I think one of the facets of multiple sclerosis that has whacked me the hardest is the amount of dependency it thrusts upon me. So now, when I discover outlets that allow me to exercise independence, I am elated!
Last weekend was the first time I have gone to my local park and used my scooter all the way around the jogging track. It was early and cool, so heat and humidity was not a problem. It took my husband and I an hour to finish the entire path, but I felt better for having taken on the challenge of being amongst the healthy in this feeble body of mine. That is obviously the core reason I haven’t been to the park in a long time. Well, that and of course the heat factor. I’ve come to realize there are ways around my limitations if I just show initiative and a little grit.
I was on my scooter but I was still able to convince myself that if I held my stomach in, sat up straight and tried to squeeze my rear end tightly, I was somehow working my core strength. I hope it was an accurate assessment. But nevertheless, I took a huge step in the right direction. I enjoy being outside at the park. I even enjoy being in the company of the walker/runners.
I still may resent them a little bit, but I’m working on that.
We were at the park in the first place for a laughter yoga class, but when I failed to see the group we just kept on going around the track. To be honest I surprised myself. I had no intention of taking on the track in my scooter. Who goes on a track with a scooter? It really sounds pretty silly to me. Unbeknownst to me, my yoga class must have been cancelled because I certainly didn’t see them out there. But I’m glad I didn’t stop looking for a gang of silly people laughing for no reason. Laughter yoga is another little simple pleasure I enjoy, similar to the way we meet here to exchange ideas and best practices.
I can’t help adding that often my husband invites me out to the park to join him for a trip around the track. For some reason he seems to like for me to come along wheelchair or not. But for me, in the past the entire event has left me a bit down. You know because I use to run. I think I told you once I went and saw the group of guys that I used to proudly jog with. It hurt to see them. I was even a bit jealous. I even selfishly told my husband I just couldn’t go anymore. He of course soon stopped going as well. Which made me feel like crap. I had just taken away his bit of respite from caring for me 24 hours a day. You’d think he could just go alone. Except, to make matters worse I shared with him I was kind of scared to be left in the apartment by myself. He can’t win!
But this weekend was different. We both went and I feel like I won a little piece of “us” back.
I try not to be jealous of others. There is always a reason to envy big and small. I understand your feelings as I am very conscious of my ability to walk. I never take it for granted. I feel so bad for those that can’t and I am aware of mobility issues. I took care of a disabled child so I get it. I know the probability of my losing the use of my legs is real and I cherish my ability. I survived aggressive cancer 17 years ago so I see the world a little different from most. Jealousy is a waste of time. It just makes you sad.
I am glad you went to the track. We make do with what we have. It took courage to do what you did. You set a good example. Try to keep it up.
Lisa, thanks. You are jealousy is a waste of my energy. I just have to watch our for it from time time
Hi Nicole, thank you for another good article this week. Your’s is one I make sure to read on a weekly basis because you keep it real! Envy and jealousy are such nasty emotions that I don’t want to even comment on them. Although I’m glad you could get out to the park for a change, that’s great! I hope you’ve gone back to water aerobics also, I’ve been doing it to a month now and if your class was at all like mine I’m sure they’ve missed you. I’ve also been riding a recumbent bike every day and the improvement I’ve seen is truly remarkable. I do sense some guilt for taking my mobility for granted, yet my goal is to walk in April 2013 in the WalkMS event here in Orlando and my progress has almost eradicated those guilty feelings! Your writings and work are key contributors to my motivation and success so I selfishly implore you to keep fighting the good fight! You’re worth it and we, your readers, appreciate your efforts.
Sincerely,
Tim
Tim, thanks so much. By the way, how long an you go on your bike?! Please don’t feel guilty for being able to walk, just grateful 🙂
Your post does a good job of reminding me to stop complaining about all of the things I can no longer do. I actually instantly deleted an email from an old soccer team mate wanting to know if I wanted to join his over 35 team. I played for 20 years, and the teams the two of us were on at the end were very competitive against college and semi pro teams…All I felt when I saw his email was a sense of loss of a part of me I’ve not felt for years. It’s hard for me to even watch college or U.S. pro soccer.
The flip side is this all makes me appreciate what I can still do. It’s why I run and take the stairs all the time. Losing dexterity is so little. Some pain is doable, and there is still so much I can do. Heck, I spent 6 months numb below the waist, and a couple of years too dizzy to run, so I’m thankful for every day I can still do even some of the things I want. I know this won’t come off right, but you sharing your frustration with not running is good motivation for me. Thanks.
well lived, I understand and you pulled it off just right.
Hi,
I so feel you. It is that initiative and grit part that is so much easier said than done. Most days I am trapped in an emotional hurricane and cannot not get out of the rotation….not to mention if in addition it is a elevated symptom day also. We all know the recipes for healthy living, managing MS etc. Having and keeping the positive mental energy to engage life is where I get stuck. Perpetual work in progress.
I would like to give a Whoo Hoo and good for you to you Nichole and the other MSers that got going and seized the day. KimC
Kim C, So when are you gonna seize the day? Thanks for reading. I appreciate it.
Working on it…..
My scooter has been broken for a while now, and I really miss it. I keep thinking that I’d go out more and do things if I had it. Your post makes me want it back even more. I’ll work on my husbands purse strings again!
Peace,
Muff
Muff,
Sounds like good idea to me!
I forgot to ask — how did you get 8 tiles on your Scrabble stand??? You must have gotten a really high score! [jk]
I absolutely love this post!!
I hired a scooter for the first time this summer on a weekend away after telling both my daughter in no uncertain terms, when they broached the subject gently, that I was not ready for this!!!!
However, after realising how much I would miss without this new assistance I gave in. I had a wonderful weekend and went too fast for them to keep up with me! So for the first time in ages I felt like I was outside in the fresh air on my own!! 🙂
I am now in the careful process of buying one of my own; I can’t wait to go round the block again with my lovely dog. That is my aim for now. Your sentence “when I discover outlets that allow me to exercise independence, I am elated” makes so much sense and I relate totally.
The dependency thing is my greatest ordeal too I think and I have only recently realised that the more people do for me, the more I have started letting them do. So my resolve now is to make sure I do as much as I can when I can and to motivate myself to do more, working sensibly within my new limitations of course so as not to cause unnecessary fatigue, which then stops me doing anything at all!
We have an MS therapy centre only about 10 minutes drive away from home! So far I haven’t been able to bring myself to go; that is like saying to the world “Look, I have MS”!! Sounds silly but there it is. So my aim this week is simply to go and introduce myself, fill in a membership form and have a look round. I can’t drive anymore so I will go independently in a taxi. They do all sorts of great therapies, including physio, reflexology and similar things, pilates, a vibro-gym with specialised equipment etc etc etc. Membership is only £15 a year and the sessions are paid for in the form of donations. What am I waiting for!! This is a doorstep gift!! 🙂
I may well be back to let you know how I get on!! 🙂
Christine
Christine, I wish we had something like that here in New Orleans!
I’m with you, Nicole! I would love it if there was something like that in my area! But I can also relate to you, Christine. There’s an MS support group in my area & I don’t attend for a few reasons. One, the time or 2 I did go, it seemed as if the group that was there were those who were way further progressed in their MS &, to be honest, it freaked me out! Mind you, this was when I was.FIRST diagnosed, but I think it’d still freak me out a bit. Plus there wasn’t anyone there close to my age (I’m 35), so it made it even harder to relate. & that’s the thing…I’m one big “catch 22!” I don’t have anyone in my life near me who I can relate to (& vice versa), making having/living with MS a very lonely road to walk alone! But on the other side, its very difficult to embrace having it (even after being diagnosed 5 yrs ago). In many ways, I’d rather pretend it’s not even there & go about my life like I’m “disease-free.” Ugh! Like I said, one big “catch 22!” :-/
Nicole,
As usual, I can totally relate to your latest post…
I see people walking around, here and there, not even giving it a second thought.
It wasn’t so long ago I was like that too!
I took my dogs out for a scooter ride/walk today…One of the things I have missed the most is walking my dogs.
I walk but not very far, and not very long 🙁
My dad bought me a scooter recently, so I could cruise around my neighborhood with my dogs.
It is bittersweet, but I am grateful.
I ride on the same route I walked on for years. My dogs love every bit of it!
I find myself feeling a bit sad, but I KNOW it could always be worse.
Thank you for this blog, Nicole.
I can so identify with you 🙂
Faye, Thanks for reading. I must say I haven’t yet seen someone scooter walking their dogs! What a great way to adapt and move on!