Wednesday, October 7, 2009

Taking Control of Your MS leads to Taking Control of Your Life

I have been talking to many people with Multiple Sclerosis and I was inspired to write a little about it.

As you all know I am pretty public and open about my MS. That is my choice and the best way I can think of to help others dealing and coping along with understanding Multiple Sclerosis.

The last 10 months have been a major roller coaster ride for me and to be honest I think I am getting a little motion sick from it. It was my choice not to do the steroids for the flare up and I chose this option for a few reasons. One, I have horrible side effects from them and two, I hate the weight gain. However, I was looking at myself in the mirror the other day and no... It didn't break...Thank God... But I noticed that I have put on probably about the same amount of weight over the 10 months that I would have put on in 5 days and probably been able to avoid all these months of being in bed.

With that said, I still try to keep a positive outlook on life. It is very hard at times to continue doing that. I have been talking to "Newbie MS'ers along with others that have had it for years" and it seems like there is a lot of depression and frustration going on. I myself am going through that pretty hard along with anger, sadness, denial,and at times... Giving Up and seclusion. No, these are not the right approach to handling this disease but it is a fact... Most of us with MS will go through these emotions. For me, I need to go through these bad times and emotions to finally get me angry enough to start fighting this disease again.

Multiple Sclerosis can be an extremely exhausting and emotional disease. I don't know too many people that can keep up a consistent positive attitude throughout the course of this disease. However, I think it is so important for all of us to find "something" whatever that "something" is to bring back some of our happiness or strength to fight. For me it is helping others understand that they are not alone in this battle along with spending time with my family and doing some of my crafts that I love to do. I have let myself let go of some of those things and the MS has had a hold on me for some time now. It's funny how I can let that happen to myself but I refuse to let that happen to others. I will be the first person to tell you to fight like hell and to never give in to this disease. We all have heard the saying... "I have MS but MS does not have me"...Or maybe that is one of those quirky sayings I come up with in my own head but it is true. If you are finding yourself getting down and frustrated and giving up or maybe not doing the things you are supposed to be doing (that make you happy), then that should be the first indication to start getting angry at the disease and finding whatever strength you have to slowly gain control of what you can.

Which of course leads me to explaining for those that don't understand MS so well or are new to MS. There is not a course that MS follows. MS affects everyone differently and at different speeds. So, for some people that have MS..They may not have frequent relapses or not many symptoms on a daily basis. And if they are lucky they may not progress like others and the medications they take will keep it under control. For the majority of people with MS life seems to be completely different. It is not a disease that you will ever understand completely. Heck, if the doctors can't figure it all out then we surely can't either. There are no guidelines to this disease. One day We may be fine and doing things normally and in 24 hours or even an hour later something major can really change the course of this disease. We can not control it like we can control other aspects of life. This disease controls us to a degree. It can come on whenever it wants and affect whatever part(s) of the body it wants for however long it wants. It is our responsibility not to give up and let it continue to control us. If you are used to running 3 miles a day and all of a sudden you can barely walk without your legs collapsing. Then in time you slowly work your way back up to doing things. It might be walking with assistance down the driveway, or even just to the kitchen. I refer to this as taking "baby steps". Every "baby step" you take is gaining you control. And then everyday you do a little more and continue this until you are doing the most your body will let you do. That is how you take control of your MS. If it was up to the MS it would have us all bedridden waiting for the end. Be proud of the things you do, to take control.

It is so important to find things to be proud of and to be happy about. By doing this, you are "TAKING CONTROL OF YOUR MS" which leads to "TAKING CONTROL OF YOUR LIFE"

9 comments:

Paul said...

That's a wonderful message, Tara! Thank you. I would like to stay in touch with you. I am especially interested in your canes. I have some ideas that I will touch base with you, shortly.

Amelia said...

Hi Tara,

Please pop along to my blog and pick up your awards!!

Love & hugs
Amelia XxXxX

Living Day to Day with Multiple Sclerosis said...

Paul,
Thank You very much, I am glad you like my blogs. And I would love to touch base with you. Thank you following along!!!

Rae said...

Thank you for your positive words. I really need them. I am in a slump. I have lost so much ground this last year it is getting me down. My weakness is making it harder to do just about everything. Even getting dressed is becoming a challenge.
I never thought losing the ability to walk and being independent would be so hard. Going anywhere takes extra planning and many things I use to do are impossible. I have learned that just because areas are designated accessible does not mean they really are.
I have had to give up going to many places because I can't get access. I wish everyone could spend a week in a wheelchair and then they would have a different outlook.
I apologize for my crappy attitude. Reading your blog helps me cope. It reminds me that I am not in this alone. Right now I am just tired of dealing with everything. I wish I could have one day where I didn't have to think about it.

Kimberly said...

I agree, it does seem tht MS had reared it's ugly head for a lot of the bloggers lately, myself included. My mantra has always been. "I will live my LIFE and NOT MS". However, being human, it's not always easy to keep focused on that. Thanks for the reminder!

charlene said...

i saw your page from kims blog. i have had ms since 2006. i am now following your page and wondered if you would like to follow mine. my blogs are poems i have written. i have one about my ms and will post it soon. http://charleneturney.blogspot.com/

Patrick@Caregivingly Yours said...

Support and care from those who are proud of you can also be the happiest of canes.

Caregivingly Yours, Patrick
http://caregivinglyyours.blogspot.com/

Carla said...

Thank you so much for your message. You read my mind in so many ways with this post. I too dont want to take steriods due to the side effects and weight gain. I had to take it for about a month when I was having a severe allergic reaction to Gadolinium Contrast (for MRIs) while I was having a relapse. It was not fun!

I actually ended up losing a few pounds because my ND had me on a very low-carb diet while I was on it because I am prone to insulin resistance. More than anything, I didnt feel like myself on it in so many ways.

Though I do miss running and playing tennis, I'm very thankful that I can still use my spinning bike, hand weights, cables, balls, yoga mat, etc. You do what you can (keeping safety in mind).

Mitch Thurmer said...

Dear Tara, As usual, You have hit it on the Money ! Here's the weird part. I went back through my old notes and postings, I have said the EXACT same things, almost ver batum.
I have come to opinion, that all of us are going thru the same problems. We all are feeling the sense of hopelessness that creeps in much too often. Despair becomes a companion, that we really don't want to know.
I have had this mess for almost 20 years. The different stages of feelings that the NMSS said would come did exactly as they said. All the Depression, The Pain, the Confusion, ETC. But, it keeps coming back, and to top it all off, besides our internal problems, the Society in which we live is changing, for the worse.

Medicare has problems, YES, but, we do have something and the system hasn't been that bad. Tennessee tried Healthcare for everyone about 20 years ago, an experiment called Tenncare. You can read my Blog and find all the gory details, it failed, bad.

So, on top of everything, we have more to worry about. More Stress, more Sleepless nights. Deanna and I went to bed last night at 10:30. I laid there until 1:30, got up, read a little, went back to bed. Took one of Deanna's sleeping pills at 1:30. Fell asleep at 3:30. back up at 5:30. I am in a daze and probably repeating what I have said, yee-hee, Take a trip and never leave the Farm.

Any, Great Job, HANG IN THERE,
We are in this together,
Mitch Thurmer

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