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How to make self care a priority when you’re dealing with a chronic illness


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You can’t scroll far on Instagram without seeing a #SelfCareSunday selfie with a caption declaring the health-boosting, stress-relieving benefits of the practice—but bubble baths and face masks can seem trivial when you’re dealing with a chronic illness, like multiple sclerosis.

For Dawn Morgan, 38, who was diagnosed with relapsing MS (RMS) at the age of 25, it’s actually anything but. “Self care is one of the most important things that you can do if faced with a chronic illness,” Morgan says. “Making it a priority is important because you want to be the best you.”

“Self care is one of the most important things that you can do if faced with a chronic illness.”

For Morgan, that comes in the form of writing for her blog, taking Tai Chi and yoga classes, and meditating—but finding those outlets took some trial and error. “I had to understand that taking time out of my day to pause and love myself wasn’t a selfish act,” she says. “[Now] I’m constantly encouraging others to ‘live life to the best of their ability.'” And if for you that includes a day of masking and bubble baths, go for it.

Scroll down for her 5 recommendations on moving self care to the top of your priorities list.


Lemtrada multiple sclerosis
Photo: Unsplash/Nine Köpfer

1. Try deep breathing

Morgan was so shocked by her diagnosis that she picked her first treatment option at random. “I attempted humor to cover up how terrified I felt,” she says. Since then, she’s learned that the best coping method for dealing with decisions that feel monumental is to just take a breath.

“My advice for other women going through this process would be ‘breathe first,'” she says. “Stay positive, and focus your thoughts on what is right instead of what has gone wrong.”

Lemtrada multiple sclerosis
Photo: Unsplash/Andrew Neel

2. Find a treatment option that works for you

When Morgan’s first two treatments (also known in MS as disease modifying therapies, or DMTs) didn’t help her RMS the way she hoped, she realized it could have been because she wasn’t fully complying with her doctor’s advice.

“It wasn’t until the third disease modifying therapy that I really told myself, ‘Dawn. This is an act of self care.’ My disease is getting worse, so it’s crucial to comply with the doctor’s orders.”

But even after going all in with her third treatment option, she still had not found a DMT that worked for her—which is when her doctor suggested she try an infusion therapy called LEMTRADA® (alemtuzumab) 12 mg IV.

“Finding a treatment option that worked for me was critical.”

“I was skeptical, especially after the other previous treatment options did not work for me,” Morgan says. So she started gathering information and reading about the experiences of other RMS patients who had taken this treatment option on the Voices of Determination blog.

“Finding a treatment option that worked for me was critical,” she says. “So after researching and having a thorough discussion about the benefits and risks, I made the decision together with my neurologist to start LEMTRADA.”

lemtrada multiple sclerosis
Photo: Unsplash/Dingzeyu Li

3. Seek out a practice you love

As an avid runner and gym-goer before her diagnosis, Morgan never envisioned herself becoming a yogi. But now, she can’t imagine her life without yoga and meditation.

“Meditation changed my life,” she says. “Without yoga and meditation, the changes I have gone through may have been so much harder to manage. I think I realized early on in my RMS journey that moving—although some days it was difficult—is the most important thing you can do. A holistic approach to managing symptoms that allows you to focus on yourself is the best example of self care in my opinion.”

So whether it’s flowing through a vinyasa, writing in your journal, or taking a cooking class, find something that brings you joy, and soak in the good vibes.

Lemtrada multiple sclerosis
Photo: Unsplash/Kira auf der Heide

4. Don’t be afraid to say no

Though ditching out on your tribe when they’re trying to support you can seem backwards, it’s totally okay to take time for yourself if you need it.

“It’s okay to cancel plans if you aren’t feeling well,” says Morgan. “I always think of what flight attendants say before take-off: Place your mask on first before assisting others. You cannot effectively manage what is thrown your way if you ignore your number one priority, which is yourself.” So if you need to stay in and drink tea instead of going out with friends, go for it.

Lemtrada multiple sclerosis
Photo: Unsplash/rawpixel.com

5. Be your own advocate

Finally, you’ve got to look out for yourself. Though Morgan definitely recommends surrounding yourself with a support squad, she also encourages people with chronic illnesses to practice self-advocacy.

“It is important to always be honest about how you are feeling when speaking with your healthcare team. So speak up, if you have something on your mind,” Morgan says. “Not to mention, being your own advocate supports self care. You know what’s best!”

 

IMPORTANT SAFETY INFORMATION

LEMTRADA can cause serious side effects including:

Serious autoimmune problems: Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death. Serious autoimmune problems may include:

  • Immune thrombocytopenia, which is when reduced platelet counts in your blood cause severe bleeding that, if not treated, may cause life-threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
  • Kidney problems called anti-glomerular basement membrane disease, which can, if untreated, lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death. Call your healthcare provider right away if you have any of the following symptoms: blood in the urine (red or tea-colored urine); swelling of legs or feet; coughing up blood

It is important for you to have blood and urine tests before you receive, while you are receiving and every month, for 4 years or longer, after you receive your last LEMTRADA infusion.

Serious infusion reactions: LEMTRADA can cause serious infusion reactions that may cause death. Serious infusion reactions may happen while you receive, or up to 24 hours or longer after you receive LEMTRADA.

  • You will receive your infusion at a healthcare facility with equipment and staff trained to manage infusion reactions, including serious allergic reactions, and urgent heart or breathing problems. You will be watched while you receive, and for 2 hours or longer after you receive, LEMTRADA. If a serious infusion reaction happens while you are receiving LEMTRADA, your infusion may be stopped.

Tell your healthcare provider right away if you have any of the following symptoms of a serious infusion reaction during the infusion, and after you have left the healthcare facility:

  • swelling in your mouth or throat
  • trouble breathing
  • weakness
  • fast, slow, or irregular heartbeat
  • chest pain
  • rash

To lower your chances of getting a serious infusion reaction, your healthcare provider will give you a medicine called corticosteroids before your first 3 infusions of a treatment course. You may also be given other medicines before or after the infusion to try to reduce your chances of having these reactions or to treat them after they happen.

Certain cancers: Receiving LEMTRADA may increase your chance of getting some kinds of cancers, including thyroid cancer, skin cancer (melanoma), and blood cancers called lymphoproliferative disorders and lymphoma. Call your healthcare provider if you have the following symptoms that may be a sign of thyroid cancer:

  • new lump
  • swelling in your neck
  • pain in front of neck
  • hoarseness or other voice changes that do not go away
  • trouble swallowing or breathing
  • cough that is not caused by a cold

Have your skin checked before you start receiving LEMTRADA and each year while you are receiving treatment to monitor for symptoms of skin cancer.

Because of risks of autoimmunity, infusion reactions, and some kinds of cancers, LEMTRADA is only available through a restricted program called the LEMTRADA Risk Evaluation and Mitigation Strategy (REMS) Program.

Do not receive LEMTRADA if you are infected with human immunodeficiency virus (HIV).

Thyroid problems: Some patients taking LEMTRADA may get an overactive thyroid (hyperthyroidism) or an underactive thyroid (hypothyroidism). Call your healthcare provider if you have any of these symptoms:

  • excessive sweating
  • unexplained weight loss
  • eye swelling
  • nervousness
  • fast heartbeat
  • unexplained weight gain
  • feeling cold
  • worsening tiredness
  • constipation

Low blood counts (cytopenias): LEMTRADA may cause a decrease in some types of blood cells. Some people with these low blood counts have increased infections. Call your doctor right away if you have symptoms of cytopenias such as:

  • weakness
  • chest pain
  • yellowing of the skin or whites of the eyes (jaundice)
  • dark urine
  • fast heartbeat

Serious infections: LEMTRADA may cause you to have a serious infection while you receive and after receiving a course of treatment. Serious infections may include:

  • Herpes viral infections. Some people taking LEMTRADA have an increased chance of getting herpes viral infections. Take any medicines as prescribed by your healthcare provider to reduce your chances of getting these infections.
  • Tuberculosis. Your healthcare provider should check you for tuberculosis before you receive LEMTRADA.
  • Hepatitis. People who are at high risk of, or are carriers of, hepatitis B (HBV) or hepatitis C (HCV) may be at risk of irreversible liver damage.
  • Listeria. People who receive LEMTRADA have an increased chance of getting a bacterial infection called listeria, which can lead to significant complications or death. Avoid foods that may be a source of listeria or make sure foods that may contain listeria are heated well.

These are not all the possible infections that could happen while on LEMTRADA. Call your healthcare provider right away if you have symptoms of a serious infection such as fever or swollen glands. Talk to your healthcare provider before you get vaccinations after receiving LEMTRADA. Certain vaccinations may increase your chances of getting infections.

Inflammation of the gallbladder without gallstones (acalculous cholecystitis):

LEMTRADA may increase your chance of getting inflammation of the gallbladder without gallstones, a serious medical condition that can be life-threatening. Call your healthcare provider right away if you have any of the following symptoms:

  • stomach pain or discomfort
  • fever
  • nausea or vomiting

Swelling of lung tissue (pneumonitis): Some people have had swelling of the lung tissue while receiving LEMTRADA. Call your healthcare provider right away if you have the following symptoms:

  • shortness of breath
  • cough
  • wheezing
  • chest pain or tightness
  • coughing up blood

Before receiving LEMTRADA, tell your healthcare provider if you:

  • are taking a medicine called Campath® (alemtuzumab)
  • have bleeding, thyroid, or kidney problems
  • have HIV
  • have a recent history of infection
  • have received a live vaccine in the past 6 weeks before receiving LEMTRADA or plan to receive any live vaccines. Ask your healthcare provider if you are not sure if your vaccine is a live vaccine
  • are pregnant or plan to become pregnant. LEMTRADA may harm your unborn baby.  You should use birth control while receiving LEMTRADA and for 4 months after your course of treatment
  • are breastfeeding or plan to breastfeed. You and your healthcare provider should decide if you should receive LEMTRADA or breastfeed. You should not do both.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. LEMTRADA and other medicines may affect each other, causing side effects. Especially tell your healthcare provider if you take medicines that increase your chance of getting infections, including medicines used to treat cancer or to control your immune system.

The most common side effects of LEMTRADA include: 

  • rash
  • headache
  • thyroid problems
  • fever
  • swelling of your nose and throat
  • nausea
  • urinary tract infection
  • feeling tired
  • trouble sleeping
  • upper respiratory infection
  • herpes viral infection
  • hives
  • itching
  • fungal infection
  • joint pain
  • pain in your arms or legs
  • back pain
  • diarrhea
  • sinus infection
  • mouth pain or sore throat
  • tingling sensation
  • dizziness
  • stomach pain
  • sudden redness in face, neck, or chest
  • vomiting

Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of LEMTRADA.

You may report side effects to the FDA at 1-800-FDA-1088

Please see the full Prescribing Information, including Boxed WARNING and Medication Guide, for additional Important Safety Information.

In partnership with LEMTRADA / Sanofi Genzyme

©2018 Genzyme Corporation. All rights reserved. LEMTRADA registered in U.S. Patent and Trademark Office. SAUS.LEMT.18.02.1314. Last updated: 06/2018

Top photo: Twenty20/Sasha Nell

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