Readers Respond: How Do You Cope with the "Bad Moments" Caused by Your Multiple Sclerosis?

How do you do it? How do you keep going when it gets really hard? Help us all - share your tips or tell a story about a time when you got through a rough patch. Share Ideas and Stories

How to cope rough times

I live alone and trying to cope with my ms and it isn't easy, by no means. I still have my mobility, but it is a huge struggle every day to make my legs work and the other parts of my body effected with ms. I wish there was more help for helping people who have ms cope. Here in Canada, there really isn't help with coping through the illness. I feel afraid, sad, mad at times. Mostly feel afraid now, I live alone and having a really hard time managing day to day. I hope for a cure... No hardship I have had in my life, not even giving birth, being in the army comes any where close to the pain of multiple sclerosis.

—Guest Catherine

Dealing with 'lost time'

I found I was spending 45 minutes in the shower and couldn't work out why. I've worked out that a 5 minute shower is a count of 300, so I just do what I normally do but count. Funnily enough, 5 minutes is all I need! What on earth was I doing the other 40? Ha Ha! I'm planning to try this on other aspects of my life... can't hurt!

—Guest Serika

Living With the "Bad Moments" of MS

I am in my 14th yr of living with RRMS I have to "Buck Up" to do just about anything I mean anything! I'm still working FT, which is not easy. I walk with a cane while dragging my left leg concentrating very hard just to pick my left foot up to keep from falling. I am so determined to stay walking, fully realizing that my determination will not keep me out of a W/C or from PSMS! NO matter the challenge, no matter the pain….. I keep on keeping on trying my best to be positive regardless of the BAD Moments. Nobody really knows as we just deal with it and suffer in silence. Most people would NOT do what we do every day, because it is HARD. I promise myself to do my BEST with whatever I am dealt because of my Lord & Savior, who did the same for me and for YOU. The Big Win is that through my resilience I know that I am honoring myself, my own dignity. I have MS it does NOT Have me.I am confident in KNOWING that, “Ya Know”…..I am truly amazing! YOU are too!!

—JrJeanie11

SOLDIERING ON

Am in my 17th yr MS, and the facts seem that I am movin' on...to SPRR. Already lost on vision in one eye, not ambulatory. So - I have NO illusions. BUT I am struck, indeed, by the fact that it's a rare person who understands the enormous challenge of MS, and agree w/ you all that NO ONE else 'gets it'. BUT THEN, why should they. They have their own challenges, real and imagined. And that is THEIR world. I do best when I buck it up, KNOW that I am steeled to the challenge (no matter how bad the day), and thus have the self-confidence of KNOWING I am truly a trooper: no complaining, no ticking off a list of issues, etc. THAT WAY, Y-O-U know you are better than 95% of the rest of the world, who at the drop of a hat, rattle on and on about the 'moan du jour'. Hang in everyone! I (we) really have our hands full, yes. BUT by being in "non-compliance" w/ moaning and groaning, we are part of the solution, and NOT the problem. THAT puts you waaay out in front believe me. Thanks for the LDN tip!

—Guest KILAPH

SOLDIERING ON

Am in my 17th yr MS, and the facts seem that I am movin' on...to SPRR. Already lost on vision in one eye, not ambulatory. So - I have NO illusions. BUT I am struck, indeed, by the fact that it's a rare person who understands the enormous challenge of MS, and agree w/ you all that NO ONE else 'gets it'. BUT THEN, why should they. They have their own challenges, real and imagined. And that is THEIR world. I do best when I buck it up, KNOW that I am steeled to the challenge (no matter how bad the day), and thus have the self-confidence of KNOWING I am truly a trooper: no complaining, no ticking off a list of issues, etc. THAT WAY, Y-O-U know you are better than 95% of the rest of the world, who at the drop of a hat, rattle on and on about the 'moan du jour'. Hang in everyone! I (we) really have our hands full, yes. BUT by being in "non-compliance" w/ moaning and groaning, we are part of the solution, and NOT the problem. THAT puts you waaay out in front believe me. Thanks for the LDN tip!

—Guest KILAPH

Trust in God

I was just diagnosed. I know that this stance may not be the norm for most of you but, I pray. I believe that God is going to heal me. Watch for my miracle! I pray for you all as well.

—Guest Camille

It's all about perspective

The physical ease of approaching the world like that of an able-bodied person is simply out of the question where progressed MS is concerned, and we should never be held to the same standard. Therefore, I do what I can, when and if I'm feeling up to it, if at all. I do not let others' success stories of coping with MS, and the benefits they derive from exercise affect me one way or the other. I say, good for them, and refuse to feel guilty for not having their 'can do' attitude. My advice to those who have a more advanced stage of disability is to do whatever physical activity brings you the least discomfort, get a few minutes of daily sunshine, keep a sensible diet, social interaction when you can, (online is just fine... some of my best friends are online), and understand that mental stimulation is as important as physical, so keep reading and learning. It's all about perspective and what works for YOU! This is my perspective, and what brings me a little relief and peace of mind. Wis

—Lyn_W

Only God Can Help

I have had 3 relapses since Jan. 2011. I was scared to death each time because they were so severe. The medicine made me sick. So I prayed. Only God could understand my pain and fear. He is available to everyone (all people). Psalm 138:7 Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the anger of my foes, with your right hand you save me. Your foe is MS. May God give you peace.

—Guest Michelle

Coping with MS

Shortly after being diagnosed with MS, I found a wonderful M.S. support group. Even though we are all different in so many ways, we all share the common bond of living with M.S. I have learned so many things from this supportive group. We meet once a month, but I can lean on them all at any time. Even though I have a loving husband, my new M.S. friends really understand what I am going through.

—steph48

cope

yeh- its lonely, no one that has been through it-understands. so i cope and its tough but it passes

—Guest faye

laughter

i fall and trip alot so i just say for my next trick... and, go on most people don't know what makes me fall ms so they just laugh and go on. sometimes it is very hard for me because it effects my eyes also and have double vision... and can't tell which door way to walk through...i just say when did they move the door. sometimes i do get very tired of making jokes but find most people want to talk about their own issuse of cut a finger or my head hurts so i just don't talk about what i have and tell them i am sorry they feel bad.i think it can be lonely with ms but i'd rather put up a front. i learned the hard way because i told my sister one day when i was feeling so badly and couldn't walk or get up when she came over.. she told mr off and said you don't know what is bad i twisted my ankel now that is bad. and wanted me to go to her house to help her put up wall paper.... she couldn't understand that i couldn't walk. she called mom and dad. and everyone said stop making up excuses.

—Guest dianna

I am lucky

I have had MS for 20 yrs and it does not get any easier the longer you have it. I did'nt want to believe I had it at first and it is hard sometimes but I am blessed with a wonderful husband. He does not always understand but he tries. No one knows how you fell except another persom with MS. They understand the helplessness we feel and how some days we don't want even to looked at others and other days we want to be close. I read your thoughts and my heart hurts for you and for me.

—ClaraMarie

Giving it a shot

I am quite new to MS, diagnosed just 6 months ago. But I am doing everything i can to help slow its' progression. Diet change, Vit D and omega3, exercise and meditation (as per George Jelinek book), along with copaxone. I feel so anxious at work because I can't track everything that's going on, and my thinking is a bit off, but I am just doing everything I can to address it, and now finger's crossed! I guess you can just give it your best shot, then be open to whatever comes your way. As per other entries, surround yourself with supportive people. We don't have time for downers!

—Guest Rach

Living with MS

Sometimes it gets difficult. I have a spouse who cannot seem to understand what this disease means. He will not do any research and does not care to hear anything from me about it. And most times I feel alone. And in a real sense we are alone because only we who live it daily understand what each day brings us, and that every day is different. I think the one thing that I know is that my relationship with God has turned so personal and so deep. My life is filled with moments of prayer and praise. Whatever the future holds, I know I am believed by Him. He doesn't roll his eyes and tell me to quit exaggerating. He understands. And that is enough for now. Each day I notice something new, a new symptom, something else that has been lost. In spite of the crushing fatigue, I find that I can cope in small ways, doing a little at a time and trying hard not to go past that tipping point where I go into shut down mode. My bed and me are fast friends.

—Guest Diane

prayer and common sense

First of all, I have always been grateful. Even through my years of MS, I remain that way. Everything for good reason. I say "explore what that reason might be". After many years of suffering in warm weather, I designed a cooling vest that looks fashionable and is made from performance fabrics. It makes me feel good to offer a cooling solution for people like me who worsened during summer months or during physical therapy. Watch for our official release: cooltureusa.com Until the next time, thank you for this valuable blog.

—Van1002