This Is MS Multiple Sclerosis Knowledge & Support Community

I've learned so much reading articles and going through this site and others that it's lead me to. Am starting to hone the supplement regimen and gravitating towards certain theories and interventions. I really appreciate TIMS. But all the great info and head-candy aside, I'm just plain discouraged right now.

In a short time out of the gate, I've seen my function go downhill. My N acknowledged that since I'm "atypical" I don't really get the remitting break. I notice from my daily symptom journal that things marked as "new" a couple months ago are now standard. And, while I'm mostly adapting to my postage stamp life, some days it really hits me how steadily my ability to engage in life's activities is shrinking. It's mostly just basic survival and very little else.

I'm interested in a couple of non-traditional interventions I've learned about here, but they'll have to wait. Found out I need another surgery soon although minor this time.

So, hard as this is, I'm just asking for some encouragement.

Donna

Donna,I wish to encourage you, but I don't know just how to it. In my own case, I fall back on my faith. I cling to the promise that I will not be tested beyond what I can bear.There are many times when I am sure I have reached the limit; there are MANY tears. But I also believe there MUST be a reason that I have this awful disease -- I just haven't found the reason yet!

I can only offer you my understanding and suggest my action plan -- read all you can about this disease, share the information you find, know that you can help someone else at this site.

Already, this experience has made you a stronger person!You will face the minor surgery you mentioned with the positive attitude necessary to ask questions and you will find courage.

Donna,

Read the Aug 13th blog here.

http://www.wheelchairkamikaze.com

Donna,
You can complain with us. You don't have to filter what you share or worry that we can't handle or don't want to help with major issues. You can cry here, yell or start a little pity party.

But we move forward and we don't give up and we hope you'll join us in our relentless effort to beat MS.

Ken

bibliotekaren wrote:I'm just asking for some encouragement.

Donna

Donna,

Google these three blogs:


Wheelchair Junkie

Wheelie Catholic (Entirely suitable for non-catholics.)

Brokenclay

--> I like all three of these because they are about living your life and making the most of it regardless of the situation, but also candid about the reality of life with a disability. No mincing of words, no pollyanna. But positive and friendly and not bitter.

***

Good luck. It isn't easy. Do cut yourself a little slack while you are going through a major set of adjustments.

Jen.

Thanks for your responses. And, no worries that I'm going to get stuck in this space. My form of self-pity when I indulge isn't so much the "Why Me" brand rather the "Whaaaa - where's the pause button?!" brand. So it ebbs and flows with how much comes my way at once.

Lately it's felt relentless -- body whack for a couple of years with a still shaky explanation, brain tumor surgery less than a year ago, and two other conditions, one needing surgery soon (that was this week's straw). And, trying to show my added value in the face of uncertainty at work while taking care of my household needs solo.

So, deep breath, fax the next medical form, call the next doc, get the next surgery, continue reading and learning about several conditions, try to be smart and productive at work, respond to the next issue that arises... obtain clean laundry and food sometime... there is no pause button... there is no spoon...

I'll be ok - I know this. I find comfort in simple things. Today I note that most of the coleus on my deck are blooming and hummers come by occasionally (as in the bird not the monstrous vehicle).

Thanks again for reaching out to a relative stranger. I appreciate it.

Donna

Donna, I second everything that has already been said and just want you to know that we all hit those low points where nothing seems to make sense. Hang in there and know that we are here and will listen to whatever complaints, fears, anger and despair that you can throw at us. We understand. We'll also be there to help pull you through it. Good luck

Donna,

We are family here and even better that, we are family that understand your frustrations.

Cat

Thanks so much you guys -- I'm already pulling myself out of it.

I found myself posting encouraging things on my brain tumor forum to people in the middle of big scary stuff. I wonder where the balance is between viewing someone worse off than I and feeling gratitude but not using that to deny my own challenges. Ones that may appear smaller, yet are still mine to own and meet. If that makes sense.

I appreciate the input from each one. And, Cat, good luck at Stanford!

Donna