7 Tips for Balancing Chronic Illness and Your Home Life

7 Tips for Balancing Chronic Illness and Your Home Life

Chronic illness affects every member of the family. It disrupts family life, puts a strain on finances and creates painful emotions. Nevertheless, it is possible to maintain a positive atmosphere as you cope and manage life at home.

Here are seven tips to help family members meet the challenges brought upon by chronic illness.

Revise Expectations of Family Life.

Family life will no longer resemble what it used it be or what you once expected it to be. You can still be there for your family but adjustments will have to be made. In order to move on and to change your life path, you need let go of the expectations you once had for yourself and for loved ones. Holding on to the idea of the lives we had or planned doesn’t allow us to live in the present and to handle what is real.

Learn to Put Your Needs Ahead of Others.

Putting your needs ahead of children and a spouse is a tough choice, but it is a necessary one. While our families need us, they also need us to be strong, healthy and around for the long term. In order to do that, we must care for ourselves and learn to put our health first.

Deal with Fatigue and Symptoms.

Different treatment options will help you to ease fatigue and symptoms. Light daily exercise and decreasing your workload will help you to reduce and manage stress. Your workload should be at a level that helps you to balance your health alongside your life and family demands.

Ask for Help.

Asking for help and accepting help can be a challenge for many people with chronic illness. But there are big benefits to accepting help. These include decreasing isolation when you are part of a support community, getting the help you need, such as getting to appointments or getting your home cleaned, and allowing others to feel useful. Remember, help is available but you have to be willing to seek it and ask for it.

Manage Finances.

It is important to be constantly aware of your family’s financial situation. You should learn all you can about your medical insurance so as to keep medical costs low. Talk to your doctor if you are struggling to pay for medications because he or she can offer medication samples, write prescriptions for generics, and even offer information about medication assistance programs. Moreover, you should prioritize your bills and expenses and always pay bills on time to avoid late fees. Last, balance your checkbook and keep track of your spending so you do not overstretch your finances.

Consider Chronic Illness Counseling.

Chronic illness counseling can help people cope with the emotional challenges brought on by their diseases. Living with a chronic condition can disrupt daily routines, overstretch family finances and create conflicts. Further, patients and their family members can struggle with depression and anxiety as a result of chronic illness’s affect on their daily lives. Counseling can help the household deal with the initial shock of the diagnosis, teach stress reduction and coping strategies and improve self-esteem.

Be Open to a Positive Experience.

Life can be still be positive despite the challenges brought on by chronic illness. Because chronic illness is here for the rest of our lives, it is important to have a positive outlook. Positive living might seem difficult but it is necessary for coping and avoiding depression. Being open to a positive experience allows you think positively about your disease and your life. You decide to cherish life and you start living rather than wallowing in self-pity. You make the choice to look at life differently and you rearrange your plans so you can still accomplish what you need and want out of life. Remind yourself that everything happens for a reason and that you can still have control of your life. In thinking positively, you are working toward a better quality of life for yourself and your loved ones.

Originally posted at Arthritis Connect.

Parenting with Chronic Illness is no cakewalk

mom with kidsAs you know, chronic diseases, like rheumatoid arthritis (RA) are progressive, meaning they will get worse over time. As a parent with a chronic disease, do you wonder if it prevents you from being the kind of parent you want to be?

From experience, I can tell you that raising kids while struggling with RA is no cakewalk. Pain, fatigue and stiffness are still my daily realities and they make parenting a challenge.

As you know, being a parent means you draw attention away from yourself and you give it to your children because they need you. That can be especially difficult when you are dealing with chronic pain, disease symptoms and fatigue. Further, you are not the only one who suffers from the effects of your disease. Children whose parents living with a chronic illness and/or chronic pain condition have many questions about the effects of chronic and while this can be difficult, it is important for parents to ease their children’s fears about chronic illness and pain.

I am mother to a four year old and a teen. My four year old understands that mommy hurts and I find that on the days I am dealing with high levels of pain, he responds by acting act. My thirteen year old has questions about the future and whether things will get worse for me. I respond by telling them that I will be do everything I can so that I don’t get worse. He worries about schedules and routines and often asks how he can help. He wants to know who will care for his brother and him and he wants to know that someone will. What I have learned is that my honesty holds me credibility than telling him that “I don’t know” or that “I will be better tomorrow” when that may not be true.

I know that as my kids get older and my RA worsens their questions will change and I don’t know what my responses will be. I just know that life for us isn’t normal or easy because I am not healthy. What I do know is that my children understand empathy a lot more than their peers do. I also know that as they get older they will learn to deal with life’s obstacles with the lessons we have learned as a family dealing with effects of RA on our lives. For now, I try to offer than normalcy as often and as best as I can.

The best any parent living with chronic illness can offer to their children is to share their good days and good moments and prepare them for when bad days arise. It is also important to stay on top of your children’s moods and behaviors because they are just as affected as you are emotionally. However, their responses will be different than ours.

So, parenting with chronic illness can be hard but the good news is that new medicines for treating autoimmune diseases can halt joint destruction and reduce the chances of disability significantly. Moreover, early and aggressive treatment can improve the quality of life for parents with chronic disease and hopefully help them to  avoid disability.

Don’t let a misdiagnosis deter you

Standing Focus

I do not recall the exact date that my symptoms started or even what triggered my symptoms.  I do not even recall the date of my diagnosis.  What I do know is that it took me nearly ten years to get a correct diagnosis and I recall many of the details of that experience.  I would communicate to my doctors that I was experiencing all over body pain, a collection of unexplained and unusual symptoms and extreme exhaustion. I was nodding off during the day no matter how much sleep I got and most mornings, waking up was a challenge. I would find that some doctors would look at me as if I was irrational while others would focus on diagnosing and treating my symptoms.   I endured criticism not only from the medical community but also from friends and family.

I soon realized that my experience, albeit challenging, was a blessing in disguise.  After all, receiving a diagnosis was a result of my being a strong advocate for myself and working with my doctors to find the root cause of my symptoms. I did my own research, made my own notes about my symptoms and what trigged them, and I checked my notes every time I went to see a doctor.  Moreover, the years of trying to find answers taught me patience, dedication, strength and survival and prepared me for life with chronic illness.

Misdiagnosis is common medical error that occurs in fifteen percent of medical cases.  Misdiagnoses can have dire consequences, including unneeded and delayed treatments and physical and emotional suffering.  From experience, I know how frustrating it is to experience misdiagnosis after misdiagnosis as you seek answers and treatment. If you are dealing with a lack of answers and wondering what else you can do, here are some ways in which you can help yourself.

  • Learn who you can confide in and who you cannot.  Some of your family and friends will be supportive and others won’t.  Do not let the latter group dissuade you from finding answers or allow you to believe that what you are experiencing isn’t real. 
  • Find doctors who will listen and if you come across one who won’t, don’t take it personally, move on and find one that will.
  • Write down your symptoms in a journal including what triggers those symptoms and be prepared to share that information with your doctor.
  • Be your own advocate and stand up for yourself. Arm yourself with the knowledge you need to get a diagnosis while your condition is still manageable.
  • If you someone tells you “it’s all in your head,” don’t believe them and don’t let them deter you regardless of what type of medical degree they have or the influence that they have on your life.

Whatever you do, don’t give up hope. It took me nearly ten years to find answers and I spent a great deal of time feeling frustrated with the lack of answers and the cynical people that came my way.  The way I see it is that a diagnosis only gives you some closure; it does not instruct you on how to heal and to continue to have a productive life (with or without a diagnosis) – that choice is yours alone.

Taking Charge of Your Health

Ten years of looking answers and a diagnosis taught me two very important things: (1) how to advocate for myself and (2) how important it is to educate myself. Any time I come across newly diagnosed patients, the advice that I give them is educate themselves and advocate for themselves. This is something that no one can do for you. Furthermore, chronic illness and pain is a serious thing and if you do not believe that it is serious, then you are headed to a long road of complications. That is why it is so important to care of your body, educate yourself about your condition or conditions, and to work successfully with your medical providers. It is also important to be willing to make lifestyle changes and to take your medications and/or supplements. All of this starts changing your attitude and behavior and if you are not willing to take that first step, you are not going to be successful in your short and long-term care.

What things have done to take charge of your health?

What types of failures and successes have you had?

Take Charge of Your Health

Ten years of looking answers and a diagnosis taught me two very important things: (1) how to advocate for myself and (2) how important it is to educate myself. Any time I come across newly diagnosed patients, the advice that I give them is educate themselves and advocate for themselves. This is something that no one can do for you. Furthermore, chronic illness and pain is a serious thing and if you do not believe that it is serious, then you are headed to a long road of complications. 

That is why it is so important to care of your body, educate yourself about your condition or conditions, and to work successfully with your medical providers. It is also important to be willing to make lifestyle changes and to take your medications and/or supplements. All of this starts with changing your attitude and behavior and if you are not willing to take that first step, you are not going to be successful in your short and long-term care.

Photo Source: Nicholls State University

A Cheat Sheet for Coping with Rheumatoid Arthritis Flares

It may seem as if flares are the most difficult tests of all to endure. Every time I experience a flare, I think that I know what to expect but regardless of experience, it seems that every flare is different.

Yet, in some ways, they are all the same. In the moments where I feel a great deal of pain, the fatigue is at its worst and I am extremely overwhelmed, it is hard to have a clear perspective. What I have found, however, is that having a plan, or a cheat sheet, for dealing with a flare makes coping so much easier.

What ignites a flare?

What we all know about rheumatoid arthritis (RA) flare-ups is that they are unpredictable. Sometimes they come often, and other times you can enjoy longer periods of remission with only sporadic attacks of inflammation and fatigue. A flare can occur in few joints or it can affect the whole body, and it can last for days or even weeks.

Any number of things can trigger flares and they are not necessary specific to certain foods, hormones or even stress. Other factors that can ignite flares include smoking and the weather. That is why it is so important to educate yourself on living with RA and dealing with its effects. Further, being informed allows you to quickly evaluate an oncoming flare and to work towards coping through it successfully.

My cheat sheet for coping

I have a yellow post-it note in my medicine cabinet (taped to the inside part of the door) that has the following written on it: “For Flares: No drugs, rest and exercise, watch what you eat, try alternative therapies, drug options and call your doctor.” When a flare happens, I try to follow these in order depending on the severity of the flare, and then continue them throughout the duration of the flare.

Here my cheat sheets tips for coping with a flare:

Start with No Drugs. The reason I keep my cheat sheet in my medicine cabinet is to remind myself to consider non-drug therapies before medicinal approaches. Heating pads and cold packs can be applied to affected areas to reduce pain and swelling.

Doctors recommend resting affected joints and applying ice for 20 minutes on and 20 minutes off for a period of two hours. Alternate between hot and cold every two hours with the same schedule – 20 minutes on and 20 minutes off.

Alternate Between Rest and Exercise. We know that rest is essential during a flare period, but so is exercise. This is because if you do nothing, your joints will become stiff. Having a flare-up is not a reason to avoid activity. In fact, it is necessary to keep moving as well. However, avoid strength training and endurance exercises as you deal with the flare. Instead, try gentle stretches to maintain a range of motion.

Watch What You Eat. While eating is the last thing on your mind during a flare period, eating foods rich in fish and plant oils and avoiding meat can help to reduce inflammation. If you take an omega-3 supplement, increase your intake to 3,000 milligrams daily. Most likely, that consists of taking two omega-3 supplement capsules. However, check the bottle’s label to confirm.

Try Alternative Therapies. As you know, chronic pain and RA patients have found relief in practicing relaxation techniques, mediation, yoga and acupuncture. While I have not tried acupuncture, I have tried and benefited from relaxation, meditation and yoga. All three help during a flare by alleviating stress, relaxing the mind, and relieving pain. When you first try these therapies, becoming relaxed can seem like a nearly impossible task, but it is something that can in fact be learned.

As for acupuncture, researchers have questioned whether it holds any helpful value, but according to many it is a practical alternative for managing arthritis pain. If available during the flare period, it is a viable option that can relieve RA related pain and help to minimize stress and anxiety.

Drug Therapies. When all else fails, it is time to call the big guns. I consider medicinal approaches a last option. RA patients already take plenty of medications to slow down and the stop the progression of the disease, so it makes sense to consider non-medicinal approaches when possible.

Start with over the counter (OTC) anti-inflammatory gels that can be applied to inflamed joints. Use sparingly because overuse of gels can cause skin irritation. If gels are not working, your next option can be anti-inflammatory OTC medications (e.g., Advil or Aleve). Please note that the overuse of anti-inflammatory OTC medications can cause additional risks such as stomach irritation and ulcers so, as with gels, use in moderation.

Call your Doctor. When non-medicinal approaches, exercise and rest, watching diet, alternative therapies, and anti-inflammatory gels and pain relievers are not working, work with your doctor to create a plan that will help you bounce back quickly. Your doctor can raise the dosage of RA medications and prescribe additional medications to help with pain and reduce inflammation. If your flare is especially severe, strong anti-inflammatory corticosteroids can be temporarily used.

Having your own Cheat Sheet

Having rheumatoid arthritis requires you to constantly be on top of your game. This is because a flare-up can keep you out of commission for days on end. As a result, planning for a flare is critical and it is similar to planning for a disaster. Prepare your own cheat sheet even if it is as simple as a post-it note reminder. Keep in mind that planning for flares will help you to cope from the first onset and will allow you to remain capable and focused during a flare period. It will also save you time and energy that is better suited for coping.

What’s on your flare-up cheat sheet?

Having a Social Life Despite Chronic Illness

I know that this is an area that a lot of us do not like to discuss. How is maintaining a social life even possible when you are always sick and in pain? Your healthy friends may try to understand and support you, but they still have a social life and that is nearly impossible for you on most occasions.

Despite your many obstacles, it is important to have a social life. This is because dealing with your condition and its unpredictability is not something you want to go at alone.

Some things to consider:

• Your true friends will try to understand your condition and support you so they will understand your limitations when it comes to your social life so don’t cut yourself out completely.

• Know that you are not your disease and your disease is not you. This distinction is important and it might help to remind yourself of this.

• Let you friends know when you are unable to be a part of something but also let them know that they can still ask you to participate.

• You should have two sets of friends, those with chronic illness and those without. It is important to separate your identity so that chronic illness is not a constant reminder of your limitations.

What other reasons are important to having a social life when you have a chronic illness? Have you been limited by your chronic illness when it comes to having a social life? How have you been able to overcome some of these limitations?

 

RA Tip: Spring Cleaning and Rheumatoid Arthritis

Your calendar is a reminder that spring is here in addition to the warmer weather. With spring in the air and wintertime behind us, many of us want to spring into action. By that I mean, spring cleaning but rheumatoid arthritis flares may prevent you from completing everything you would like done. That is the valuable lesson I learned in the spring of 2011 about overdoing things. I spent most of April swore from head to toe as a result of my insane desire to get rid of the clutter in my life. As a result of that experience, I gained some much needed knowledge.

Here are those lessons learned:

Prioritization. Decide what cleaning projects are best suited for spring and which can wait for the other seasons.

Planning. Create a system to complete tasks in an efficiently and orderly manner. Some jobs you can do in the morning, others maybe better in the evening hours. For example, you may want to tend to your garden during the day when temperatures are warmer and clean out closets in the evening. Switch from hand work to reaching or bending work so that you do not overwork one area of the body for too long.

Do not everything at once. Spring lasts for three months so you can spread projects over days or weeks.

Rest. Plan rest periods. By skipping a rest period, you may get one task off your list but you may also overdo things and end up having to rest for days.

Avoid repeat trips. Use an apron with pockets or a utility cat to avoid repeat trips for cleaning supplies. Or buy multiple supplies to keep in several areas of your home especially if you have steps to climb.

Protect joints. Keep your hands flat when wiping things down with rags or use dusters that fit over the whole hand to keep your hands and fingers from becoming inflamed. Use large sponges so that you can squeeze water out by pushing down on rather than pressing the sponge into the palm of your hand. Consider joint friendly cleaning supplies such on long handled dustpans. Make sure tools and products are light weight, easy to use and long handled. If possible, sit down during a project and use foot rests.

Last year’s spring cleaning left me in bed for several days. Now that I reflect on upon that, I think that not only should we spring clean our homes but also our minds. Think about it – it is so important to sort your thoughts, address concerns you may have and eliminate issues that no serve no purpose but constant stress and worry.

Arthritis and Winter Months

 

How often have you said, “It is going to snow? I can feel it in my bones.” Not only have you said it but you have heard other arthritis sufferers say this and other similar quotes about predicting the weather. The reason we, as arthritis sufferers, can predict the weather is because we feel increased pain due to being weather sensitive. We know that will be cold, snowing and rainy before any of these things actually happen. 

Did you know that 70 percent of people with arthritis are weather sensitive? Not only does winter bring with it colds and flus, it also brings with it an exacerbation of our chronic ailments. Most of us are going to have worsening pain in our bones and joints during the winter months. However, just because you are not out and about doesn’t mean you cannot be active. It is still important for you to be active and to avoid becoming a couch potato during the wintertime months. 

What we know about weather and the wintertime is that cold and damp weather can cause tendons, ligaments and muscles around the joints to contract. Moreover, cavities in the joints are affected by atmospheric pressure. Winter is already going to increase arthritis symptoms and being inactive will add to the toll. To keep mobile, continue regular exercise and range of motion activities.  

You will also want to protect your joints. To protect your joints in the winter months,

• Keep warm and covered

• Avoid strenuous activity such as shoveling snow

• Avoid falls by being careful on slippery surfaces.

The Internet as a Resource and the Mistake of Self-Diagnosis

We have all been guilty of this but the truth is, self-diagnosis is a bad idea. It does not even matter what website you are using. WebMD or National Institutes for Health – don’t do it! First, it is not easy as it seems and it can lead to incorrect conclusions. Feel free to research your symptoms but leave the diagnosing to the doctors.

Think about it this way – if you want to know the highest mountain in North America, the internet is a great resource but if you dealing with constant head pain, the internet won’t help you. There was recent Twitter based survey that asked people where they get their healthcare advice. You won’t believe this but 54% of respondents said that they use the internet as their primary source of health advice. Is diagnosing yourself really that good of an idea?

As someone who struggled with chronic illness for many years, I do believe in the getting the most accurate care when you are sick. However, the self-diagnosis/do-it-yourself approach doesn’t do it for me. If you are actually thinking about trying the whole do it yourself thing, consider the following:

• If you want right answers, ask the right questions. If you are dealing with constant head pain, don’t spend your day research aneurysms because that is the only possible conclusion you can come to. For all you know, your doctor will diagnose those headaches as migraines and in the meantime, you have driven yourself crazy with this so make sure you get your facts straight.

• Consider the source. Are you reading a research article from medical journal or are you reading something that a company has posted for its own agenda?  As you know there plenty of people out there that practice snake oil sales and the internet has plenty of those kind of sales people waiting for you to fall for their so called cures and diagnoses. As I tell my kids, just because it is on the internet doesn’t mean it is true.

• If it is on the web, it is not about you. The internet can be an educational source but what you are reading doesn’t apply to you, your medical history, family medical history and your specific circumstance. I am a firm believer in learning all you can about your condition but it is important to understand that what you read doesn’t necessarily apply to your unique situation.

• Look for information that is up to date. As you know, the field of medicine is constantly changing and advancing. It changes year by year so check to see when the information was published. If it is an old resource, look to see if you can find an updated version or another more timely reference.

• Avoid the self-diagnosis. Think about the self-fulfilling prophecy in a psychological setting. If you believe something, your behavior will lead it to appear true. In this case, you are likely to influence yourself into self-diagnosis because of the knowledge that you have about the experience or something you are afraid of. For example, if you have a family history of heart attacks, you are more likely to notice chest pain or even think you are having a heart attack simply because it is something that worries you.

The bottom line – it is okay to use the internet as a resource but be smart about it. Don’t stop with what you are reading and follow up with your doctor about what is ailing you.