This Is MS Multiple Sclerosis Community: Knowledge & Support

Depression, MS & Me



My psychologist recently told me I need to redefine myself internally. I am trying unsuccessfully to do that. I felt the need to put something on paper regarding my current state of mind. Here goes:


Multiple Sclerosis – Since my diagnosis in 2001 at the age of 31 I have been progressively getting worse with multiple symptoms that affect my balance, strength, coordination, vision and hearing. At first they were mild and usually abated after a time. Now I always have at least two or three active symptoms on top of a constant headache and dizziness.

I feel like MS is eroding the core of my being. It is as if MS has taken the front seat as the driver of my physical and emotional state. I find myself tossed into an abyss of darkness where I have lost my very soul and identity.

I have always been an active guy who enjoys surfing, snowboarding, biking, hiking and going to the gym. Now my physical prowess is lost. I have little coordination or strength and I can no longer do those things. I am beginning to have difficulty in the simple things like walking.

On the emotional level I am even worse off. I have lost all of my confidence in life and the future. I was a very happy and carefree person. Now I have turned into an irritable and grumpy man. I no longer have any true dreams for achievement or the future. My vision of walking down the beach holding hands with my wife as an old man is gone. I believe that I am destined for a life of unfulfilled hopes and dreams. I have lost my passion for life itself. To quote a famous author - Oh death where is thy victory?

As far as my identity goes I have lost that too. I have always seen myself as a masculine guy who can protect his wife and provide for a child. Now I question who I am and what I am capable of. It affects how I see my self, how I see others and potentially how others see me. I am inching toward not being able to perform my job which is fairly physical and my interpersonal relationships are fading. I will probably never be a father.

I am searching for my internal flashlight. Hopefully as I fumble around in the darkness of my of my soul my attitude will change, or innovation will reign and I can come back into the sunshine of life. For now I remain lost, cold, and surrounded by darkness.


G

..

Thanks for the reply Bob,

I was reading all the posts on Vit D yesterday and thinking, wow I have been exposed to the sun, a lot, all my life. I have the sun damage from surfing to prove it Plus guzzling jugs of D fortified milk since birth. Well there is always the outlier.

I appreciate your comments and support mroe than you know. I will try to keep up hope, or at least faith.

Thanks again!!

G

Hello Mr Grumpster, I sincerely am sad to hear about your condition and the way life is treating you at the moment, I too have been fighting with mr MS for couple of years now, I am 27 now, use to play footie, skiing etc and unfortunately I havent been able to do alot since I got muplicate sclerosas ...

I am not here to bull#@$ you, I know that years are flying by and we are missing and are going to miss alot of episodes aout there, however I have found some ways to get out of the darkness ... with the help also of people that love (parents, brothers, friends and cousins). I have been able to socialize more with people and think of how important life is around people and not around things (material).
I am trying to bind more to people in generally and get out any anger and hate etc mostly by praying !!
Praying to God for a better future everyday will make a positive impact on your future, praying has helped me alot (and I mean that , why shouldnt it help you).
For example I pray to God to thank him that I wasnt born in Irak and it doesnt matter that I have this disease as long as I can be useful to the society I live in, be around the people I love and hopefully make a family if I deserve one. (yes we MSers can have families!)

Get some positive energy asap!

_________________
an action brings..... a reaction !

grumpster,
can understand how ya feel about all that...i have kids and there are days i have were i look at them and hope i will be able to remember everything thats has happened in their life.. its scarys me and worrys me todeath....has this all changed my inner self....it would be stupid to say it hasnt.....i mean how does this not affect you on the inside and out....i just think every morning that i am happy i can get out of bed in under 25 min....i look at the little things that are going well for the day..thats the best way for me...now am sure it will be different for everyone..but that is how i deal with it..that and i would in the health care feild..so for me seeing the men and women who come in to the clinic who have cancer taking over thier bodys and are still amazingly so postive even if they have been told they only have a couple of months left......asked one of them one day how they stayed so postive....they smiled and said cause of thier family and friends....unfortanlty they have pasted away..but up to that week they were always with a smile on their face..so i think that helps my outlook on this disease.....i could have something much worse..not that this isnt horrible in its self but there some out there that are so much worse...try and stay postive....wake up in the morning and look over at your wife and be happy ya have a wonderful women next to you who loves ya...go for the little things for each day....the sunrise...things like that...hopefully that helps...but i hope ya find yourself..and have good holidays..

chris

_________________
waiting for answers

Hi G:

I read your post yesterday and have been thinking about it ever since. I was also dx’d in 2001 and have since gotten much worse. I have had many of the same thoughts as you.

I was interested to hear that your physiologist suggested you need to “redefine yourself internally”. I came to that same conclusion and I just requested a referral to a Physiologist, I’m not yet sure I will go. I’ve been trying to understand this “redefine yourself” process. I can’t seem to forget who I used to be which probably makes it harder.

In my case, MS has had a huge ripple effect on my wife and daughter. Each of them has had to adapt and are still learning how, but they are doing it.

I don’t have any more answers than you do. I’m trying to find way’s to accept it and I’m making slow progress. I’m glad you posted to this forum. It’s a good place to question these things “out loud”. Who knows, maybe one of us will discover how to accept this fate and find peace with it.

Until then we can keep posting our frustrations, anger, denial, envy, sorrow, and all the other little things that come with life altering chronic disease (I forgot to include “hope” with this list). Don’t be a stranger, you have to keep going thru the dark times to get to a better place. I’ll watch for your posts. Feel free pm me if you want.

Mick

I find this whole idea of redefining oneself hard to understand. I don't want to be anybody else- I just want to be me- without the ms would be preferable but as that's not an option - me with ms will have to do.

This disease has made me focus on who i am, what I value, what i want, what I cherish. I feel ms will seek to deprive me of enough things and I refuse to give it anything else willingly. I am still me- I just happen to have developed ms. I now accept that there are certain things I took for granted previously that I can't do easily anymore. Just the other day I was talking about how incredible it was that I found a 2 mile walk a challenge and when I'd completed it an achievement. But it was and i did it. I'd prefer to think of life with ms an adjustment rather than a redefinition. Redefinition seems to imply an erosion of the person I was pre ms and I don't want that. But one does have to adjust, and accept the things we can't do anything about and pursue the things we do have control over. It's only then that I felt I could move on.

I often compare ms to a black dog that stalks me- I know it's there and I can't ever lose it but sometimes I can forget about it and when and if it will bite. Sometimes, depending on my mood I turn around look it in the eye and give it a damned good kick just for the hell of it. I know it's a long and difficult journey for us all.
muu

Hi G

Just keep going! and try not to let MS define you!

There is a well-accepted, typical, vicious symptom cycle - I'll try to draw here:

<-> <-> <-> chronic disease <-> tense muscles <->
<-> pain <-> stress / anxiety <-> difficult emotions <->
<-> depression <-> difficult emotions <->
<-> chronic disease <-> <-> <->

Any one sympton might trigger the next in the cycle, forwards or backwards. So dealing with any one symptom might help with any of the others; we need to break out of the cycle. Maybe the depression is too hard at the moment, perhaps you might be better able to manage one of the others?

I found writing a journal of great help. Just writing the negative thoughts and thinking about how they might be turned into rational, helpful thoughts - this aint easy and needs some patience.

Keep posting - good luck with whatever you do.

_________________
John
I am what I am

..

Bob,
did I manage to redefine myself during my rant? And there I was thinking I was being my usual pre ms stubborn and stroppy self! best wishes.
muu

..

Ditto with Lyon's last post.

gwa

Grumpster,

I am a 40 year old man that literally had this conversation with my wife in bed at 6:00am this morning. I am feeling incapable of optimism. I was damn near a professional racquetball player (I know, obscure, but I was good!), an avid skier (I can't even see a trip out West ever again) and all around masculine guy as well.

It is a total mind f*** to have all of the things that make up your self esteem yanked away. How am I going to feel good again?

I was describing it in terms the simple things that used to satisfy me. Do you remember when you would spend all day working in the yard or riding your bike and expending a lot of energy? Then you would take a shower and sit around while the breeze blew over you and feel total contentment? Sure there could be things that weren't going right in other areas, but it didn't matter. Then me and my wife would get ready and go out and have a wonderful time and end up in the sack. My life was not just good, it was GREAT. And the sad thing is, I DID appreciate it. I felt like I had the world by the ass and was relishing in it.

I still have a great job (I hate it but it pays great), a great (and hot ) wife and kids, a great house and all the trappings. I guess it goes to show us that true happiness really doesn't rest in anything but peace of mind. I am really struggling with that right now also and anything that I figure out, I will pass on. I am very unequipped to figure this all out and use my family to talk about this stuff with and that helps a bit, but not totally.

The only thing I know is that I have to figure it out because I'm not a quitter and you don't sound like one either. There are people who figure it out and gain peace and I WILL be one of them, but right now I'm just not feeling too close to the answer.

I, too, have vision, balance and dizziness issues. The only thing I've found that helps dizziness well is marijuana, but that isn't the answer since you can't just go around high all the time, plus it makes me so damn tired, but it does give some temporary relief in the evenings. The dizziness is so hard to handle because it has even taken away my hunger, and not eating is not an option.

I feel like I'm preaching to choir after reading your initial post, so all I can offer is some solidarity. I'm in the exact same spot as you right now and all of the sudden I don't feel so alone. Thanks for sharing, we'll get it done somehow.

Lew Chapman

Hey Grumpy--I know you will not be interested in my response. (No one is...well, a few are, yes.)

My daughter refused to "lay down and die"! She was exposed to a natural treatment via a friend. She watched this friend's son go from terminal Hodgin's Disease with 6 months to live to being cancer-free now 2 1/2 years later. She made her decision to give this a try.

Because the treatment is natural and inexpensive, she had nothing to lose.

Her improvements have been remarkable! The test will be in February when she gets her MRI. We are all anxiously awaiting!

I have no "words of wisdom" for you. As a mother, I refused to let this disease take the very essence of who my child was! I have spent more hours researching/reading over these past 5 years, I almost "feel" like a doctor--LOL! All I could do was share everything I found/read with my daughter.

I will pray for you--every day--and hope for you just as I do my own child. God bless--Chris

First off I must thank you all who have replied to my post. I plan on sending some PM's to most of you. Since it is Christmas Eve I can not do that now, but I could not resist looking for some replies to my post. I know that the post was a little heavy reading, but I really need to get some of my thought out in the open, in the sunshine if you will, in order to deal with them. I am glad that this opened up more discussion and I believe that this process is part of the remedy. I KNOW it is helpful to me.

I want to thank CHRIS, BOB, MUU, MICKb, STATHIS, LEW, GWA, JFH and all the rest. I would love to read others thoughts as well. I can not shake the feelings I expressed, but reading others ideas and posts does help.

I know that I should be grateful for what I have in life and I try to remember that everyday. I am grateful to have found this forum and for all of your thoughtful responses.

Merry Christmas all...

G