Sunday, 28 October 2012

Things you lose

No doubt about the fact that chronic disease takes a toll on the plans that we have for the future.

How much does that matter?  If you don't have concrete plans for your life your immediate goals are not thwarted, however most of us have kids, grandkids and relatives to deal with. RA can change all of your social relationships.  It is a large price you pay when you are not even able to pick up your children or grandchildren.  I think that is the most poignant problem.

This is me with long hair.  With RA it was just too much work, so even though it survived baby sneezes full of pablum and many sticky fingers it had to go.  Actually I think I still have it in a drawer somewhere.  Lost...

There is no easy answer for this.  RA is the "gift" that keeps on taking, so you have to go through the whole loss  and grief cycle over and over.  

We need to find coping resources that help us to make sense of events and to manage them.  These resources can be anything that works for you.  Most commonly social support and the strength you have within are the most help.

It is good to switch your focus to factors that promote your health and well being.  I have read so many blogs recently where people are doing just that. 

Like Arthritis Ashley collecting information and links to share with everyone and Tanya Martin working hard to get more people involved and with advocating to make things better.  

Also on a really big scale RA Warrior.  I bet that when Kelly started on her path she never dreamed that her blog would resonate with so many people.  

Don't discount the benefits of educating yourself so that you can understand what is going on in your life and try to manage some parts of it. 

This learning skeleton is by Aaron Kuehn in case learning anatomy is on your To Do list

This is a huge topic and there will be more to come.

Sunday, 21 October 2012

Exercises for when you can't exercise

Sunny Day

I have two ideas for easy exercise.  One is the book that I talk about below.  The other is an exercise I got from a physio that changed my life for the better.  Yes, it changed in a small way but if you take enough small positive steps you end up in a better place.

Here's the book:

20 years ago I saw a book called The Arthritis Exercise Book by Semyon Krewer. He is a nuclear physicist who developed severe RA before the treatments were as effective as they are now. 

When he wrote the book people were often confined to bed if their RA was bad.  Thank goodness that seldom applies to people now. He outlines a lot of exercises that take very small effort but  make your muscles stronger.  He used them to keep some muscle tone so that when he improved enough to get out of bed he would be able to move around better.  You can do many of them lying in bed, as he did.

He outlines the exercises in a very methodical way and over the course of a week covers almost every muscle.  In collaboration with his physiotherapist it's a combination of stretching, repetition and isometric strategies.  He's quite charmingly chatty and doing his routines helped me when I was at my worst

And here's the one exercise:

Oh no! Is that a dagger that I see before me?

Yes it is and for this exercise you imagine that the dagger is pointed at your bellybutton and is endangering the wholeness of your naval.  You can be lying in bed for this.  With the threat to your middle you pull the muscles in your abdomen in to get away from the dagger and hold for 10 to 30 seconds when first starting.  Do 5 to 10 repetitions twice a day. If you get really strong hold it for up to a minute.

As a further enhancement, pull the muscles in and then try  to move them up towards your head

It's hard to believe this does anything but I have a story.  After 22 years of RA with almost no exercise at all I started to do this.  After a few months I happened to see a different rheumatologist when I went for a check up.  She felt in my abdominal area, as usual and she actually said that I had good muscle tone in my abs!

I was shocked and very pleased.  It seemed like a miracle that I got results so fast from doing so little. With that impetus I started to try harder with other easy exercises.  I won't say I am in good shape but at least it's a lot better.

Wednesday, 10 October 2012

Coping Strategy With Surprising Results

I mentioned in the last post that I had found a coping mechanism that suited me very well and helped me to regain my optimism.  Entering contests provided intermittent gratification which is the most compelling type there is.  It's the same impulse that makes you check your email every five minutes to see if something new has arrived. 

It helps to find something that gives you a feeling of accomplishment when you have to change your life plans.

So I actually stumbled upon a method that gave me some distraction from the fatigue and tedium of RA.  This is the story of one of our most memorable early experiences with the hobby the first summer after diagnosis. It proved to be life changing.

                                                Many types of pastimes can work

At my urging my son entered a newspaper contest to win tickets to attend the Shrine Circus.  There were some additional prizes of bikes and a trip to be awarded at the show.  At this time in our life my husband was totally engrossed in writing his first computer program as a self employed person and was so totally absorbed that he was almost living on another planet from the rest of us.

My son won one of the 25 family tickets to the Big Show.

On the day of the circus we arrived a little late and rushed to our seats in the bleachers.  We sat down and before we knew it the ringmaster announced a winner of a bicycle.  My husband clapped and cheered - he did not know there was a draw at all but he likes to be encouraging.  When the next bike was awarded he kept on clapping.  Then we got to the trip draw.  The ringmaster said "And now we draw for the winner of the grand prize - a trip to Disney World.  And the winner is older son said his brother's name - and the ringmaster said the same name immediately after.

They called my son down to the circus ring and he disappeared.  Next thing we knew he came out riding on the lead elephant in the opening parade.  My husband was flabbergasted.  He had no idea what was going on - in moments like that it is hard to make out the words of an announcer.


When my son finally rejoined us he had another unexpected development. He was wearing shorts and had developed big red welts on the inside of his legs.  It turns out that he is allergic to elephants, not just horses and cats. Still it took a long time before he stopped grinning with delight.  

Luckily the rash cleared up before we went to Disney World.

Tuesday, 2 October 2012

Happiness in the Real World

Chronic health problems have a major impact on your life.  One part of the answer to doing well lies in the way that you deal with stress. How you cope with stress can be beneficial or can worsen your problems.

The logical next question is how do people do to deal with stress in a beneficial way?  I suggest you look at the resources you have available to you and make an inventory if you are a list maker.  Some resources may be social support, your personal sense of your own worth, money, health literacy, skills that you have.  Any additional suggestions are welcome.

My neighbour's allium

It's easy to see how money helps.  You can obtain labor saving devices, pay people to help with some tasks, upgrade your diet.  Anything to reduce stress is a plus.

Your social support is one of the most crucial. Not every part of your life contains supportive people.  The workplace can be a way to affirm your value and receive comfort or it can be a place of dread where your so-called friends and long term work mates are trying to trip you up or push you down.  For many the church and their faith is a wonderful source of help.  In the family area chronic illness can break up a realtionship.  I have heard of a lot of family rifts that come from relatives not believing that you have real issues.  The pain that is caused by this is hard to deal with, especially considering that you are ACTUALLY sick and your life has already become a balancing act.

Don't underestimate the value of your health literacy.  Many studies have shown that it is the most important factor in predicting health results.

So if you are not coping well what do you do to improve your ability to be resiliant and bounce back to at least a shadow of your former self?  How do you cope with pain, medications, numerous doctor appointments, and the feelings of guilt that you have for "letting people down" because you can no longer fill all of the roles that you could before?

One place that you can find suppport is by talking to people who have similar problems to yours and these  days it is very easy to find them online, especially if you have a rare or less common disease.  I have been a member of a traditional online group for 14 years now and I get a lot of support and encouragement from the other members.

Lately I have been enjoying Twitter.  Depending on who you follow and interact with and how much you participate it is easy to find like minded and supportive people.

I suggest trying to balance positive and negative thoughts and this is a good post from Auntie Stress with the good cheer pointers.  It is worth repeating.

You can make your own social community online and it can help counteract the negative voices.  And don't forget the healing powers of pets!

My camera case. Even an artist's rendition of a pet can cheer you.

Practicing anything can improve results, even your optimism.

Here is an odd coping mechanism which just goes to show that anything can be effective.  It depends on the person.  When I was diagnosed I was very fatigued and had little energy.  Going out in the sun was not advised. So I started entering the contests I found at grocery stores and on products.  Luckily for me in a few weeks I got a letter saying I had won "something".  That was so encouraging that I kept on entering until I found out (It was a pair of skates).  By that time I was getting more good letters.  That was the hobby that saw me through some sad times.  I was always optimistic waiting for the mail and phone calls.

My next post will be a contest story featuring a large animal (and no it will not be Snowball, the life size plush polar bear that my mother in law loved).  It was a bright spot in my early RA experience.