Author Archive

May 13, 2016

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

 

 

May 11, 2016

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

April 13, 2016

Acknowledging the Monster of Arthritis and Pain

Learn how to accept chronic pain in your life with humor and gratitude.

Acknowledging the Monster of Arthritis and Pain

My world has changed considerably since chronic illness. But even though I have had rheumatoid arthritis (RA) and fibromyalgia for nearly eight years, there are still times where I view my body as my enemy and I don’t know if I can be the “me” that I need to be.

How can I have a normal life, raise my kids, be successful professionally and find love again when my life is consumed by the monster that is chronic illness and pain?

It is has taken me time and real life comedic moments to come to terms with that monster, whom I call RAF (an abbreviated combination of my RA and fibromyalgia). And lucky for me, RAF is always around.

My Revolving Door Plight

RAF is part of my biggest daily challenge — that revolving door in my office building that I can’t always push. The non-revolving door, I feel, is for people with visible disabilities and I am not part of that reputable group. Most of the time, it takes all the strength I have to push my way out through the revolving door. And, there are times when I need help.

One evening, I found myself struggling with brain fog, combined with a lack of coordination, strength and mobility. RAF was suddenly standing behind me breathing heavily, growling, and pulling me backwards. I contemplated whether RAF expected a fire department rescue. After what seemed like an eternity, the door started moving and I felt the cold February air outside. I didn’t have time to thank the hero who rescued me because he quickly walked off, leaving me both grateful and embarrassed.

As I sat in my car, I grasped how invisibly disabled I was. It took nearly eight years to come to a realization that I couldn’t push, lift, or move fast enough. All those years, RAF was impatiently waiting to be acknowledged. I finally did so with tears, conceding that RAF and I would be stuck in that revolving door many times more.

Read more at http://www.arthritisconnect.com/arthritis-articles/571-acknowledging-the-monster-of-arthritis-and-pain#3mT19XKtqSKcJEuY.97

April 13, 2016

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 

April 12, 2016

Maintaining Relationships with Chronic Illness

Friendships and other relationships drastically change once you have been diagnosed with a chronic illness.  You probably are no longer physically able to spend as much time with friends as you used to, especially when most of the activities you participated in before were tiring. As a results, friends that never made a huge effort in your life before quickly stopping keeping in touch. This is because those friendships suddenly required more effort and for those people to actually be proactive, by picking up the phone or coming over, for example.

It is a painful process of losing people but the more your health worsens, the more people you lose.   But you also get to choose which relationships to end as well.  Some people weren’t the greatest friends to start with and being sick has allowed you to see your life through a new and different perspective.

You now choose a calm, positive and healthy environment where stress is at a minimum rather than dealing with trivial events, petty concerns and fake people. You are trying to create a healthy lifestyle despite the suffering that chronic illness and pain has brought to your life.  And that means being proactive about who you surround yourself with.

Remember this is your life.  You are the one is who is sick and it is up to you to shape relationships in the way that works for your health and to control the factors that you can control.  Cherish the people that stick around and stop by to help out and who keep inviting you even though you decline their invites.

For the people who stick around, it definitely isn’t easy and there are expectations of all parties involved.  And chronic illness means continuous change so loved ones need our help in how to best help and what expectations we have.

Read more about taking the responsibility to stay connected with chronic illness at: http://www.arthritisconnect.com/arthritis-articles/478-staying-connected-with-arthritis#L6Z8DA25CrkYr4Rx.97

April 12, 2016

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

April 8, 2016

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!

April 7, 2016

The Ups and Downs of Chronic Illness

When you live with chronic illness, some days are just harder to get through than others.  The ups and downs are like a never ending rollercoaster of pain and emotions.  These make living with chronic illness difficult and the lack of understanding amongst family, friends, co-workers and even strangers is a bitter pill to swallow. You often have to explain the physical and emotional aspects of your illness and often, it seems impossible to define the obstacles you face daily.

At times, you feel isolated and uncertain and you may feel hesitant to seek support. On days like these, it is important to remember you are not alone.  There are people all over the world – even down the street – who are facing the same challenges you are.   These people have their share of bad days and they understand your frustrations, fears and concerns.

Everyone has good days and bad ones.  The good days are the days where you pain levels are controlled and you feel rested, productive and in charge of your body. The bad ones involve increased pain, fatigue, lack of focus, the inability to get things done, and feeling defined and controlled by your disease.

While all the days cannot be good ones, the goal is to have more good ones than bad ones.  You can plan ahead and do all the right things – eat right, take you medications, rest, etc. – but the disease can still take over.  Your symptoms flare up and you are just too tired and in too much pain to do anything.  This happens from time to time.  It is just part of living with chronic illness.  Unfortunately, you cannot ever predict how many good days you will have and when they will show up. And if you overwork yourself or overdo things, the good days don’t seem to last.

Chronic illness is unpredictable.  There is not much you can do except concede that there are ups and downs and good days and bad days.  You must learn to adjust and adapt to the moments when your disease brings you down.  And remember, just because chronic illness is part of your life, it doesn’t define you and you can be flexible in managing the ups and downs and have more good days than bad.

Read more about managing the ups and downs of chronic illness at http://www.arthritisconnect.com/arthritis-articles/361-3-ways-to-develop-resilience-to-chronic-illness-stressors

April 5, 2016

7 Ways to Overcome Your Fears About Your Chronic Illness

Learn how to tame your worries about your health with these coping techniques.

7 Ways to Overcome Your Fears About Your Chronic Illness

Most of us worry about our health because we have loved ones to care for, we don’t want to be dependent on anyone, and we don’t want to give up the things we love. But when you have a chronic illness, you have even more to be concerned about regarding your health. You might feel angry, helpless, and even afraid.

I consider myself an expert on the fear brought upon by rheumatoid arthritis and fibromyalgia because I have learned to overcome and manage my worries alongside my health challenges for the past eight years. I also know that being afraid is one of the most common reactions to forced changes, but it isn’t something you should let consume your life.

7 ways to overcome fears about your chronic illness

1. Do your research

People are afraid of what they don’t know. From the moment of diagnosis, invest time in understanding your symptoms and treatment options. Let your diagnosis be an opportunity for you to grow and learn more about your chronic illness, your body, and all the ways in which you can have a full and productive life despite your health issues.

2. Find the right doctor

When you have a chronic illness, the relationship with your doctor is one of the most important relationships you will ever have. A doctor who doesn’t take you seriously, doesn’t listen to you, isn’t knowledgeable about your disease, or gets easily frustrated with your questions will only worsen your fears and even your symptoms. The right doctor for you will act like your partner in your healthcare. Once you find that person, both your health and outlook on life will improve.

3. Know your life is not over

You are scared and might think your life cannot go on unless you can regain the health you had before chronic illness. Many things will change, but know that your life is not over. While it may be discouraging to see others do things you can’t, the ultimate goal of life is to be happy for ourselves and others. It is okay to grieve, but remember there is more out there. Know that ultimately you will be okay and won’t feel so overwhelmed by the challenges.

READ MORE AT http://www.diabeticconnect.com/diabetes-information-articles/general/2063-7-ways-to-overcome-your-fears-about-your-chronic-illness

April 4, 2016

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

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