Coping With A Chronic Illness

When you are diagnosed with a potentially chronic illness, it affects everyone in the house. It is not only you who is dealing with a chronic illness, sometimes family members are affected in ways we just don't see.

When my son was in kindergarten, I was assigned to work at a table with another mother cutting out shapes for an upcoming lesson. Noticing that I was using a cane to get around, the teacher quietly asked my son if his mother had been injured. I can still remember all these years later when my son proudly answered her loud and clear, "We have MS!"

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

The guilt-ridden side of me knew it wasn't fair to saddle my children and husband with a chronically ill wife and mother. Sometimes I felt that I was too dependent on them for things I probably could do myself like picking up something that I dropped on the floor or to get me a drink from the refrigerator. Delegating others even for a small task can make you stop doing those things for yourself.

With a chronic illness like Multiple Sclerosis, it is never going to go away. You will always have good days and bad days.

In order to not lose prospective and fall into "invalid" and "woe is me" cycles, I learned to re-invent who I am by recycling mental baggage so family and friends only see the best parts.

If you are a person with MS, there may come a time when you won't be able to continue working at your employment, or engage in your favorite activities, or even do simple chores around the house. Instead of giving in to defeat and feeling useless, this is the time 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. In most MS cases, there is no comparison because MS is different for everyone who has it, so you should not compare yourself to others who have Multiple Sclerosis or any chronic disease.

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

Since many chronic diseases cause pain and extreme fatigue, our perception of our abilities also change until we realize the days of being Superman or Superwoman are few and far between. Each day is different from the day before. You might have been able to clean the entire house in four hours before your illness developed, but at this point in time, it may take all week to complete those same chores.

And, that is OK.

As MS'ers, you are not the same person you used to be; you need to do things differently and it has to be in your own good time. If there comes a time when you can't do them, put aside price and ask for help from other people. Many times, people are just glad to 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 especially use this technique with people's names. I can remember Mary McDonald's name by associating her with the famous fast food restaurant.

Of course you can go all 'teckie' and use a Smartphone, IPad, or 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 by using a date book, I actually started to look ahead to see my upcoming activities or appointments which sparked renewed interest in getting up, getting dressed, and leaving the house.

If I had a note that someone was coming to visit in a week, it meant I had a week to get my act together. Little by little each day, I push myself to maintain body conditioning for mobility and practice to attain a little 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 will keep you sharp and alert, especially if you live in or near a major city.

On the internet, I have several favorite websites that I visit daily. Often these sites have links to other websites, but be careful because you can end up far afield. lol

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

Some websites still don't have a "follow" button and many sites don't bring you back to where you left off on your last visit. If it has been a few days since I visited, I struggle to find the thread because it is buried under new posts and more comments.

Bookmarking the site 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 act 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 following along on 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 when movement is difficult, 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, or going to church a couple of times per month, if that is your preference.

Your Attitude about your illness can either keep you in bed, or push you enough to get up, get dressed, and join life again.

"But I'm sick. I physically can't do it!"

If you have convinced yourself that you cannot do a certain function because you are "sick," then you are probably right. The mind is very convincing that way.

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. Then do a bit more each day.

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

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

This will only make you be more challenging in every aspect - increased depression, suicidal thoughts, more fatigue, dietary neglect, skin breakdown, organ failure, mental acuity deficits, and other issues.

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

To start rehabilitating yourself, you need to become your own advocate and champion yourself so others will support your efforts.

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

You have a choice to follow his orders, or get a second or a third or a fourth opinion. Go to as many consults as it takes until you are satisfied with the answers, that you have the right diagnosis and the right treatment plan. Remember: No matter what the doctor's advice is, how grueling the treatment plan, or how far out the solutions are: The final decision is always yours.

On the flip side of the coin, if you push yourself too much, it can cause a self-induced flare up. To keep on top of this, you need to pay close attention to your symptoms and any subtle changes in them.

• eat healthy,
• stay hydrated,
• do moderate exercise but stay within your physical limits, and
• make sure you take frequent rest periods over the course of 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.

Yours may not be the life that you used to live, but you are here, still alive, and still living.

With some effort and determination, you will rejoin life again, and in time, you will learn how to live with your disease.

Life is not over, until God says it is over.