3 Tips for Redefining Normal with Chronic Illness

 

3 Tips for Redefining Normal with Chronic Illness

What do you do when life hands you a life-altering diagnosis?

You redefine everything you know.

You have to if you want to improve your physical health and emotional well-being. Along the way to your new normal, you will find out how to make new choices and learn from past ones. Most importantly, you will come out stronger and more in control of your medical outcome than you ever thought possible.

Life changes

Normal isn’t going to return even if you find a successful treatment plan and even if your pain levels are managed. Normal stopped when you weren’t looking.

You have been through a lot pain-wise, diagnosis-wise, and life-wise. The people you expected to be there for you weren’t. You had to change careers or life plans, or you gave up your favorite activities. Life has changed and nothing remains the same, and your life will continue to change.

Are you prepared to redefine normal if your health worsens or if a major health event happens?

Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/2462-3-tips-for-redefining-normal-with-chronic-illness#toU2ScB26El80hll.99

When It Feels Like You Have Done It All

 

Learning to stay hopeful as you experience frustration and exhaustion from living with chronic illness.

When It Feels Like You Have Done It All
 
 
Living with a chronic illness, such as fibromyalgia, arthritis or lupus, can be very frustrating. There is no one size fits all solution. Even when patients are following doctor’s orders, they can still struggle to manage their disease symptoms. And when treatments aren’t working, patients are left to wonder if they should just give up.

At the End of Your Rope

I suspect that many of you have reached a point where it feels as if you are tired, frustrated and at the end of your rope because the things you are doing to feel better just aren’t enough.

Here is a typical comment I hear:

“I am in my 30s (or 40s or 50s), overweight, and living with depression, anxiety and worsening chronic illness symptoms despite proper diet, exercise and medication. I have tried everything under the sun to get my symptoms under control but I have had no luck. I am tired of not seeing results, getting my hopes up and going to all of the doctor’s appointments. What do you do when you feel like you have done it all to no avail?”

Like so many, I have left no stone unturned in moving towards a somewhat normal life where chronic illness does not dictate my actions. There have been times where I, too, have wanted to give up trying to figure out how to get well. And there have been times where I have flat out given up—for a little while, at least.

It’s Frustrating

Most of us living with chronic illness do not have medical degrees. But yet, we are expected to research our own diseases and be our own advocates, therapists, personal trainers, nutritionists and so much more. We are trying to do this all while we are sick and wishing we could just curl up under our covers and never leave our beds.
Chronic illness is a long and difficult journey of trying to find answers and working toward feeling better. I don’t know what ordinary is anymore but luckily, I have found a new type of normal that works for me. It’s about getting as close to feeling as I did before I got sick. It is about making it through the day without triggering my symptoms and increasing my fatigue. And it’s about trying to manage my anxiety and my depression symptoms, as they arise. I try to enjoy the days when my brain isn’t foggy.

It has been a frustrating experience, at times, and like so many, I have tried everything to get results. I have read hundreds of books, met with numerous doctors, visited thousands of websites, and tried various therapies from medicines to herbs and supplements and to alternative therapies, such as yoga, meditation and physical therapy. I haven’t always gotten the desired results, adding to my frustration

Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/1162-when-it-feels-like-you-have-done-it-all#FXMsuWCrzZ0fmiK6.99

 

 

9 Valuable Lessons Gained From Chronic Illness

9 Valuable Lessons Gained From Chronic Illness

(From August 20, 2014 )

Going into my sixth year living with a chronic illness, I consider myself experienced in meeting the challenges imposed by chronic illness. The term “chronic illness” doesn’t bother me and I no longer see my illnesses as a burden. Rather, I view them as a determinant of who I can become. Further, how I choose to cope determines the lessons I gain and how those lessons shape my very existence.

Here are nine valuable lessons that have shaped my life over the last six years.

Enjoy Life Even When It Hurts

There have been many occasions where I just didn’t feel motivated to follow through on plans with friends and family. But when I forced myself to get out and push past the pain, I was glad I got to enjoy that time and to make those memories. And yes, it is true that we should take care of ourselves — and there will be plenty of plans that do get cancelled — but we shouldn’t make canceling plans the norm. If you are going to be in pain, you might as well do the things you enjoy to help you forget. Trust me, your mind, body and soul will thank you.

I am Not Lazy

Getting the rest I need doesn’t make me lazy. If anything, it is a reminder that I am chronically ill. I deal with fogginess, fatigue, and pain daily and these symptoms force me to rest and conserve my energy. There have been times where I have pushed myself for fear of being called lazy and sometimes, I worry that if do less or rest more, I might actually be lazy. I have learned that my illnesses cause physical limitations and I can only give what I can give and nothing more. That doesn’t mean I am lazy. If anything, it means I do the best I can and often, it feels like I am giving more than others do.

Read more at http://www.arthritisconnect.com/arthritis-articles/435-9-valuable-lessons-gained-from-chronic-illness#0MJY33AroZ0kWzYX.97

Toxic Relationships and Chronic Illness

Living with chronic illness means minimizing the things in your life that make your symptoms worse.  Sometimes, it might mean eliminating people, especially if they stand in the way your happiness.  Other times, it means recognizing the ways in which you can minimize the effect of toxic people on your health and your life.

Generally speaking, a person’s actions are toxic to your health if their behavior makes you feel bad and/or sick on a regular basis.  Patterns of toxic behavior that are bad for your health include:

  • Intimidating you by yelling or being violent in any manner;
  • Consistently putting you down and sending a message that he or she is better than you.
  • Regularly telling you what he or she feels is wrong about you.
  • Gossiping about you behind your back.
  • Spending too much time complaining about others, his or her life, or you.
  • Attempting to take advantage of your kindness.
  • Making you feel guilty if you don’t do what he or she wants or expects.
  • Making you prove yourself often. Healthy relationships are give and take. But if you are doing all the giving, you jeopardize your health and happiness. Learn to put your foot down and don’t excuse toxic behavior.   You deserve to surround yourself with people who love and accept you and who make your life easier by simply being in it.
  • How do you preserve your health after you have identified people who are toxic to your health? The answer depends on the relationship that person plays in your life. In some cases, it is not possible to remove these people from your life but you can find ways to deal with these people without hurting your health.

Read more about managing toxic relationships at: http://www.arthritisconnect.com/arthritis-articles/594-recognizing-and-dealing-with-toxic-people-in-your-life#itrQUHlxErSmwXhy.97 

Your Medical Health Team with Chronic Illness

If you have a chronic health condition, you will need to work with your doctor to put together a team of support. It can be confusing and overwhelming to figure out what it takes to manage your chronic illness so teamwork is important if your disease or your symptoms worsen and to keep your disease managed.

Members of your medical health team could include various specialists, nurses, a psychiatrist or other mental health therapist, a physical therapist, an occupational therapist, a social worker, a nutritionist or dietitian, and your primary care doctor.  Each one plays a role in your healthcare, including with medical treatment, emotional health, rehabilitation to take care of yourself and do daily talks, practical support with insurance and managing financial care, diet, and strategies to stay as healthy as possible.

It is important to speak up about any concerns you have about your health and specific condition with your doctor or specialist.  Make sure your doctor is someone you are comfortable with and who respects and listens to you. Take into consideration your travel time, insurance coverage and other factors that affect office visits.

Once you have found the right person to treat you, be prepared to communicate with about the concerns you have and to follow advice he or she gives about your specific condition.  Make sure you are prepared for your appointments by tracking how you have been feeling and keeping an updated list of medications and contact information for other doctors you see.  Ask your doctor about your biggest concerns and speak up, even about issues that are hard to discuss, such as sexual changes, moods and bowel trouble.  Moreover, be concise and clear and don’t be afraid to ask for more information or clarification if you don’t understand something.  Most importantly, let your doctor know if you are feeling hopeless or helpless, are afraid of treatments, have had bad experiences with other providers or are confused by different messages from other members of your health care team.

If you are ever feeling overwhelmed, remember to reach out to a member of your health team.  You are not required to go at it alone and these people are available to support you so don’t hesitate to seek them out.

Find out more about the doctor-patient relationship at: http://www.arthritisconnect.com/arthritis-articles/299-the-all-important-relationship-with-your-doctor-8-tips-to-improve-your-medical-care#4DlLIpeAbV9A6IyM.97

I Am Not Superwoman

Nope. I am not.  I have no superpowers.  No super speed or strength and I sure I can’t fly.  Therefore, I am not superhuman. I am not Superwoman but yet, it seems like I am determined to be her.

I need to remember that I am only human and I am not capable of doing it all.  Maybe, once I did, but not anymore. I can’t spend a long day at work, come home and cook dinner, and then clean.  I can’t spend a Saturday shopping, cleaning, doing laundry and everything else in between.  Once upon a time, I could but I no longer can.

Why do I keep trying to convince myself I can? Why do I keep doing it? Why do I think I can.

BECAUSE I DID. I USED TO.

And that sticks with me. I used to be able to carry 3 or 4 heavy cloth shopping bags and not even think about how heavy they were. Now, I am lucky I can carry one. But I used to carry 3 or 4! So, if I could do it before, why can’t I do it anymore?

THAT WAS BEFORE CHRONIC ILLNESS AND PAIN DOMINATED MY LIFE.

I put on this front and I continue to pull through, because I have to, not because I want to.  I didn’t talk about cancer when I was scared that I had it. I put on a brave face and didn’t let anyone see how much I was falling apart inside.  Even preparing for my surgery and through my recovery, I didn’t ask for help because I wouldn’t have in the past. I also didn’t ask because there are things I have learned I have to do alone.  I also didn’t want to talk about cancer. I didn’t want to discuss cancer.  I didn’t want to think about cancer. The words “pre-cancer cells” were all I could take.

A minor surgery and some benign test results later, I am still trying to convince myself I have got it all covered. I have got it all. Because I always do – whether I want to and because I have to. And there is a chance this might come back and I got to put on my fake Superwoman strength and try to be normal even when normal and I are worlds apart. And if you look from the outside, all you see is normal.  You wouldn’t believe that I am chronically ill.  BUT YOU’D BE WRONG.

Why do I show those around me that I am more capable than I really am or that I once was? And how do I do it without falling apart?  I am learning that I have to prioritize what is important to me and let the cards fall as they may. I have to pick and choose what I need to do and who I should I put first.  I have angered a lot of people in the process and I have stopped asking for help from these people.  Because sometimes NO, I CAN’T just isn’t enough for these people.

I know that it doesn’t matter what I planned, sometimes I have to cancel plans.  But when I follow through, sometimes the happy me doesn’t look like the me that is in pain and not feeling so well.  I say I am fine, smile and keep going because I like to believe that I am still that Superwoman I once was.

There is another side to me – the side you don’t see – the one behind closed doors. It is probably the side most people are not interested in.  The me that sometimes struggles to get out of my car due to joint stiffness and pain because I have sat too long.  The me who hurts too much to go for a long walk.  The me who is too drained to do something as simple as vacuum.   Superwoman? Yes, that is me!

When my world is falling apart, I try to convince myself that tomorrow will be better. I will be okay and I put on my happy face.  Because you don’t get to see the side of me that is a mess lying on the sofa, not able to move, the anger and tears because of the level of pain I am in, and frustration because I can’t get my super powers to work.  You don’t get to see that side. And maybe it is all for the best.

I will keep going and maybe my superhuman powers will make their way back home to me once again.  But for today, I got this and even if I don’t, I will pretend I do. I might not be Superwoman anymore but I GOT THIS!

Nine Things Chronically Ill People Want Loved Ones to Know

There are many things a chronically ill person wants their loved ones to know but are hesitant to share.

Nine Things Chronically Ill People Want Loved Ones to Know

 Chronic illnesses are debilitating and strike people of all ages and sexes. Loved ones are confused on how to offer help and support while chronically ill patients struggle with sharing feelings. There are many things a chronically ill person wants their loved ones to know but are hesitant to share.

Here are nine things chronically ill people want their loved ones to know:

1. Our grief is ongoing

Angie, age 17: “I wish my parents understood that my grief over my health is reoccurring. It is gone sometimes, but it always returns.”

Before getting sick, you don’t know the ongoing struggles that force you to continually grieve. And there is a lot to grieve over. You are not as productive as you once were. You have lost friends, the ability to take part in your favorite activities and your independence. Grief comes in waves and sometimes, out of the blue. One minute, you are accepting the changes and challenges that chronic illness brings to your life, and the next, you are overcome with sadness or anger.

Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/1024-nine-things-chronically-ill-people-want-loved-ones-to-know#HSua2bCQ7VDqAlXq.99

9 Ways to Laugh and Be Joyful Despite Chronic Illness

Do you know that the best medicine for chronic illness is laughter?

9 Ways to Laugh and Be Joyful Despite Chronic Illness

A giggle a day can help you to cope and even reduce your pain because it promotes relaxation. Further, laughter releases feel-good endorphins that people living with pain really need.

Recent research has found that laughter holds great benefits for people who live with pain and illness. But, as you know, living with illness and pain isn’t fun and finding reasons to laugh can be difficult.

Here are nine ways to laugh and be joyful despite chronic illness.

  1. Don’t take life too seriously. Chronic illness can bring with it challenges that can get the better of you. When you start stressing about your challenges, it is hard to find solutions. If you focus on not taking life and challenges too seriously by laughing rather than stressing, you give yourself a confidence boost that can help you overcome hurdles. Smile, laugh and don’t be too critical of yourself.
  2. Find humor during tough times. There will always be situations that are hard and are no laughing matter. But most situations are only as complex as you allow them to be. So, the next time you find your stress getting the best of you, allow yourself to laugh over the things you have no control over. By doing so, you give yourself the opportunity to see humor and blessings all around you.

Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/929-9-ways-to-laugh-and-be-joyful-despite-chronic#pL44eILMDG9DvYKj.99

9 Valuable Lessons Gained From Chronic Illness

Nine valuable lessons that have shaped my life

9 Valuable Lessons Gained From Chronic Illness

Going into my sixth year living with a chronic illness, I consider myself experienced in meeting the challenges imposed by chronic illness. The term “chronic illness” doesn’t bother me and I no longer see my illnesses as a burden. Rather, I view them as a determinant of who I can become. Further, how I choose to cope determines the lessons I gain and how those lessons shape my very existence.

Here are nine valuable lessons that have shaped my life over the last six years.

Enjoy Life Even When It Hurts

There have been many occasions where I just didn’t feel motivated to follow through on plans with friends and family. But when I forced myself to get out and push past the pain, I was glad I got to enjoy that time and to make those memories. And yes, it is true that we should take care of ourselves — and there will be plenty of plans that do get cancelled — but we shouldn’t make canceling plans the norm. If you are going to be in pain, you might as well do the things you enjoy to help you forget. Trust me, your mind, body and soul will thank you.

I am Not Lazy

Getting the rest I need doesn’t make me lazy. If anything, it is a reminder that I am chronically ill. I deal with fogginess, fatigue, and pain daily and these symptoms force me to rest and conserve my energy. There have been times where I have pushed myself for fear of being called lazy and sometimes, I worry that if do less or rest more, I might actually be lazy. I have learned that my illnesses cause physical limitations and I can only give what I can give and nothing more. That doesn’t mean I am lazy. If anything, it means I do the best I can and often, it feels like I am giving more than others do.

Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/1069-9-valuable-lessons-gained-from-chronic-illness#j8zFS1j0VgyXoYRd.99

Single Parenting with Chronic Illness – I Don’t Feel Like an Expert

I am writing an article about chronic illness and single parenting.  You would think I am the expert on this particular topic, but as I stare at the page in front of me with few words on it, I am not so sure.

I have written on hundreds from topics from coping with illness, illness on the job, including about legal rights, emotions of illness and so much more, and even parenting with illness.   My 100 plus articles would tell you that my nearly eight years living with two chronic illnesses and writing about it successfully that I am, in fact, an expert on chronic illness.  But why is this particular topic nagging at me and I am struggling to put the words to paper?

Perhaps, it is because I feel like I am muddling along day-to-day trying to be the parent my children need and deserve.  I am not an expert at parenting or single parenting.  I am just a parent – like every single other parent out there.  I am struggling with the same struggles and I have most of the same worries. I am trying to make ends meet.  I am wondering if I am offering enough love and kindness and I am trying really hard NOT to screw them up.

The only thing that sets me apart from single parents without chronic illness is that I fear that my illness interfere with the parent I want to be.  I struggle between the parent I feel I should be and the parent I have to offer. I feel guilty and I have ill-conceived notions about what good parenting looks like.  I hate that I am not physically strong enough to be the parent I “think” they need and deserve.  Or that sometimes, my emotions get in the way. That I am too harsh because I am hurting physically or that I give in too easily because I am too sick and tired to handle something in the “right” way or what I think is the right way.

Or maybe, I am not screwing this up at all. Maybe, I am getting it right but sometimes, being sick makes it harder to see that.

I have a normal teenager.  He is mouthy, rude and sometimes, a smartass but that is all he is.  He is a teenager who never gets in trouble and respects everyone he comes across. He treats people with kindness even when they don’t deserve it. He sees goodness when his own mother can’t see it.  He teaches me to be a kinder person in a world that is harsh.

I have a seven year old who is smart beyond his years.  I see in him the person that I wish I was through his eyes. He thinks I hang the moon.  He sees me as someone with all the answers even when I feel lost. He sees me as his protector even when I don’t feel strong enough to get through the day. He sees me as the kind, loving, smart, funny, and wonderful parent that I don’t always see myself as.

I don’t know if I am getting it “right.” I don’t know what good parenting looks like. I just know my kids are fine.  I have done something right and as for chronic illness, I am the only one that sees it as interfering with my parenting.  My kids don’t seem to think so and their opinion is what matters.

And anyway, what makes a parent good or successful? Home-cooked meals? An impeccably clean home? Being able to participate in rigorous activities with your kids? Over the years, I have learned that none of these things have anything to do with good parenting.  But I still don’t know what good parenting looks like.

All I know is I am doing something right.  And I need to figure out a way to put it down on paper so that other parents with chronic illness know that they are not alone in their fears and their questions. But I don’t know if I have the answers.  After all, I am just muddling along in my own parenting.