The good use of my time

I was always reluctant to go to the local M.S. support group meetings.  Oh, I went when I was first diagnosed, but felt symptom-free and irrelevant.  I felt like I didn't have anything to offer those already in wheelchairs and dealing with the Social Security Disability system, for example.

Now that I am more disabled, I find that I'd rather spend my limited energy on other things.  Like this MSFriends Peer Support Hotline.  Everyone I've talked to so far has been a "repeat caller" and I'm constantly surprised and pleased that my experiences and the seemingly random things that I've gone through has allowed me to personally relate to every repeat caller so far!

For example:

M. sounds like a NY socialite. She recently took a fall and. is now relying on a wheelchair (me too) and availing herself of the public transportation van service for the disabled.  I told her that I had been finding comfort in Nancy Mairs' book Waist High in the World.

She was moved to a short-term nursing facility but now has decided to move into an assisted-living residential facility. She asked me whether I thought it would be better to live near her children or to live near her friends.  I said friends, definitely, that I consider it a quality of life necessity, but that she should consider the source: I'm childless.

E. is suffering from a similar type of bowel issue to what OH is currently wrestling with.  Because of this, I was familiar with his meds.  He told me his gastroenterologist and his neurologist were not sharing information. So I suggested that he continue to look for doctors, that it was not inconceivable that he could be suffering from more than one thing, and that he needed a "quarterback" to manage the team.

D. was despondent over her chronic M.S. fatigue.  I told her that I had recently read a description of M.S. fatigue as a "system-wide shut down."  No wonder she was suffering!  I told her to be gentle with herself, to allow herself to take naps during the day, but she replied miserably that she had found that they interfered with her nighttime sleep. 

So I reminded her that there was medication that could help, and she admitted to me that her neurologist had given her a prescription for one but that she was afraid to take it.  Did I know of anyone who had already taken it?

Amazingly, I had!  But I told her that I was not taking it right now because fortunately I had experienced M.S. fatigue as a flare-up, an exacerbation, and so I wasn't dealing with it at the moment.  I told her that it was okay to take 1/2 or 1/4 of a pill at first to experiment with how it affected her.

J. sounds like the Eeyore character from A.A. Milne's Winnie the Pooh.  You know, "Don't mind me but thanks for noticing."  He apologizes for taking my time every time he calls.  He didn't want to have co-workers feeling sorry for him, or giving him special treatment, so he didn't tell them about his disease until his boss pulled him aside to "talk about his drinking."

S. is in Louisiana and needs a neurologist that accepts Medicare.  She says that her MRI scans were lost and one of her neurologists went missing after the hurricane Katrina.  Another died of old age.  When I suggested that she could go to medicare.gov to find a doctor that did accept Medicare, she admitted with embarrassment that she didn't have a computer.

I felt like such an idiot to assume that everyone had computer access in their homes now.  I got her street address, then went to the site myself and printed the list for her.  I also included in the envelope the phone number for the Louisiana chapter of the National Multiple Sclerosis Society and some other local resources. 

T. can no longer play his guitar or paint, but all his friends are urging him to write a memoir, to tell his story.  He's wants to do it but he's paralyzed about where to begin. 

I told him that I've been interested in writing since I was young, have read a lot about it and have taken lots of classes on it. I then suggested that he not get hung up on the intro.  That he should just remind himself that he can come back to it later, but just to dive into the story.  Maybe start with his childhood.

And even then, like the author Anne Lamott notes, "(W)ith writing, you start where you are, and you flail around for a while, and if you keep doing it, every day you get closer to something good."

Happily, I'd like to reiterate that I feel strangely, uniquely qualified to volunteer here and that I have discovered a purpose.  This is truly peer support. These are my peeps.

Related links

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The good use of my time

I was always reluctant to go to the local M.S. support group meetings.  Oh, I went when I was first diagnosed, but felt symptom-free and irrelevant.  I felt like I didn't have anything to offer those already in wheelchairs and dealing with the Social Security Disability system, for example.

Now that I am more disabled, I find that I'd rather spend my limited energy on other things.  Like this MSFriends Peer Support Hotline.  Everyone I've talked to so far has been a "repeat caller" and I'm constantly surprised and pleased that my experiences and the seemingly random things that I've gone through has allowed me to personally relate to every repeat caller so far!

For example:

M. sounds like a NY socialite. She recently took a fall and. is now relying on a wheelchair (me too) and availing herself of the public transportation van service for the disabled.  I told her that I had been finding comfort in Nancy Mairs' book Waist High in the World.

She was moved to a short-term nursing facility but now has decided to move into an assisted-living residential facility. She asked me whether I thought it would be better to live near her children or to live near her friends.  I said friends, definitely, that I consider it a quality of life necessity, but that she should consider the source: I'm childless.

E. is suffering from a similar type of bowel issue to what OH is currently wrestling with.  Because of this, I was familiar with his meds.  He told me his gastroenterologist and his neurologist were not sharing information. So I suggested that he continue to look for doctors, that it was not inconceivable that he could be suffering from more than one thing, and that he needed a "quarterback" to manage the team.

D. was despondent over her chronic M.S. fatigue.  I told her that I had recently read a description of M.S. fatigue as a "system-wide shut down."  No wonder she was suffering!  I told her to be gentle with herself, to allow herself to take naps during the day, but she replied miserably that she had found that they interfered with her nighttime sleep. 

So I reminded her that there was medication that could help, and she admitted to me that her neurologist had given her a prescription for one but that she was afraid to take it.  Did I know of anyone who had already taken it?

Amazingly, I had!  But I told her that I was not taking it right now because fortunately I had experienced M.S. fatigue as a flare-up, an exacerbation, and so I wasn't dealing with it at the moment.  I told her that it was okay to take 1/2 or 1/4 of a pill at first to experiment with how it affected her.

J. sounds like the Eeyore character from A.A. Milne's Winnie the Pooh.  You know, "Don't mind me but thanks for noticing."  He apologizes for taking my time every time he calls.  He didn't want to have co-workers feeling sorry for him, or giving him special treatment, so he didn't tell them about his disease until his boss pulled him aside to "talk about his drinking."

S. is in Louisiana and needs a neurologist that accepts Medicare.  She says that her MRI scans were lost and one of her neurologists went missing after the hurricane Katrina.  Another died of old age.  When I suggested that she could go to medicare.gov to find a doctor that did accept Medicare, she admitted with embarrassment that she didn't have a computer.

I felt like such an idiot to assume that everyone had computer access in their homes now.  I got her street address, then went to the site myself and printed the list for her.  I also included in the envelope the phone number for the Louisiana chapter of the National Multiple Sclerosis Society and some other local resources. 

T. can no longer play his guitar or paint, but all his friends are urging him to write a memoir, to tell his story.  He's wants to do it but he's paralyzed about where to begin. 

I told him that I've been interested in writing since I was young, have read a lot about it and have taken lots of classes on it. I then suggested that he not get hung up on the intro.  That he should just remind himself that he can come back to it later, but just to dive into the story.  Maybe start with his childhood.

And even then, like the author Anne Lamott notes, "(W)ith writing, you start where you are, and you flail around for a while, and if you keep doing it, every day you get closer to something good."

Happily, I'd like to reiterate that I feel strangely, uniquely qualified to volunteer here and that I have discovered a purpose.  This is truly peer support. These are my peeps.

Related links

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My wheelchair

OH has become the craigslist master, finding free stuff in the ads that he needs to finish construction on our house. Not just bay windows, but hardwood doors, a complete closet system, even lumber.

And one of the things he recently found for free is a wheelchair.  It doesn't have its footrests, but when the humanitarian who was offering 4 free, used wheelchairs learned that I have M.S., he told OH that he would reserve the best one for me.

Ever since we went to Bellingham and used the borrowed wheelchair, I have realized how useful a wheelchair is to accommodate us together.  While I do have my scooter, a wheelchair allows OH to stabilize himself while pushing me.

When I was diagnosed in 1991, I was told to go home and start preparing to be in a chair soon.  I even saved some ratty Chuck Taylor Converse hi-tops to wear while in the wheelchair so that people wouldn't see me and feel pity, that everyone would know I used to be able to walk.

But as time went by, I stopped waiting for the possibility.  And I believed what the doctor told me in 1991, that I could assume the severity and progression of my disease could be gauged by the initial five years after my diagnosis.  Obviously wrong.

Now the wheelchair is folded up in the living room corner, calling to me.  I'm always aware and worried when I am hobbling around that I will fall down.  It's tempting to know that I could be less stressed about it by sitting down.

The author Nancy Mairs who chronicles her M.S. in books like Waist-High in the World: A Life Among the Nondisabled recounts that she had a serious fall on her head then decided she would "give up walking" after she "had another such mishap."

However I don't want to "give in" to the deterioration prematurely.  And "sitting on your ass" is synonymous for being lazy. So how will I know when it's time?

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My world is narrowing

I once read a book titled Wide My World, Narrow My Bed (about consciously choosing to live a happy and adventurous single life). I love that title!  It has stayed with me.  Lately I’ve realized that my situation has become the opposite: wide my bed–we sleep with dog and cats on a king-sized mattress–and narrow my world.   Because ihn recent years, I leave my home less and less.  My world is shrinking.

I’m not bringing this up to encourage pity or sympathy.  I’m trying to examine and explain it logically and with detachment. For example, I now work from home full-time, teleconferencing into the office for meetings and collaborating with co-workers on projects via e-mail and instant messaging (IM).

I am still an active member of the local chapter of my professional group, the Special Libraries Association (SLA), although I rarely attend meetings in person anymore.  I do serve as owner of our e-mail discussion list and I recently completed a two-year stint formatting, posting and billing for the local job listings on our web page.  For ths I even got an award.  Monthly we have our board meetings, with everyone calling in to teleconference.  

So for now I’m still able to volunteer my expertise and to work full-time.  

I bought a house near the coast, thinking that cooler weather would be better for me if my disease advanced. That is, in a worst-case scenario (which I now consider just a worse case scenario. You know, hope for the best but plan for worse).  [I can’t believe I’m at “worst-case” levels–you can always find someone worse-off than you.]

I use the scooter to get around, which helps with my waning mobility, but I’m also starting to be very sensitive to even minor increases of temperature and to experience more frequent bouts of extreme fatigue. From time to time my friends and family have pointed out that I’ve always been a homebody, that I’d have a harder time with this decline if I was an avid mountain climber or marathon runner. I suspect this would be true.  

But I’m thinking now about how I can take advantage of being less mobile, turn it into a positive. Like make better use of the telephone and my organizing skills.

One thought is to become a birthday monitor–keeping track of everyone’s birthday, age, anniversary; sending cards and keeping everyone else informed.   Another is to set up a telephone calling schedule to make sure I stay in regular contact with friends.  Also, from time to time someone will ask me if they can give my phone number to a loved one who is newly diagnosed.  I always say yes, but I’m remembering how surreal it is to be newly diagnosed and thinking I can be more proactive and call them.

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“Share The Care”

I got the idea that having a list of projects we intended to accomplish to finish the house would be useful for when someone says they want to help and is there anything we need.  My thought was to break the projects into smaller projects so that we would have some ready projects to give when asked.

Then I found a copy of the book Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill (Capossela & Warnock). It is written by two women who came together with a small group of other friends and family to manage the caregiving for a woman whose cancer was getting worse.

I've started to think about those of us with MS who tend to heavily rely on our spouse or a close friend for solace and support, and how quickly burnt out those people can become.  I think it is very common for a caregiver to get overwhelmed.

Granted, MS is not life threatening and there are certainly often times when an MSer can manage whatever without help.  There aren't necessarily frequent visits to the doctor for which they need a ride, for example. And we Msers are reluctant to ask for help and often resist it.

But so too "healthy" individuals fear offering help to a person with MS, fear that they will be asked to do something they don't know how to do, fear that others will see their fear of illness or that they'll be taken advantage of or that they'll come to be relied upon and thus locked into a commitment.  Still people do want to help, so how practical it would be to create a "team" to share in it.

And the system of forming a team of caregivers laid out in this book starts with a group meeting to create a structure for it and get everyone on the same path.  As the manual says "it gives you something to fall back on when things get difficult, a ground of being that keeps the group going, keeps the individual members from burning out, and keeps the group together."

I've heard several accounts of people that got together to fundraise and walk in the MS Walk just after someone they knew got diagnosed, for example.  Obviously these are folks who want to help and might be interested in joining this team.

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Quote of the day

"Defining my heart attack as an incident left me dependent on good health, which I once again assumed as my right.  I still did not know how to enjoy health without making it a condition of my life.  We are free only when we no longer require health, however much we may prefer it." [emphasis mine] 

–From At the Will of the Body: Reflections on Illness  by Arthur Frank, Ph.D.

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I try another MS Diet

I was diagnosed in 1991.  Shortly after that I bought and committed to follow The Multiple Sclerosis Diet Book by Roy Swank. The book maintains that a chronic disease like M.S. requires a permanent "adjustment of everyday patterns of living," which at the time of my diagnosis seemed like a no-brainer.  Sadly, I only lasted about a year, and I took to retorting "A life without cheese is no life at all."

In addition, the medical community consistently pooh-poohs diet as having anything to do with M.S.  So I wasn't really going against prevailing theories.  And I like cheese; the Swank diet is low-fat for the rest of your life: no cheating, no exceptions.

But in the last couple of years, my health has started to get noticeably worse: my vision is unsteady as is my balance. My writing is gone, and my walking is very limited.  And I have started to question, would this be different if I had given up cheese for the rest of my life?

So in this mindset, I came across a new book The M.S. Recovery Diet by Sawyer and Bachrach.  They praise the low fat approach of Swank, but they conclude that the real problem is the food sensitivities of each individual so there is no one diet for everybody.  They define food sensitivities as the "reaction of the immune system to antigens," that the body produces antibodies in response to a perceived antigen.

I am skeptical, but they don't suggest I will have to give up anything permanently.  Just to start to identify, by watching my reactions even as soon as after the most recent meal, and eliminate foods that trigger symptoms. Then, they maintain, as symptoms fade and disappear, the disease itself slows or halts and recovery begins.  Once recovery starts taking place, the immune cells "forget" an antigen, which allows foods to be returned to your diet.

I'll keep you posted.

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