Why should I bother living when I know my future with ms is bleak at best. I'd rather die than live how I do and probably will. What's the point, really? I feel useless and infected, and I hate life.
Although I'm 10 years older than you are right now, I think that we have much in common. I too was diagnosed only 4 short years ago. I used to tell folks that the 1st year post-dx was the hardest and that the emotional rollercoaster got easier after that. Actually I still tell people that, but I have since learned that every relapse or bump in the road sends me into the dark world of uncertainties, rage, sorrow, fear, depression, etc.
Even little minor bumps which resolve in short time (like the one I experienced at my brother's house recently) send me into an emotional heap. I hate this disease.....but even with that strong distain for it, I know that life will still be good. I am lucky to have a boyfriend who supports me and am able to do freelance work (music and writing) which keep me as busy as I desire.
Counseling really can help, if you find a therapist with whom you gel. It takes time to develop that type of relationship but it can be done. With my therapist, when my insurance coverage ran out, she even made a deal with me on cost. The offer she gave couldn't have been beat by anyone else.
I hope that we have helped you somewhat. Please know that there are others your own age who are going through the same feelings regarding MS and life. Heck, what am I talking about, age doesn't matter when it comes to hating this disease. But we all learn how to live with it and enjoy life in the process.
BTW, antidepressants and counselling have been priceless along my own journey. They truly do help.
MS did not end or ruin your life. I know it feels that way sometimes. Actually, this is just a road bump or a detour. MS in most forms is manageable, sometimes which help, sometimes with mobility aids, but always with a positive attitude.
Positive attitude? How can that be? It may take time and practice. As djax said a support group might help. Momdukes, djax and I have each had this monster condition for a long time. At one time MS was overwhelming to each of us, too, but that has passed.
There will be a time when you realize your heart is no longer broke, you do contribute to your family and Society you whether you can walk or not, lift or not, or many other things. There is more to you than preparing dinner or driving the car pool and you will find it. It takes time, fill it out yourself that time — join a support group, read and write on a network like this one, learn about the abilities you still have — and while you are living your life you will realize it was worth it.Any time along the way do not hesitate to talk with your doctor to talk with one or more of us when the burden seems too heavy. We have been there, too. However, a bleak future is always brightened with a little hope and a smile. It always helps to have the right combination of medicine, vitamins, and support, but the hope and even the smile can be yours with a little effort and time.
Good luck, and let us know how you are doing along your journey.
Hi Kim, I hope that today you are feeling better. djax59 is right, you must learn to laugh at yourself; I do. When I fall, to me it is so funny, because I think "boy what a cluts"
Yes there are days when all of us with MS feel down, hey that is just the natural order of things. Even for those who are suuppose to be fine....they are not, they are only fooling themselves. You have the right to feel sorry for yourself, we have earned that right. Kim, I was always the giver, taking care of others, carting the girls to all of their events, housework, and even going back to college. But now life saw a change was needed. It came in the form of MS. So I have to deal with it. My husband and I have switch life roles, my girls now know, all of the things that mommy did was priceless. But we have got to keep it moving. You are not useless, never feel like you are a burden, that is just the depression talking. When you think that you have it bad, look around, then life does not seem so bad. Yes it is rough, but all of us will be fine, I promise. Get some sun, it does help, my vit. D level was so off, but the doctor gave me vit pills to take, and they have helpd. You may want to talk to a counslor, it could not hurt, it might help! Life is going to be all right I promise! sherry/smomdukes
Hi Kim, this is smomdukes. If you look at my picture, you can see, what it was like for me before MS eared it's head. I was in Hawaii, visiting my brother who lives there. I know that sometimes it can really be a downer. It's not, I tell people that with life, I have just hit a bump in life's road. MS, yes itt is a mess. Let me tell you a little about me, that is the only person that I can speak on. MS showed up in my life at the ripe age of 44. But guess what I was told that I had MS all my life, imagine that! Now I was a high heel wearing diva, and I was cute (still am) I was walking 4 miles every morning b/4 I went to work. When I walked I strutted. Oh yea I cannot forget, I love expensive handbags, no knock offs, the real thing. Now enters MS I am no longer able to wear high heel shoes, when I do walk I have to use a cane, in the afternoons because of fatique, I use my wheelchair. But my canes are stylish. People are so ready to lend a hand. No Kim I am not a charity case, but I had to realize that MS is a monster. Yes I have had to make some life changes, but hey doesn't everybody. Mine may be a little more drastic, but I am in no way going to give up. Find you something that you like to do, and be good at it. That is what I have done. Do not worry about things in life that we cannot change. The late Lewis Grizzard said, "don't sweat the small stuff, it's all small stuff". Don't worry Kim, all of us on this site, have felt the way that you do. MS is not the end, it is just an opening to a new world. Smile
Thank you. You are sweet and understanding! I think that actually helped a little. I just feel like burden sometimes. I get down on myself, especially for the clumsiness and bladder problems. I don't want to be useless seeming. Not that handicapped people are useless or anything, but people have always depended on me to be a doer, not like this. Will my heart always feel so broken? I know I could have it worse, and I should be grateful......but I'm NOT!!!! I'm too mad! I've been mad since I was 27 (4 years ago when I was diagnosed). I guess I should get over it, but I just feel like crap. Would counseling really be useful? Or is that just another damn medical bill. I'm potentially open to going to therapy. Anyway, thank you for being cool.
I totally agree with this post.I myself was diagnosed with PPMS four years ago.I and freins have seen a gradual worsening of my health.My sight has gone,resulting in a 100% visually disabled status.My right hand is numb,to the point that I can not even sign my own signature,I frequently urinate in my trousers,despite the medication.
What was said about taking ut an interest is vitally important.I run a blog about Finland and being an Expatriate.If it was not for this I would no doubt feel depressed and in much the same situation as most sufferers.If you just sit and dwell on your problems,you will ultimately get depressed.I find that running my blog takes up most of the days and so prevents me from dwelling on my illnesses and effects.
I view life as a half full glass,not half empty!Find an interest and put your heart in to it.It leaves no time to sit and dwell on what you are missing.I still can think,and no desease is going to stop me,
Why not start a blog and write your pain out
Wow I have read all of the absolutely terrific resonses to your delinma! I sincerely hope you have found something to hold on to; something to get you through. It is very true that we all go through similiar emotions. That is why we reach out to each other. It gets better if you let it.
I felt the anger part. I'm always a little pissed off. I often think of Momdukes' approach to accept, adjust and live to the fullest extent that you can. (She's beautiful.) I like it when people say that I'm doing great (I choose to believe them). I like it when they say I have a great attitude. (I believe them because I work hard on NOT being defeated.)
Don't misunderstand.. the "blue" bug comes....try to let it go!
Kim, I hope my story will help you at least a bit.I was diagnosed with MS 9 yrs back, just after completing my degree as a surgeon. Had three relapses and since two years I became ataxic with slight loss of balance while walking, neurogenic bladder, which means I have no control over my urination and sexual dysfunction. But still I mange to operate, carry on my practice, go to movies and holidays and even make love to my wife with Sildenafil citrate aka. viagra.
So, don't loose your heart. Fight the monster. I am sure you will win, if not the war but some battles.
kim---when i was diagnosed 37 yrs ago--i cried--i had never heard of ms but it sounded so fatal---but then i thought i now had a name for all those troubles i had been having--the leg weakness- the blindness--the hand clumsiness that didn't allow me to put pins in my son's diapers now it's just a fact of life for me now-i will say i have been very lucky--i am still on my feet and can walk even if i do wobble and fall a lot-but i have learned to laugh at my foibles-i fight depression-i hate it and don't want it--if i can't talk myself out of it i ask the dr for something--better living through chemistry--lol--yes therapy might help. you just have to find your way to coping with this. ms is not a death sentence-i have thought at times when i look around at the rest of the world that if i had to get something i was glad it was ms and not something worse. the only advice i can give you is learn to laugh--it all will work out just fine. it's a fact of life not an embarassment--i've never fallen in the store when somebody wasn't there to help me off the floor--find a support group in your area it helps to talk to people who have the same problems---i think this site is wonderful---sweetie if you can't laugh at yourself nobody else can and sometimes it's just funny. "really ossifer--i haven't been drinking"
All things are possible to him who believes.....you can trust God to bring you out of this with a praise report. The Bible also says that God forgives all our iniquities and heals our disease. You can live each day believing that God's word is true and that He has a plan for your future that is good...plans to prosper you and not to harm you. There is hope even in what looks like the most hopeless situation. God will reach out and remove disease from you even when medicine has no answer. There is hope designed just for you...there is belief available just for you.
That is how I am coping with what the doctor shared with me concerning MS. I have a hope for a future that involves the joy and love for life that I have lived in peace for years. My God is greater than any disease that may try to manifest in my body. He is greater than any destruction that may try to come to my movement. I make a choice daily...to believe in the hope available thru Jesus Christ...or to believe the news that there is no cure.
For even more hope building up in my system I listen to Charles Capps tapes on healing every day. Try it...let the hope and promises of the word of God come alive in your body. Blessings, Lori
hey kim My name is daniel and the worst thing about this disease is when you get used to living a particular way is having to learn how to live with other talents you have I was a labourer for quite some time when all of the sudden I could not work but I was a road dog hitching every chance I got I had been to twenty three states I think about the road alot. I have one more hope in my life I am a writer so may I suggest you let go of what you can no longer do and find something you can do. Even with this messed up disease there is hope take time to find out what OTHER THINGS YOU ARE GOOD AT DO NOT STOP NEVER SURRENDER. bye for now firstname.lastname@example.org