I can remember years ago when the focus of my life wasn’t multiple sclerosis. There was a time when I wrote emails that didn’t pertain to MS and the subject didn’t dominate my every conversation. But unfortunately those days are over.
It bothers me that my “new” life is all about MS. Sometimes I forget that there’s more to me than multiple sclerosis.
I use to think it regrettable that you guys didn’t know me before MS. I was so active. But now that I think about it, I’m still very active. It’s just a different type of active. I participate in riding horses on a local farm. I’m even presently seeking out more MSers to join me through the National MS Society. I do modified physical workouts, I study the Spanish language, I blog and write and I read incessantly. Lastly I watch as much TV as I can fit into my schedule. I’m not sure if that’s good or bad.
So, what do you do in your free time?
I wanted you to know that life is not all bad. We may have to plan a little more than others, but life is not all bad. The horrible stuff just makes for better reading.
Thanks to you guys, I now know that the woman I am beneath the MS continues to shine through and most importantly that there’s more to us than multiple sclerosis!
Nicole, I can relate. I asked someone recently if she ever forgets she has MS. I can sometimes forget when I am working, sitting, reading, watching movies or tv. It is when I am walking or falling that MS comes back to consciousness. It is when I am invited somewhere and I have to think about energy and accessibility. It’s the inconvenience of MS. Here’s to distraction!!
Bherenow, You got that right! Hey, I release new posts on Tuesdays
HI, I love the blog thank you so much. Usually I forget I have MS if I am sitting down. Then I plummet towards terra firma if I don’t have my cane or walker. I really thought “accessories” were meant to be baubles, now I have a scooter for distance. I am going to paint flames on it. I also have to think about accessibility and energy. MS is so inconvenient but I have learned ways around it. Sometimes.
Carol, thanks again. I’m still learning too.
Qué ben que estés aprendiendo español!
Me ofrezco voluntaria para que practiques!
Qué bien que estés aprendiendo español!
Si quieres practicar me ofrezco voluntaria! 🙂
Gracias, Necesito practicar más!! Cómo sabe esto?
I read in your post that you werw learning spanish as a new language, and I supposed thst more practised wpuld be needed! I have been learning english for some years and I guess I will always need more practice!
Seguro que pronto me entenderás mejor en español que cuabdo escribo en inglés..
Sorry for the spelling mistakes… Its not easy t write from the mobile phone with this hot dogs fingers!
I have move with my husband and 9yr old son back to where he grew up because it is also so close to where he works. The friend we have made are truly a gift! They are a genuine bunch of people who have fun and are always there no matter what! I can’t help thinking how much they would have loved me before the wheelchair. I know I need to just be great full but I’m human.
Tash, One of the awesome things I’ve learned from this site, is that the person I was before MS, I sill am. MS can’t change that. only me.
It’s great that you’ve found a real live group!
Thanks. It’s hard but I will try.
Tash, Now a days most things are! I’m not sure if you’ve been to this site before or not, but I release posts on Tuesdays. Thanks
I have long said I hope people look at my life’s work and think it remarkable. I hope the knowledge it was all done with MS is either unimportant to their opinion or serves to help them understand my decision processes. I’ve come to view MS as simply playing the game of life with the difficulty set to medium hard. Everyone know the best prizes aren’t won in the tutorial levels of any game. Dealing with life on the MS level just requires imagination and MaStering some new skills.
well lived, I continue to admire your firm grasp on who you are.
Funny, I sometimes worry my view of life as akin to a video game played with my last quarters smacks of a break from reality. I just haven’t come up with a better one…or at least not one I have the maturity to make stick. Everything else makes my mind take too much notice of the bumps and bruises, emotional and physical which I seem to run into head first.
Nicole, I like to do crossword and jigsaw puzzles. I call them my avoidance behaviors so I don’t have to do the dishes. LOL
Roberta, LOL!
Check out Mitch’s blog:
http://www.enjoyingtheride.com/
Interesting that he has been writing about this very same thing.
dee, That was extremely interesting. I’m to have to look into it.
We contain multitudes. Some of them have bladder issues, it would seem.
I’ve become an “Adventure Time” fan, especially when the stories are of a character discovering a truth about themselves, especially a truth of their own heart that they didn’t even know was there. Beautiful moments, sometimes horrible beautiful moments.
I make tea, most often some form of oolong. I get lunch or dinner at local Chinese and Japanese neighborhood bistros. On really good days, I write music. Which don’t come as often as I’d like. (But for so many of us, M.S. or no M.S., do “good days” come as often as we’d like?) I suppose the body healing itself makes it a “good day,” whether I like the way it chooses to do that…
And, clearly, I go VERY philosophical. I dunno if that counts as “recreation,” but there you have it.
Robert, An adventure man, I never would have thought. A philosophical guru? Tell me something I don’t know!
I garden when it isn’t too hot outside. One of my hobbies is going to concerts. I am a Deadhead and I see as many concerts as I can and will travel to do so. Some of the remaining members of the band, The Grateful Dead, still play and I do enjoy my shows. I dance with my cane. I have been doing this since I was 15 and I am now 56 so I have hundreds of shows under my belt. These concerts keep me sane and gives me something to look forward to. I drove from California to Wisconsin to see a three day show. Getting there is part of the adventure.
Lisa, There you go surprising me once again!
Nicole,
I have always been an active person, and since being diagnosed last May I have become even more active. I work full time as a mental health therapist in a correctional facility. I recently began blogging after years of writing my thoughts and running out journal space. I just completed the MS walk here in Mobile, AL. with my team, Team Victorious, we did 3miles, I travel, read often, workout incessantly, and am very involved in my church. Until last year I was pursuing my doctorate, but I took a break before I was diagnosed and I haven’t had an interest in beginning again since. I watch as much tv as I can and am considering doing the MS challenge walk. I am researching and trying a gluten free lifestyle currently and I must admit I am feeling great. Who knows what I may do next. I am always up for a challenge.
Marcia, That’s great! Keep on moving!
The woman you are is caring. The woman you are is magical. The woman you are is fabulous. Your words resonate with so many of us. You speak them for us. Bless you, Nicole. You deserve the best. Cathy
Cathy, Thanks so much.
In my case, I have boredom on my side. I currently have a million projects on the list, which I get to in increments. I read a lot and have been watching old Lon Chaney/Lon Chaney Jr movies. Then there’s my veg garden, getting my new “sewing center” together, and finishing the re-upholstery on that wingchair I’ve been working on for the past 2 years. The fatigue and dexterity issues can make it a challenge, but I tackle them little by little. I’ve come to realize there’s no real deadline, which helps.
Jenn, You’re right. There is no real deadline now. I need to slow down and remember that sometimes.
Each of us has an understanding of their own MS — it is like a thumbprint – unique to the holder. Recognizing that some symptoms may not be your MS but another physiology. According to the Patients Like Me forum, MS patients have recorded over 3,000 symptoms and are taking over 800 prescribed drugs.
CCSVI Alliance is hosting an educational symposium in New Orleans April 16, 2013. The topic of discussion is “Exploring CCSVI and CSF in Neurological Disease”. Please check out the registration page and plan to join us for this informative multi-discipline session.
http://events.constantcontact.com/register/event?llr=pflw7ieab&oeidk=a07e760jpn3867c9dc5
Sharon, I thought your name looked familiar! Will do!
I have stubbornly learned to adapt. I have a very happy life. Just a process I had to go thru.
I love to work in my yard, and I love flowers. Now, if I get too tired, I use my scooter to keep going.
I have found/am finding, most, if not all, of my ‘obstacles’ are in my head.
I have a hard time (getting better though) letting people help me. I have been so independent, taking care of things on my own, it is hard to give it up.
Faye, Me too. I’ve been adapting for years! I find it’s hard but necessary .
I am still reluctant to let people help. However, what has really changed my focus is sometimes the gift of receiving help is actually a gift to the giver of help. Hope that makes sense.
Carol, It does.
I have mastered every Facebook game there is!!! Lol. I love music and cleaning if I’m not too tired.
Shannie, With that sense of humor you’ll go a long way!
Like you, I try to fill the blank spaces with activities — reading, writing, TV. Sometimes it helps me ‘forget!’ 😉
Peace,
Muff
Muff, Yeah they give me a break from my own reality.
What a great post. I work hard to remember that I am not my illness. Thank you for the reminder!
Linda, contact me, We should talk.
What i do with myself i tend to watch alot of tv which i dont mind, push myself to go on the wii for yoga and Balance if things are rough have a movie day .
Mary. Sounds like you have a plan. That’s good. Do you get to get out at all?
Nicole, I understand completely. MS is a full time job and like all jobs there are good times and bad.
Jana, You got that right!