Living with a chronic disease can be exhausting, affecting your health, well-being and daily life.
For people living with systemic mastocytosis (SM), juggling the symptom burden while staying on top of family and work responsibilities can be overwhelming at times. But learning ways to stay organized and to plan for any unexpected SM-related disruptions can help reduce stress and increase enjoyment.
What is SM?
Systemic mastocytosisMastocytosis Rare disease caused by the buildup of mast cells. Cutaneous mastocytosis primarily affects the skin and is more common in children, while systemic mastocytosis affects internal organs and is more common in adults. (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
The effect of SM on daily life
SM creates a burden that reduces a person’s capacity to function normally in daily life. This can create stress and anxiety, which is not ideal for the effective management of symptom triggers.
Read more about SM signs and symptoms
It can be challenging to manage your SM symptoms such as fatigue, insomnia, skin flushing, itchiness or hives, vomiting, nausea, abdominal pain, diarrhea, bone pain, joint pain, palpitations, mood changes, brain fog and even anaphylaxisAnaphylaxis A severe allergic reaction that can turn fatal without treatment. Patients with SM are at a higher risk of developing anaphylaxis.. It’s stressful to be constantly avoiding triggers through diet and lifestyle changes.
Add to that your medical appointments, potential medication side effects and unexpected symptom flare-ups, and you have a recipe for making daily life a struggle.
Learning to live better with SM
Effective time and task management skills can help you stay organized and live stress-free with SM.
Go digital: Take the pressure off having to remember appointments, especially if you are experiencing any level of brain fog.
- Use a calendar app.
- Set reminders on your phone for appointments or a list of things to do.
Plan ahead: Looking forward will help you take control of your tasks.
- On the first of the month, have a look at what is planned. Make sure you are not overcommitting yourself or forgetting anything important.
- Every Sunday, map out the week ahead. What are your family, work, medical and personal commitments or responsibilities? How will you get there? Can someone go with you? How tiring will they be? Is there likely to be a risk of potential symptom triggers? What can you do to avoid them?
- Be prepared for the possibility of symptom flare-ups. Have antihistaminesAntihistamines Medications that block the effects of histamine, the chemical found in mast cells that is responsible for many of the symptoms of SM, as well as many allergic reactions. or epinephrineEpinephrine Also called adrenaline, this hormone is used in emergency situations to reverse symptoms during a severe allergic reaction (anaphylaxis). doses at hand. Be ready to be flexible if you have to cancel or reschedule.
- Don’t forget to factor in rest time or nap time during the day, as well as your evening sleep routine. Once it is part of your schedule, it will easily become part of your day.
Learn to delegate: Part of maintaining productivity is sharing the load.
- Learn the habit of delegating tasks to family, friends or coworkers.
- Communicate your needs, and ask for help.
- Stress and exhaustion do not help productivity. Know your limits; be kind to yourself, and learn to say “No.”
