Chapter 17 - Being Well Physically

         

         

Being Well Physically

 

In many ways living with lymphedema is no different than simply living.  You want to be well and that includes exercise, but the lymphedema factor is present.  Again, I urge everyone to get their physiotherapists advice.  A healthy body needs regular exercise but as a lymphedema patient, it is important that common sense prevail.  The choices have to be considered. 

I have been given specific exercises to maintain a range of motion that I do faithfully.   If I miss more than one day, I feel the difference.  I do these stretches during my walks or as a separate task.

When I wanted to go back to my shooting sport of Cowboy Action I had to rely on common sense.  The professional knowledge base that applied to a right-handed lymphedema patient, post right breast surgery, with right arm pain and a potential underlying injury that wanted to go back to a shooting sport was limited if not non-existent. No one knew. 

Common sense told me that the impact of the shotgun on my right shoulder could be potentially damaging.  My own thoughts were that I should switch to left-handed shooting.  I started practicing, always assessing my arm’s health.  Shooting with my non-dominant side eventually became natural, but at the beginning I went step by step very thoughtfully. 

My next concern, to participate in this sport, was about stamina.  Again common sense told me that if I was unharmed by a practice session of a certain length, then I could compete, because competition comes with periods of rest.  I assessed this and so did my physiotherapist.  It was a proud day when I returned to competing.   

I was always ready to sit things out, especially when my arm was sore.  But I would compete and I would be fine.  In fact, my arm usually felt better after the competition.   This fact took a while to register.  Then a friend gave me a news article about pain management around lymphedema that involved weight lifting.  Now I understood why my arm felt better after shooting.  It wasn’t long before I was lifting weights and that helped me turn the corner on pain management.      

I did other things to help myself physically.  I learned to do lymphatic self-massage (LSM) and that is now part of my daily routine.  It’s not difficult but it certainly pays to have a skilled teacher.   LSM has helped me manage my lymphedema. 

A quick tip that you might want to try is stretching the scar from your surgery.  I use the thumb and finger and firmly place them close together on the top of the scar, then separate my digits while maintaining downward pressure.  As I understand it, this action unclogs things at the site, although my version of what happens takes creative license.  

Another suggestion given to me by my physiotherapists was the use of Kinesio taping.  It emphasizes the skin’s movement and works the tissues underneath in a gentle and effective way which enhances the lymphatic fluid movement.  My first problem was finding a good source for this product.  My local drugstore only stocked a brand that was grossly inferior to my needs.  I was to apply the tape and leave it there for five days, taking two days off.  The drugstore product barely stuck for five minutes.  Obviously tapes are not created equal. 

Eventually I got tape that I loved.  However, I developed a skin irritation from the tape and I had to quit using the tape, because meticulous skin care is a # 1 priority.  Discuss taping with your physiotherapists to see if it will of benefit to you.  The beauty of taping is that it magnifies the benefits of everyday activities.  As you move the tape stimulates lymphatic fluid movement. 

 So there are a lot of physical choices for the lymphedema patient, but there are real concerns as well.  Common sense, and trust in your own intuition combined with advice from your physiotherapists can put you on the road to a good physical life. 

An example of intuitive sense lies in the story of the dragon boating.  The information about appropriate exercise for lymphedema patients, at the time, was conservative.  These guidelines were challenged by dragon boating.  Careful planning and constant assessment of the patient’s needs and abilities was a cornerstone to the dragon boat experiment and now the role of habitual exercise is better understood. 

While it still is wise to avoid strenuous activity in the early recovery time period following surgery and radiation therapy, strenuous, repetitive upper body exercise may not be the major lymphedema risk factor it was once thought to be.  Further research promises to guide the lymphedema patient and those at risk. 

 

“Common sense and personal assessment can help you to get active and to live healthy.”

Chapter 18 - Lymphedema in Public

 

Lymphedema in Public

 

The normal life that I wanted to return to after my cancer treatments was denied me with my lymphedema.  My new normal life took some adjustment.  Lymphedema came with a set of difficulties both physical and mental. To be compliant with compression garment wearing meant that I became visibly different. I lost a lot of social comfort because I was marked with something that many, many people do not understand. 

It never occurred to me that I wouldn’t wear my garments in the prescribed way.  I was going to manage my lymphedema to the best of my ability.  However, I can understand how a poor fit of garments would have made me think differently, and I really understand how the reactions of others can put patients off.

People are curious, sometimes in a kind way and sometimes out of ignorance.  Sometimes they want to know what I am dealing with because of a personal reason and they are seeking answers.  Sometimes they don’t understand that their questions make me feel like a circus sideshow. 

I can’t do much about the reactions of others but it is a challenge to cope with this.  People respond to me in strange ways but I know this is part of having lymphedema and wearing my compression garments.

There are considerations that I adhere to that make this social awkwardness worse.  I don’t shake hands in a normal right hand to right hand fashion because I won’t risk a hearty, firm handshake.  There is an interesting point when I grasp the top of someone’s hand with my left hand.  The other person can’t help but notice.  Some will look confused, others take it in stride.  Sometimes I give a word or gesture of explanation by lifting my gauntlet covered hand.  The ball is in their court- I’m not being rude, I’m looking after myself.  The very astute will extend their left hand and they get full marks for their manners. 

 

I’ve come to understand that when I am in public, that frequently someone will enquire about my garments.   Initially I thought I could let people know about lymphedema but that’s fraught with hazards.  Do I want to begin with a discussion of my cancer?  No.  Do I want to explain lymphedema?  I don’t have the time – look at how much I’ve covered within these pages.  Do I want to be rude and abrupt?  Sometimes, yes I do.  Sometimes I am angry that I’ve been reminded of lymphedema. 

My very worst incident occurred while I was having a great day with my girlfriends on a shopping trip.  A local yokel came waltzing across to joke me into telling him about my ‘injury’.  I get it.  There often is a humorous story involved, of the tripped or slipped nature.  He probably meant no harm.  The fact remains that he wasn’t put off by my first response.  He had to continue.  It put a pall over my day.  I was unprepared, but I certainly gave the situation a lot of thought and anger.  I couldn’t go back and tell him off, but I didn’t have to suffer this again. 

So, I’ve developed a script of sorts to respond to inquiries. A very common comment reflects that I look like I’ve been injured. 

‘This isn’t an injury, it’s a condition’.  I say and then I play it by ear after that.  I give brief answers, ‘I wear this to manage a condition I have.’  Or ‘I have a lymphatic issues.’ 

The knowledge that my public life will come with queries has caused me much emotional stress.  Isn’t it enough that I live my life well?  Do I have to work hard at all my lymphedema related tasks and difficulties AND to deal with other people’s ignorance as well?  Yes, I do. 

I’ve been hurt by the intrusion.  I have felt self-conscious.  I’ve bemoaned the frequency that this occurs.  I’ve been quiet.  I’ve overshared, I’ve struggled.  I’ve resented this aspect of lymphedema as much or more than any other.  It is so random and so out of my control. 

Recently I’ve discovered a couple of things about this emotional problem.  My imagination predicts that I will have an incident of this nature when I am stressed, so it’s a stress signal as much as anything.  This insight is useful and it let me understand something else.  I’ve handled this in the past, and if something should happen today, I’ll be okay.  I think I’ve turned the corner.

 

Wardrobe Issues

Basic tips surrounding clothing involve the avoiding of constrictions.  I need a proper fitting bra, with wide straps that don’t cut in.  My purse cannot be large and heavy because it is worn on the shoulder.  Again, nothing is as simple as it first appears. 

I used to sort by appeal, color and price.  Now I sort by the arm area of a garment. 

When I was bandaging, it was like wearing a cast.  I need a lot of room for that, and I only had a few items of clothes that were roomy enough.  Luckily I was not bandaging during winter, because I think I would have needed a cape like coat- provided the accommodation for the arm/wrist was large enough. 

Now my arm is encased by my compression garments. Any degree of tightness can lead to fluid blockage and complications.  Sometimes I buy in a size larger than I actually need to gain ease in the sleeve area for my affected arm.  Some fabrics will shed onto my garments, others will not slide over.  I have to consider how warm a garment is, because I already have one layer on my one arm.  Too warm is not only uncomfortable, the extra heat can aggravate my arm.

This is manageable.  I do have a decent wardrobe of ¾ length sleeves or sleeveless tops.  I have some workable sweater jackets that bridge the seasons. Buying clothes is another situation where I need to be aware and proactive. 

 

Doors

It’s a two handed world out there, even if there are some improvements made for handicap access.  Doors are not the only physical challenge. 

Our car, purchased two years prior to my lymphedema, has a standard transmission.  There is a slight benefit in gas consumption and this farmwife knew how to use one.  But with my hand in pain and the action of shifting requiring both strength and stamina, driving the car was difficult.  I did so reluctantly. 

That one accommodation for my lymphedema had huge impact on my lifestyle.  I didn’t recognize it initially but I stayed home more.  I was driven to places but I didn’t ask for a ride in the same way as I would have driven myself.   The ripples went outwards from this one change. 

Only a person who is dealing with their new chronic condition is truly aware of the impact.  Many times, during my first year with lymphedema I noticed changes in my life. 

As I review this first year with lymphedema I do want to assure you that many problems were resolved in time.  I did adjust.  I do find my hand or arm tires/aches/pains if the time of driving is long, or if I have to shift gears often.  I rest, I go forward, I monitor how significant the stress is and I treat myself with kindness.  Mine is not the life of total freedom; it’s a life of realistic moderation.  I have to be happy with that.  And I am.

 

 

 

 

 

Chapter 19 - Risk Assessment

 

Risk Assessment

 

The attitude that I had after my cancer treatments was straight forward.  I was done with that, now it was time to get back to normal.  I don’t think I was mistaken, mentally I was moving on. 

I did not give lymphedema risk reduction due thought and consideration. I sat through the seminar that fellow patients and I were given that told us exactly what we could do to lesson our risks of developing lymphedema.   I didn’t adopt the practices recommended.  Without giving it much thought I shook this information to the side.  Why worry about something that might not happen?  

Now I have read and filled out a lymphedema risk assessment tool.  It made me realize that I was at high risk to develop secondary arm lymphedema.  I wish I had known.  I wish I had listened. 

I read of a research study that followed a group of breast cancer patients from end of treatment to a date six-months later.  It showed only 50 percent appeared to be following the recommendations provided to them.  What made the difference?  Attitude.  Mine was poor. 

Women were more likely to follow the recommendations if they felt confident that they could physically follow the routines.  They also were more likely to be compliant if they believed their efforts would make a difference.  The final factor lay in the women’s stress coping ability. 

I believe that the risk assessment tool would have been the educational difference to me.  If you would like to see the assessment tool you can download a copy at www.canadalymph.ca.  I think I will include a copy in a care package for cancer patients that I know.    

I also believe that lymphedema happens.  The research might point to certain risk factors but in the end some people may simply be predisposed to a malfunctioning lymphatic system.  All the dos and don’ts in the lymphedema world are only suggestions. 

It serves me best to believe that developing lymphedema was not my fault.  What is important that I manage the chronic condition, starting early, and with the consideration it deserves.  That will give me the best chance of living a good life with lymphedema. 

Another tip sheet is at www.lymphnet.org/riskreduction.  These guidelines surround  having a healthy lifestyle but specific to lymphedema, including notes about skin care.  It reviews individual risks, being educated about infections and potential triggers for lymphedema.  These triggers include injury or trauma, limb constriction, extreme temperatures and prolonged inactivity.

A lymphedema patient needs to be aware of lymphedema risk reduction practices and I encourage you to gather knowledge and expertise in this area.    

Awareness of training standards with respect to therapists is one focus of the Canadian Lymphedema Framework.  Their guidelines are standards for complete decongestive therapy (CDT), also known as decongestive lymphatic therapy (DLT).  Their training standards are backed up by the National Lymphedema Network (NLN) and the Lymphology Association of Northern America (LANA).  A patient should ask about the care provider’s qualifications before receiving treatments or therapy.

Chapter 20 - The Weight of the Weight

 

The Weight of the Weight

 

“Body fat acts like a sandbag against the flow of lymphatic fluids.”    

As I began to understand lymphedema I was hit over the head with the need to lose weight.   Not again!  I was a lifetime dieter and had significant eating problems.  I was, by the charts, on the low end of obesity.  FYI that obese label means I was 40+ pounds heavier than normal by the charts – 39 pounds and I would have simply been overweight.  Isn’t that a hoot?

I couldn’t do much about other lymphedema factors.  I needed the surgery and I had radiation for the same reason – to fight the cancer.  But there were the blood pressure issues, and the extra weight.  I had some degree of control over those. 

My first avenue of research was about controlling my blood pressure.  Life wasn’t going to allow me this detour to wellness.  Blood pressure control, I soon discovered, would only be possible if I lost weight.  Damn and double damn. 

The weight had to go.  There was an immediacy involved in this fact as well.  Fluids that gather will also scar the area involved.  If I didn’t lose weight, the steady insidious damage would impact me the rest of my life.  I had to prevent further damage; I was already overburdened.  I couldn’t imagine how much guilt I would feel, if I didn’t act now. 

I reviewed by dieting history.  Those of us who have lost weight know all sorts of tricks that work but don’t work for long. 

A realistic review of my weight control efforts showed that I knew nothing.  However, I knew people who have never had a weight problem, nor will they.  They eat normally.  That’s what I wanted.  All I had to do was figure out what normal was, and aim for that.  So I interviewed a non-dieting, naturally slim aka ‘normal’ person and she gave me a key piece of advice. 

Start with the vegetables when planning a meal.  Good idea.  A meal with vegetable dishes would be lighter than one with meat/starch combos.  My vegetables were ‘boring’ so my vegetable adventures began there. I told myself that I needed a new hobby anyway, as I borrowed cookbooks and subscribed to healthy food and lifestyle magazines. 

I had a clear vision of what I wanted.  Anything with rich sauces, or drenched in cheese could be passed over because of the higher calorie inherent in those ingredients.  On the other hand, I would entertain flavors and lighter embellishments as worth it since the dish would then be satisfying.  That assessment felt balanced.  I didn’t know a single naturally slender person who actually counted calories.  They enjoyed their food.  I could too.  This was about vegetables after all. 

I began to find vegetable recipes of all sorts.  My next cull concerned the preparation.  I had to consider if my arm would be stressed.  I also stocked my kitchen with devices that I could use left handed. 

(I used to say that I couldn’t sweep the floor and chop vegetables on the same day as a way of explaining my limitations, when in fact many days, I couldn’t chop more than one vegetable per meal.)  

I had fun with the cookbooks and my vegetable adventure.  I found my flavorful vegetables eased my appetite for the extra large portions of meat that I was used to.  The other big menu change at the time was the inclusion of fruit as dessert.  I finally was living up to the food guides, and it made a big difference. 

But I wasn’t on the edge of obesity because of what was on my plate during meals.  I had disordered eating habits as well.  They were a different story, but I was encouraged by my success in making meals healthier.   

I congratulated myself on this, and took it as encouragement that other bad habits could topple and fall.  Self-praise for any movement at all towards a healthier lifestyle became one of my strongest tools. 

Chapter 21 - The Genesis of the Coach Approach

The Genesis of the Coach Approach

 

The one real positive change I could make to manage my lymphedema was to lose weight.  I wanted to do that but I didn’t want to diet.  I wanted to have a healthy relationship with food.  To do that, I discovered, I had to have a healthy mind.  I needed to examine the habits and thoughts I had developed.  It took time to get to the point I was at and it would take time to change.  I wasn’t going to do this alone; I was going to design a team to help.   

At this moment I wished for a personal coach.  What would that look like, what would a coach do?  A coach would seek answers.  They would bring that information to life by making goals that were understandable and achievable.  They would applaud my successes, they would challenge me to continue and above all else, they would be on my side.

Who could be my coach?  Who better than me?  If I found answers they would be mine.  I could be my best coach or at least the head of the coaching team.  That was the genesis of The Coach Approach.  As I thought about this, I saw a number of goals that I would pursue.   

I sensed my first step would be to gather information about the ways and situations when I overate.  I began my self-awareness goal by remembering the overeating that I have done.  When, where, what and if I could, points about why. 

I was almost overwhelmed by how much disordered eating was in my life.  I stepped back from it and tried to be positive.  Perhaps this abundance of information was a great place to start.  If someone else had come to me with this information, how would I coach them?

 

“The ability to come up with solutions is within each of us.” 

 

I knew perfectly well what I was doing and now that I decided to pay attention, I could see ways to change.  The process of discovery was exciting to me.  Also it was discouraging because knowing is not doing.  That was okay, I reassured myself.  What I am doing right now is getting ready to lose the weight, experimenting with ideas and ‘coaching’ myself. 

I gathered tips, but only those that seemed to speak to my situation.  I applied my own ideas.  I developed antennae for information or inspiration.  One attribute I needed was a commitment to change.  I wanted my thinking and my habits to be healthy.  I listed my objections as well, sensing that those would be part of the solution.  I find that once something is on paper, it can be read again.  I employed the action plan method. 

I knew I had to be accountable and aware and to eliminate denial about my own actions.  I hated this.  Even though the majority of my disordered eating is in the past, I won’t be sharing.  The problem was the problem, but just knowing the details gave me a place to start. 

Just a note – this step of defining the problem was very basic and would be repeated often.  The same repetition applied to searching for information. 

What are the subjects that an information search covered?  Any subject that might help me with my efforts.  I needed advice on food.  I needed new hobbies.  I needed stress management.  I needed to shift the direction of my thoughts.  I needed to act differently.  And yet, if I was going to change, I didn’t want it to be all about denial and restrictions. 

To put this in a positive form, I thought about what I wanted as my best life.  Not my fantasy life where I had no problems and unlimited money but something that could be real.  It was good to have a bit of fun about what I could do.  It was sobering to realize that many are more limited than I was.  As I completed this exercise I had information about my potential goals. 

I’ve said that the coach approach involves gathering information and coming up with ideas.  My warning is:

Don’t stop at the information gathering step.

Ideas and information can be wonderful but soon comes the time when a choice needs to be acted on.  I have been known to falter, assuming that the next piece of information will hold some magical motivational powers.  I like ideas and feel I have accomplished something by thinking.  False.

There is more to change than finding the insight, or reading the answer.  There is the doing part and to make changes I had to do something.  Implementing ideas is a skill of its own but like anything new there are little steps to make it happen.  Action plans were the key.

 

 

 

 

 

 

 

Chapter 22 - Strategies for Change

Strategies for Change

 

“There is no stronger prescription to changing your life, than changing your life. “

1.     Gather information.  Understand what disordered eating is and what normal eating looks like to give the coach a place to start.  One example.

a.      I went to see a nutritionist, and they told me what I thought I already knew.  However if I was this fat, I wasn’t very smart at all.  I came as a beginner and began my basic training.

2.     Increase awareness.  Make eating less automatic by pinpointing what you eat, how much, when, what triggers the overeating and what foods are involved. 

a.      I started a food/mood journal and tried to be honest about my overeating.  Also I began to see my behavior as information to use, rather than be ashamed of.

3.     Know the motivation.  Why is change necessary?  Find opportunities to deepen and strengthen motivation.

a.      I wanted to manage my lymphedema.  I wanted to have a good life.

4.     Change habits.  In order to be successful it is often necessary to focus on one habit or even one small part of a habit.          

a.      At first I thought that my tiny efforts would amount to nothing.  What I realized is that a tiny step is a huge improvement over doing nothing.

5.     Increase trust and confidence.  Keep the promises or return to the ‘coach’ and develop a better approach.

a.      Slow and steady kept me from being overwhelmed.

b.     I made my goals small, simple and achievable.

c.     I acknowledged successes and abilities from other areas of my life.

6.     Replace myths and misinformation.  Don’t let false ideas prevail.         

a.      As a dieter, I had all sorts of ideas that were misleading.  I thought if I ate only a little, I was good.  If I overate I was bad and out of control.  The truth is what I eat has nothing to do with my self-worth.

7.     Recognize the emotional hunger.  Take care of emotional needs without using food.

a.      Let go of guilt about food consumption.

b.     Replace negative thinking and stressed over-thinking.

8.     Commit to health.

a.      I knew my motivation to lose weight began with lymphedema but these issues controlled would change the rest of my life.

9.     Take action.  Refer to Chapter 5 for Action Plan information.

a.      Implement an action plan, assess the results, then modify as needed or repeat the successes. 

b.     Learn from all situations.

Continue.  Repeat.  Persevere.

 

My reminders to myself –

I am a person who is looking after my health.

I am willing to make healthy choices.

I am willing to change my behavior, attitudes and actions so that I can support a healthy life.

I will proceed towards my goal, today, even if it is the tiniest step.

This matters.  It’s about being FOR someone that matters.  Me. 

Chapter 23 - My Envisioned Life & In Conclusion

My Envisioned Life

 

My goals had certain key factors.  I would lose the weight and kept it off- a critical lymphedema management strategy.  I would do this by living without disordered eating.  I would have adopted other habits that kept my health at optimum level, such as the daily walks, physio and weight routines, lymphatic self-massage etc.  I would enjoy my life and I would be happy. 

Done and done.  It has been eight years now and the test of time shows my success.

My attitudes towards food are in a healthy zone.  I have little quirks and mini-binges and there are certain things that will throw me but I would be willing to have all my eating observed; it is that close to normal.  Overall, the goal of lessening the frequency and intensity of disordered eating episodes has been reached. 

There were a couple of times that I seemed to be in trouble with my weight, but I went back to my notes and coached myself back on track. 

I have learned that slips and slides are not reasons or excuses to quit.  They are just part of life. \
 

In Conclusion

I think of my lymphedema as part of me, like the size of my feet or my age.  It is what it is.  There are times when I need to discuss my lymphedema and the issues around it.  Often my education about lymphedema is more complete than the people, including medical professionals, in the room.  I own that.  I feel satisfaction in that.  I have faced this challenge and became an active self-manager of my lymphedema, and that is another cornerstone of my self-esteem.

Most people are dealing with something, whether I know it or not.  I try to be sensitive to the burden of others. I try to inform others about the impact of their curiosity based questions.  Many times I feel that I lead by example.  If I can manage to be happy and healthy despite lymphedema, perhaps someone takes heart from that and finds positivity and courage to face their own challenges.   

“We are here, I believe, to encourage others as we live the best life we can.” 

We are here, I believe, to encourage others as we live the best life we can.