" People are always blaming their circumstances for what they are. I don't believe in circumstances.The people who get on in this world are the people who get up and look for the circumstances they want and if they can't find them, make them."
George Bernard Shaw
Balance has always been a problem in my life. Based mostly by having multiple sclerosis in the relapsing-remitting form for years before I had a definite diagnosis. In those early years I was afraid something might be wrong and sometimes I had doctors tell what I wanted to hear "that nothing was seriously wrong".
When I was finally diagnosed the neurologist was amazed that I was able to adapt and just ignore my symptoms for so long . But when the diagnosis was finally made it made sense to me and it was a relief. Remembering those times with the feverless flu's dragging myself around clumsily and becoming so incompetent. I also was constantly beating myself up for being so lazy. Then I would become myself again full of energy taking on too much feeling I'd just been lazy, unorganized and undisciplined. And I would vow that I'd never let that happen again.
So I looked for sources of inspiration to solve this problem of mine. I read many books searching for counsel. There is one great book that I still have on my book shelves that I kept returning to.
The book is "Balance" by Joel and Michelle Levy.
Why Balance? For a chronic problem of ups and downs I felt the need to center myself. And for many decades after my diagnosis I still have felt the need to go back and re-center myself. Why the continuing need to re-center? It's because the fundamental nature of my body with MS means relapses and remissions and over time a gradual steady loss of functional ability. And change requires adapting to my new body limits.
Some of these changes were positive when advances in MS care came into my life. When the drugs like Betaseron for MS first came on the market there was increased hope for a better life. And when I started taking it I did have shorter relapses. But fatigue continued so I was put on Provigel to help. And it did help some of the fatigue. But after many years on Betaseron it became much less effective and I started spending much more time in a wheelchair.
I changed my Neurologist and he changed me to Rebif (a Beta 1A ) and soon added monthly low dose Methelpredizone IV. The improvement was amazing. !! This caused a great change in my life.
In fact this was the best 3 years I had had for a long time!! I started my garden and other projects and I went out more. I went back to my walker, cane or crutch. My wheelchair was for long walking excursions only. But gradually after a few years it became less effective and a decision was made as I was also a Type 2 diabetic (methlpredisone can increase blood sugar levels) and I wasn't getting the amount of response from it that warranted risking any increase in my blood sugar levels. This had a very negative effect on my function. My walking etc. decreased dramatically.
But around this time the drug Ampyra (a potassium channel blocker) which increases walking ability by allowing the electric current to flow better over damaged myelin sheaths covering the nerves was put on the market. I was put on this drug and my walking ability increased again . It was not the same as when I was on methlprednisone however I was able to walk a longer distance with it then without it.. This is a very meaningful event for a person with MS who has a much lower functional level.
My son's had over the years made many adaptations to our home to allow me to be as safely independent as possible. So when I was in a bad time I could still do some things I wanted.
They widened the doorways to allow me to push my wheelchair thru easily, moved my bedroom downstairs and added a downstairs fuller bath with a hand held shower,seat and safety bars. And of course ramps to go outside and raised beds to garden in. I also had purchased an electric wheel chair to be independent when I was out and about or when my walking ability was down.
Right now I am only on two MS drugs, Ampyra and Rebif (Provigil is no longer covered by my insurance and it's too expensive). My walking and functional level is down but it's been consistent, which makes it manageable.
I know how far I can usually walk and can manage my energy level quite a bit by resting ahead of events and by taking naps. This gave me confidence to plan ahead to do things I wanted to do.
In September I took a week trip with my husband to visit my sister and her family in Virginia. A few weeks later I had a nice visit with my niece and her newborn son. Then in the beginning of October a couple we had been friends with for years came for a wonderful visit.
I was becoming so social! I was able to go out to two charity events and felt secure on my managing this MS fatigue etc. I made plans to have my nephew and niece come to visit for a day. Oh I was feeling so in control !!
Then I collapsed. My Fall annual relapse did come after all. And per usual as I start to get better it's 2 steps back one step forward. I'm tired of these relapses.
I'm starting to wish I had straight secondary progressive with no relapses because I don't end up ahead anyway when I remit. I have no control over that just as I have no control on how well I remyelinate (heal) after an attack. But I do have control on how I handle all this!
This is why at this time re-centering is needed and why I have re-opened my book on balance. Going thru it and following their advice and thinking has always helped me thru bad change. As my journey thru life aging beyond my current 78 with MS continues I want to be in control. I want any changes that I need to be based on my priorities of what's important to me !
Below is a link to a very good artivle on understanding MS.
America's children are returning to school this month. Unfortunately with the recent shootings in our schools security concerns have escalated . There is increased anxiety among our children returning to school this year. And also among their parents who are sending their kids to our local schools.
There has always been anxiety for some children returning to school before the shocking recent events. After all they are going to a new grade, a different class, meeting new teachers and new children in their class. Parents also have some anxiety about how well their children will fit into the new classroom and what will the new teacher be like etc..
The anxiety level of children with disabilities can be up even higher because they know they're not like everyone else. When your young and insecure in new situations, being with people like oneself is easier. Actually I have to say that I don't think it's that much different with older people. I think it's part of our makeup to be more comfortable with people that are like ourselves. And people can feel threatened and ill at ease at first with people who are different.
I think part of the problem is because they don't know enough about the new and different people. They don't know what to say, or how to react to people who are different from those they know. Unfortunately without guidance they may react by ignoring them or bullying them and even physically hurting them.
If bullies come together, they can reinforce their behavior and harden it into a pattern in their life. With reinforcement and a lack of other viewpoints, bullying may become second nature to them into adulthood in the office or home not just the classroom or schoolyard. With the right situation and attitude, this can develop into violence, or a hate crime.
But what about the children that are being bullied. What happens to them over their lifetime. And we're talking about children with disabilities in this blog but I want to be clear that I know it's not only children with disabilities who are bullied. Many children that are very bright, poor or very shy and sensitive can also be targets for bullying or shunning as well. Any difference can draw bullying.
But 80% of children who have disabilities are bullied. And since 1975 after the Disabilities Education Act (IDEA) youth ages 3-21 with disabilities (5.3 million) were required to be provided a free and appropriate public school education. By 2009, 95% of 6 to 21 year old students with disabilities were in regular schools, 3% were in separate schools, 1% in private schools by parents and 1% in a separate residential facility. Of those in regular schools approximately 72 % spent a substantial amount of time in regular classrooms.
Children with Developmental Delay, Autism, Hearing or Vision impairments , Speech or language disorders, orthopedic, neurological, intellectual , emotional or other health impairments are all in our public schools. These children or young adults are there to learn the academic subjects but they also will learn their worth in our society. Socialization occurs in this setting which can effect a child's self esteem as much as success in the subject matter.
Children that are disabled are just more fragile because they have more to overcome. But all children who are bullied in school in the early grades especially are affected detrimentally in their academics and the development of social awareness, maturity and feelings of competence. They have to learn over time when to put up that tough skin to protect themselves from bullies. In fact there are organizations and clinics to help these children outside of the school environment. That some make up for it very well is encouraging. Self esteem is critical to learning and success in life.
It is critical that children and young adults with disabilities have a quality education geared toward their strengths and accommodating their weak areas. Children become adults with disabilities and want and need to go out into the world, support themselves and have as full a life as possible.
Unfortunately they have a much higher rate of unemployment. As of July 2013 the unemployment rate is 14.7% v.7.4 for the non-disabled. And even more significant 8 out of 10 Americans with disabilities are out of the workforce. And shockingly hundreds of thousands of people with disabilities earn much less than the minimum wage in segregated work.
What we are talking about is equal rights for the disabled. Over many decades the disabled have been targeted both for assistive help and for discrimination. But mostly for discrimination and at times elimination. See the Disability Timeline: http://isc.temple.edu/neighbor/ds/disabilityrightstimeline.htm
Today we have built up a body of laws to positively give equal rights to the disabled in our country . Yet attitudes of some people have not caught up with what's right, just and humane, to say nothing of legal. The bullying of students in school has become so serious a threat to these students being able to have an equal right to an education that the The United States Dept. of Education has sent a letter to all schools. In the letter is an overview of the school's responsibility under the Individuals with Disabilities Education Act (IDEA) in regards to the bullying of a disabled student. See copy here:
But parents are equality important to protect against unfair bullying of anyone. It's repulsive to me to pick on a person who thru no fault of their own is different. What kind of a society are we? Kindness, empathy, learning about people who are different. To me this is what we should strive to be. Not mean spirited,cruel and closed off to new ways of looking at the world around us.
As parents send their children off to school it's a perfect time to discuss this bullying issue . This is an important time emphasize what you know is the right behavior to your children. My parents did with me and I did with my children. How about you? This can make a difference to a lot of children.
"Whether small or large.
moments of grace
shape who we are."
EEEK WHAT A BUMMER!!!!!!
Living here in upstate N.Y. has always been manageable for me. As I love to be outdoors and garden (see my previous many blogs on the subject) having a nervous system that's already slow due to MS get hit with heat I have had to adapt. And adapt I have.
I use ice packs under my hat, around my neck chest and wrists as needed. Then there are fan's, sprays, cool drinks and just plain hose on myself. I also have two major shady retreats; the front porch and the deck out back under the canopy. At one time we had shade from our neighbors old majestic pine trees. But alas they cut down all the lower branches so we substituted with the canopy. It's not as effective but it works. Then equally important would be more of the little shady rest spots thru our property that I garden in that I used to have. We usually have 10 -13 90 deg. days during the summer but not lasting more than a day or 2 at a time. Not this year we just are coming off a 6 day heat wave of 90 ++ temps. With horrendous humidity in the 70.s. And we went from a dry spring to monsoon like summer rains which kept the humidity up. It's the humidity that's the killer with the heat. No wonder more people die in a heat wave than a hurricane, tornado or earthquake. And the people around me are feeling maybe a bit like I am normally as the heat slows down their neuron conductivity a bit! I even had a person relate to me this feeling with empathy? I thought maybe it would bring a new realization of what it's like to be SLOW ME. Walking so slow..thinking so slow..doing everything so slow..what a drag !!
Well the heat wave has passed and the torrential rains too! Life is much better for me. I'm not getting stuck to the ground when I'm out, can walk further, think better and not exhausted even when I'm in air-conditioning. And the people around me are back to normal! I hope their experience will show new empathy .
As I who was once so zippy just keep getting slower and slower but I can relate to how I once felt when people tell me of their hiking,biking tennis events. How nice it would be if the remembrance of that itty bity slow down they had brought a realization and understanding of how I must feel. And that they realize I want to do so much but it requires more time, rest periods, and sometimes a little help. And sometimes a big help and then sometimes no can do..sorry!!!
I must sound like I'm just griping up a storm. But I know I'm not alone in feeling this way. I read other blogs of people with MS and as I also was a physical therapist I heard this from my MS patients as well as those with other disabilities. A common problem was that that people didn't understand they were doing the best that they could. When people with friends or relatives with MS feel slowed down from the heat it's a perfect opportunity take a leap into their friends life. And then recognize that it's their nervous system being slowed they can get a glimpse of what is normal everyday for someone with MS. And then in heat and humidity how they must really can lose function!!
In fact back in the 1800's a dunk in a hot tub was a way of determining if the patient had MS as it brought up the symptoms which was at that time a confirmation of MS. Well, the humidity and heat are back. The heat not so bad but it's the humidity that's got me from walking to a few limps only and brain dead today! I can manage the heat much better than the humidity.
Back in my home with air conditioning. Thank God for Air-conditioning!! And knowing that Fall is on the way!!
"If you work with your hands,
you're a laborer.
If you work with your hands
and your mind,
you're a craftsman.
If you work with your hands
and your mind and your heart,
you're an artist."
-Saint Francis of Assisi
If I take this quote from Saint Francis of Assisi and compare it to how I feel about my gardening I am not just a laborer or craftsman I am an artist. Because I truly love to garden and my heart is full because of it. Now there are times I do feel like it's labor and use knowledge and tools to be skilled in what I do like a craft person would. But the love I have of it must make me an artiste of gardening.
At one time when I was younger before Multiple Sclerosis started affecting my physical body and cognition etc. I suppose I could consider that I was an artiste of running, jogging and then walking because I loved to do these activities and felt so wonderful when I did them. I also could also say I probably was an artiste in my swimming . As a past instructor I knew my strokes but the movement of my body thru the water was what I loved whether it was in the ocean, lake or a pool. Again I can say It was the same for for hiking, biking and playing tennis as they all gave me such pleasure and everything just felt right.
But then all these physical activities became nothing more than labor. Even though I tried to use my knowledge of the sports and as a physical therapist of the body to try to compensate for what I did it eventually became joyless labor. So over the years I was forced to give up running then jogging then walking any distance. Also hiking, biking and finally swimming as one lap in a pool didn't cut it with me. I also had earlier given up tennis which I loved too. But then there was gardening.
When I was busy working and with the other things in my life gardening had taken a back seat. Because heat limits my ability to move etc. gardening after work was not a possibility. And to garden before I went to work would limit what I could do at work due to fatigue. So my husband filled part of my void and I enjoyed what he did and my own limited work on weekends.
But after I retired and MS relapses slowed down a bit and I became more comfortable with my limitations I was quite ready to really adapt and try to push the boundaries of what I could do. Also the fact that my son's were around and able to put in ramps,raised beds and were there when I need that strong body made it possible.
I get up each morning in the spring and summer and look out the back door and front door to see my gardens which I love. In the spring when my bulbs are starting to come up requires an assessment daily as well as mulching and weeding. Then the 2 apple trees bloom and the Japanese maple comes to life. Then it's lilacs, peonies and roses that are filling my gardens out back as well as the blooms in my home. And quietly out front and down the sides Hostas, Coral bells and all my bushes and ground covers are start to push through the soil and bud and bloom, thriving and making my world better. My son's vegetable garden is now thriving as well as my raised salad bed.
And yet there is so much more to come!! Hydrangeas and Day lilies will meet with the Irises,and Corn flowers Gaillardias and Hollyhocks. Oh and so so much more! Oh yes there's the birds that come to the birdbath under the Japanese Maple tree and then the butterflies arrive en masse when the butterfly bush blooms.
And to make it all work in the morning before it gets too hot between my tending my garden I have a nice shady area with a chaise to take a break and watch, meditate and read and cool down. There are other areas with shade and a chair throughout my garden's too. And our wraparound porch with window boxes filled with flowers and hanging plants caps it all off at the end of the day.!!
I get my Vitamin D, good wt. bearing aerobic exercise and flexibility and balance exercises. And definitely a little muscle strengthening too. And I'm learning all new information about plants and gardening. Actually getting better computer skills as I keep charts and I've gone back to photography too. How could I not take pictures of my garden flowers. And thanks to my son's fresh vegetables in my diet.
What more could I ask for ?
Today May 29, 2013 is the day we remember the over Two Million people around the world that are living with Multiple Sclerosis. And "living with" is an important description.
MS starts in the young adult (usually diagnosed in the 30's) and lasts their lifetime. Some people are lucky and they have a milder form and can remain relatively active longer. Others are not so lucky and severe disability comes much too soon. And no one now knows who will end up with what form.
However, all those of us with MS have our lives changed forever. Having lived with MS for decades this I know. They will have to learn to be strong, flexible and be able to rise above the effects of it on a daily basis. When you consider that when you wake up you don't know how you will feel and what you'll be able to do each day. Can you go out to lunch? If your still working what adjustments do you need to make? Is it a cane or wheelchair day. Can you last the full day? How can you hide that fuzzy brain due to cognitive involvement and not appear inept? And how can you let people know it's not them it's because your just so tired and it's going to get worse if you can't shut down and rest that crazy Brain!
But when you have a support system around you it makes such a difference. I think the pictures taken at our local MS Walk here in Saratoga Springs NY show the feeling I mean.
WERE GONNA LOVE YOU THRU IT!!
What more can I say except to go to : http://www.msif.org/about-us/advocating-and-awareness-raising/world-ms-day/world-ms-day-2013.aspx
for more wonderful stories, mottos and information on World MS Day.
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