Archive for July, 2012

41

Losing Control

I often say that losing control is one of the worse things about MS. I’m not just talking about bladder control, although that is a demoralizing demon all by itself. I am talking about control of my daily routines and affairs. I’m very fortunate to have a helpful husband to be going through this with and I have an excellent collaborative medical team.

But the raw control I have over my life is diminuative at best. My husband gets the brunt of my temper tantrums. He sees me at my most vulnerable times. He usually talks me into doing what’s best for all involved. When sometimes I just want to do what I want to do! Since I am a permanent passenger sometimes it’s as mundane as wanting to take a different route. Or maybe go and visit my parents or a girlfriend.

But I’ve got to give it to him, he never asks me to wait in the car while he “runs” in a store real quick. Often friends and family do that. But I understand it and I don’t fault them. After all, nothing involving me is “real quick”. Hubby simply said he doesn’t ask me to wait in the car, because he enjoys my company. That was sweet. Plus, I guess since he is a young man, hauling around my scooter or wheelchair isn’t really a deal breaker. I don’t mention to folks that I do mind waiting in the car. I’m usually just so grateful for the outing. But boy do I wish I had a bit more control of the situation. Wow, I hope now I haven’t already offended someone.

That’s why it was interesting when I read somewhere that giving up control can be a bit freeing.

I never considered that. Letting go is a new concept. I’ve been beating myself up over the control I thought I needed.

Well, I just may have to let go of that control wish, because it doesn’t look like it’s gonna happen anytime soon.

Now, if it’s actually freeing….stay tuned, I’ll let you know.

58

Bored With MS

Day in and day out you can find me at home on my laptop. I admit, I do get out a lot more than most but sometimes I’m still just so restless. Often, to be quite honest with you, I’m plain old bored. I can’t believe I have the nerve to say that. I sound so ungrateful an entitled.

I don’t have the energy for most things so it becomes tricky. I don’t really like going out and rolling in my wheelchair amongst “walkers” and there is only so much daytime TV a girl can handle. Besides I don’t even like the soap operas. Dang, from reading this I sound like a real drab person. I promise you I’m not. Just bored.

My MS is just so limiting. Now, I must figure out what I can do. I just wish there was somewhere I could hang out during the weekdays. A location that is similar to an adult day care place. Well actually that’s exactly what I mean. Most centers only take ages 55 and older. Nothing I’ve come across really applies to a 37 year old vibrant young lady that happens to have MS. It’s funny because I attend a gym that is located next to an assisted living community where I do feel quite comfortable. At least when I visit there I do feel at home. The gym has mostly elderly members getting around with walkers. I feel like a star with my scooter. Now, how can I get more MSers in town to come?

But I guess if that’s my biggest problem then I must be doing pretty good. Maybe I will look into those adult day care places after all.

20

What I Can Do

“Do not let what you cannot do interfere with what you can do.” – John Wooden

Isn’t that the story of all of our lives, MS or not? Well, at least it’s a part of my everyday struggle. Especially when it seemingly becomes easier to list the things I can’t do. But once again my friends, perception is everything. Sometimes we have to tweak our assessment in order to move on in these never ending new normals of ours.

I have learned the lesson of embracing what is. Not to resist it simply because it is already done. Quite frankly I have fought with every new symptom that has come my way. At first, I was fortunate enough to only require a cane. At the time, I thought it was a death sentence. I’d rather trip and fall instead of using that dreaded cane. Now that I need to use a scooter, I long for those days of canes and walkers. I wish I had enjoyed it while I could. The transition probably would have been a lot less stressful.

Now several years into this new normal, I’m still riding the wave I mentioned last week. It’s unfortunate that I can’t live like the able-bodied. But the fact is I’m not. Sometimes I resent that and sometimes I’m okay with it. It just depends.

But what I will not allow is for my restricted status including the fatigue, limited mobility and memory loss to get in the way of what I can do! Because if I do then MS is winning and we can’t have that.

Thanks Mr. Wooden and rest in peace.

36

My Greatest Goal

This too shall pass. I know and believe this always. Still I must cautiously scream it because recently, I’ve been feeling pretty stable in this normal of mine. As a matter of fact it resembles the old me I know and love. Now I haven’t gotten any miracle drugs or anything I’m just taking my regular meds including my newest prescription of Amprya. Oh and at physical therapy they’ve started putting me on this Functional Electrical Stimulation (FES) device. It basically delivers impulses directly to the muscles bypassing my weary nerves. This assists my legs allowing me to do things I can’t do on my own. My heart accelerates and I even get a bit winded as if I’m exercising. Initially, I was using it while riding the associated bike, they later figured out a way to use it while I stood and held on to something sturdy. I would lift my leg as far as I could and the pulses to my muscles would do the rest. Does that make sense? Well, afterwards I can do movement I couldn’t before albeit slow and deliberately.

Not to belabor the point, but it works similar to the Bioness. You remember the device my insurance company won’t cover.

Lately I’m using my walker more inside the house. No more crawling. Maybe all these things are coming together to keep me in good spirits. And that’s really the endpoint for me. I may look handicapped but I don’t have to act like it. Like I’ve said time and time again, if I let M.S. take my spirit then I’m losing the battle.

Thank goodness I’m not. Losing… that is. I think I’ll just keep riding this wave.

Folks, this is what works for me. My greatest goal is help you find what works for you.

I’ll leave with a quote I just stumbled upon and thought it would was befitting for this post.

“You have a choice. You can live in the No of your life or you can live in the Yes. Look at what is flowing, working, moving. Being in that energy will beget more positive experiences.” – Unknown.

30

Where’s The Help?

I recently spoke to a newbie MSer. She reached out to an international MS organization for help early in her disease process and was subsequently declined assistance by the group. I was very surprised to hear this, especially because it is a celebrated organization. I know this had to be devastating for her. Not just that she was rejected in her moment of need, but that the news came at an inopportune time. This was right after her diagnosis, which is probably the most vulnerable, depressing, and confusing time for a person living with Multiple Sclerosis. She vowed to never support that MS group again. I thought her reaction was a bit hasty but at that moment, while dealing with such a heavy blow, her emotions were probably all over the place.

This isn’t the first time I have heard such strong distain for MS organizations. I have communicated with a number of people who are totally against any and all MS associations. I’ve heard such things as:

-Not enough money is going to the cause.
-They are co-opted by big pharma.
-Lack of tangible patient services and research endeavors.
-Marketing and branding drive them.
-Too much money spent on administrative and fundraising costs.
-They spend more time empire building than helping people.

Are these real reasons to distrust all MS organizations or have they spawned from conspiracy theories and cynicism?

I have found more support locally than on the national level. I even received help paying for school after being diagnosed. I received my “life saving” cooling vest from a notable MS group. Other times when I was told I didn’t qualify for assistance I obtained referrals to other support opportunities. I guess I have been one of the lucky ones to receive help from a few different MS organizations so my skepticism is pretty low.

I need to know, am I being fooled?

Are harsh feelings toward MS organizations common? Are most people in support of, against, or indifferent towards MS groups?