Liz's Lymphedema Logbook Introduction Chapter 1

 

 

Introduction

                    

Some things come to you with the force of a mission.  So it was that I was inspired to write Liz’s Lymphedema Logbook.  I didn’t expect to be doing this.  I had made my decision in 2007 that I wouldn’t write about my journey through breast cancer, the treatments and beyond.  FYI Breast cancer treatments, specifically surgery and radiation, are risk factors in the development of lymphedema.

And yet…

One day, I got a call from a beloved Aunt.  She had just learnt she has lymphedema and she turned to me.  I would be able to give her guidance.  I, in her mind, was an expert.  I’ll give her one thing; I’ve been in her shoes.  However, I wasn’t there any longer.  Oh, don’t leap to the conclusion that I no longer have lymphedema because I do.  Lymphedema is a chronic condition. In my mind chronic meant severe, or serious, but it actually means forever.

Within her bit of flattery was a truth.  I had been diagnosed with lymphedema in 2008, and at that time became motivated to change my life. 

“I became an active self-manager and my lymphedema responded favorably.  I was fortunate, but I worked at it.”

The second indicator, that this was my book to write, came in the form of a casual book loan.  I had happened on the subject of ‘blogging a book’ and I was freshly inspired by the words inside.  I had spent a few days considering potential non-fiction subjects when my Aunt called.  It was at that moment that I knew I would write about my journey with lymphedema.  See what I mean about my lymphedema logbook being an ‘inspired’ choice.

Chapter 2 - Lymphedema Strikes

         

Lymphedema Strikes

 

 

Not me!  Not this! 

I didn’t feel this way about cancer.  My cancer diagnosis was a blow, certainly a big one, but my reaction was more like – okay it’s my turn to take the cancer journey.  In my heart I worried but I also believed that my journey included survival.  All I had to do was go through treatments and move on.  I knew the cancer statistics; I understood my risks, hereditary and lifestyle alike. 

Cancer came with faces, faces of survivors; that were my friends, and neighbors and associates.  People came to me with words of encouragement and experience; they came to me with tips and support.  Cancer was a scary place, but it was filled with kindness.  It was horrible but it was good. 

Lymphedema was more of a challenge and a fearful thing than the cancer had been.  This thing, this chronic condition was truly an unknown in my experience.  It was faceless.  It was the big dangerous thing that could happen.  I had been in the cancer patient two hour workshop about the subject but I ignored the information.  Lymphedema wouldn’t happen to me.  The fates had dished up cancer and that was enough. 

Cancer is unfortunately common.  There are organizations and fundraisers and public education and we know cancer. 

Lymphedema seems rare – and uncommon.  It is neither.  It is mine.  It is yours.  When you develop lymphedema, it’s not just a detour on the road; it is the road from here on in. 

 

Grief 101

The diagnosis and reality of lymphedema is never a welcome thing.  To put it bluntly, I had to take time out and howl at the injustice of it.  I know that life is never exactly fair, and I know that there are people who are dealing with much more than I was, but damn it anyway. 

I needed to grieve the downturn in my health.  My lymphedema developed six months after my last cancer treatment.  I was alive but that oh joy, the cancer is gone, and this is the rest of my life time, was going to be spent with a new burden.  My get of jail card had been abruptly torn out of my hand. 

My cancer diagnosis came after I acknowledged the lump in my breast.  I realize now that I was in a bit of denial.  I had gone to a mobile mammogram unit the year before, accepted their ‘all clear’ as a fact and ignored what my fingers were telling me.  It’s a funny trick of the mind, I guess, but those irregularities I felt were ‘how my breast feels’.  Then I would add, that’s normal for me. 

Guesses were brushed aside when I felt a pain in my breast.  My fingers could push on the very same bumpy spot that was maybe not normal and I could increase the pain.  I kept quiet for a month; one more option for denial had to play out in my mind.  Perhaps this pain was related to my menstrual cycle.   It wasn’t.   I had a lump in my breast and that could be cancer.

There was one remarkable thing that I noticed. I would say, I have a lump in my breast and everyone knew that meant the possibility of cancer.  I found myself the recipient of a remarkable range of reactions.   I received support that was truly supportive.  I received support that missed the mark completely.  Remarkably I was avoided, as though cancer were an insurmountable barrier.  Those people, who should have stepped up to the plate with their support and didn’t, or whose actions and words added to my discomfort were given my forgiveness. Perhaps I represented cancer in a hurtful personal way.  Perhaps they were ignorant of how to be supportive.  As I write this and remember how it was, I realize that I have to forgive them again. 

But with a cancer diagnosis, I didn’t have to explain what that meant.  Also like a lot of people, I thought that once my cancer treatments were over, I could go forward. My big challenge was over.  Cancer had not convinced me that bad things could happen to me, or maybe I thought it was my insurance policy.  I had cancer, beaten it, so I’m good now. 

Upon my lymphedema diagnosis, I could count the factors involved in its development, like surgery and the radiation that I needed to battle the cancer. But I had ignored things that I should have paid attention to.  There had been special exercises we were shown as post cancer treatment patients.  There were numerous indicators that I was at an unhealthy weight.  I never did a stretch exercise and I never concerned myself with my overeating.  There is an unconfirmed possibility that I also had an underlying injury in my arm that I wasn’t treating properly with rest and care. Consequentially my body was taxed beyond its limits and I ended up with lymphedema.                                                 

Now I felt guilty too.   The only thing I knew for sure, these negative emotions would pass, especially if I did not dwell on them.  I certainly couldn’t add discouraged and defeated to the emotional burden I faced. 

Learning that this condition is chronic was one of the first hurdles I had to face.  Forever is quite a bit to get used to.  My life is over – is how the first words came out.  Only in time was I able to modify that to be ‘my life as I knew it was over’. 

Then after much more time and huge efforts both mentally and physically I have been able to say that ‘my life is so much better now’.  Not with any qualifiers concerning lymphedema, but simply and absolutely better and that directly because of my lymphedema.

  

“When I was first diagnosed with lymphedema I was scared.  I didn’t know my future and my present had been altered beyond recognition.”

 

Lymphedema Strikes - continued

The face of lymphedema was that of a stranger.  I looked around my community and could only find one person who obviously had lymphedema – the wearing of the garments being the most visible clue and her history of breast cancer quite well known.  I reached out to her, needing advice and empathy, feeling overwhelmed.  She was polite and distractedly responded to my questions. 

“I tell myself that it’s just a sore arm.” She said.

Could I really argue with her?  I almost did. 

“No.” I said.  “This is huge.”  Then I could say nothing more than thanks.  I realize now that she was in a totally different place in her lymphedema journey.  It is also likely that her lymphedema experience hadn’t cut such a huge swath through her life.  Or she adjusted to difficulties better than I did. 

My lymphedema was preventing me from enjoying many of my pastimes that would have eased my stress.  The bandaging that was the first avenue of treatment made me a visibly different person and the object of intrusive curiosity. Even a simple pastime of browsing in a store became an emotional challenge.  Stares, questions and often, believe it or not, friendly pokes on my bandaged arm.  My reaction was an angry hurt withdrawal that few understood.   

It seemed lymphedema, with the hurt involved, both socially and physically, had changed my personality.  Yet, I tried to maintain the image of a well-adjusted patient.  No one, after all, enjoys listening to someone who whines.  I tried very hard to fill my days, to distract myself within the pages of any book and to do ‘anything’ that might help my arm.

I believed that I would have had a community of supporters with my lymphedema diagnosis, just the same as I had with my cancer diagnosis.  But only a few people were even aware of lymphedema.  If people knew what it was, and how it affected patients, it would have been different.  I could have led the way, if I knew what lymphedema was going to mean for me.  But it was all an unknown.  There was little understanding so there was little support.   Even those closest to me had only a glimmer of what I was going through. 

Eventually I came to understand that the pain I experienced was not the average lymphedema experience.  Lucky me, I was the one in a thousand patient with the level of pain that I had.  I realize now that I should have sought professional help to deal with everything, but the pain kept me from thinking clearly.  I didn’t even think to mention the level of pain with my physiotherapists and because I presented well, they didn’t ask.  However I am grateful.  The pain became a huge factor in motivating me to change my life around. 

I remember my reaction to my lymphedema diagnosis.  Now some 8 years later, I wonder at that reaction, but I know now that I have been able to successfully manage my condition, first by will and now by confident habits.

I’ve learned to live well with lymphedema, something I didn’t know I could do.  I have been fortunate to have reduced the symptoms of lymphedema to a point where my life is pretty average.  But in the beginning, all I knew at the time was ‘This was huge’.  I doubted my ability to cope. 

 

“Little did I know that meeting the challenge of lymphedema would set me on a path that included wellness in my whole life.” 

 

 

 

Chapter 3 - Gaining the Knowledge Needed

 

 

 

 

Gaining the Knowledge Needed.

 

 

 

Among the people who became aware of my lymphedema are those who tried to help.  I thank them for their concern and efforts but I was very wary.  A well-meaning untrained individual does not always have the knowledge base to be truly helpful, and unfortunately an ineffective or harmful suggestion can lead to a worsened situation.   I had learnt from my reading that any downturn in my condition might then become the new standard.  Lymphedema is progressive.  Unfortunately, I did not have the knowledge base that I needed to discern if an idea was good or not.   

As an example, massage therapists were one direction that I was pointed to.  I didn’t know how to assess their qualifications, so I never sought their help.  Other tips and recommendations came my way but again, I had questions and concerns. 

The answer was to become more educated and one of the finest resources I have discovered is Canada’s Lymphedema Magazine ‘Pathways’ (Empowering patients and professionals).  Eventually I found a copy of the magazine at one of my physiotherapist appointments.  Pathways is published four times a year on behalf of the Canadian Lymphedema Framework and its provincial affiliates.  I joined the Alberta Lymphedema Association and began reading my own Pathways magazine.  It was one of the smartest things I have done.  Within the pages, I found practical tips, solid information and more than enough facts to figure out the help from the hype. 

Notes from Pathways Fall 2012 – ‘the majority of massage therapy graduates across Canada do not receive enough education to be qualified to treat lymphedema patients.’   Having said that, the same article outlines what training is required and how massage therapists have been pioneers in lymphedema care.  It’s good to know. 

Massage therapists who have been trained with the original Dr. Vodder method of Manual Lymph Drainage and Combined Decongestive Therapy for Edema management have a lymphedema specific knowledge that other massage therapists may not.

 

Surviving isn’t the only thing. 

While I was busy dealing with my new diagnosis of lymphedema I found that many around me were still hung up with my cancer story.  Wasn’t I glad to have survived?  It’s a prevailing train of thought around cancer survival. As though the mere fact of being alive is the only thing that matters.  This is true.  I’m glad to be alive and I am a cancer survivor.  But this is also false.  I am alive, but I am also altered by cancer.  I can no longer assume that cancer will happen to someone else.  I cannot assume that I will live as long as the average person.  But for many people I now bear the label of cancer patient.  People treat me different when and if they know I’ve had cancer.  So let me set the record straight. 

I’m not a cancer information resource.  I do not need to know of every new diagnosis of cancer in the community.  I don’t have all the answers about cancer, I cannot even tell you with absolute certainty why I became a cancer patient. 

In a perfect world I would put cancer behind me, and just get on with it.  I would walk anonymously as I went about my day. I could do that, but lymphedema changed that. 

I have chosen to manage my lymphedema by being compliant and wearing the compression garments.  My garments attract attention and questions.  People stare.  People poke at my arm.  People go out of their way to make jokes, expecting me to respond with a funny story.   

I would love to have the words that turn this aside.  The best I option I have found is to say ‘This is not an injury.  I am dealing with a condition.’  Sometimes I will add a condition of the lymphatic system. 

Sometimes I turn the joke back on them, and while that often is the best way to deal with this, I am left to undo the damage that has done to my day.  None of this is easy or pleasant to do.  I do not want to be a curiosity.  I do not want to be reminded of my problems.  I certainly don’t want to be explaining lymphedema to everyone who knows nothing of it.  I don’t want to be teaching manners.  I don’t want to be rude myself. 

It takes the Wisdom of Solomon to figure out what answer is appropriate to the situation.  I could refuse to talk about it entirely.  However there are golden moments as well.  I’ve been approached by a lymphedema patient (who wasn’t wearing the tell-tale garments) and I was able to share my pain management successes including weight lifting exercises.  Another patient was thrilled to hear about the silicone grip band that kept my sleeve in place.  I responded one time by calling my lymphedema and the trademark garments ‘a souvenir of my cancer treatments’.  I quickly found that I touched a troubled heart that had just received a diagnosis of cancer. 

“It’ll be your job for a while, but you’ll be fine.”  I said, just as someone else had said to me about my cancer. 

 

 

 

 

“Let me say this to you about your lymphedema.  You’ll learn to manage what you can and to accept the rest.  It’ll be okay.”

Chapter 4 - In the Meantime

In the Meantime            

The diagnosis of lymphedema was just the newest of my problems.  I had extremely tender feet, the result of chemotherapy induced nerve damage.  I had fatigue.  I had fears of the cancer returning.  I had difficult relationships and emotional problems, and I had losses and disappointments.  Now I had lymphedema.  To top it all off and to be the straw that broke the camel’s back.  Shit. 

I quickly found out that basically I was on my own.  I took my swollen arm to the Dr. twice.  He prescribed a diuretic on my second visit because the first appointment we discussed if the swelling might not be the result of an insect bite.  I realize now that I knew that this was lymphedema but I was fighting that knowledge, I was hoping against hope that I would be mistaken. 

I remember during the second appointment, when the doctor asked me why I was so upset.  Then he asked me, “Why are you so concerned about the possibility of lymphedema?” 

This was my first clue that lymphedema is a misunderstood condition.  It certainly was not in his radar.  I didn’t expect that the medical system that had served me so well during my cancer treatments would be such a poor resource with lymphedema.

By the time a month went by, the swelling had travelled from my arm into my hand.  My fingers looked like fat little sausages.  I was in significant pain. 

I knew that my cancer hospital had a physio department and that they helped patients with lymphedema.  I phoned them.  They told me that I couldn’t just come up and get help; first I needed a referral.  I didn’t book another appointment with my local doctor; I simply phoned in and told his nurse that he was to send the necessary referral.  To his credit, he did.  Then I contacted the physio department again and luckily I caught an appointment within the week.  Someone had cancelled, or it would have been three weeks.  I shudder to think of what might have happened in three weeks.

Later someone pointed out to me that it is too bad that I didn’t get the help I needed before my hand was involved.  Too true.  That delay cost me dearly, but I realize that my own reluctance to face lymphedema played a role.  A person can’t look back, and I did as best as I could at the time.  I didn’t know how strong I really was. 

 Do Not Knit

The words haunt me still.  Right on the top of the page it said ‘Do not knit’.  It pains my heart to this day to remember how that felt when I read this advice concerning lymphedema management.  I had become enthralled with the ancient art.  I was passionate about yarns.  I devoured books about knitting; I dreamt of knitting projects and my needles were always clicking.  I was devastated.  Simply crushed.  You might think I’m being extreme here, but it was like I had been parted from my love.  I couldn’t knit. 

Knitting was considered the worst of the small movement, fine motor skill, lymphedema aggravating activities.  Then I learnt that most of my list of favorite activities matched the list of things I should not do. 

I didn’t argue with the instructions.  My hand and arm were in severe and constant pain and I knew I couldn’t live like this.  I was right when I thought lymphedema is a life changer in the way that the cancer wasn’t.   

I grieved knitting.  I resented my knitting friends. It wasn’t fair.  Those people who knew I was a knitter would ask after my activities with yarn and were surprised to see me tear up. 

I have lymphedema.  I would say and then I have to explain.  I didn’t have the words.  My friends didn’t understand but I couldn’t explain further.  I felt alone and sorry for myself.  I suffered through my days struggling to fill my empty hours, time that I would have spent knitting.  Then I would retire frustrated and sad.  Occasionally I would have lovely dreams where the soft lovely yarn knit into beautiful garments.  I’d wake up crying. 

I had to give up knitting but what was also evident that I had to give up thinking about knitting.  I packed up all that I owned that related to knitting.  I stopped haunting those sections of the library and the book stores, despite how unconscious my feet might lead me. I had to stop.  I learnt to avert my eyes from knitted garments, lest my hands fondle the textures, lest my interest lead me to question the owners if they had knit the item themselves.  I grieved some more. 

 Lemons to Lemonade

When life hands you lemons…and it will.  Challenges come up all the time, for everyone.  Have you noticed that some people rise quickly to face their challenges while others are sunk by every single little thing?  I’ve been in both boats and I’ve learnt some things while I was there. 

The absence of choice is part of the struggle to meet a new challenge.  To realize that life has dropped another lemon in your lap is never met with ‘Oh goodie, I can make lemonade!’  Eventually the challenge has to be accepted and met. 

I may not have chosen my restrictions concerning my lymphedema, but I’ve traded hobby work as my main creative outlet to a focus on writing.  I grieved my losses, especially the knitting, but with that behind me, I have come realize my restrictions have given me an element of freedom.  Yarns are no longer an irresistible temptation and the knitted projects are not waiting for my spare moments. 

I am free of that and that is a huge advantage.  I have that time and energy to write and I love it.  I’m grateful now that my limitations empowered me to choose this version of lemonade. 

 

“I learned to talk to myself with compassion, with courage, and as time passed, with confidence.” 

 

 Take Hope 

 

I cannot skip around the fact that lymphedema is serious and the adjustments can be huge.  But while I am serious, I do not want to be grim.  Lymphedema is life-changing but not life-ending.

My lymphedema journey is and continues to be a challenge, but I am healthier now and more adjusted than any other time in my life.  I believe lymphedema gave me the wake-up call.  Good can come out of some pretty tough situations and I have proven that to myself.  Sensing the possibility of good gave me hope.  I took that hope and I held on to it.  Do the same. 

 

 

Chapter 5 - After Lymphedema Perspectives

 

 

After Lymphedema Perspectives     

 

Early in my relationship with lymphedema, I realized that I would have to keep my perspective.  I could not ignore lymphedema but it was equally important that it not dominate my life.  That, as many things are, is easier said than done.  Everything that had been my life was affected so how could lymphedema not dominate my life?  During the first months of dealing with lymphedema, I was in pain and my ability to use my right hand was extremely limited.  I could do practically nothing. 

Things had to change.

The definition of insanity; if you continue to do the same things, you cannot not expect different results.  While I hold that to be true, and I certainly believed it when lymphedema struck me, it isn’t exactly clear what a person does instead of the same thing they’ve done in the past.  What exactly am I to do?  I had to find the answers to that.   

One of the hardest things during my initial adjustment period was learning what I could do and what would create difficulties.  It was trial and error, with the errors producing significant pain and potential long term damage.  My bullheadedness wasn’t the best ally, and I made some mistakes.  I was in a hurry to get on with my life.  I was always pushing to the edge of reasonable activities and often overdoing it. 

It was a dark time when my therapist gave me a splint to put my hand in and the explicit order to ‘do nothing’.  If this was going to be my future, I really wasn’t going to adjust.  Luckily the rest gave my body a chance to recover.  I know now that I was going to return to an almost normal life, but at the time the future looked grim. 

Once I got through the total rest assignment, I still had to figure out what my life would look like.  What could I do?  Again, I returned to my normal duties with an eye to pacing and limiting the damage to my arm. That still left a big hole in every day.  I needed time filling and activities and I needed a purposeful occupation.  I didn’t have a clue what that would be beyond keeping my lymphedema managed and I didn’t yet know how to do that. 

It seemed what I was doing was not good, for firstly I aimed to do something different.  I would get different results if I did something different.  It wouldn’t necessarily be the ‘right’ action but I would be able to figure out what worked and what didn’t, because either it worked or it didn’t.  I realize that this is about as basic as you can get, but I needed that basic, basic, truth to be hammered in.  I might give lip service to ‘knowing’ what to do, but since I wasn’t doing it so I didn’t know a damn thing.  I just knew that I had to do things differently because what I was doing based on my know-it-all-attitude.  That wasn’t working. 

Simple.  No one was waving a map in my face.  I had the stop sign.  Stop this now, my body had spoken.  Lymphedema. 

Easy does it was the attitude that I had to develop.  However, in the past I had been an all or nothing worker.  The signal for housework, as an example, was the point where I became disgusted with things and then I would housekeep binge. 

Pacing is still a problem for me, but I have gotten better.  I preferred all-day-get-the-job- done marathons to short spurts of anything.  That had to change.  I had to stop being the hare and start being the tortious on a racetrack that was no an obstacle course.  But I still wanted to be in the race.

Early days, I kept things afloat as best I could, but mainly in respect to my mental well-being, rather than any white glove house inspection.  My desire to go forward with a normal life, even if it was vastly different than my old life, served me well.  Okay.  So my bullheadedness did help.

 

“Since it was my right hand and arm that was affected and I am right handed, immediately I was cut off from a vast number of my normal activities.”

 

Adaptations were necessary in both my physical and emotional world.  It helped to remember that I had certain pastimes and activities fade out of my life in the past.  I had chosen those changes while these restrictions were forced upon me, but the end result was the same.  It helped to realize that everyone had something they couldn’t do. 

I also realized that I could no longer do everything that appealed to me.  I had to choose.  I was limited by lymphedema, something that seemed a handicap until I thought of it differently.  My limitations meant that I had gained focus.  Lymphedema had gifted me with this.

My left hand got pressed into service but it was inept and needed training.  I garnered a few tips from material pertaining to amputees who were managing their world with one hand, but mostly I applied my own ideas.

Could I keep my house clean?  I swept with my vacuum cleaner that I manipulated with my left arm.  I learned new methods in the kitchen and I set aside fussy recipes.  I managed.  I told myself that my ‘job’ at the moment was to do everything I could to manage my lymphedema and to adjust to my new life. 

Writing is the one thing that has endured as a source of comfort for me.  Yet the physical act of writing was challenging.  There were many components to this.  Lymphedema and fine motor skills are not good partners, so my pen and paper method was not a good idea.  It takes two hands, normally to type.  But I would continue to write as this was an activity that I loved.  I spent time each evening teaching my left hand to write, beginning with large figure eights and working my way to writing legibly and within the lines.  I learned to type with one hand, to make notes with my non-dominant hand and to go at composing paragraphs in five minute segments when rest was necessary.  It wasn’t pretty but writing is something that I would fight to keep in my life.  I didn’t know what my writing would look like but still I chose to be as productive as possible with my writing.

I left hand operated my new camera as well.  It was lightweight and I could hold it upside down for my left hand to push the shutter button.  My camera was a new hobby’ one that helped me get more exercise and gave me an outlet for my creativity.   

I found things that I could do and I found how I should think.  I chose to be grateful that I had this life to live.  I certainly gained optimism as I went along.  It helped that I was making physical progress with the lymphedema condition, reducing the amount of fluids being retained with a combination of daily bandaging, weight loss and exercise.  My weight loss efforts are described in the chapter – the Weight of the Weight.  Why my excess weight aggravated my health will be explained as well. 

 

“I chose to be as healthy as possible with my lifestyle- accepting the reality of lymphedema without grieving or become a victim.”

 

 

 

 

 

Chapter 6 - Workshop Series - Action Plans

 

Workshop Series

 

There was a small article in the local paper.

‘Workshop series returns to support Vermilion residents with ongoing health conditions.’

It sounded promising.  I mentioned it to a friend and she was interested in attending and could provide transportation.  We both registered.  It seemed I was catching a break.  It turned out to be more than that. 

Action plan basics

I’d heard of Action Plans before, and I guess I was actually a little disappointed when the workshop was based on them.  However, I had come to learn and learn I would.  My mission, I decided would be to become an active self-manager.  I would see if this tool of action planning was for me. 

I’d love to be able to go through my notes and produce for you a step by step record of how I succeeded in managing my lymphedema.  Those notes don’t exist.  I don’t have a complete written account of my journey, but actually this is not important.  I believe that anyone can create a pathway to be an active self-manager.  There is no magic in the specifics of what I did.  The power is in the process. 

Loosely defined the process includes these first steps

1.       A decision of what you want to accomplish.

2.       Searching for alternative ways to achieve this.

3.       Making short term goals – action plans.

And these follow up steps.

4.       Carrying out action plans.

5.       Checking the results.

6.       Adjusting the plan.

An action plan is a basic tool, perhaps the only one you will need.  Look at these notes I made – left-handed - during one session of the workshop that introduced me to goal setting in the action plan method. 

•                    Support my healthy lifestyle – physically

•                    Achieve this by - daily walks – physio session and weights.

•                    Walk to the neighbor’s gateway before 4:00 P.M.

•                    Physio – in the morning before breakfast

•                    Weights- after supper before bed

Every day this week for all three – bad weather walking will a timed session indoors including the stairs. Confidence level that I can achieve these goals-7 or 8 out of 10

If you compare these notes with the steps to action plans you will see that I have decided what I wanted to accomplish- support for a healthy lifestyle.  I had chosen some specific tasks for that – daily walks, my physio exercise and lifting weights.  Then I made those general goals into specific ones by adding in time and place and alternate options.  The confidence level was a checkpoint to make sure that I had a chance of achieving the goals.  What is left after this step is the monitoring of actual activities and fine tuning of the plan. 

The list previous is the plan I made for one week, concerning one aspect of active self-management.  It is the blueprint that I used in many situations.  Personally I was fairly good at making plans, but what turned the plans into sweet reality were the follow-up steps. 

 

 

“I used one page per action plan and made sure there was enough room to keep track of my walks, or frequency of exercise or compliance to other goals.  This helped me keep an accurate count so that I was held accountable.  It was a good place to record problems as well.” 

 

If I remember correctly, I had committed to walking previously but this action plan involved a bump up in frequency.  The physio, as I called it, was a set of stomach strengthening exercises and arm stretches.  The weight lifting exercises helped with pain management but were often forgotten.

I believed, and it proved true that this action plan was doable, and that could become part of a success story.  It was not a done deal; there were many weeks where I had to adjust my goals to the point where I was confident that I could take on an increase in frequency.  It didn’t happen the first week/month or even for some particularly tough goals even the first year.  (I had action plan journals for my disordered eating and also for my writing goals. I forged onward, crediting myself for progress, adjusting my goals to be realistic.  

The journals brought my goals from fantasy to reality.  They reminded me of what the goals were in very specific terms and they served as a gauge of success. 

There were other tools that achieved the same thing.  Charts are one example. I made a chart with my weekly recorded weight.  I hung it on the side of the fridge.  I had a record of muffins ate at meals or as snacks.  The chart meant that my actions were in plain sight.  

Whatever achievement that I desired could fit into an action plan.  Whatever form I used included a track record of my results.  The information, including details of failure that I gained, served to help me make better plans.  Through action plans I discovered motivation keys that were custom designed for me.  I made notes of my successful methods so that I could repeat them.  I’m convinced this was crucial for me, those habits of thought and action needed time to be second nature. 

 

“Find daily reminders of your motivators.  Find examples of success – no matter how small.  This builds self-confidence and reinforces good actions.”

Chapter 7 - The Difficulties of Change

 

 

 

 

The Difficulties of Change. 

 

 

It’s hard enough to change when you want to.  It can be quite difficult to change because conditions have forced you to change.  Having made these statements, I realize that I’m speaking for myself. 

I suffer resistance to change, and I suffer resentment to being forced to do something.  However, no amount of resistance or resentment was going to make one bit of difference.   I found it necessary to let these things go.  How?  I don’t know exactly the steps I took.  I do remember doing a 180 exercise, where I forced myself to consider the idea that lymphedema came into my life as a good thing.  I also remember paying attention to others who had overcome far greater difficulties in their lives.  I certainly came to the point where I recognized negative emotions as being something I could dwell on but a far better choice was to overcome them. 

I could be accepting and encouraging.  I could have a wonderful life.

 

“There was only so much I could do in managing the physical aspects of lymphedema, but my attitude was mine to harness.  I created an environment where change was possible.” 

 

 

Deciding what your goals should be is a tricky bit of business.  Sometimes it isn’t exactly clear what the problem is.  I’ve been known to consider problems as being too simple, and also as too complex.  Eg. I weigh too much because I eat too much. 

This is too simple because disordered eating is multi-layered.  There can be a lack of awareness, bad habits, poor responses to stressors  and even wrong thinking.  The statement of my problem is not helpful. 

However, I weigh too much and I need years of therapy to uncover the roots of my problems is too complex.  It’s also a big fat excuse.  Again, this isn’t helpful. 

It is far more helpful to contemplate one healthy change and implement that.  How?  Action plans. 

1st. Define the positive change you want to make. 

2nd. Begin the action planning.  Remember that the action plan is to make a step towards those huge long-term goals.  One step that you will take immediately. 

The action plan is a simple tool, but it is a powerful one.  As the name implies it involves a plan and invites action.  I forced myself to use this tool because I really only had given it lip service before.  I’m quite good at going ‘yeah, yeah, I get it’ but never actually doing the ‘thing’.  Not helpful at all. Remember that action plans begin with goals, but add in the accountability factor. 

 

Action plans in my life  

 

I found that it is important to make my goals achievable and to build on that success.  Further in this document I share some words about getting back on track because everyone will slip off the chosen path.  I soon found that I had to think of those slips as containing valuable information that I could use for another attempt.  Forgiveness and encouragement were essential.  Also I had to challenge the ideas that held me back, and rethink my approach to deep rooted habits and problems.

What is the best I can do today? I would ask and no matter how feeble the answer, that was good enough for that day.  I knew that I could build on successes, if I didn’t focus on my failures.    

I needed to challenge the ideas that held me back – this is the perspective piece that helped. 

I read books about motivation, habit forming, optimism, procrastination fighting, as well as inspirational stories of people who overcame challenges, etc.  I found things that work for me.  I could list them, they may help you, but individuals are unique and my answers might not be yours.  This isn’t easy and it probably doesn’t serve anyone to be spoon fed someone else’s answers.