ELLIE'S BLOG on Living Well with MS

A few weeks ago I was doing so well. I was making all these plans and then "bam" down again- plans cancelled. But after my monthly sol-u-med this month I was back up making plans again.

What a crazy life! No wonder people look at me perplexed sometimes. I can be dragging myself around too tired to think then suddenly I'm better. I'm not a person you make plans with easily.

Today I celebrate my 75th Birthday. And the idea that I have been here for 3/4 of a century just blows my mind. Also the fact that for more than half of this time I have been living with MS, a disease that afflicts my CNS.

Yet,especially at the beginning of the disease I had not always felt ill. There's no doubt there is an importance difference  between an illness and a disease. Organs have diseases, people have illnesses.  Physicians diagnose disease, patient's suffer illnesses.

Illness is the way a disease complicates the life of the person who has it. Its seriousness depends upon the impairments it causes and how long it lasts.  MS is a chronic disease and it can over time also become a chronic illness that can really complicate your life.

Somewhere along the time line of living with MS most people have that gut wrenching moment that this is chronic and there is no cure in sight. I can remember when fatigue and walking any short distance was becoming a real problem. I felt scared and bewildered. "How could this could be happening to me? "

I had a least a week when I couldn't stop crying and asking why,why me? Since then I have found out that most of us who are successfully living with MS have usually had that moment. The moment when the intellectual awareness that MS is a chronic disease becomes a gut realization that it's not going to go away and you know you have to learn to live with it.

This is when we stop waiting for the cure and reorganize our lives to live within new parameters to manage our illness due to our disease of MS. This is not a negative time.This is a time when we retake charge of our life.

Indeed this is when I started to learn how to live on the MS See-Saw.  I found that to handle fatigue I had to handle my time well and organization was key. I promised myself that I would no longer waste time and energy looking for things or starting too many projects at once. And if I took up some new activity that would take time I had to give up something already on my docket. Everything had to have its time and place .

As problems with cognitive processing (mostly memory retrieval)annoyed me to no end I started using lists and other aids and I am still continuing to find ways to help myself with that. 

I also decided that I was no longer going to be the person who told my neurologist "I would never ever need to use a wheelchair" when he recommended I use one for longer distances. Indeed over the years I have welcomed the decrease fatigue and bodily discomfort with the use of the appropriate assistive device when I needed it cane,walker,wheelchair etc.

And along my timeline I adapted my environment with ramps,wider doors,shower seats etc.as I needed them. And doing so became natural and appropriate.

I also began to truly appreciate the value of rest.  The afternoon nap, resting before events, and planning ahead for a large event absolutely had to include rest before and after.

Lastly but importantly I have found pacing myself with the activities I do throughout the day has enabled me to live a much fuller life.

This doesn't mean that I haven't "fallen off the wagon" so to speak as I'm only human.  But it really hasn't worked to push myself or deny reality so I always come back home to respecting my limitations.

One other factor that's been very helpful in my managing the MS See-Saw and live well has been the advance of science.  The value of the knowledge gained about MS through research and the advent of pharmaceuticals to help us manage our illness better cannot be understated. It seems that it all started with the development of the first interferon drug  Betaseron  to reduce the severity and the amount of MS relapse's and hopefully disability.

I used Betaseron and it was helpful for years then as it became less effective I was switched to Rebif and had a pronounced turn for the better.  I also have had other drugs that have been helpful. For fatigue Provigil, for pain Pamelor then I was switched to Cymbalta which was even more helpful.

Right now my monthly infusions of sol-u-med are also helping.  And I'm looking forward to being able to use Ampra to help with my walking.  But even if it's embarrassing I can't forget my bladder. With the use of Oxybuytnin I don't have to worry about wetting my pants and intermittent catheterization has saved me from repeated bladder infections.

As I now enter the last ¼ of my century I feel very positive.  There is no doubt that knowing that the research in MS is continuing and that new medications are on the horizon is encouraging.  And If getting better is not in the cards for me I do hope and pray that I keep most of what I have now physically and mentally.

I think what's most important remains a loving, supportive family and friends who understand and are willing to pitch in and help when you need it. And of course have things you have yet to do, places you have yet to visit, folks you have yet to meet, books I've yet to read etc..

My message for those younger people starting to live with MS and those who feel like your now on the MS See-Saw remember you still can have a good life. It may not be what you thought it would be but you can make it a good life. A life well worth living maybe for a whole century.

                            Live your life well         ellie

Last week my two wonderful sons put up  a ramp off of the bridge going over our back yard which runs from our house to the deck.  This ramp allows me to go down to our garden to where my raised salad bed is.

  So on days when climbing down           those  steps to the garden and standing and walking is not that good                                                       I will always be able to pick my own greens from my raised salad bed.

  It's easy for me to go up and down the ramp with my wheelchair or my new walker.  If my walking is gone after I've been out front or I'm not good I can go back up the ramp by sitting on my walker and  push myself up backwards very easily.

In every way this new walker was a wise choice. The larger wheels make it easier for me to go over grass, gravel or bumpy dirt.  This walker also has a basket with space to carry my gardening equipment.  And of course I also can more easily check my plants like my Climbing Fairy Rose Bush and other plants on that side of the garden.

In addition it allows me easy access to the side of our house to check on the plants there too.Then I go around to the front where I garden also. As I have also  put in a lot of time and thought there too. So it's important for me to check that out just like I do in back.

And Rejoice and welcome each plant that reappears or newly appears. Or like the tulips opening up! Have a wonderful Spring

ellie

My son's will be putting together a slide show on how they made the ramp. So be sure to check back if your thinking of putting up a ramp, They put mine up in 2 days!        ellie

Last Tuesday I was down at my Neurologist's office having my monthly IV Sol-u-med treatment.  There were four other patients there also. We were all of a similar age and had had MS for years. We had adjusted to our losing function by adapting to continue to have a good life.

I was feeling good coming out of my last relapse and a bit chatty. The room has low light a very easygoing nurse and comfortable chairs which produces a restful environment.  We started talking about things that were of mutual interest and found that the ways we have been accommodating multiple sclerosis in our lives was quite similar.

For example: we started talking about how much we like using the computer. And we found that we were all dependent to quite a degree on the information given to us by our children and grandchildren. Then laughing we shared that they all were giving us too much information too fast!  They didn't do it on purpose. Their brain's just worked faster than ours now did.

We also were finding similar ways to compensate for this too. We unanimously agreed that having them write it down so that we could do it at our own speed was the best.  And it was a unanimous very strong no- no to giving us two or three Windows Shortcuts at the same time.  One at a time is our speed.

Then we moved on to talk about gardening which was a love of us all.  I had just recently received three Rose Plants from the Antique Rose Emporium in Texas.  I shared how I want to use them as a bower over part of my bridge that goes across my yard to get from my house to the deck.  One of the group there had a husband who loved planting roses so we shared information on roses.  And when we talked about our vegetable gardens I had to share my raised salad bed too. One person was going to try the upside down tomato plants as her dog was into everything. As we all had dogs at some point,we understood.

And of course the conversation came around to the heat problem. In the summer for all of us it was early to bed and Early to rise so that we could get out before it got hot. When we went out we all brought our cell phone's with us so if we stayed out too long and couldn't move we could call to get help back into the shade.

I've been thinking about this conversation throughout the past week. I've been trying to figure out why it seemed to be so satisfying and meaningful to me.

Could it be that over the years we had had to face and learn to live with most of the same problems with MS. And over these years we had all learned to adjust to our losing function by adapting to continue to have a good life. None of us were giving up on finding ways to continue in some fashion doing things that we love to do. I think it was because of this there was a real emotional connection of similar problems we faced . 

For example most times when I mention heat being a major problem limiting how much I can do outside in the summer to non-MS people I feel a sense of disconnect. There's no gut emotional connection that you feel they understand. But this is what I was getting with the other women from our talk .

But then when someone talks to me about their divorce or the loss of a spouse or child I can't that say I have a gut emotional understanding of their situation either.

You can understand other people's issues on a much deeper level if you have had a similar experience. You can try even if you haven't had the experience but it will not be a gut emotional connection with that person.  I'm sure that this is the reason why support groups are so popular.

I know of people whose only friends are those in their support group.  I haven't done much with support groups and when I tried it didn't meet my needs.  However this casual conversation with like people was very important to me.

It was also a reminder to me not to expect the impossible from people who haven't walked in my shoes.   ellie

Last Sunday morning I woke up and staggered to the bathroom and went past the clothes all laid out on the dining room table. I thought oh boy where am I going this morning?  Oh yes I remembered Church.  It was late but I grabbed a cup of coffee and tried to wake up and  clear the fog.  But it did not work.  So I crawled back into bed.

Later that day I felt better so I decided to get up and try to finish what I wanted to finish in January as this was the 31st.  I needed to put up the Christmas pictures on face book.  These were something I really wanted to share.

So I opened up my picture file and face book.  Needless to say my foggy brain wasn't very cooperative. It seemed to me that they had changed how you put pictures up!  So after some frustrating attempts I called on my younger son who helped me a bit through my problem with my neural fibers in my brain in slow mode.

And we did put up a couple of pictures with proper identification of them. I also wanted  identification of everyone in the picture of my niece Gale's Christmas Family Dinner.  But when I looked at the picture it seemed to me it had shrunk and was so blurry that to identify people was out of the question.  And to be honest at that point I was so tired I could hardly remember my own name. So when my son said," Let me finish this up for you mom and you can add to it tomorrow or the next day". I gratefully took him up on the offer,

I swear everybody is getting faster and smarter and I'm getting slower and slower and dumber and dumber! At least that is how I felt then. So as that was my big event of the day I crashed early and had a long sleep.

The next morning when I woke up and walked to the kitchen to get my cup of coffee-- 10 steps was it.  So I sat on the seat of my walker and pushed myself backwards to my wheelchair. Then I went into the kitchen and  poured my coffee. Well this feels like relapse I thought and too tired to get angry or finish my coffee I crawled back into bed. 

The next day when I got up I wasn't better- now I was angry!  A week ago I was using my cane for short distances. I had started back walking outside with my wheeled walker. I was able to go 2/3 of the way around my short block. Inside the house I was mostly walking with no assist with a few wall touches here and there unless I needed to carry things that were heavy or awkward.  And I wasn't as tired !!!

I was making plans to go to the theatre, movies, out to dinner.  We were also discussing that we might do a coffee hour at church. Damn! Damn! Damn!

It just doesn't seem fair. It seems I spend more time in a relapse than I do in remission!  Of course I did have a lousy cold when I was in my remission which might have triggered the relapse. However, I didn't make myself get a cold.

I thought when I made my box for the Haiti Relief  I was going to have a problem finding reasons to put money in  that related to my being upset about MS .  Not so, that  box is starting to fill up real fast with IOUs.

Oh I know, I'm 74 and I should be mature as I know this is what happens with MS.  But you know my age and the fact that this has happened many many many times  doesn't make it any easier. Disappointment is disappointment. And yes I always get better, that knowledge helps, but it still takes too damn long to get better.

But then I look at the Haiti box I made and sighing I think putting things into perspective I'm still dam lucky. I'll get better! I have a great family. I can rest when it's is needed, I have the right equipment, good medicine,and good doctors.

I'm not saying all this is OK it's not!! But it is what it is. And it could be so much worse as it would be if I was in Haiti or I was a person who didn't have a good support system, good healthcare, or a nice home to be crashing in.

When I wake up tomorrow morning I'm going to spend  time looking at the shelf near the bottom of my bed.  Then start my day meditating on that prayer which my son made, framed and gave to me. Then I'll go online and find the relief agency list that helps the disabled in Haiti and send some money.

Grant me the Serenity to accept what cannot be changed

The Courage to change what can be changed

And the Wisdom to know the difference

                                               Be well, ellie

I've been thinking a lot about balance lately. Probably because I feel that I'm fighting hard to stay in balance.  When we think of multiple sclerosis and balance safe mobility is what comes to mind.  But the balance I'm talking about is more than just safety in mobility, although that is critically important.

I have found over the years that to successfully cope with the ups and downs and more downs of Multiple Sclerosis having control of balance in all spheres of your life is critical. Control of your mobility, energy, emotions, and being able to do the activities that you want to do make such a difference in your life.

And the latter is what I want to talk about here. With loss of mobility and decreased energy (and that insidious MS fatigue) you lose time to do all you want to do. You find that how you spend your time, what you read, go to see,things you do is so dependant on MS.  When I was young and raising a family and working, gradually I was able to do less and less of what I wanted. My time was eaten up by my family and my work. Before I retired fully at 61 I had no energy left to do much of anything else even when working part time.

When I first retired I suddenly had all that missing time. I found myself reading books that I had to wanted to for years. And to take up activities and hobbies I had given up that I had no time for like gardening.  I also took up learning how to use the computer.I've gradually been writing my family history which I share online. This family history was very helpful when we lost both a younger sister and an older brother within a year.  We share photographs, old family stories and memories. I also use the computer to make my own cards so their more personal.And of course there is e-mail.

These activities are ones I am able to pick up and do when I'm good (in a remission and my energy is up)and when my energy lags the project will still be there to pick up again.  

But the one area I found that wasn't as easy was going back out and being part of a group again or picking up with old friends.  As MS is inconsistent from day to day or hour to hour making plans was and still is difficult .  I was also losing mobility. In 15 years I went from using a cane to a walker to a manual wheelchair then an electric wheelchair.

A former patient of mine who had Multiple sclerosis called me when she heard that I too had multiple sclerosis and asked if she could be my friend.  In our conversation she mentioned that I should not to be surprised if I lost friends. She was right.When you can't plan, are in and out of the social scene and so tired so much of the time it becomes a problem.

Late last winter I changed doctors and meds. Then in the spring I went into a marvelous remission. I was able to go back to using a cane or walker for short distances.  I also had much less fatigue.  This new me decided to use my increased energy to do more with people like visiting my family, trying to renew old friendships and to meet new people.  I never understood the Barbara Streisand song " People who need people are the luckiest people in the world".  Being more isolated and away from people due to MS I now understand.

So when I went into a relapse again in the end of September I fought it. I tried to keep doing things the same as when I was in that wonderful spring-summer remission. Of course I couldn't and I just made myself more tired, achy and miserable. I was walking or wheeling around the house saying I'm just so tired ..I'm so tired. Then I began to think to myself just saying it had to make me more tired! 

Recognizing that a change of attitude was needed I decided to take up meditation again. And while meditating I remembered the Buddhist philosophy of unhappiness. They state that many times we cause our own unhappiness when we cling to what had been  making us happy and can no longer be.

Admitting to myself that yes I was in a relapse ( and the thought that maybe I would never get back to where I was in the summer is what was really bumming me out).  But as I meditated the reality that even though I was in a relapse I was still better than I had been for years. I certainly had survived being much worse. I knew I could use what I have learned during those years when I was not as good.. 

This realization really helped me. I felt I could work on  starting to get back into balance again. And without the baggage of fear of what might be, I knew things would be much easier.

So when I felt that fatigue coming I stopped what I was doing and rested. I didn't wait until I was collapsing. I found that just as little as 15 to 30 minutes could help.  Then I could get up and do some more things.  To be honest I'm not doing as much as I'd like. I'm trying to prioritize what's really important to me and what I can let slip. But the one very big plus is I'm not walking around in a state of exhaustion ready to snap at people all day!  I'm enjoying more what I'm able to do.

A perfect example of how well this can work and help                               you to do what is really  important to you was when I went to church this past Sunday.  We go to an Episcopal church with a sung- Eucharist service.  We stand and  kneel and sit and stand and kneel and sit again and again.  We sing hymns and response's as well as praying  and listening. It's a beautiful service in a beautiful church with wonderful people but it's a physical event for me.  This spring and summer I was able to stand and sing out those lovely hymns I love as well as  participating more fully in the rest of the service.  But the last few times I went I tried to do this which I couldn't. And because I wouldn't admit to myself that I was becoming totally exhausted by trying I missed a part of the service which was important to me. That was "fellowship" going to coffee afterwards and talking to other members of congregation

So last Sunday I listened to my body and when the fatigue started I stopped and sat till it passed.  I still participated in the church service I just didn't do as much standing and sitting, kneeling  etcetera. And I made it over to coffee to chat and reconnect with people.  And then when I came home I took a nap.

We're having my nephew his wife and their two children over for Thanksgiving.  I'm putting this whole rest properly and prioritize routine in place.  If something doesn't get done it doesn't become an epic event. What matters is that I'm rested and there is food on the table(thanks to my son's) and we have a happy day with family and were all rested.

I hope all of you will do the same thing knowing your priorities and what's most important to you and then follow through. Have a wonderful Thanksgiving with your family and friends.

Stay well rested!!    Ellie