Find a place inside where there’s joy, and the joy will burn out the pain.
Do you ever feel as if you are the last one to get the joke?
Then you figure out the reason why you don’t get it.
It’s because; you ARE the joke.
I have finally realized that the MS joke is on me. Sometimes I wish I could just take a ship to mars where I can start a new life and escape my loneliness. I have felt so weak, for so long that I can’t remember when I didn’t feel exhausted all the time. Everyday I’m just trying to keep my head above water. But my MS is so heavy that I’m nearly drowning from the weight of carrying it on my shoulders.
At times I feel like I’m losing all control of my life. Like my lesions and my body have conspired against me to destroy my happiness. While my psyche is in the background laughing and screaming, “Encore! Attack her again!”
It’s like the MS is being entertained by my plight and enjoying every minute of it.
They say it’s better to feel pain than to feel nothing at all. Whoever said that must not have had MS because some days the emotional pain I feel is so bad that I would never wish that feeling on my worst enemy.
Believe it or not, I’m not bitter. I’m just frustrated. I have no problem carrying my personal burdens like everyone else; I’m just tired of being the punch line to this horrific joke.
Hi Nicole,
I’ll always, only laugh with you because we share the common punch line. Thank you for keeping it real!
Your friend,
Tim
I’m just numb most of the time. I have very few highs or lows. I’m resigned to missing out on a lot of life. My full time job is trying to keep my body moving…what little ability I have left. At least going to the pt gym gives me somewhere to go a couple days a week.
Margaret, three times a week! I’m lucky if I make it once.
Hi Nicole With my brain being slower these days understanding things or getting the punchline of a joke can be a challenge. I call it ” 2 days later” as that is how long it may take me get it Sometimes I laugh at myself when others offer pity. No pity please just love & support. I may be going down so to speak but not with out a fight !!!!!!!! Take care
Pam, thanks for reading. remember? love and support only
The emotional roller coaster we ride is distressing. To keep centered is a chore everyday. I felt your distress in your words.
I feel bad for all of us. Our lives have been uprooted and changed. I struggle to stay positive.
We rise to try and meet our challenges but tire in doing so. We all know this is an uphill battle.
You express how we feel and I thank you for that.
Lisa, thanks for meeting always…
Nicole, I so understand. You paint the picture so true. We get what we get – how we deal with it makes the difference. I am grateful to know you.
Non, not quite so sure how to deal anymore.
Hang in there, kiddo!
My doctor (who also has MS) says that all of his MS patients react differently to the disease experience. One goes into fear (“Oh no! Does this [whatever] mean that It’s All Over!?!?”), one goes into anger (“Put me down, will you, MS? I’ll show YOU!”).
He says “You, just think it’s stupid.”
Or funny. Tragi-comic, yeah, but funny. Sometimes I search for the funny, sometimes the funny finds me.
But you know, those times when you hit the ground hard enough so the house shakes, and then you laugh, because you see how funny it is…
You know, for a “free with your MS” add-on, laughter ain’t so bad.
But whatever it is you’re needing to find, you’ll find it!
You may even find laughter. We are pretty funny, us humans, after all…
I would like some great advise. My doctor is awesome supportive in every manner. Was a true human being when he had to explain the lesions on my brain. It all made sense the hand the hand tremors the tripping the fatigue the lack of cognitive thinking. I saw two neuro docs one asked if and I quote can you poop and pee and the other said the boogie man is gone it’s not a stroke we ruled our carpel in my hands. Beta blocker help. I am a healthy 46 female who did her 10th marathon. My doctor said I get my second MRI in sept which will be 10 months. Which ok waiting list but then he said I want to refer you to the MS clinic but they might say no not until you get worse. Or if you do. It’s not him it seems I have to prove this?
Donna, there are all types of people at my self-help group.
Robert, Thanks for making me smile.
Yes, the joke is on us, but we are strong enough to know that even though we may bear the brunt of this joke, it’s no laughing matter. We just pick ourselves up, shake off the joke & move on. I don’t have time any longer to sit & wallow in my sorrow of what was or could be. Life is too short. I get my inspiration from my nephew who has SMA, has been in a wheelchair since birth, is 36 yrs old, WORKS FT & is getting married in June to a wonderful woman who also cares for him 24/7. If he can do it, so can I….and that’s no joke!
KIM, There is hope all around us!
This is so honest, Nicole, I bow in your honor. Your MS is worse than mine, and you do more than just crumble emotionally. You make your presence known to the world, helping others in the process. Sometimes, even for me who is still mostly ambulatory, the frustration is so great, I just want to scream. That is, when I don’t cry because what MS has wrought in my life is so immense. And, the prognosis is for more of the same; indeed, for worsening. Maintaining my spirit in those circumstances is a miracle, and I do it the same way you do. By writing about it. But I am also helped by those, who like you, speak openly of their challenges even as they stubbornly focus on still finding joy somehow. Thank you, Nicole, for being a beacon of light for all of us.
Judy, I crumble emotionally too.
Hello Nicole, I don’t have MS but a close friend of mine does and I am trying to be helpful to her. Your blog is such a source of strength and inspiration. We appreciate that you care enough to fight through the fatigue and continue to post.
Marion, You sound like a sincere friend, give her my best.
Nicole,
Keep up your fight. Although I know at times it is so hard, both emotionally and physically. I have moments where I know it would be easiest to just succumb to this nastyness, but then I always remember that I did not fight so hard for so long to just give up. I know yesterday I was not emotionally strong. I always am ready for this joke to be over, but it seems to just keep going. Maybe one day…
Nicole
If the joke is MS, then all us msers must be brining joy to those who share the joke!
I even have empathy for the lab rats that go through the trials and testing for MS therapies.
Yes. Having a week, no, a year like that. The intense weakness worries me. Physical and emotional pain criss-cross. Thanks for talking about this. You have a fantastic blog. Power and relief to you!
Great one Nicole this was on point. Keep being a blessing with your writing you say exactly how my body and mind feel. Since we are not all alike I can’t say we r in the same boat but I can say we are putting up a good fight