Thursday, January 26, 2012

Escape from MS

Nicole Lemelle 

Since I’ve formally been labeled “disabled” by society, I’m still struggling to reestablish myself amongst it. I know I will most likely never live as I used to, but it became important to me to snuggle in with myself here and now, as I am – it’s important to me to still try to be me. Does that make sense?

For me that means holding onto things I used to do before MS was in the picture – things I can still take part in – if they include accommodations. In time, my psychiatrist has helped me see these activities as a bridge that allows me to remain in the land of the well.

I realized this when my psychiatrist asked me if I had a hobby that had nothing to do with MS. Hobby? Lady, I’m not sure if I even remember what that is. I live Multiple Sclerosis 24/7. I may have even been slightly offended! Hobby? I don’t have the energy for that. Hobby? I began to sound like Jim Mora and his “Playoffs” rant!

But within a few minutes, I got my bearings and remembered my love for the Spanish language. Yes, I had started learning and speaking Latin Spanish in early college. But several years and many dollars later, I am functional at best! Now, I know there is a cognitive component to MS, but I chose not to let that limit me and returned to learning Spanish.

Do what you can while you can. That’s what I live by! I know this is much easier said than done, but I do things within my means. That’s the key. To my husband’s annoyance, I ended up investing hundreds of dollars in Spanish educational materials. I told him my psychiatrist recommended it!

As I sit here pecking ever so slowly on my laptop, my typing is getting slower and more difficult. I imagine one day I’ll need voice recognition software. An example of yet another accommodation, but am I ready for that one? Nope. I’ll just keep pecking away until I can’t anymore.

Unfortunately, I tend to accept necessary accommodations slowly. I like to do water aerobics, but originally refused to use the chair lift that lowers disabled folks in the pool. What a hypocrite! Right? Well, it took a little coaxing, but I finally used it and felt the cool touch of the water was well worth the short miserable ride into the pool!

So, within 2 months I was able to answer my psychiatrist with a resounding, “Yes, I do have hobbies! I do things that have nothing to do with MS!” How about you?

21 comments:

  1. My hobby is the German language, but also my blog! I'm Italian, so my blog is in Italian! http://ioleilaltra-sm.blogspot.com

    Have a nice day! ;)

    Sarah

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  2. Spanish was my original language and I strongly believe that, in my case, exercising my brain by using both languages has had a positive effect. For example, I do speech therapy in both languages. Spanish tends to use the front of the mouth; English, the throat. By doing therapy in both languages I am helping the speech deficits that had occurred prior to the therapy. As for hobbies, it was only after I left the work world (because of MS) that I allowed myself to write fiction and poetry, and I'm having a wonderful time with it, so different from my business career, which was also fun but different.

    I love your commentaries.

    Judy

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  3. I have the same exact feelings Nicole but I don't have a blog. I can't even stare at my tv or computer screen longer than 30 minutes. My lovely sister is doing the typing for me :) My communication with others is not so great. I would always have to repeat and it is frustrating. I thought I was the only one suffering. The only thing I don't understand is why its happening to me at an early age, I'm a male and 27 years old. Anyways, I feel the same as you. I don't have a hobby. I used to though. Fishing, camping, modifying computers, creating electrical projects, and the loving of basketball. Came from most things, now from nothing. My hobby is trying to communicate with my own family effectively in Khmer. I'm Cambodian-American and i used to be more fluent but now, not as much. Slurred speaking and trying to make sense is challenging for my parents. When its outside of family, my friends do have a harder time understanding me in English. I was excellent in speaking in both in the past but not so great now and family/friends do understand and respects my hardship. I can imagine myself trying to communicate with a psychiatrist and he/she will be scared of me because my frustrations, emotions, and shakiness. So I rather pass and move on because shrinks won't help me. It would be challenging both ways. Well, Nicole you have a wonderful day :)
    Sakeiun and Linda(typer)

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  4. I have too many hobbies! Lol! I love woodworking from building to pyrography and crafting and some (still learning) sewing and creating. I just got into making jewelry and now making a new line of toys with hubby. He just bought me my own domain too besides our sign business site of 11 years. This blog here is my crafty one that I started last year. Making things on my time allowed is fun and takes my mind off of everything else.
    http://hollarwood.blogspot.com/

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  5. thanks all for sharing your experiences!! My name is Hamid from Morocco. I am 36 years old. I lost my sight completely when i was nine years old. At 21 years, i was diagnosed with MS and have been living with it for nearly 14 years now! Of course as everyone else, MS has changed my life too much. I can't practice many of my old hobbies like fixing and repairing things at home. I used to enjoy doing the plumbery, carpentry and even the electricity. I was not a professional, yet i enjoyed fixing the easy problems. I also loved playing the beeping football for the blind with my friends. it's not all dark though! There are things i still could do now even with ms. I still enjoy learning the computer science. I like learning new programming languages. I also love teaching my blind fellows online what i know. We have some chat rooms on skype in wich we help each other. We give presentations and courses in different subjects!! When I have time, i enjoy going out with friends for a walk. In fact, it's a ride for me not a walk as I use a wheel chair (smile). I forgot to tell you that i have a job and I enjoy doing my work as a judicial commissioner. For me, Ms brought some bad things over my life, but I am totally convinced that it taught me other wonderful things as well. Finally, Sorry for my poor English as it's not my first nor my second language.

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  6. Great blog Nicole! I like to read when I have the energy. Music helps me to relax so sometimes I'll put some tunes on and just jam. I have a quest for knowledge just like my father, so sometimes I'll just research something that strikes my fancy at that particular moment. I also like to research genealogy and one of my goals is to try and learn Tsalagi (Cherokee language).

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  7. The blog and responses are so incredible! My husband has been living with MS for a couple of years now. He now loves to read more because the kindle is easier on his eyes and is less bulky to hold in his hands. That is his new source of joy.

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  8. Strangely enough I love to garden, read, church, and antiquing. I just got diagnosed with stage III uterine cancer. Going to keep doing. Got stopped once in the parking lot when I parked in a handicapped spot. I could have told him the MS, chrons, arthritis, cancer, and asthma and grand mal seizures, but all I said was, "The only handicap I have right now was talking to him."
    Don't let the disease be you, find anything to keep you busy!

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  9. I am completely blown away by everyone who has commented. I do not have MS, but my son in law was diagnosed July 2011 at age 28. You guys have such GUTS. I can't tell you enough how much I admire your inner strength. I pray daily for a cure. Hopefully, umbilical stem cell treatments will become a reality and will heal the injured axions and myelin sheath. I see sp many healty people on a daily basis who whine beyond words and the least inconvenience. I also do the same sometimes. After reading these comments, I feel ashamed for thinking I got problems. I do pray everyday for a cure and I want you all to be a positive as you can.

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    1. Beth, I tried to respond earlier, but I got lost when selecting my profile. Anyway, I was 28 when diagnosed with MS in 1988. And today, thanks to Gods'positive response to my as well as my family members prayers, I am capable and able. Maybe not as fast as I used to be on the track team or tennis court but I am mobile and continously trying to find a way to take another step. Hopefully, your son-in-law will not let MS rule his life. For I am an individual that has MS, MS does not have my mind, body and soul. Keep the faith. And thanks for your prayers. May God continue to bless each of us.

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  10. Again, I just feel your inspiring strength in your words. My counselor read some of my poetry, and then one day told me that was going to be my true therapy. She was correct. My issues will continue to evolve and without notice. I've learned to accept it but it is only with inner light that we can learn to be above MS. Stay strong as you are because you lift us with your powerful motivation.

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  11. Hello! As we say in french : bravo!!!!
    I am also blogging and i am a big fan of all ms society members : you inspire me ! I am french so my blog is in french but i Will try to translate this article to publish it because you are an example. I think in french blogs, we are complaining too much :-(( and i would like to change that ! Your blogs and your attitudes are much more positive ! I hope mine too, i do everything i can for that. Thank you for the strenght you givre me !
    Valentine
    http://yeswhatelse.blogspot.com/

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  12. Hi Sakeiun and everybody,

    I tried hard to reply to your poste but the link was not working properly. I don't know if it's a blog's problem or is it my screen reader acting weird again!

    Anyway, I wanted to say that you'd really enjoy life much more if you could find something interesting to do! I know that it's easy said than done is Nicole mentioned, Yet i am sure if you think carefully together with your family and friends, you probablly would come up with something nice to keep you busy. Emptiness is killing!

    When i first was diagnosed with MS in 1998, I nearly collapsed down and was extremely sad and downhearted. For weeks, i kept in a dorment state. I was unable to think properly. After a few weeks, I decided that i should find myself again. I then started regaining my interests and went on with my studies. Since then, a lot of things improved in my life even though My primary progressive MS kept worsening. I believe that happiness comes from within ourselves not from outside in fact! We can still maintain a good active life in spite of our sufferings and health problems.

    Best wishes for everyone and please keep sharing your experiences and thoughts!!

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  13. Reading these blogs realy help me. It makes me feel that i'm not alone. i have to young kids, so i'm pretty busy but i do have one hobby,i'm on a bowling league. i bowl in the winter and i was just diagnosed with m.s over the summer. iam 25yrs old. i thought i wasn't going to let my ms get in my way of bowling,but it did. I couldn't pick up my ball and i got 5 gutter balls in a row.I burst in to tears.i still bowl i don't care how foolish i look!

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  14. So this is your article translated in French on my blog !
    http://yeswhatelse.blogspot.com/2012/01/sechapper-de-la-sep.html
    Thank you !
    Valentine

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  15. Hi Nicole: Thanks for sharing your experiences. I was diagnosed with MS in July of 2011 and find reading your posts very inspiring. Accordingly, I have also started a blog about my experiences: http://www.earthlaughsinflowers.com I look forward to connecting with you via blogging or twitter. My handle is @stephjillabrams

    Please reach out as I would love to connect.

    Stephanie

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  16. Thanks for "virtually" shaking some leaves from my tree! I told a few people about how your post kinda woke/reminded me of the almost life-less life that I've been leading for a little while now. T took your doctor's advice and picked a couple things that I either used to or can begin to do as hobbies!

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  17. I've been diagnosed since I was 32 years old! I have many hobbies but there are a few I can no longer do! I used to cross stitch but because of dexterity issues and my hands shaking I can't enjoy it anymore! I still scrapbook, do photography, and cardmaiking and crocheting! If any of you want a handmade crocheted blanket, I make them free of charge for MS patients! Just email me your address and what color you like and I'll work on it! It takes me longer than it used to but I enjoy it! My occupational therapist told me to keep doing it because it helps me!!!!

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  18. I guess it would help if I included my email addy! LOL. Sueque68@yahoo.com

    I also have a Stampinup site. It is www.suzieloves2stamp.stampinup.net

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  19. Nicole,

    I have hobbies and then I have HOBBIES!! I used to do needlepoint, but thanks to my ever waning eyesight, not any longer. I do crocheting, blankets, stockings for Christmas, and BIG things that do't have to be seen through a magnifying glass. Other hobbies that I have are to go camping with my husband. It gets me out of the house for about 5 months of year and get exercise, too. I read a lot in the warmer months because lets face it, yarn and heavy blankets just aren't my friend when it's warm...

    Huggles,
    Debbie B

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  20. Thanks all for posting !

    Where to begin ? ... I am a 50 yr old male who has always prided myself on being physically fit until I found out that what I was dealing with for the past years was MS. At first, it was a crushing blow to deal with and all I wanted to do was crawl on my couch and stay.

    Fortunately, I have a loving and supportive wife who decided out of nowhere to learn how to run a 1/2 marathon (where did that come from ?).. Anyway.. in an effort to support her, I begin biking because I could not run with her. Now, a year later, she has run her first 1/2 marathon and I find myself biking several miles a week. It feels great ! I also love to travel and we just got back from Rome. We didn't need to do a lot of walking and I had a blast !!! This year it's off to Aruba (wish me luck with the heat). I have decided now that nothing is going to completely stop this boy from moving !!!! Whatever you do.. JUST KEEP MOVING !

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