How to Survive the Holidays with a Chronic Illness

Holidays are stressful enough without having a chronic illness. And just getting through a regular day with a chronic illness is difficult enough without the added stressors of the holidays. So here is your Holidays with a Chronic Illness Survival Guide.

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Dress for Comfort

Sure there will be family pictures and selfies and surprise snapshots, but dress for your comfort. If you know that tags, tight jeans, wool, turtlenecks, etc. cause you irritation don’t wear them. Opt for something that is stylish and comfortable like leggings and a cute flowy top or these comfortable and stylish options for men. If you know that you are cold or warm natured or that your mom tends to keep her house an uncomfortable 80 degrees, dress accordingly.

Be Prepared to Fight the Cold and Germs

tissues and hand sanitizerIt may be the holiday season, but it is also cold and flu season. Bring along pocket sized hand sanitizer and tissues. Also, fight the cold weather and any drafty houses with scarves, gloves, and layered clothing. Cold air, drafts, and germs are a chronic illness warrior’s mortal enemy.

to do list clip artPlan Ahead

Planning ahead can take a lot of the stress out of the craziness of the holidays. That extra stress can undoubtedly lead to a flare. Have a plan and a to-do list to keep you organized and on schedule. Invest in a planner!

Rest Up

And while you are planning, schedule in some down time to allow yourself to rest. Down time will actually allow you to slow down and enjoy the time with your family and friends so much more. If you know you have a big event that will use up a bunch of spoons, try to rest more the day before.

Ask for Help

It’s common to have trouble asking for help, but it is a necessity for a Spoonie to survive the holidays.

If you find yourself hosting the holiday festivities go potluck and ask everyone to bring a dish or two.

Ask for help cleaning up afterwards.

Enlist a friend or two to help with wrapping gifts. Put on some holiday movies or music, pop open your favorite bottle of wine (or whatever beverage doesn’t worsen your symptoms) and make a day of it.

Pace Yourself and Be Realistic

During the holidays we want to say YES! We want to be involved in all the fun activities, How to Survive the Holidays with a Chronic Illness pace yourselfbut we need to be realistic and pace ourselves. If your mailbox is flooded with invites, don’t say yes to all of them if you know that it will wear you out and send you into a flare. Don’t sign up for every Holiday fun run, every Caroling excursion, don’t volunteer to sew all of the costumes for the Christmas play, and volunteer to go on the hike to cut down the Christmas tree. Limit and pace yourself to ensure that you can enjoy the events that are the most important to you.

Shop Online

Avoid the crowds and long lines that can do a number on our bodies and emotions by shopping for gifts online. Save yourself the physical pain and maintain your sanity.

Bring Your Own Food

How to Survive the Holidays with a Chronic Illness Bring Your Own FoodIf you’re going to someone else’s house to stay for the holidays or holiday meals bring along your own food if you have special dietary restrictions. It will keep you healthy and you will avoid a flare up if you maintain your diet. Let the host no ahead of time that because of your health needs you will bring your own meal. Your host will undoubtedly understand and appreciate the heads up. And they will be grateful that you didn’t expect them to cater to your specific needs.

Listen to Your Body and Don’t Feel Guilty

As always, the most important survival tip is to listen to your body. Take time to care for yourself and your body’s needs. Rest when you need to rest. Eat the foods that make your body happy. Don’t feel guilty if you can’t stay up late chatting with family. Don’t feel guilty if you need to sneak off for a quick nap before you holiday meal. Taking care of yourself is always priority number one, even during the holiday mayhem!

Do you have more tips to help us all survive the holidays with our chronic illnesses? Leave your tips in the comments.

Happy Holidays, Warriors!

Keep Kickin’ AS!

Extra Spoons to You All!spoons-19.png

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
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Possible Complications of Ankylosing Spondylitis

Ankylosing Spondylitis (AS)is a chronic, autoimmune type of arthritis that triggers ankylosing spondylitis backpainful inflammation in the body. Most commonly, AS affects the back, buttocks, and pelvic region, but symptoms can spread to other joints and organs within the body as the disorder progresses. Also note, that this disorder affects every individual differently and in some cases the symptoms can begin in the peripheral joints (joints not located in the spine such as knees, ankles, wrists, fingers, etc). Uncontrolled inflammation can contribute to other complications throughout the body ranging from mild to severe and disabling.

Possible complications are:

  1. Fatigue – Fatigue and tiredness is one of the most common symptoms of Ankylosing Spondylitis. The cause of the fatigue is the higher levels of inflammation within the body and the body’s constant fight to try to keep the inflammation under control. Fatigue is often labelled patients as the most debilitating of their symptoms. Some have described the Fatigue to be similar to the fatigue that accompanies the flu. However, unlike the Flu, you do not recover from AS in just one or two weeks. TNF-inhibitors prescribed by rheumatologists as well as regular exercise can help to lighten the load of the immune system, thereby relieving the fatigue and improving the patient’s quality of life.
  2. Reduced flexibility – as with most kinds of arthritis, AS patients can experience reduced flexibility in some or all of their affected joints. The damage to joints caused by inflammation can restrict the movement of muscles and joints as the disease progresses. With AS patients, a Yoga-Poses-to-Help-Ankylosing-Spondylitis-03-722x406particular concern is that this will happen within the spine and that the spinal vertebrae will begin to fuse in the lower back, causing a permanent slumped forward position. In some cases, this can lead to permanent disability. It is important for AS patients to maintain an active life to promote and encourage their joints’ continued flexibility. Consult your physicians for approved exercises and stretches to maintain and increase flexibility safely.
  3. Eye Problems – It is important for AS patients to maintain regular check-ups with ophthalmologists as inflammation can spread to the eyes. Inflammation of the eye can be a symptom of Uveitis or Iritis, depending on the exact location of the inflammation within the eye. Let your doctors know if you experience eye redness, light sensitivity, eye pain, blurred vision, see spots, or experience unusual puffiness around the eyes. Ophthalmologists are medical doctors and you can use your regular medical insurance for their visits. Ophthalmologists will do thorough examinations of your eyes to ensure that you maintain proper eye health and they can monitor the affects that Ankylosing Spondylitis may have upon your eye health and vision.
  4. Social and Employment Problems – Ankylosing Spondylitis can affect a person’s social and public life as it progresses. AS can limit the type of work a person can do, especially when it comes to physical labor. Some AS patients may be able to work a full 40-hour week, some can only tolerate a few hours a day, and others may not be able to work at all, depending on how advanced their AS is and the jobs that they are expected to perform. Depending upon the AS patient’s limitations, they may eventually need to file for disability. AS patients should learn and focus proper sitting and standing posture, and take frequent stretching breaks if they spend a large portion of their time seated at a desk to prevent any further damage. Taking breaks to move around and stretch will prevent joints from locking up or becoming stiff. This also helps to keep the blood flowing and can assist with fatigue. It can grow increasingly difficult for people with AS to get out and socialize as their energy gets depleted from daily tasks. Chronic pain can be isolating as people experiencing the pain are less likely to visit friends. This isolation can lead to depression. Joining support groups, socializing online, and working to maintain friendships and relationships can feel draining, but it is important to do so in order to maintain your mental and emotional health.
  5. Gastrointestinal Disorders – AS inflammation can spread to the intestinal tract causing stomach pain and digestive issues. Symptoms of inflammation within the intestinal tract include: stomach pain, stomach ulcers, diarrhea, constipation, and problems digesting. In severe cases, Ankylosing Spondylitis patients can also develop Irritable Bowel Syndrome, Crohn’s Disease, or Ulcerative Colitis. It is important to discuss any of these symptoms with your doctor. They may provide you with dietary advice to limit the symptoms of these disorders.
  6. Osteoporosis – Osteoporosis is a medical condition in which the bones become brittle and fragile from loss of tissue. The bone becomes less dense than normal osteoporosis_s1_bone_densitywhich leads to the bones being weak and prone to breaks and fractures. When this disease develops in the spines of Ankylosing Spondylitis patients (caused by the severe inflammation within their body) it increases their risk for spinal injury. AS patients frequently develop Osteoporosis, even in the early stages of the disorder.
  7. Increased risk of heart disease – Cardiovascular problems that Ankylosing Spondylitis may contribute to include:
    1. Aoritis- Aortitis is inflammation of the aorta, and it is representative of a cluster of large-vessel diseases that have various or unknown etiologies. While inflammation can occur in response to any injury, including trauma, the most common known causes are infections or connective tissue disorders. Inflammation of the aorta can cause aortic dilation, resulting in aortic insufficiency. Also, it can cause fibrous thickening and ostial stenosis of major branches, resulting in reduced or absent pulses, low blood pressure in the arms, possibly with central hypertension due to renal artery stenosis.
    2. Aortic Valve Disease – Aortic valve disease is a condition in which the valve between the main pumping chamber of your heart (left ventricle) and the main artery to your body (aorta) doesn’t work properly. Aortic valve disease may be a condition present at birth (congenital heart disease), or it may result from other causes.
    3. Conduction problems – Your heart’s rhythm is its pace or beat. Conduction is the progression of electrical impulses through the heart which cause the heart to beat. You can have a conduction disorder without having an arrhythmia, but some arrhythmias arise from conduction disorders.
    4. Ischemic Heart Disease – Ischemic heart disease is also known as coronary artery disease or “hardening of the arteries.” Cholesterol plaque can build up in the arteries of the heart and cause “ischemia,” which means the heart is not getting enough blood flow and oxygen. If the plaque blocks an artery, a heart attack can result.heart
    5. Cardiomyopathy – Cardiomyopathy is a condition where the heart muscle is abnormal. The main types of cardiomyopathy include dilated, hypertrophic and restrictive cardiomyopathy. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.

It is important to take preventative measures to reduce the risk of cardiovascular problems. Though this applies to every individual, not just AS patients. Regular exercise and a healthy diet should be included as part of the treatment plan for Ankylosing Spondylitis. It also helps to avoid tobacco use and maintain a healthy weight.

  1. Amyloidosis – Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ. Amyloidosis can cause symptoms such as weight loss, water retention, tiredness, and in some cases tingling of the hands and feet.
  2. Cauda equine syndrome – This extremely rare condition is a bony overgrowth caused by inflammation. It leads to pressure and swelling at the end of the spinal cord. The swelling can compact the nerves in the lower part of the back. If left untreated Cauda Equine Syndrome can lead to paralysis.

There are links provided within this blogpost to provide more information for some of these listed complications. Please consult your health practitioners with any questions or concerns you may have.  It is important to be your own health advocate when you have a chronic illness. You know your own body better than anyone and you know when there is something that is off, wrong, or not working the way it should.

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.