Coping With A Chronic Illness

When someone becomes chronically ill, it is like everyone in the house has taken on that persona. It is not only you who is dealing with a chronic illness or an Autoimmune Disease. Sometimes family members are affected in ways we just don't see.

When my son was in kindergarten, I was sitting at a table with another mother cutting out shapes for an upcoming lesson. Seeing that I was using a cane to get around, his teacher quietly asked him what was wrong with his mother. I can remember my son answering her loud and clear, "We have MS!"

I knew he had no idea what MS really was, he only knew he had the answer to the teacher's question. It hit home for me then, that even though I was the one who had Multiple Sclerosis, my family was, in their own way, also carrying the weight of my disease.

Sure, it wasn't fair to my children or spouse to be saddled with a chronically ill wife and mother. But what to do about it? It wasn't like MS was going to go away.

But maybe I was projecting too much dependence on them for things I probably could do myself. Sometimes just the presence of a child prompts to ask him to pick something up from the floor, get something from the refrigerator or do a small task can make you stop doing those things for yourself.

With a chronic illness like Multiple Sclerosis, you have good days and bad days. One thing is for sure and that is that my Multiple Sclerosis is never going to go away.

In order to not lose prospective and fall into the "invalid" and "woe is me" cycles, I learned that you have to re-invent who you are, recycle what is left of you so that you still have the best parts to offer your family and friends.

While you may not be able to continue working at a job, do your favorite activities or even do chores around the house, you have to pick up the pieces and find other things that interest you.

It is easy to tell you not to compare your life as it is now with what it used to be. There is no comparison because another equation has now been figured into your life. By the same token, you should not compare yourself to others who have the same disease or who are chronically ill.

Their disease is not your disease. Our diseases affect each and every one of us differently.

Since many of our diseases do cause extreme fatigue and pain, and we can no longer be Superman or Super Woman, we have to pace ourselves each and every day, taking rest breaks often to prevent self-induced flares.

For example, we might have been able to clean the entire house in four hours before our illnesses developed, but now it may now take us all week to finish all of the chores.

And, that is OK.

We are not the same person we use to be, therefore we need to do things differently and in our own timetable. If we can't do them, we need to ask help from other people. Many times, they are glad to just be able to help out.

So that my days don't run into one another and so that I can at least be aware of the date on the calendar, I keep a pocket date book.

Years ago when my memory was very badly affected after a bad flare up, I used a wire flip pad of paper at work to jot down things that I needed to do to complete a task so I wouldn't go off on another task and leave loose ends.

For example, there were certain notes that I wanted to write in a patient's chart after leaving a treatment room, before I would go into another treatment room to see another patient. I started doing this because when I went to write chart notes, the patients started to blend together and I couldn't separate what care I had given to which one, or what answers were given to my questions by which patient.

That little flip pad of paper graduated to a small 5 x 7 memo book, and eventually to a program on my cellphone for notes. When I stopped working, I changed to a pocket calendar that has nice sized blocks on each day, big enough to put a couple of notes/appointments on each day. That goes with me everywhere because if I had an appointment last week with the neurologist, I can't tell you what day that was without referring to the date book.

It is sort of a double check system for me. I might guess at the day, but will verify it with the date book.

Another suggestion is to remember things by using association. I use this technique with people's names all the time. I can remember Mary McDonald's name by associating her with the fast food restaurant. I use this with names, places, and dates.

Of course you can go all teckie and use a Smartphone, Ipad, and any number of gadgets, but not everyone has access to them.

I think the Post It Note is the second best invention ever!

In my opinion, the first best invention is the Internet!

I found that with using a date book, I actually started to look ahead to see what activities or appointments were coming up. It sparked renewed interest in getting up and out of the house.

If I had a note that someone was coming to visit us in a week, it gave me a week to get my act together. Little by little each day, I push myself to maintain body conditioning for mobility and "passably" sharper brain function.

In order to be able to carry conversations about current events, I make sure I watch the daily news on TV at least twice a day and read news blurbs on the opening email screen. I make it a point to read at least two online newspapers several times per week.

Believe it or not, that keeps you sharp and alert. Especially if you live in or just outside of a major city.

On the internet, I have several favorite websites that I visit daily. Often these sites have links to other sites and you can end up far from home if you keep clicking them. lol

If I make a note/comment, after I bookmark the site, I also jot it down so I can remember which website I wrote on in order to keep track of the threads. Sometimes I don't get back online the next day and my comment gets buried in the site's newest posts.

Some websites still don't have a "follow" button and many don't reload to where you left off on your last visit. If it has been a few days since I visited, the website now has new data and I have to locate the thread. Sometimes it is easier said than done especially when some website owners delete posts; the comments get deleted with the post. Bookmarking to favorites is the best solution.

Some days I wake up and the date book is the last thing I want to think about.

Fatigue is an ever present malady for many of us with Autoimmune Diseases. It is not your normal kind of tired -- it is past exhaustion sometimes.

So, I never know how I am going to feel tomorrow, the day after or even the day after that. My husband will ask on Thursday if I want to go to the flea market on Saturday, and for over 30 years my answer has been the same. "I don't know; we'll see when Saturday gets here."

You just don't know how you are going to feel.

Don't get me wrong, I do make plans to do things (out with friends, etc.), but spur of the moment things work best for me than planned events. Planning events seems to be shooting myself in the foot - I know I want to go, have to go, but by the time the day gets here, I'm exhausted.

Going out of the house seems to be the biggest obstacle for many of us. The actual chore of getting dressed to go somewhere can be daunting.

To combat that, in good weather, I try to make it a habit to go for a walk in the neighborhood, even if it is just for a block or two and sometimes for as long as 30 minutes. I do have to rely on someone to be with me for the first few weeks after I've been dormant for a while, but after that, I am able to go out and walk alone. I prefer to have someone with me, but I can do it alone. In inclement weather, I walk up and down the steps in the house a few times, with rest stops. I have even tried a few You Tube Exercise videos. It wasn't half bad!

When I am not able to go out and about, I keep in touch with people by phone and internet. It helps with depression, keeps me sane, mentally agile, and maintains my social skills. In those months, I delegate a lot - my sons and husband go to the store, get milk, do short order grocery shopping, do the bank deposits and most of the other things that I used to be able to do when I was in better physical shape. The winters are taking its toll on me here, so the Northeast winters are my down time each year.

Even though it looks like dependency, when the chips are down, we mustn't be afraid to delegate household chores, etc. so that we can preserve our energy for when we have something important to do - like doctor appointments, physical therapy sessions, and going to church a couple of times per month, if that is your habit.

Our Attitude toward our illnesses can either keep us in bed, or help us get up and join life again.

If you think that you cannot do something because you are "sick", then you probably can't.

But if you think that you can, your Attitude will get you out of bed, and start re-living again.

If you have depression, (and I don't know too many chronically ill people who don't have some degree of depression), then you need to consider ways to treat it, whether that is with medication, interacting with people - face to face or on internet, keeping (or getting) yourself busy so that it doesn't take over your life to the point of isolation from the outside world.

It is imperative that anyone with an Autoimmune Disease treat their depression so it doesn't become a runaway train down a deep dark tunnel.

Idle minds will fall into depression, so try to do things that stimulate your mind. If you are taking an antidepressant, and it is not working, then ask your doctor to change the medication or change your dosage.

Sometimes, the key to depression is in the treatment of it.

Sometimes, the key is in our personal living space (environment - where and who we live with).

Sometimes, it is the disorders and diseases we are afflicted with, the medications we take for them, and/or the side effects.

It is so important for you to research all your medications, checking for any potential side effects of depression. Besides fatigue, weight gain and other medication side effects, depression can make or break the best medical treatment plan.

If you are spending your days in bed, push yourself to get up and move about and do a bit more each day.

No doctor worth his salt will order you to be on bed rest forever. He/she might have said rest when you are overly fatigued or in a flare up, but he/she did NOT tell you to stay in bed forever.

So if you are still in bed mostly every day, that means it is by your own doing.

This will only make you be more challenged in every aspect - depression, suicidal thoughts, more fatigue, dietary neglect, skin breakdown, organ failure, mental acuity deficits, and other issues. You can't stay in bed and wait to die.

Waiting to die is the whammy of all whammys....just because you want it, it is a sure bet that God will not grant it.

To get started rehabilitating yourself, you need to become your own patient advocate.

YOU are a part of your Medical Team ... by paying a doctor for his hopefully helpful advice, he now works for you.

The bottom line is, you have the choice to follow his orders, or get a second or third or fourth opinion until you are satisfied with the answers, your treatment plan and have the right diagnosis. The final decision is always yours.

On the flip side of the coin, if you push yourself too much, like trying to be Super Man or Super Woman, it will cause a self-induced flare up, so pay close attention to your symptoms.

• Eat healthy,
• stay hydrated,
• moderate exercise within your physical limits, and
• make sure you get enough rest periods spread out over your day.

You CAN do this if you put your mind and body to it. The old adage is true: where there is a will, there is a way.

You have to start believing in yourself, push yourself to get up and move about.

It may not be the life you use to live, but it is still living.

With some effort and determination, you can rejoin life again, and learn how to live with your disease. Life is not over, until God says it is over.

© 2009 Anne DiGeorge

Updated 9/23/2013 by Fiona Powers, a member of awordlover's team

Updated 2/2/2014 by Rachael O'Halloran to replace pixelated copyscape logos, provide photo attribution and correct format issues.