“There is no need to suffer silently and there is no shame in seeking support.” – Catherine Zeta Jones
Sometimes I need help navigating this maze I’m living in. At times I feel lost. Lost in the unknown. Lost in a realm of uncertainty.
Sometimes I need help with things you can’t see. Things no one can see. Feelings I barely know are there. When these feelings manifest they can take over my life. Causing not only anger and resentment but also an unexpected sense of physical and mental pain. I try my best to fight back the pain, but sometimes it can be overwhelming.
I’m just so tired of MS right now. Everyday something is being taken from me. My vision, strength, and cognition are all up for grabs. I just want to escape.
But, how do you escape from the demon when it lives inside of you?
Still, I know that somewhere in my sadness there is happiness. I know this because some days I feel rich even in the midst of my pain. I have discovered that happiness comes from within. On those days that I find happiness, the pain disappears. I just need help reaching that point.
I need help getting to the other side of the pain.
Tara Brach – http://blog.tarabrach.com – A Buddhist meditation teacher living with chronic pain from a genetic disorder. Through her work, Tara has taught me much about self-compassion and finding happiness in a life filled with challenges. Through her books and incredible (free) talks , Tara helped me to combat the oft-held belief that “something is wrong with me”.
Nicole: ‘All we need is love’. Sending hope and blessings your way.
MS is tough. The mental aspect of the disease is harder than the physical in my book. I have all kinds of “aids” to help me get around, but nothing to help me cope in my noggin. I try to stay busy and not think about MS & the future as best I can. That is all you can do!
Sock, You’re right the mental part can be hell
I remember training for soccer, and thinking what I do now will allow me to prevail at the end of the game. So many goals are scored at the end of the game, so I better train now. I will do my agility drill last so I may react quickly even at the end of the game when I am most tired. We all fail some times, but I will not let my failures be because I didn’t try hard enough and the effort has to be there on the bad days as well as the good.
That mentality has stayed with me dealing with MS. Having those days where I just don’t want to deal with the pains or cognitive fog any more, I tell myself to carry on because there may come a point where I need my body or mind to work. I may not be able to do what I try, but I am loath to think it could be because I never tried to find the work around on some day when I only wanted rest. I find my happiness comes from the effort…the effort itself brings its own reward. It’s on the most difficult days when I feel the least revulsion looking in the mirror (yes I rage vainly against middle age, lol). On those days I can see all of the imperfections thinking only, “got it where it counts.” Where it counts is entirely in the willingness to try and continue, all the while knowing tomorrow I can and will try again.
You’ve inspired me to give it one more shot.
I just read my comment from yesterday and I realize how wrong written text can be. I really feel with you and what you are going thru. My comment was all about thoughts how I right now feel in my own life with my MS. It was not at all directed to you and your situation. I apologize.
Helen,No worries. I figured that. All is well here.
My thoughts are crossing the Atlantic from Sweden to YOU. I find that the disease is just as much mentally as well as physicaly I´m struggeling with cognitiv symptoms and I have so difficult to accept my situation. Today I heard the word that helped me today. It was reconcile. I looked it up in a Swedish dictonary and it was translated to unwillingly acceptans.
Helen, thank you for traveling for me so to speak! “unwilling acceptance”I think I fall somewhere right in there.
I truly appreciate and value you sharing the things you are going through. I also have MS and it becomes difficult to deal with but seeing others express their self helps. You have truly touched and helped a lot people with you blog.
Thank you and God Bless
Shanickiau, It helps me too! Thanks for reading.
I hear ya girl!! Trying to stay positive in the challenge….this is my biggest obstacle!!!
mary alice, You got that right!
Nicole I’m so sorry for this slump. I try to remind myself that all of the things that I’ve been afraid of, or worried about in the past, are water under the bridge now. Things I could never imagine MS bringing into my life, are here; and I’m still okay. Realizing that, helps me though the slumps.
I wish for you strength, peace, and patience.
Estizer, You are so right! Thanks for the reminder.
You are right sometimes everything is just too much, too hard!!!
I have a daily exercise regim plus things i think i need/want to do. things like ‘doing the dishes’/learning spanish or so. Put them on a list ,tick them off and it makes me feel good to see them crossed off.might sound strange but gives me a sense of achievement.
Okay works not always i think on bad days we must just spoil ourselves, an extra coffee, chocolate ice cream, space to think, a movie, talk/write to friends.
All the best & have a great day!
M I L a, I write list too! Although now I have problems writing as well.
Sorry you’re going through a valley right now, just know that the sun is still shining and you’re still breathing so you’ve got a shot at a better day tomorrow! I like to think that my best days are yet to come although having MS makes that a challenge yet there is hope. BTW I did have gastric by pass surgery on 2/6/13 and have lost 74 lbs already and now do water aerobics 5 days per week, weights 3 days, spinning twice and ride a recumbent bike 4/week at a 1/2 marathon distance each day sooooo I’m big on the hope concept. I realize that I’m blessed to be able to still do this and you can bet your sweet a_ _ that I’m going to keep pushing until I can no longer push and you’re one of the reasons I’m so motivated! So may God bless you and raise your spirits. Keep up the great work you’re doing, thank you.
Tim, Wow! That’s enough to get me up off my butt! thanks!
Uncertainty is one of the hardest aspects of this disease. Not knowing what will happen distresses me. It forces me to live in the moment. The future scares the hell out of me. We have to dance in the rain and that is hard to do. My best to you Nicole, I understand.
Lisa, I forgot about living in the moment. Thanks for reminding me!
Nicole, I know what you mean. Victor Frankle, the Holocaust survivor said, To live is to suffer. To survive is to find meaning in suffering.” And, Ed Asner in the movie, UP, said, “Adventure is out there!!!” We just have to keep going “out there” to find it. Happy riding today.
Mimi, Thanks for reading. I did have it challenging riding day, but it was worth it! I found my adventure today.
It took a long time for me to not feel sorry for myself. I still do sometimes, but I think I have finally found peace & acceptance. Something I try to remind myself when feeling down is “that there is always someone out there that is much worse off than myself”. It makes me realise how blessed I truly am with a loving family who supports me in every way.
Peace and acceptance. That is the goal.
Thank you Nicole for giving voice to what so many of us think or feel at different times during our MS journey. It’s comforting to know that I am not alone. I know it is not ‘wrong’ for me to feel overwhelmed or sad sometimes as long as I don’t stay there. That’s when I’m encouraged to make my trials my testimony. Blessings on you!
Rachel, I’m just being honest. You are right it’s nice know I’m not alone.
Thank you Nicole. I live in pain everyday and no one seems to understand. It is nice to communicate with someone who understands. As always, I appreciate your posts.
Nothing makes me happier for someone in so much pain to SAY something about it. I think sometimes I help myself without even realizing it just by writing something down. It’s a blessing for anyone to then read it and take a little piece of the demon away because of it. You inspire so many people. You inspire me. Thank you so much for sharing with the world that MS is often a completely invisible disease.
I’ve been at this 50+ years. Lots of that time I was blessedly unaware of th beast within. I must say it is ALL attitude. Still often hard to remember. That IS where we get our power to rise above. God gives us the strength. Bless You
My God Elaine, bless your heart. I think about living a long life with MS and sometimes I get so scared.
I can definitely relate to what you are expressing. This journey is not an easy or simple one, but it’s our journey. When I feel like what you are sharing, I take a deep breath, read any encouragement that I have read in the past that worked for me, and remind myself that I am still here – able to enjoy the sunlight and my spouse’s smile, my children, and the small, lovely things in my life that I am not thinking of when I am overwhelmed by unproductive thoughts that do not value the gift of my complicated, challenging, sometimes painful, and sometimes glorious life. Please keep reading the book I suggested — You Are Not Your Illness. There is so much there that I found quite helpful. Take care of yourself. Sending you much love and support…
I love this analogy!!!
Linda, Thanks. I think I just might do that.
My heart goes out to you as you hit these difficult walls. Is your pain both physical and emotional? The cliche that happiness comes from within must be hard to believe when pain and despair are in your face. If you can find the happiness, then I believe I will also be able to find the happiness when that time comes. So thank you for your words and thoughts that you share.
While my first reaction to your difficult time is to be fearful for myself and my future, my second reaction is to take your words and consider what I will do if, and when, I arrive where you are. How will I find a rainbow or anything to be thankful for? i.e. I am preparing myself in advance. At least thinking about the situation. Nothing like being prepared, as the boy scouts say.
So thank you Nicole, for sharing your difficulties. I can practice today on finding that happiness within during hard times.
Lollie, yes you can. Remember this disease is different for everybody. You may never ever reach my point.
I know exactly what you mean. It’s so great that you’ve had enough experience to recognize that although you’re feeling this helplessness and hopelessness right now – this too shall pass. That it’s something that you simply have to get through in order to come out the other side and again feel happiness. I hope that it passes quickly, my friend. Gain strength from the knowledge that in your sharing, so many of us find inspiration, support and strength. Thank you for your courage – and thank you for always sharing your truth. It’s so many of ours as well. There is power in numbers. I hope you feel the vast numbers of people who you help sending our healing energy your way.
Kathy, thanks for the energy. I appreciate it.
It is great to have reminders how ro reach that point ie your bloggy!
Angela, thanks for reading.