I resisted meditation practice for a long time, afraid of experiencing happiness because it is transient, afraid of losing joy if I found it, or afraid people would forget that I am suffering and stop supporting me if I became a generally more happy person. But in the final equation, I didn't know what else to do. I was completely sick of being completely sick and tired and depressed all the time. If my genetics have anything to say about it, I'm not even half way through this life. Is this the way I really want to spend it? Here, like this? In this dark place?
I'm still new to the experience, but once I finally surrendered my stubborn self to it, I'm having some surprising results faster then I thought I would. I've been working my way through Awakening Joy by James Baraz. I've also heard people say prayer helps them (I suspect it acts pretty much the same way on our brains).
Be careful of the dialogue you're having with yourself. You are the voice in your ear. I believe in "fake it till it's real" and even if you don't believe it when you say it, be gentle with yourself. Show yourself some kindness and compassion.
This is life and we can spend it pissed off and sad all the time (and no one would blame us), but that's not much fun. And if we were being quite honest, we wouldn't be much fun to be around all the time either.
Edit: Sometimes I have to think over things awhile to make sense of it. This has been bothering me all day. I think I understand why mindfulness meditation was met with such skepticism and what it is your asking. You want to know how to get out more and have some fun, right? I wasn't drawing a clear line between meditation and getting out more. What I am discovering is that as I slow things down and become more aware of the moment, my current being instead of my fears of what might be, I am more motivated to try doing things. If I wake up one day and I just can't, that's ok, because that's transient too. Meditation isn't just about finding joy, it's about accepting things aren't always good and everything changes. it will be good again just as it will be bad again, just as it will be good again.
"If you imagine the worst happening and it happens, then you've lived it twice." Michael J Fox