Thursday, March 5, 2009

MS Awareness Week: What to Do, What to Do?

So you find out you have it. You know vaguely what it is, what it does, what it might do. You have an idea what the costs are going to be, monetary, physically and emotionally. What next?

Everyone has a different response to having MS, even if their coping styles might be in the same continuum. We are all different, with different priorities and different baggage. Our history and our present circumstances will combine to form the foundation of what our next steps will be.

The possibilities are endless, it would be pointless to list them here. So I am going to share my thoughts, after four years of experience, about what could be the most proactive approach to dealing with something that will be your unwanted guest for the foreseeable future.

Maybe I should start by suggesting some things that might not be in your best interest. Of the things I will cite of them are counterproductive behaviors that someone who may or may not be writing this piece did indeed engage in.

• Don’t pretend it will go away on its own.
• Don’t allow your family to ignore it as well.
• Don’t ‘forget’ to take your medicine all the time because it is PREPOSTEROUS that you, someone who had babies at home, have a chronic illness.
• Don’t isolate yourself.
• Don’t make hasty decisions.
• Don’t think your life is over.
• Don’t settle. For anything. Healthcare, information, assistance, anything.

So here are things that could be helpful.

Find out all you can about the illness, whether it has happened to you or a loved one. It is such a cliché, but knowledge is power. Knowing about how the disease works might make you feel less scared. Unfortunately, it may also make you feel a thousand times worse, so make sure you reach out. Talk to someone who will listen without getting too emotional as well, such as a clergyperson or therapist. Someone who can maintain perspective can really help you recover your's as well.

Find a doctor you like and trust, even if it means changing several times. You deserve the best care available. You need someone who will listen and be respectful, someone who will be a partner, not a dictator.

Consider all your treatment options and what impact they will have on your life. Don’t go with the first one offered because it is your doctor’s favorite.

Make sure your family really understands what MS is and what it does to you. Ask for help. Life has changed, you all have to find new roles. Again, if that process is hitting bumps in the road, consider a third party to help coach you along.

If it appeals to you, look for support groups. I am not a big joiner. But I have a group of online friends that I could not survive without. We are all similar in our irreverence, sense of humor and intolerance for platitudes. But that isn’t everyone’s cup of tea. You know yourself better than anyone. If you need a warm fuzzy group get out there and find one.

Keep doing the things you love as much as you can. This is something I am still working on. I am a museum fanatic, but can’t manage the walking anymore. And I am so reluctant to use a wheelchair. I might try a walker as an interim step, but still have to steel myself to that purchase. Do yourself a favor and just go for it. Although even as I say that, I recognize some of us need longer to process things than others (decades in my case). So if you need to take your time, do that. Just don’t close the doors to things that bring you joy.

Involve your family. Make sure they understand how sick you are. This is a huge mistake I have made, still keeping that Superwoman persona going. To my great detriment. Because my children appear to have a really hard time acknowledging I need A LOT of assistance. That is my fault entirely for allowing the myth to persist.

One thing that I have also found makes me feel empowered is the annual MS fundraising walk. I will be honest up front, the MS Society is not my favorite organization. For one thing, it has MS in its name. Instant dislike. For another, if it was a person, it would be so freaking perky. I hate perky. And I, along with my fellow MS cranks, find the current ad campaign embarrassing. “Join the Movement”?!?! To some of us with adolescent minds and a bent for scatological humor, ‘movement’ only means one thing. For others of us who were around in the sixties, it is like, come on, is that the best you could do!?!

However, A BIG HOWEVER, the MS Society does really, really good work. Not all the local chapters are the same. For example the chapters in Connecticut and St. Louis earned the highest rating of four stars from Charity Navigator (a GREAT source of information about charities), but the one in Charlotte only has one star. It depends on their local administration. I am so fortunate to live in the northeast, where most of the chapters are powerhouses of assistance. They provide information, aid, classes, support, encouragement and fundraising.

The National MS Society has a good ratio of programs funded to administrative costs. More than eighty five percent of all dollars raised goes to help people with MS. Some of the local chapters do even better. Some examples for comparison: the American Cancer Society uses only 68.4%, the National Organization on Disability, 64.7% and the American Foundation for the Blind, 69.2%.

The MS Walk takes place nationwide and in our area it is on the third Sunday in April. When I take part, I feel as though I am doing something proactive for all of us with MS. Some of the money goes directly for programs, but much goes to research to find a cure. The research done over the past years has lead to more and more and more treatment advances, so a cure does not seem impossible.

Plus, the walk can be fun. My team grows every year, and here is my shameless plug: I would LOVE it if you would join Team Cooper this year on the MS Walk. There is no minimum to raise, no minimum to walk. It is a great way to get together with friends and raise money for a good cause.

This link takes you to my personal page at the MS Society website. You can register for our team or make a donation.

Marie's MS Walk Page

Tomorrow I will do my final MS post for this week. I will share what people with MS would really like others to know about having this disease.

1 comment:

Katja said...

Don’t ‘forget’ to take your medicine all the time because it is PREPOSTEROUS that you, someone who had babies at home, have a chronic illness.

And here I thought I was the only one!