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Hints & Tips

Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain

When you’re going through a tough time, health-wise, it’s easy to become so focused on following doctors’ orders that you forget about the everyday things you should do to take care of yourself. But positive lifestyle habits are a powerful part of the plan, not to mention good for your overall health.

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We reached out to our Facebook community for their hints and tips on life with an invisible illness.  Here are their shares

 

 

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Only do something active for a set amount of time (gardening, washing car, vacuuming….) then stop!!!! Even though you may be feeling good today, you will regret it for the rest of the week if you go over your limit. - Hayley Cox

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  • Drink no less than 2 litres of fluids daily.

  •  Avoid triggers in my case it could be cheese, Coca Cola.

  • Find a good app for weather that includes atmospheric pressure, and check the forecast. On the days where the pressure changes are significant +/- 4hpa (depending on your tolerance), avoid any strenuous activities during those days.

  • Avoid staring at your phone or computer for an extended period of time. If you have to, then stop every half an hour or so and do some neck stretches and exercises.

  • Eat healthy foods and avoid junk food.

  • Mild exercise if you can.

 

A lot depends on the individual. We all have different triggers. - Sue Meyer

  • If you start to feel a flare up coming on, stop and take a break, have a rest

  • If you're muscles are really sore and tight and you're having trouble relaxing, have a bath with 3 bags of green tea and 4 drops of lavender oil (I tried this and it was amazing)

  • rosemary tea sharpens your mind and helps you concentrate and be more productive

  • try to stretch every day, but it's ok to have a break for one day in between if you need it

  • if you want to build up your strength/stamina, do it slowly

  • regular massages if you can afford it, but if you have a partner get them to give you a rub, it's so helpful

  • don't push yourself too hard

  • if you're feeling guilty remember that your health and happiness is important and while some may not understand, remember you're not lazy, you're unwell.  - Katelyn Sharman

  • Buy a towelling robe for times you’re too fatigued do dry yourself after a bath/shower. Pop it on and reset.

  • Buy precut veggies and freeze

  • Buy a shower chair or stool

  • When you have energy to cook, make double and freeze

  • Live in a single story home. Stairs kill me.

  • Apply for a mobility pass for parking if you’re badly affected by pain and fatigue

  • Magnesium is your best friend. Best absorbed through skin, so oil on skin or bath (or swim in magnesium pools) in it.

  • Get the pharmacy to make webster Paks of your meds. - Rona Boulton

  • Do something every day that makes your heart sing,

  • surround yourself with good friends and a decent medical team.

  • Pace yourself even on your good days.

  • Be kind to yourself  - Suzie Holland

Self-Advocacy:

  • Educate yourself about your illness so you can explain it clearly to others.

  • Develop a concise and easily understandable explanation of your condition for when people ask.

 

Communication:

  • Be open and honest with friends, family, and colleagues about your limitations and needs.

  • Share information about your condition, including any specific symptoms and triggers.

 

Set Boundaries:

  • Learn to say no when you need to conserve energy or prioritize self-care.

  • Establish boundaries to protect your physical and emotional well-being.

 

Use Technology:

  • Utilize apps and tools to help you manage symptoms, medications, and appointments.

  • Consider wearable devices or alerts for reminders and emergency situations.

 

Flexible Work Arrangements:

  • Explore flexible work options, such as remote work or adjusted hours, to accommodate your health needs.

 

Seek Support:

  • Connect with support groups, either in-person or online, where you can share experiences with others facing similar challenges.

  • Consider therapy or counseling to help cope with the emotional aspects of living with an invisible illness.

 

Educate Others:

  • Provide resources or literature to those close to you to help them better understand your condition.

  • Encourage empathy and compassion by explaining the unpredictable nature of invisible illnesses.

Practice Self-Care:

 

  • Prioritize self-care activities that promote physical and emotional well-being.

  • Listen to your body and rest when needed without feeling guilty.

 

Plan Ahead:

  • Anticipate potential challenges and plan accordingly. For example, bring medications or snacks when going out.

  • Have a contingency plan for unexpected flare-ups or emergencies.

  • Medical Alert Information:

  • Consider carrying a medical alert card or wearing a bracelet that provides essential information about your condition in case of emergencies.

  • Celebrate Small Wins:

  • Acknowledge and celebrate your achievements, no matter how small. Living with an invisible illness often involves daily battles that others may not see.

  • Be Patient with Yourself:

  • Accept that there will be good days and bad days. Be patient and kind to yourself on challenging days.

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