Coping With Chronic Illness - Your Team Must Believe You First

“I wouldn’t worry, I think you’ll get better.”

This is what the disability lawyer told me as I sat across from his desk, shuddering uncontrollably from the effort of sitting up for an hour.

What I should have said was, “Oh really?  What exactly makes you think that?  Tell me why, after 15 years of being ill and no available treatment for my disease, you believe I will magically just get better.  What exactly do you think will change?“

That is what I should have said.  But I didn’t.  I stayed quiet.  I did look disapprovingly at him – but that is the best I could do.

Coping With Chronic Illness - I Am Not Lazy

I'm not Lazy, I'm sick.

I can’t tell you how many past journal entries started with, “I’m so tired.  I feel so lazy” followed by pages and pages beating myself up for everything I wasn’t doing and describing in detail exactly why I was lazy.  

And of course there was the requisite new schedule on the last page, drawn up and ready to help me use my time wisely.  Every moment of the day accounted for.

I didn’t know myself or my illness very well then.  I know them better now, though, and this is what I have discovered:

I am not lazy.

Getting To Know Yourself Beyond Illness - Part 3 - Personal Interests

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 that are designed to help us get reacquainted with ourselves gradually.  (You can see part one – for the external basics and part 2 for your food preferences and abilities.)  

Energy Economy - How to Get Organized while Chronically Ill

How to Get Organized While Ill

If you have been following this 5 part series you already know that organizing, de-cluttering, and simplifying are three different things.  And, it is actually pretty important to understand their differences.  Otherwise things just get confusing.  See this post Coping with Chronic Illness – The difference between simplifying, decluttering, and organizing.

Confessions

OK, I’m just going to say it.  This is my least favorite subject in this series.  De-cluttering, I love.  Simplifying, I love even more.  But talking about organizing just brings things to a halt for me.

And this is why:  I literally have nothing new to say.  This topic is covered SO much – it is actually overwhelming to try to think of a new way to approach this.  However, there are one or two things which it is important to know.

Definition and Benefits of Organizing

To organize means to channel our stuff into orderly lines.  It does not require getting rid of anything per-se, it just requires setting up systems to juggle everything.

Being a little more organized can help us, the chronically ill, in various ways.  It can help us find things easily, even on bad brain fog days.  It can help us keep things clean with a minimum of effort.  It can give us a feeling of peace.  And that leaves your brain open for other activities.  

Living With Chronic Illness - The Interesting Life Plan

The Interesting Life Plan

A few years ago, let’s say seven or eight, I decided that what with one thing and another (in other words, debilitating illness) my life was not interesting enough.

Now, it’s not that I wasn’t busy.  But something was lacking.  I wanted to be engaged.  I wanted to look forward to something.  I wanted some variety and color.  I wanted a little less predictability and a little more of the unexpected.

Energy Economy - How To Declutter While Chronically Ill - Part 2

Ok.  We’ve made a plan (see here).  We’ve armed ourselves with six questions that will focus our decluttering energy so that we can achieve the desired results.  We have made a Keep vs Throw list.  And we have got some basic principles to keep us grounded (in case we were getting too heady with all this romantic tidying up talk).  

 

Now it’s time to implement the plan, use the questions, and actually do some work.  I know, I know.  This is the hard part.  But I do believe there are ways to make it easier so that even we, the chronically ill people of the world, can make a noticeable difference in this direction.

Declutter around your bed first.

Last week we discussed the first five steps.  Today we discuss the remaining 10.

Six:  Declutter the area around your bed.  Or wherever you spend the most time (couch, desk, kitchen counter, whatever).  This is a good place to start.  We are not talking about the room itself.  We are talking about the specific area you inhabit most frequently and the two (or four) areas that abut to it (i.e. the tables, floor, and other things right beside your bed).  You can often do this in a relatively short period of time, maybe even without having to vacate your spot.  (However - don't get rid of things you really need right there - like meds and books, etc... That doesn't make life easier. )

Seven:  Try clearing out one shelf or drawer.   You can even just do half of the shelf or drawer.  Sit down while you work.  Try not to exceed more than 20-30 minutes on this project.  Then try to maintain it.  Every now and then do a quick tidy up of that area (2 minutes).  Trust me, this leads to bigger things. 

Getting To Know Yourself Beyond Illness - Part 4 - Entertainment

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 that are designed to help us get reacquainted with ourselves gradually.  (You can see part one – for the external basics and part 2 for your food preferences and abilities.)  

 

Keep in mind:

Periodically you may want to change your answers as you know yourself better or your tastes change.  That is a good thing.

Energy Economy - How To Declutter While Chronically Ill - Part 1

Energy Economy - How to Declutter While Chronically Ill - Part 1

The last Coping With Chronic Illness post was about the difference between de-cluttering, organizing, and simplifying and why the difference matters.  If you didn’t read that post you might want to.  

 

In the meantime we are going to be talking about clutter today.  To de-clutter means to get rid of excess stuff.  And for the purposes of this post we are thinking primarily of tangible stuff –things, possessions.  

So here are the first five suggestions.  You can do these even while bedridden.

Living With Chronic Illness - What De-Cluttering, Organizing, and Simplifying Really Mean

Coping With Chronic Illness - What De-Clutter, Organize, and Simplify Mean

I do not thrive in cluttered surroundings. 

I hate living with over stuffed closets, shelves, and rooms – they exude a feeling of chaos, of imminent attack, of sensory overload.  

They make everything more difficult and complex for me.  Getting dressed becomes an ordeal.   Thinking is harder.  

And I trip a lot – which is bad for someone who can barely walk. 

Coping With Chronic Illness - For Better Health - Laugh!

Coping With Chronic Illness - For Better Health - Laugh!

"Good-natured laughter does more than brighten a person’s day. According to some Japanese doctors, it also normalizes imbalances in the endocrine, nervous, and immune systems, stabilizes heartbeat and breathing, and can bring temporary relief to sufferers of rheumatism. 

Laughter stimulates sympathetic nerves, thereby boosting the blood flow to muscles and increasing brain activity.

When we laugh heartily, we also exercise our muscles. In a test cited in the IHT Asahi Shimbun newspaper, one laughing subject’s abdominal muscles “showed the same level of exertion as required by sit-ups.

Coping With Chronic Illness - Exercise Part 3 - How To Build Strength While Ill

There are different levels of illness.  Likewise, there are different levels of exercise.

There are high intensity activities – like jogging, swimming laps, sports, brisk walking, etc…  I don’t know your illness – but for me these are all out.

Then there are low intensity activities – like gardening, gentle walking, housework, water exercises.  Stretching is considered an exercise. 

And then there is truly low intensity activity – like walking from your room to your kitchen and back, or doing some range of movement exercises from your bed, or doing deep breathing exercises.  Or lifting your leg once.  These feel very intense when they are all you can do.

5 Ways To Maintane Independence While Chronically Ill

I know, I know – we don’t want to be independent.  We want to be inter-dependent.  No man is an island and all that.  I agree with that.

I’m not flying in the face of that wisdom when I am talking about this issue of independence.  But we are looking at things from the viewpoint of a person who is chronically ill.  This is a person who’s body betrays them daily.  This is a person who is forced against their will to rely on people all the time for basic necessities.  Their world, their dignity, and their sense of self are being assaulted.  

10 Ways To Make It Through The Summer Heat While Chronically Ill

10 Ways To Make It Through Summer

Where I live it gets extremely hot during the summer, and the summer lasts a looonnggg time.  

 

My illness causes organ failure.  And the first organ to go is the skin.  This means that my body can no longer regulate temperature the way it should.  Usually, if you get hot, the heat escapes through the skin.  But my skin no longer serves that function efficiently.  So the heat gets trapped under the skin and I can’t cool down. My core temperature rises.  And I can no longer function.   

Coping With Chronic Illness - Exercise Part 2 - 5 Myths And Facts About Exercise While Ill

5 Myths and Facts About Exercise and Chronic Illness

As I said in my last post (Coping With Chronic Illness -  Exercise Part 1 - Is It Good Or Bad?), we live in a society that thinks of exercise primarily as being a weight thing – or something that makes one more physically “uniform”.  But it is so much more than that!

For us, exercising to lose weight is not the main goal.  It may possibly come as a side benefit.  But for us, the main goal is to be able to participate in life.  To be able to move about our homes, maybe to work, go grocery shopping, play with our children, grandchildren, nieces or nephews, to enjoy nature or a social event.  We just want to have a semblance of a life, and to make a difference in the lives of others.  The more strength we lose, the less of life we can enjoy.

Energy Economy - How To Attend Important Events While Chronically Ill

I want to start off by saying that there are levels of illness which do not allow for attending any events – no matter how important they may be to you.  I have been that ill before.  I will likely get there again.  I am so sorry if you are currently in such a state. 

However, just a degree or two better and it is possible to attend at least part of an event if you follow these suggestions below.  Of course, some things will depend on the type of event you are attending. (I used these suggestions for my sisters baby shower, which was really important to me, and the only party I have been to in the past 2 years – and for a 2 day convention holding 1,000 people which was also very important to me.)

Coping With Chronic Illness - Exercise Part 1 - Is it Good or Bad?

Is Exercise Good Or Bad for the Chronically Ill?

If you have a chronic illness you know you should exercise, right?  You know it, I know it, we all
know it.  Healthy people should exercise.  Sick people should exercise.  Old people, young people.  Everyone should exercise.  It’s good for you.

And yet… it’s just not that simple.

The challenge

Sure exercise is beneficial – but how do you do it, where do you even start when you are:

Feeling completely and utterly horrible?

Too weak to stand, walk, or even sit up for any length of time?

5 Ways To Be A Good Friend To A Friend With A Chronic Illness

I have been coping with a chronic illness since I was 14 (that's nearly 16 years for me).  Sometimes people ask what they can do to be supportive.  I appreciate when a friend is thoughtful and shows that they care.  I thought I would share some of the ways my friends have helped me in the past 15 years of coping with my illness.

Coping With Chronic Illness - Caring Too Much What People Think, How To Overcome It

I can’t hide my illness anymore.  I can’t push to look normal for an hour or two anymore.  It doesn’t work.   (At least not right now.) 

So, this year I have had to confront my fear of people.  I’ve had to confront my own inner need to be accepted and loved by EVERYONE.  I’ve had to start realizing that I care too much what other people think.  (See part one of this series for adiscussion of why that keeps us sick.)

Coping With Chronic Illness - Caring Too Much What People Think Keeps You Sick

It is a natural human desire to fit in, to be respected, to be loved.  We naturally care what others think about us.  And that is not wrong.  But there comes a point when we care too much. 

For people with chronic illness just getting out of bed or out of the house very difficult.  We may worry about looking weird to others or worry about their opinion of us.

Have you ever had one of these thoughts / fears?

·         They will think I’m lazy

·         They will think I’m faking / malingering / they won’t believe me.

·         They will think I am looking for attention

·         They will think I am worthless

Coping With Chronic Illness - When I Have No Brain and No Body

Coping With Chronic Illness - When I have no brain or  body

Sometimes my whole body feels as though it has been run over by a semi truck.  Even my brain hurts terribly, like it has been used as a basketball and is swollen and bruised all over.  The slightest rollover of thought is excruciating.  I become very sensitive to light, touch, and sound.  This may last from a day to several weeks or months before I get relief.  

During these time periods I may be bed-ridden.  And I am physically, emotionally, and mentally in a very low state.  I can’t really function.  At the same time, I am not able to sleep all of the time.  So, I just need to be distracted by something completely undemanding, requiring no strain on my emotions or mental faculties.