Coping With Chronic Illness - Other People Have Problems Too

Everything seems to be hard for me and requires a lot of thought and planning.  For goodness sake, washing my hair requires a plan of action and plenty of time afterward to rest.  Because everything is harder and requires more thought it is easy to become self -centered, focusing only on what I need and want, thinking only about what is happening to me.  

Also, illness often brings isolation.  Keeping my own company so much makes it easy to think only of myself.   

One problem with being too concerned with ME  is that I tend to downplay other people’s problems.  I never think they are as bad or important as mine.  This is simply untrue and unfair.  Their problems are usually just as valid and often very painful and frustrating.   

Coping With Chronic Illness - Getting to Know Myself - Part 2 - My Food

It’s easy to lose ourselves in our various illnesses.  So it’s important to be reminded from time to time that you are a person, not an illness.  You have a personality, interests, likes, dislikes, opinions, obligations, and responsibilities.  So every now and then I plan to provide some questions designed to help us get reacquainted with ourselves gradually.  Here is the second set.

Coping With Chronic Illness - Dealing With Its Unpredictable Nature

Be Flexible Like A Gymnast

Unpredictable Chronic Illness - Be Flexible.

“Today is canceled, go back to bed.”  

When you live with an unpredictable chronic illness you really do live day by day, hour by hour.  At any given moment you may have to chuck the plan aside and go to bed.  You don’t always have control – even if you’ve been trying to be good and take it easy and take care of yourself. 

Coping With Chronic Illness - Getting To Know Myself - Part 1 - The Outside Me

Chronic Illness.  Getting to Know Yourself.

I became ill at a very young age.  As the years went by the lines between me and my illness started to blur.  And at some point I realized that I was mixing the two. 

Coping with Chronic Illness - You Do Not Need to Justify Your Existence

Coping With Chronic Illness - You Don't Need to Justify

“Never make excuses.  Your friends won’t need them and your foes won’t believe them.”  -Wooden

With some of my old friends I always had to excuse myself for being ill.  I had to say I was sorry to them over and over for something that wasn’t my fault.  And it made me angry. 

Energy Economy - 10 Ways to COMBAT Cognitive Dysfunction (Brain Fog, Fibro Fog)

10 Ways To Combat Brain Fog

As I see it, dealing with cognitive dysfunction falls into two categories:  1. Coping, and 2. Combatting.

Coping means to accept that it is a problem and do what you can to live within its limits.  Cope can literally mean to come into contact with, to meet.  So to cope is to go out and meet the challenge as best we can.  Last week we discussed 10 ways to cope with this problem.  Today we will discuss how to combat it.

When I think of Combat, I think of a battle.  And often battles are fought over territory.  So, ‘to combat’ means to fight for our mental territory.  Literally it can mean to take action to reduce, destroy, or prevent something.

Coping With Chronic Illness - Talk. And Talk Some More.

Talking Is Important During Chronic Illness.

I am not a big talker.  I prefer to listen, to watch, and to work things out in my head.  But coping with illness involves many different emotions and I just can’t seem to sort through them all on my own.  

 Somehow, just speaking the words out loud to a trusted person clarifies things.  And because the person(s) is trusted I don’t have to worry whether I am right or wrong, betraying a flaw, being little or petulant or negative, whether I sound like a crazy person.  They will not form a negative opinion of me based on the wild talk of a grieving person, or the confusion of an overwhelmed one.  They will listen and they will help me find sanity again.

Energy Economy - 10 Was to COPE with Cognitive Dysfunction (Brain Fog, Fibro Fog)

Brain Fog (Cognitive Dysfunction) and Chronic Illness

One of the most difficult and devastating things I have had to deal with in this last year is a worsening of my brain fog/cognitive dysfunction.  I thought, ‘so my body doesn’t work, at least I can catch up on some reading and studying’.  But no.  To my horror, I found that even reading caused extreme exhaustion, pain, and debilitation.  This realization was a very low point for me.
 

Cognitive dysfunction (or brain fog) has many causes.  It can be a symptom in illnesses like depression, lupus, Celiac disease, multiple sclerosis, chronic fatigue syndrome/myalgic encephalomyelitis, fibromyalgia, sjogren’s syndrome, rheumatoid arthritis, cancer, MCS (multiple chemical sensitivity), and many more.  It is also sometimes a symptom in ADHD and peri-menopause.  And this barely scratches the surface.

Coping With Chronic Illness - I Can't Do It Alone

Coping With Chronic Illness.   I Can't Do It Alone.

I have a lot of friends, whom I love and care about and who love and care about me.  But I have a small support group, the nucleus of my everyday life, who are my inner circle.  I could not do it without them.

My inner circle helps me with:

Energy Economy - 12 Ways To Simplify Your Grooming And Dressing Routines While Chronically Ill

Have you ever felt like the woman in this picture?  By the time you are ready to leave the house you have already used up all your energy?  I have.  So, I'm trying new and different methods to more successfully deal with these things.

These suggestions may be controversial and I am by no means to be taken as law on these points.  Your appearance can be a very personal matter fraught with deep emotions.  Take my words with a grain of salt.

 

With that proviso in mind, here are the suggestions I am working on for saving energy while still putting your best foot forward.

Friendship Is a Basic Human Need Part 4 - How to be a Good Friend to a Friend Who is Chronically Ill

This post is in response to a reader question, which I loved.  Jo, from All The Blue Day, asked how to be a good friend to a person who has a chronic illness. 

If you know someone with a chronic illness it may be difficult to figure out what to say or what to do to help.  Ultimately, knowing that you genuinely care is the most important thing.  Don’t hold back from them just because you are afraid of saying the wrong thing.  But, these are some basic ideas that it would be good to consider.  (These are good suggestions whether they are a new acquaintance or an old friend.)

Keep in mind:  This list may seem long, but the suggestions are not very hard.  You are probably already doing several of these things.  Either way, just try to incorporate one suggestion at a time.  

Energy Economy - Dealing With People While Chronically Ill

When you get right down to it, dealing with people can be one of the most physically, mentally, and emotionally draining aspects of dealing with your illness.  So, I thought it only right that we cover this under Energy Economy, because if we don’t learn to deal with people more effectively we will have serious problems.  So here are some of my top suggestions.  (Keep in mind that these suggestions are for the masses, the public, not for your close friends or your support system.)

Coping With Chronic Illness - 18 Ways to Ward Off Sadness

Coping With Chronic Illness - How to Ward Off Sadness

It is not practical to expect that every day or every moment I will think positive thoughts.  Dealing with our illnesses is going to get us down sometimes.  And I have periods of time when I do not have the physical, mental, and emotional strength to fight off negative feelings.  That is just life.  Sometimes we don’t so much cope as just exist.

I have done my share of just existing.  And then, when my inner strength has been renewed, I feel like I have to re-learn  how to live and how to cope.   So, I keep lists.  I have lists reminding me what foods I can get for myself at different levels of health.  I have lists reminding me how to be a friend.  I have lists reminding me how to contribute to a good atmosphere in my home life.  And I have a list reminding me of what helps when I am down.  These lists are really plans of action, or battle plans, for when I have the energy to fight.

Energy Economy - Personal Hygiene and Chronic Illness

Bathing has become an ordeal for me.  I can’t shower now because I can’t stand up that long and I can’t raise my hands above my head.  So I take baths.  But doing a full bath – like washing my hair and shaving my legs – takes forever and is exhausting.  I have to rest for hours afterward.  So I am constantly looking for easier, better, energy-saving ways to perform personal hygiene tasks. Below are a few practical suggestions I (and others) have followed at various levels of illness to make bathing and personal hygiene easier.  I hope some of them work for you too.

Coping With Chronic Illness - 3 Ways To Advance In A New Direction

Accepting our illnesses is not a sign of failure.  It does not mean we give up.  We simply advance in a new direction.

It is true we may have lost much.  (See It’s Ok To Grieve Your Losses.)  However, we also need to understand what is still there.   Here is a plan of action for moving forward.

Evaluate your condition

•    Think of what you need to alter and then seek to change what is changeable.  This will help you reclaim some control.  (Some things you may be able to change are diet, sleep habits, mental attitudes, household arrangements, healthcare, work, exercise, daily activities, the way you get around, the way you care for yourself, etc...  With the help of loved ones, perhaps you could set up some systems or strategies to help you accomplish what you can’t do alone.  See also the posts under Energy Economy for suggestions on changing what is changeable.)

Coping with Chronic Illness. Accepting Reality - What It Does Not Mean.

Accepting reality does not mean giving up hope 

I want to be clear.  Letting go of the dream and accepting reality does not mean giving up hope.  It does not mean giving up on life.  And it does not mean that what we can do now won’t change in the future.  It is a tricky balance, I know.  But, never, never mistake being reasonable for giving up.  

Accepting reality is not failure.  It may feel like that at first.  But that is not what it is.  It is advancing in a new direction.  Because we can only move forward when we have accepted what we have to work with.  

So, you have finally started to see your reality and you have realized that this dream or goal is damaging to you or your family, or is simply unattainable.  Can you substitute a more reasonable goal that will keep you in line with what you love, but actually be possible for you?  We want to do our best.  That is all that the people who love us expect from us.  

Energy Economy - 14 Suggestions For Cleaning House While Chronically Ill

Arggg.  This can be a very frustrating problem when you have physical limitations.  In the end, we may just have to settle for less than best in this area.  I don’t claim to have all the answers.  I certainly am not able to do all the cleaning myself.  But, these suggestions have helped me and others I know to do as much as we can.

Coping With Chronic Illness - Let Go Of The Dream, Accept Reality, And Be Happy (It Breaks Your Heart And Then Rebuilds It)

Why cherishing the dream is counterproductive:

 

In my last post I wrote about my efforts to be real with myself and others and to stop lying.  Part of telling the truth and letting go of the lie has involved giving up some of my dreams and perceptions of myself.  

I had unrealistic expectations and I pushed myself to reach them no matter my level of health.  And when I failed over and over I berated myself horribly.  I couldn’t seem to give them up.  I couldn’t’ let myself see my reality much less learn to accept it.

The trouble was that I still retained the expectations and goals I had when I was healthy. 

Energy Economy - Leaving The House While Chronically Ill

Leaving the house while chronically ill.

Energy Economy – Leaving The House

When you are chronically ill, just the act of leaving your house may be difficult.  You may have very limited mobility.  And you may have some emotional effects from being confined to home so much (if you are confined to home) – anxiety or fear about leaving the house and all that entails.  Everything is harder when you are dealing with a chronic illness.  But, here are some simple suggestions to make life a little easier. 

Coping With Chronic Illness - 2 Reasons Why Lying Keeps You Sick

I have discovered that it is possible to be a conscientiously honest person and still tell lies.