ELLIE'S BLOG on Living Well with MS

1936 future Olympian                                                                                                                                                                                  But who am I really ?  Am I the same person born in 1935 on Father's Day in the middle of the depression?  How much has my life experiences due to Multiple Sclerosis changed me?  These are some of the questions I ask myself.  In a month I will be 78.  Did I think this is how I would be looking back at my life at the age of 78?

No not all.  My image of myself in my retirement years when I was in my twenties before MS was a factor in my life was that I would still be quite active. I would be like an older woman I admired. I would still be riding my bicycle to pick up a few groceries like a favorite bottle of wine, gourmet  cheese and wonderful loaf of bread. Then I would stop at a favorite place of mine "Yaddo" for sitting and reading my favorite book of poetry. I would also belong to a very interesting book club with fascinating and a diverse group of people. I would have a season's ticket to the opera, ballet, the symphony, and various theater groups. And I would be involved in my community as well as working as a Physical Therapist.

Of course I would look back on my wonderful trips including hiking and biking trips and playing tennis. And most important of all I would still be doing them! I would also be sharing a lot of these with my wonderful husband and my 2 sons and maybe grandchildren. And now that I have been retired for years I would  have  the most gorgeous garden. I would put flowers in every room for all the guests I would  still  have.  Having dinner parties, women friends in for tea and still having the energy to do so much I wanted to do.

Oh MY how the reality of my life experience has changed thanks to MS. Now it is not that I haven't done some of those things I mentioned above. Or that I haven't been married to a wonderful husband and have two wonderful sons.  But the truth of the matter is when I think of MS and how it has changed my life all I can really think of is that it has been decades of fighting fatigue and loss of function.

And except for the wonderful times when I was in a remission I have been losing the battle and have been having a continual loss of function in all spheres. I sometimes feel that my life has been spent trying to accept the losses and to find ways to replace my lost abilities by using assistive devices , mobility aids and giving activities up or finding less demanding activities .

Then there has always the question of what will MS do to me in the future?  I and others with this disease have to deal with the reality that eventually we will be losing even more function due to MS.  We hope that it's slow but it makes what we can do today more precious!  Even if like me we willingly  exhaust ourselves at times because we fear that in a few years maybe we won't be able to do something we love. We have to adapt and our family has to adapt too!

I shared on World MS Day website that my motto was the Serenity Prayer.  This is a prayer that I have used for years. In fact many years ago my son put it on a poster in a frame which I have placed in the book case across from the bottom of my bed.

 

This crazy disease effects our life in so many ways. So if you meet me and I look like I must be crazy exhausting myself gardening or some other activity  there's a deep seated reason for it. I want to do what I can while I can and my goal is a lovely perennial garden by age 80. I wouldn't be me without a goal.

Or if you see me rested  and I'm really looking good and acting real social ..That's because this is a special time for me. I miss being out around people so when I'm up to it it's a precious time. But, I'm sometimes I'm afraid I'm like a person who has been inside too much and and may act inappropriate.

But this is who I am ...same person under different circumstances. And I still want to do all I can as long as I can.

Vase with flowers from my garden

ellie

What would I like people to be aware of in MS Awareness Week?

I want more than an abstract understanding. I would like to give people a picture of what the disease is and what it's like to have MS.

1.MS is a disease of the Central Nervous System (the brain and spinal cord) where the immune system goes awry and attacks the insulation (myelin sheath) of the electrical conductors (the nerves) that transmit the electrical energy though out our body that allows us to function.

2. MS can thus affect our physical movement, cognition,vision,sensations,speech,swallowing,bladder and bowel.

3. It is the top disablers of young people as it begins in the 20-40 years range. Remember this is just as these young adults are starting out in life. It affects women at a 2 to 1 ration with men.

4.There is no cure and many time it can take years for a proper diagnosis. It is a progressive disease that is different in each person with MS. However there is help with very expensive drugs to slow aspects of it down.

5. It is different in every person with MS. And that is because of the location of the damage to the nerve from the attack can be anywhere in the CNS affecting a different part of the body.

6.It is also different in intensity. Some people may have a mild form others a more aggressive form. It usually starts out with an initial attack (many times visual) then there can be a full or partial recovery. However after time it returns and attacks the same area and adds another.(This is referred to as the Relapsing- Remitting Phase)

7. After a time most people will not have any or only mild relapses. But they will  continue to progressively get worse(secondary progressive) .There are a small percentage of people with MS who start out only in a progressive phase (primary progressive).

8. There is one common factor in almost all people who have MS and that is fatigue. It is not a normal fatigue but one that is unique to MS.It is a terribly uncomfortable fatigue. It's almost painful. It can come on slowly or hit like lighting. There's medicine that has a very limited benefit for some people. Otherwise resting and time out for a time helps it to pass.

Reading this some of you may know not know of anyone who has MS or you know of  someone who does but not much about what going on with them. There are so many different conditions today we can't be knowledgeable about them all.  Yet the chance of knowing someone with MS  should be greater because they are young adults who age with progressive losses.

The estimate of people having MS World Wide is 2.5 million and here in the United States it is approximately 400,000 people.

And to make it more personal to me there  are more than 12,800 people out of 6,000,000 people living with MS in upstate NY where I live. And in my county Saratoga, 457 people out of 220,882 people have Multiple Sclerosis  So even here you can live your life not knowing anyone with multiple sclerosis.

Now after this little synopsis of what happens how does it affect you. If you have MS I hope it can be helpful in explaining it to others. 

If you don't have MS but you know someone has MS I hope it will be helpful in understanding what they are living with. 

When I was working as a Physical Therapist I treated so many different people with MS. And they all were affected differently. It continued to amaze me and challenge me. I was told once by someone who had two friends with MS. One had cognitive problems and the other  friend had more than motor problems. Her biggest frustration with maintaining their friendships was the Fatigue and Relapse problem. With each of them she felt she was at times dealing with two different people.They would plan to do something then they were down again. 

I remember people who didn't know I had MS used to say I was like a Jekyll and Hyde. One time I would be ready to tackle the world and another suddenly just dragging myself around.

So I'm trying to emphasize you really have to have understand a bit if you want to maintain friendships with someone who has MS.  And people who have MS have to be open minded even if they're frustrated. We must remember that if people don't understand realize they don't walk in our shoes.

As I writing with an MS fatigue -Relapse time this week I'm ending this now.

I know I'll get better with time and hoping for a good spring.

ellie

From an Old Soviet Christmas Card Collection

I hope everyone had a very Happy Hanukkah, Merry Christmas, Happy New Year and all other joyous celebrations during this past holiday season.

New Year seems to be the time we set ourselves up for the eventual failure of those New Year's Resolutions.  Making resolutions with each New Year is very appropriate as we can all do better.We  can try to lose weight, read more books, study harder, make more money, stop smoking, be kinder to our spouses, children, dogs, parents etc..

I hadn't made any specific resolution until a few day's ago. I was sitting in my recliner reading a book on my kindle. As I paused before starting the next chapter I became increasingly aware and then grateful of how good I felt. None of that damned MS Fatigue hanging around me! It was such a wonderful moment..mentally sharp and not tired. Such a feeling of well being that I didn't want to move I just wanted to wrap my body and emotions in it and treasure that feeling.

And this is when I decided that my New Years Resolution would be to spend my days with less fatigue!

Because when I'm not fatigued everything in my life is better. I'm a nicer person and I like myself better. I'm more fun to be around, more friendly, laugh freely, mentally sharper, move better and have an upbeat positive attitude about life. This is when I finally make those phone calls to old friends and family and make all kind of (tentative plans). I have to be careful though because I usually overdo and really crash. And unfortunately I have found that lately recovering from this overdoing is taking a longer and longer time.

Remembering this at this time gives me more impetus to resolve to try to do better with this fatigue problem. I think conquering or managing the fatigue from MS is now everything to me.

I can use assistive devices, make accommodations and adaptive changes in my home but..if I'm still stuck with fatigue life is a bummer. When I'm in a fatigued time I can get totally overwhelmed so easily. And at times I even feel like I'm going to fall apart. Which is scary to me as I am a bit of a self control freak. But at times lately just simple things seem to trigger that reaction.

So I'm throwing out the window all the other things I should resolve to do and focus on managing my fatigue better. I know that  if I am not so fatigued and leave more time for fun and laughter I'll be able to manage this life of mine much better.

Then I can slowly add more of those things I should do and want to do. Like get my blood sugar under better control as I am also a Diabetic and keep urinary tract infections away as they add to my fatigue.  And then I can start adding the obligations I feel toward my family and keep up contact with old friends and new friends. Then maybe I can slowly add all the other things I want to do..Whoa!! I will then be right back with heavy fatigue again...

Periodically over many many years I have had to decide to scale back my desires to what I could reasonably handle.This is so hard for me to do. When I'm too tired to want to do things it's easier . But when I start to have more energy and less fatigue I have to admit I always either overdoing  or I am miserable that I'm not doing more.

Years ago a neurologist that I was seeing was in a hospital and it was a distant walk up to his office.  One day I arrived with my cane obviously exhausted and he said to me."You should not be walking up here take a wheel chair." My response to him was "I'm not taking a wheelchair I will never need to take the wheelchair or use  a wheelchair."   (Remember I'm a physical therapist) And then he said to me "when you decide that you need a wheelchair and start to use one for longer distances or if your tired you'll find your life will be 100% easier."  Well I didn't get a wheelchair right away. I did get a wheeled walker with a seat which was great . After a year I got a manual wheelchair then three of four years after that I got myself an electric wheelchair. So I wasn't exactly the quickest person to admit I needed assistive devices. But I'm so glad I was able to change as they have made my life much fuller.!!

I also have been told that I am too much of  Type A  personality and it would  be easier if I was more of a Type B. I know what they mean but it's hard to change your whole basic personality. But I have been learning to accommodate my personality to change.

But it was the readings of a Buddhist Monk that helped me to make changes. He stated that unhappiness is caused by people hanging on to what is no longer appropriate for them. And they do this because they don't want to give up what was right for them at an earlier time. But when you do stop pushing away change and accept and welcome the new you are open to find new ways and new things that can give you pleasure and satisfaction too!

So no more doing things till I drop (which I've called pacing myself).

I'm going to take a short nap as I need it before real fatigue sets in.

And if it's all day fatigue just rest and stop fighting it.

I used to meditate more often I'm going to reschedule it in my day.

10 minutes of dancing in the morning  [where I have close walls to reach for] to my favorite tunes as well as my other exercises. This will give more pleasure therefore a better way to start my day.

Take time every day to reorganize things and throw away what I am not going to be using or need.  That includes eliminating emails.

Restart making entries into a book I have of Gratitude for things that happen day by day.

Take time to enjoy my indoor plants and bulbs I've planted and put my feet up and read more good books.The hell with the dust.

I feel these decisions above should give me a start on deciding what's most important to me and what I should spend my time on and  eliminate things that are not.

At 77 going on 78 I do feel increased urgency that by my eighties I probably won't be able to do as much and I have to do it now. But what's the point if all it does is make me tired all the time. So by doing the above I really think I will be able to help identify what is really the most important things that I must spend my time on and just chuck everything else!

              "It is not

                   the mountain

                   we conquer,

                   but ourselves."

                 Sir Edmund Hillary

The first person to  reach the peak of  Mt. Everest in 1953

Be Well,

ellie

There have been a lot of very useful and informative articles in the Journal's for Multiple Sclerosis on aging well with MS.  I immediately gravitate to read these articles as I want as much information as I can on aging. However I'm not 50 or 60  which a lot of these articles are referring to I'm 77.  I'd have to say I guess I've been aging pretty well with multiple sclerosis for quite a few years now. But I've reached a point where other medical problems are becoming important too. And my MS is considered an underlying condition.  Luckily nothing too serious just Type 2 Diabetes, Cararacts, Macular Degeneration and Cervical Spondylitis and Stenosis have joined in with MS to challenge me.

Am I aging or am I also just getting older or old.  Now if you consider feeling old is just a stage of the mind than on some days I'm very young . Yet on other days I don't feel so young.  Like recently following two UTI's in succession and now in a relapse I have really been tired and looking old.  But I'm coming out of it and starting to look young again. So I thought I would put my thoughts on this down in my blog

I feel that Living Well just like Coping Well covers such a big range of ways to handle something.  And as MS is very individual and unique to each of us we have to develop our own way of handling aging as we have done all along with just MS.

I've been thinking about my future and how I want to handle aging with MS and other conditions that can come along. And this is why my headline is Growing Old Gracefully with Multiple Sclerosis. You see for me to do this gracefully is a challenge! Yet I have found that taking each day gracefully really works for me. Oh I have my moments I blow up and would like to blow a few things up too. I also can feel down and want not to even get up out of bed.

But years ago I promised  myself that I will control my emotions and use assistive devices and adapt my environment to compensate for my physical losses due to MS. Because as a PT I know  my physical adaptations will help me to use my body and my mind as efficiently as my body has been designed to do.To move and think gracefully is what our body was built to do.

What do I mean by this ? Well let's go to the dictionary's definition of gracefully.

 There are 3 parts to most dictionaries definition of the word graceful

1, A graceful shape or object is attractive

2. graceful movement is smooth and beautiful

3.Showing good manners and respect for other people.

I like this three part definition of gracefully because it encompasses what I wish to try to achieve. I know I will feel and will live better if I do this.

The first part : A graceful shape or object is attractive.This may sound unimportant when you feel your body and world may be falling apart. But it makes the other two easier to attain. When you look in the mirror and you look nice the world seems easier. People react to you differently too.I reflect back on the patients I treated in home care. Those that let themselves go never did as well. I especially remember a woman in her 80's. I was treating her to increase her range of motion in her shoulder after she had had a mastectomy. The first day I arrived she was all dressed in a suit with earrings and pearls around her neck. I had her take off her jacket and blouse to do the evaluation and start the range of motion exercises. When I was scheduling the next appointment she asked me not to make it so early because it took her time to get dressed.  I said you don't have to get dressed for this you know you could get dressed after I leave. No No she said you don't understand I have always gotten fully dressed every single day of my life. And it saved me when my husband was dying of cancer because every day I knew I had to get up and put on a loving supportive face . So each day when dressed I would look in the mirror and I felt I can handle anything and I feel the same way now.  So I said OK and  she did handle things well. I have always remembered her and think it is best to look attractive to be on top of things when something bad is happening to you.

The next one on the list is Graceful Movements are smooth and beautiful.  I do not move very smooth and beautifully most of the time anymore.  And this is where proper use of assistive devices to help yourself is so important and they work.  I'll never be a gorgeous beautifully moving lady but when my walking is gimpy the use of a cane or a Lofstrand crutch does wonders. If it is not too bad the walls or furniture works fine. But if I need more assist there's my wheeled walker and my electric wheelchair. I try to stand tall to move like there is music playing when walking and when I'm sitting to sit up straight tuck in my tummy and look like a queen. Doing so will put less stress on my joints, ligaments and muscles. In many ways it's prevention of orthopedic conditions as well as psychological depression.It reminds me of when I was young  I kept growing taller and I ended up at 5'11. Everyone kept warning me not to stoop. My mother had me walk and sit down and get up with a book on my head.

The third part is: Being Graceful is Having Good Manners and Respecting Other People. And this is as equally important as the other two parts . From a purely selfish perspective being nice to other people and having good manners will make you a person that other people want to be around. And if you are feeling down, depressed or tired it will make you be less tired and less depressed when you have been nice to somebody. In fact I have found when things are going really bad and the best way to feel better is to take a project where I do something to help somebody else.I felt I needed Poetry to finish my thoughts on this subject.The selection below seemed to do it.

I CAN STILL MATTER

Submitted by: Tkrause

Author: Tom Krause

I CAN STILL MATTER
As time passes on
I turn the next page
to discover a new me
while I continue to age.
I may no longer be
who I was long ago
but I still can matter -
that much I know.
With a new set of tools
I have gathered from time -
I keep looking forward
to more mountains to climb.
My best is not over
as the skeptics might say -
I just learn how to conquer
In a much wiser way.
So don't sell me short -
I am not nearly done.
I CAN STILL MATTER -
I've only just begun.
Tom Krause - Copyright 2012
www.coachkrause.com

ellie

In my last blog I talked about not letting disappointments or people's insensitivity deter you from moving ahead. And most of all not becoming afraid to challenge others and life itself for what you want.

I used a Poem on Roses and it's thorns as a metaphor. And then gave examples on how important Good Samaritans are in my life.

Living with MS is challenging and at times not only difficult but depressing. There are days when everything is great which are extra special. But then there are those days when it seems like there is a problem around every corner. Fatigue, pain, summer heat preventing desired activity or winter storm keeping you inside. And then the outside environment not adapted for the disabled.

So to prevent the loss of some semblance of "a life" you adapt and do what you can. You give up old loves like biking, hiking, tennis, walking a distance or just walking !And of course going out to places because it's a "bad" day.

But you search and develop new loves you can still do with modifications and adaptations. For me one of those new loves was a former love I had given up. I found my love for gardening again.

However, in order to do this successfully adaptations in my environment were essential. My prior blogs talk about how over the past years I with the help of my family have been able successfully to do this.See my 7/25/2009 blog with my practical advice and philosophy on this:Flexible Adaptable Successful Gardening 

There is a ramp to the back deck from the back of the house. There is now another ramp from the end of that ramp down to one side of the garden where my raised lettuce bed was built. Now I also have  strawberries and roses and other flowers there. From there I can also go to the front of the house. I go down the side of the house where there are other bushes etc. as well as on the side of the apt. house we own next door. And in the front of both buildings more bushes and perennial flowers as well as on the other sides of both buildings.

Meanwhile back to the major garden in the back. Most of it is taken up with my son's vegetables. But along the sides are my perennials as well as in front of the deck more perennials. And also one of my birthday presents a Japanese Maple tree.

On the deck there are raised planters with annuals and my inside plants.On the other side of the deck there are raised beds and tall pots with perennials as well as a large raised old bath tub on a bricked in area.

For years I have had a spot on the right side of the deck under the shade of my neighbors old,very tall  7 Norway spruces. Here I could retreat to my chaise to rest cool down and enjoy my outdoors. My Shady Nook!

Over the past years major shade changes have occurred in my yard. It started with our having to take down our old butternut tree due to it's failing. At the same time our neighbor was taking down a tree on her side and convinced my sons to take down  2 of our trees on our side. Our yards became much sunnier which pleased my son's and my neighbor. The  garden's got bigger. And I was able to grow more myself. And I still had my special Shady Nook.

Then my neighbor on the other side and my son's took down trees and bushes between our houses. And more gardening began. The deck and the bricked area also had more sun. And the large back maple provided great shade for my potting area still. And most importantly I still had my Shady Nook until mid afternoon.

My son's put up a rose arbor at the end of the ramp near the deck. And I planted 2 climbing roses as well as another climbing rose plant to go up the base of an old apple tree. We trimmed the apple tree to give them more sun. But they area under the roses was also a shady spot. And I still had my Shady Nook to go to .

A few years previous to this for a mothers day gift my son's put in a lovely waterfall and small pond. The birds would come to the birdbaths we had in the shady area "My Special Nook" and with all my cooling aids life was good. I could retreat there after working in the garden to rest and cool down. Or on a bad day just to rest but be outside.

Then this past week my neighbor had a tree remover start the process of taking those trees down. And with it went my shade. My special cool area. My Shady Nook for the birdbath and my spot to watch the butterflies and birds and be quiet and alone when I needed it. The area is now in full sun all day.

I can't begin to explain what I have lost and the emotions I feel about it. I don't have that big a life and this was so special to me.

My neighbor had talked about taking the 2 trees nearest to her garden down and they were going to trim the branches of the others. I knew I would lose some shade and was prepared for that with regret. But it's their trees! And they have  never given us difficulty before. 

But now it's 3 trees. And not a trim to the others but a buzz cut!

This is a big deep thorn...but life goes on !

We'll figure out some ways to get some shade for me for the rest of this summer. I'm being promised a solution by my son's for next year! Unfortunately they are in the midst of finishing painting our Victorians this summer. Our house as well as our apt. house. I will report on our temporary solution as well as plans for next year in another blog.

Meanwhile I'm in mourning.

ellie