Thursday, August 18, 2005

DISABILITY and Living Well; Outings!

Today we are starting a series of blogs about every day living with a disability. One of the things that I have discovered over the past 5 (five) years where I have been on Long Term Disability (LTD), is to redefine the concept of "Living Well". These blogs will share examples of "before and after" stories in my life that describe how "Living Well" has changed, for me, but that change does not mean "for bad", it can be for better! Hopefully, my stories and examples may trigger ideas for you on your journey/transition from your "before and after" disability.

If you are like me, you used to do a lot of things that your current situation has changed. One of the hardest lessons for me to learn (besides patience, which I HAVE NEVER LEARNED, AND PROBABLY NEVER WILL!!) was that of substituting new pleasures for previous, loved ones.

AND, you don't have to make these changes by yourself (as a matter of fact, it is far easier to make the changes if you get feedback, help, and support from family and friends).

I have a dear friend who has been both a friend and colleague for going on 22 years now. When I was compiling data to apply for LTD and SSDI, I asked this friend to write a letter for me, describing, in her words, what the differences were that she observed in my "normal daily activities" since the onset of the Secondary Progressive stage of my Multiple Sclerosis. (Disabilitykey note: This process is covered in detail in the Disabilitykey Workbook, found at the website.)

This is a copy of the letter my friend wrote for me (genericized so that if you want to use it as an example for a friend of yours to do for you, you can use it).

Social Security Administration (OR, LONG TERM DISABILITY COMPANY)Re: YOUR NAME

To Whom It May Concern:
A long-time friend of mine, YOUR NAME, has asked me to write a letter to your office on how I've seen YOUR DISEASE impact her life activities.
To begin with, our families have shared a close relationship for more than 17 years. We have frequently socialized and vacationed together, worked together professionally and shared many holidays. YOUR NAME and I have become even closer since we both went through a divorce almost 8 years ago.
When YOUR NAME asked me to write this letter she requested I provide you with some facts on my observations on how MS has had an impact on her life over the past 17 years. As I look back at the years a number of examples come to mind. As part of my letter I included a few examples:
· During the early years of our friendship we frequently enjoyed camping together as families. The vacations were active adventures that always included daily hikes. YOUR NAME was always an active participant on these outings and we found ourselves continually busy from sunup to sundown. Unfortunately as the children grew up YOUR NAME's health began to limit her participation in our outings. She would begin to hike shorter distances and then return to camp and sometimes would stay behind all together. These changes appeared to be gradual until eventually we noticed that her balance was impacting her ability to participate safely, so she would wait in camp for our return.
· For the past 10 years I have watched her struggle with her personal balance and standing stability. At first I would watch, as she would tightly grasp handrails to safely descend stairs. Over the past 5 years she has required the use of walking supports and frequently requires the assistance of another to safely use stairs.
· For the past 8 years I have watched a steady decline in her abilities to walk even short distances without becoming fatigued, overheated and exhausted. Our shopping trips to the mall are an activity of the past. Even visiting one store is an activity that must be planned and requires a nap or period of rest before she embarks on even the simplest trip.
· About two and a half years ago, I discussed with YOUR NAME the need to live in a home with wheelchair access. Two years ago she purchased her current single level home in YOUR CITY. Moving was an exhaustive process for her and required the support of many friends to get her packed and settled. It has become apparent since her move that she was fortunate to relocate when she did, as we have seen over the past 2 years an accelerated deterioration in her overall health.
· As a close friend there are times we have tried to see the humor of her disease. One consequence of the progression of her DISEASE is that she is always hot and overheated. There is many a time I transport her by car in mild weather and we are driving with the air conditioner on. As the driver I’m wearing a sweater and freezing and she is sitting next to me fanning her face and complaining about the heat.
· I would describe YOUR NAME’s career of one that required long hours, high pressure and the ability to respond to an employment crisis at any hour of the day. Over the past 10 years I have watched as she has rapidly deteriorated from 70-hour weeks to no longer being able to work.
I remember about 4 years ago when she took a vacation that required her to fly. She missed a connecting flight because they were unable to find a wheelchair. This experience made her realize that vacationing – or long-distance travel of any kind – was now a thing of the past.
Weekends are primarily a time of rest for her, but each Sunday I pick her up for church. After services I drop her back home for a much-needed nap as the outings exhaust her. There are many more examples of how I have seen YOUR NAME’s health deteriorate over the 17 years I have known her. It is safe to say that the progression of YOUR DISEASE has dramatically increased in the last 7 years to the point she spends most of her days at home.
Should you have any additional questions or wish to contact me directly, you may reach me during business hours at XXX-999-9999.


Jane M. Smith
1234 SW Main Street
Anytown XX 12345

My friend knows me very well. It really helps to see yourself through the eyes of someone else. Also, putting what they see down on paper to help you, helps your friends better understand what you are going through (there's something about seeing something in black and white, on paper, that makes it more "real").

She has been like a steady rock, helping me regain my ability to "live well", by knowing, admitting to, and using my strengths to overcome my impairments. Let me give you a few specific examples.

1) My friend and I used to love going shopping. Whether it was to a mall or to some antique stores, or to an Ocean City's tourist stores, we used to shop for HOURS. I cannot do these activities any more. I use forearm crutches to walk at all. I get very hot doing any form of exercise. I get claustrophobic in a store, if I am standing with other people.

So, I have some options. I can pout, cry, feel sorry for myself, deny myself the pleasure of outings with friends, and become a hermit! OR, I can figure out how to do some of the same activities, in a different fashion! First of all, what did I like about shopping? Well, I liked the people, the goods, and the outing with friends. So, how could I recapture what I liked, within the scope of my ABILITIES; NOT GIVE UP because of my DISABILITIES!

Again, my friend was the solution. For a few times, we would go to the mall, and I would just sit and "people watch". But the walking from the car to a place to sit and back again literally wore me out for the rest of the day.

See, my friend knows how stubborn I am. So, one day at the mall, she decided to go to the customer counter and ask if they had wheelchairs for loan. They did, and, with me in a wheelchair, and my friend pushing, we were back to our old times of hours of shoppine! You should have seen our "train": I was pushing a cart while in the wheelchair; my friend pushing me. We were fine going in a straight line, just had problems around corners. The moral of this story is that, by focusing on what my abilities were, instead of my disabilities, I recovered my ability to live well, and enjoy outings!

2) Loosing my ability to drive was probably the biggest challenge for me to face! As you have probably figured out, I am a VERY independent person! I was a Type A personality - probably A+! You can't realize just how much you rely on your ability to be mobile - to get to the grocery store, the bank, the library, the doctor - at YOUR CONVENIENCE rather than having to rely on someone else - until you loose that ability!

Well, my friend, again, realized that I still needed outings from the mother-in-law appartment that I have in my son's home. While the living arrangement really allowed me to focus on my abilities, my friend realized that it could become too "complacent", and that for me to really Live Well, I needed OUTINGS!!

So, she arranged for me to spend a few days with her at her home. There, we could eat out or in - whatever we wanted; we could watch "chick flicks" (my friend, who knows me well, always keeps plenty of kleenex on hand, as she knows that I cry at commercials!); we can get up in the morning and read the paper together over coffee and tea. AND, in the afternoon, we can go shopping, or anywhere else where we can use a wheelchair!

These are but a few examples of how you can achieve a wonderful Quality of Live; you can live well and have outings. You just need to figure out what you like to do; what your abilities are; and figure out how to do it!

Questions and comments, and ideas are always welcomed! Let's hear about your stories of Living Well.

Disability: Decreasing "moving stressers" from a Chronic Illness Self-Manager.

I'm not sure about you, but I HATE to move! You just get your space set up the way you want it, and BANG, you need to pack up your personal stuff and get ready to move; then you have to unpack it all over again!

AND, for those of us who are disabled, the stress of moving can really take a toll on us. As I currently am facing such an event, I thought I'd share with y'all what bugs me, and, as a Chronic Illness Self-Manager, what I am doing to get over what bugs me, and get with the moving!

  1. Fatigue, as I have previously mentioned, is a HUGE factor that adversely impacts most of us. I am taking great strides to ensure that I get as much rest as I need; and, not just at night, but also in short naps during the day.
  2. Being Realistic about what I can and can't do. This is probably the hardest hurdle for me to overcome. Throughout my life - both personal and professional - I have just hated it whenever anyone said "I can't do it!" - usually said in a whiny voice. In my way of thinking, anyone could do anything they set their mind to doing; right? Isn't that what we were taught? And, in most cases, this is an accurate statement. BUT, when you are a Chronic Illness Self-Manager, being realistic about what you can and can't do is a critical coping skill.

For example: I cannot stand for over 2 or 3 minutes at a time. So, I'll need some help getting stuff down from high up, and then I can pack sitting down. I've already figured this out, as I have a stool in my bathroom (given to me by a great friend who knows me, and knows my need to accommodate ways to get things done).

Another example: my cognative skills are much less than they used to be. Now, some of you who have read my blogs may question this, but you haven't seen all of the writing notes, jottings, first, second, and third drafts of all documents used to create the final product. So, unlike the "multi-tasker" that I used to be, who could keep 10 balls in the air at any one time and not drop one, and who could keep all the list of things to do in my head, I now write things down in LISTS. And, do you know just how much I hate this? I NEVER thought that I would stoop low enough to keep lists! Only nerds kept lists, not me. Well, yes me, if I want to get things done! And, I do one or two items from my list each day. Yes, it takes me longer to get things packed than 2 or 3 moves ago, but even the turtle finishes the race. Just remember to take it slow, and pace yourself.

Another example: I have, with the aid of my daughter-in-law, GREATLY sownsized all of my stuff! I've had to rethink about my definition of "sufficiency" (in all things except for books/reading, jewelry, and writing in this blog, of course!). Clothes, nick-nacks, things, papers (yes, I got rid of the dozens of boxes of papers that I had been lugging around that contained work documents going back at least into the mid 1970's!!!) So, I have less to pack this time.

3) Friends are a great help! Do not be shy about asking for help from friends and family. And, when they do help, remember to use music, laughter, and fun to liven things up a bit! Food also works wonders.

4) Doing something special for you each day. Figure out what you REALLY like, and reward yourself with your special treat each day, after your moving activities. For me, 30 minutes of playing with my graddaughter is a real treat! So is taking a shower and letting the water cascade down.

Bottomline, the key in being a Chronic Illness Self-Manager is to be aware - always - about what hwlps and hinders your "symptom impairment of your normal daily activities". If you know your triggers, you can plan on avoiding, mittigating, or overcoming them.

If you have any additional suggestions, I'd love to have you share them. They just might help us all.

I'll be sure to let y'all know just how successful I was in managing my physicality during this upcoming move! I'll be sure to relate what went right, and what I could have done better.