Posted in Chronic illnesses, Fibromyaloga, Life in general, rheumatoid arthritis, Tough Choices

Being chronically ill is hard work

shipI recently prepared an article about how chronic illness has changed me.  I have written articles on various topics related to chronic illness including its role in the workplace, its effect on depression, exercise, sleep, dealing with flare-ups and relationships. I have even written about its effects on intimacy.  While many of these topics have been hard, especially because of my own personal experience, I never imagined that writing about how chronic illness has changed me could be even harder. I found myself looking back at the person I was prior to rheumatoid arthritis and fibromyalgia and what I realized was that, I no longer knew that person.

Having to think about how much I have changed since chronic illness became a part of my life, I realize that being sick is hard work. Sometimes, I want to just jump on a podium to let the entire world know what it is like.  Not only is it hard work, it is frustrating to live a life with constant pain, fatigue and just the not feeling good sensation.

I am doing the best I can

So yes, living with two chronic illness is hard work and I am doing the best that I can trying to maintain a balance between my life and the rest of the world.  Healthy people have no clue what we go through. I am not sure what people see when they see me. You know the old saying, “But you don’t even look sick?”  Either I am good at hiding it or I really make coping look easy.

I wouldn’t wish what I go through on a daily basis on my worst enemy.  Although sometimes, I wish that people could walk in my shoes so that they could truly understand what I endure on a daily basis.  Or perhaps someone could borrow my pain, sickness and fatigue for one day so I can feel what being healthy is like since it is something I barely remember.

When I am thinking rationally about living with chronic illness, I realize it is my burden to bear.  Every single day with RA and fibro is trying on my body and taxing on my soul. I try to push aside what I am feeling so that I can function like a normal human being but no matter what I do, the pain, sick and fatigue manage to catch up with me. So yes, I am managing my health but it is hard work.

Sometimes, it is hard to keep going. It is no wonder I became depressed.  When you are sick all the time, it is easy to lose sight of the big picture.  It is hard to figure out what your abilities are and you lose confidence.  Sometimes, it is in the day to day stuff and other times, you are forced to look back at the pile of missed opportunities. Missed opportunities are big and small – like missing your child’s match because you are too sick and tired to attend or giving up your dream to attend law school because it would be too much with all you already have on your plate.

Every day is a battle with fatigue and pain.  You struggle with expectations from others – family, friends, employers and coworkers- but mostly, you struggle with the expectations you have for yourself.  How come something as simple as keeping your small home clean is difficult when someone else – your own mother- has a bigger space they manage to keep clean? I think my biggest struggle is that I am still trying to be the person I was before I got sick and it is something that is difficult to do. There is no way I can ever be that person again.

Yes, it is hard work

There is no question that being chronically ill is one the hardest jobs you will ever have.  Illness takes a great deal of time and energy from you and even out of your day. Meanwhile, you still have to tolerate it to function in a healthy world.

Incurable, invisible and even impossible – that is how I describe my life with RA and fibro. Living life with chronic illness also feels like a pretty demanding job.  Every day brings with it new challenges and life doesn’t stop because I woke up with achy and stiff joints.  Further, no two days are the same so you can’t even plan or prepare for the bad days.

Being sick has been my second job for the past five years.  It is also the baggage that I carry around with me everywhere I go.  It is a 24 hour, seven day a week, 365 days a year job.

But I find ways to cope and to better manage my life with a chronic illness.  Every single day is a determined and strenuous effort on my part.  Planning depends solely on the amount of energy I have and sometimes, even my best laid plans aren’t enough.

The truth is that I have good days, bad days, and downright ugly ones. There are days where my entire body is inflamed, I feel sick to my stomach and I just want to sleep. Sometimes, the sleep comes and sometimes, it doesn’t. Other days, the pain leaves me and I have what I call my good days.  It takes a lot of effort on my part to have good days.  I have to be careful what I eat, I cannot overdo things, and I have to keep moving.  The pain is never completely gone but when it is at a minimal, I know that it will be back when I least expect it.

I am managing

If I am managing well, it is due to great effort on my part. Having good days is a hard work and so is dealing with the bad ones.   I have learned that managing life with RA and fibro is like trying to steer a battered ship in uncharted waters.  Every storm changes my direction and leaves me confused and lost and it takes a lot of effort to get back on course.

Life with RA and fibro is difficult but life is still good.  I am coping despite the struggles that both diseases bring to my life. I have learned that even on my worst day, I am capable of greatness. After all, it takes a lot of a courage and determination to continue to steer a battered boat during a terrible storm.  I am still going and as soon as the storm clears, I can assess my situation. It is too difficult to stop and assess things during a storm. All I can do is plan for the worst and pray for the best.


14 thoughts on “Being chronically ill is hard work

  1. Well said. Have had RA since I was 25 and am now 63. Have been married for 40 years but the RA has made it very difficult on the relationship and all aspects of life in general. Since you had a mention of intimacy in your article, Im a male and I gave up on intimacy about 11 years ago, even though my drive is still high. Funny how thats one area that still works normally on both sexes in a lot of instances. The perception of your own body image does change for both you and your partner, and from my experience if your partner is not willing or unable to adapt to these changes you will drift apart as lovers and become just good friends as we have. However that being said, its not the type of relationship.
    Id also like to give you a tip to stave off some of the depression that comes with this disease. I found over the years that looking back to the person I was before RA, especially photos and such, just increases my anxiety and makes me very sad, so I try to avoid that scenario, but its very hard to not look back at who you used to be before this devestating hit. Keep fighting.


  2. I am having one of those times where l am always tired. Tired of the pain. Tired of the grind. I totally understand your message. Just this morning l cried into my husband’s nook and asked him whether or not it would ever end. Shan xo

  3. You pretty much said it all! No one who doesn’t deal with a chronic illness on a daily basis can truly understand the effort it takes to get through the day…we just keep doing the best we can each and every day…and enjoy those good days when they come around!

  4. WOW, it’s like you are writing my thoughts. :O I would
    only change RA with TAK (Takayasu) and what you
    describe is my experiences. You describe it so well, I am
    impressed. Your attitude is great! I understand the ups-
    and-downs very well, but you too have found gratitude
    and have had your eyes opened and is seeing the
    beautiful things surrounding us. It is hard to explain to
    people not living in pain or having their life changed this
    much. Thank you for sharing. Hugs from Norway

  5. Hello
    My Name is Jim, I really thought my wife ( Wendy ) would not be alive today and yet she is.
    We had a journey that was like no ones I have every heard of. It spanned many years.
    The education and lessons were immense and it took us all over the world in search of a
    cure for her. I wrote it out finally after the journey came to an end so it was available for other to
    read. If you have had a similar journey I would really like to hear about it. We have not met anybody so far. Here is where you can read about it. It is on my website
    I would really like to hear from other who have been here.
    James Reese

  6. Hi,
    I’m not chronically ill, at least not yet. I had a total knee replacement nine weeks ago, can hardly get out of bed, and expect to be laid up for several more months, even a year. Living alone and outside Prague in the Czech Republic, I can’t travel the distance into the city by myself by public transportation and, of course, since the operated leg was my “brake leg”, I can’t drive. I can’t even remember what the inside of a store or supermarket looks like. Ask a neighbor to go to the store for me to do shopping (he has full use of my car as long as I can’t drive) for body cream and he brings me back depilatory cream. Things are just, well, different here, from what they are in the States.
    My “salvation” is my three frisky fuzzy felines. I’m an old woman (70) and hope to be out of this before I die. Even though I don’t see any change in my condition, I have to hope that in another year or so things will be better. Believe me, this operation is far from all it’s cracked up to be, with the success rate being only about 50 percent. I’ve exhausted all the friends I have, and no one wants to hear from me. I’m trying hard to make the transition from loneliness to solitude. Thank God for my cats, who sleep on the pillow, on my face, wherever they can. Unfortunately it’s impossible to carry on an intelligent conversation with any of them about Buddhism or anything else, nor can I send them to the local post office to sign for registered letters or pick up packages. Otherwise, they’re better company than most of the friends who deserted me were, and so undemanding – only a bowl of food and and fresh water every day, but loud purring in my ear. The better I get to know people, the more I like my cats. Cynical?

  7. I became quite emotional reading this as this is and has been me for the last 15yrs, my chronic illness is Emphysema, my lung capacity is now 29% and I struggle daily, but I never sink. I came across your blog because I Googled ‘being ill has changed me’, so if it is okay with you, I would like to copy, adapt and add this to my story to share with others. Stay strong Lana.. 🙂

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