There is a growing level of importance in being engaged in your own health and treatment, rather than being a passive recipient of care. Advances in technology now provide more ways that you can be involved with the management of your lupus and studies have shown that this can improve confidence and communication with healthcare providers, and long-term health outcomes.
Here are some tips for utilising technology;
- 80 percent of internet users seek online health information.
- 77 percent of patients used a search prior to booking an appointment.
- 66 percent of internet users look online for information about a specific disease or medical problem.
- 44 percent of internet users look online for information about doctors or other health professionals.
“I use technology primarily for increasing knowledge about my SLE and just about everything else.”
However, Google can be the best friend or worst enemy of someone with lupus. It is important to bear in mind that some websites are much more reliable than others. It is often wise to stick to websites managed by organisations with a good reputation.
When looking for health information in the UK, one signal of high quality information is if it displays The Information Standard logo. The Information Standard is a scheme managed by NHS England which certifies organisations who can prove that their information is of a high quality. Organisations such as LUPUS UK, NHS Choices and the National Rheumatoid Arthritis Society (NRAS) are all members.
You can read some further helpful guidelines for finding good health information online HERE.
Staying connected with others and receiving support
Establishing and maintaining quality relationships with friends and family can be made much easier by using technology. Keeping up with people through social media sites, email and phone calls may require relatively little effort when you are feeling very fatigued and unable to meet in person.
“I use my iPad to chat to my friends and family on FaceTime; it makes me feel more sociable on those tired days.”
“I am quite switched on with technology, but my hands are claw-like so I can’t use a laptop very easily. I use an iPad with a dibber; it’s a lifeline for me as I can’t get out much.”
“Each day I send and receive daily words and prayers of encouragement via WhatsApp. If I can’t make it to church on a Sunday I take part in a live service from New York. I have the Bible app which I can read wherever I am.”
“I play scrabble online with friends when I’m too tired to visit them.”
Connecting with other people affected by lupus
In addition to staying close with your existing friends and family, many people find it helpful to connect with other people affected by lupus. It may not just help your wellbeing, but can also provide rewarding opportunities to help others. LUPUS UK has a presence on a number of social media sites, but the best place to chat with other people affected by lupus is our HealthUnlocked Community Forum.
The LUPUS UK HealthUnlocked Community is home to a very friendly and supportive group of people who actively welcome new members and provides helpful responses to people’s questions. Members enjoy being able to share their experiences and questions anonymously (something that is more difficult on Facebook), with people who understand what they are going through. Lots of members have commented on how it is really reassuring to be able to talk to people going through the same experiences; it leaves them feeling a lot less alone. You can learn more about the community HERE or join HERE.
“To be honest, without this online group I don’t know where I’d be. I have learnt so much, made friends and had unlimited support from some very special people, which in turn has led me to meet a fellow member face-to-face; a valued friendship. Lupus can be a very lonely place but this group stops that. Thank you to everyone at HealthUnlocked and LUPUS UK and all its online members. You make dark days more bearable and give me the strength and courage to keep pushing forward.”
“I am thankful that I am able to use this forum to offload to people who don’t judge and who understand what I’m going through. They give me great advice and support and I wouldn’t have any of that if it wasn’t for technology.”
A survey of members of the LUPUS UK HealthUnlocked Community revealed the following;
- 46.4% of our members ‘agree’ or ‘strongly agree’ that since joining they are “more confident managing their disease on a day to day basis”
- 39% of our members ‘agree’ or ‘strongly agree’ that since joining they have had “better interactions with their doctor or other health professionals”
- 15.4% of our members ‘agree’ or ‘strongly agree’ that since joining they “use clinical services less (e.g. visiting hospital or local doctor)”
Getting the most from your smartphone/tablet
The latest figures show that around 7 in 10 adults in the UK own a smartphone. There are loads of apps available to download, which have an almost endless range of uses. With help from people on the LUPUS UK Facebook page and our HealthUnlocked community, we’ve pulled together a short list of some apps that people have found helpful in managing aspects of their lupus. They range from apps to help you track symptoms (and improve the information you provide to doctors), to relaxation apps to help with sleep and de-stressing.
Specific lupus apps
The Lupus App – Android (free)
– Helps you to know deep insights of your disease
– Manage your medications, Appointments
– Set reminder(s) for the above
– Quickly add your symptoms on the go
– Add a photo along with symptoms
– Contact/email your Rheumatologist
Lupie Diary – Android/iOS (free)
– Set reminders for taking your medication and attending medical appointments
– Keep track of your current prescriptions, symptoms, diagnoses, and contact information
– Easily access information about the disease
– Learn more HERE
“The health app on the iPhone is great for storing information, activity and links into apps for healthy eating, mindfulness and sleep patterns. Also the ID card logs your illness(es) and what you are allergic to; it’s great because ambulance crews or whoever can access that along with emergency contact numbers.”
“The iPhone has a medical ID section and I keep it updated on my diagnosis and all meds being taken as well as next of kin details for emergencies and drug allergies etc. Now, when I get asked about current meds, I bring it up on screen and hand it to whoever needs it safe in the knowledge I’m not going to forget to mention one of them.”
Pain management apps
My Pain Diary – Android/iOS (£2.98/£4.99)
– Learn how much you are affected by humidity, barometric pressure, temperature, precipitation and more.
– Identify triggers, remedies, patterns and trends.
– Compare multiple conditions and metrics on a single, interactive graph which makes finding correlations easy.
– Keep an accurate record of your condition for your doctor.
– Email or print a report for you and your doctors.
– Track your complex medical condition multiple times a day.
– Track your simple pain condition as it occurs.
“I’ve just started using My Pain Diary 2 (paid version). Before that I used Symple, but it was expensive to buy the full editable version and the free version didn’t have enough versatility.”
Manage My Pain Lite – Android (free)
– Track your pain using a powerfully customisable yet simple entry screen.
– Get insight to your condition through statistics, charts, graphs, and calendar views.
– Sync with the cloud to safe-keep your records and keep all your devices up to date.
– Share what you’re going through by creating evidence-based reports for diagnosis, treatment, and claims.
– Personalise your account by recording your medical and personal characteristics.
– Get support from a responsive team and detailed user guides.
Light sensitivity apps
UV Index Widget – iOS (free)
– The app instantly shows the current UV Index (UVI) at your location.
– Tap and hold to see the peak UV Index for today.
– You can also see when the Sun rises and sets, and at what time the UV Index is at its highest level.
– The accompanying widget will show the same information on your Today screen.
– You can also receive notifications when the UV Index goes above a certain level.
– The app will automatically store the maximum UV Index for your location, once each day, in the Apple Health app.
– The app will work anywhere in the world, and is a perfect companion whether you are at home or travelling.
UV Index Widget – Android (free)
– UV Index, daily max UV for any location all around the globe.
– Protection time, time till burn and SPF recommendation for your skin type.
– Clouds & Area Reflection factors consideration.
– Weather updates.
– UV Index alarm notifications and useful sun safety advice.
– UV Index widget for phone and tablet.
SleepBot – Sleep Cycle Alarm – Android/iOS (free)
– Smart wake up: Gradual alarm based on movements and noise within 30 minutes before first alarm.
– Multiple alarms capability: Only smart alarm that lets you set multiple alarms as alerts or precautions.
– Movement tracking: Adjustable sensitivity, easily compare with sound graphs.
– Sound tracking: Detailed sound graphs let you play back noise with a tap.
– 10 custom designed alarm soundtracks designed for Smart Wake-up.
– Background mode: sleep tracking continues even in the background.
– Long-term Trend graphs: length, sleep/wake times, pattern for sleep quality over time.
– Statistics: Analyse any time range to see sleep debt, average sleep, etc.
– Ambient Noise: Soothing soundtracks to help you gently fall asleep.
– Sleep Help: Find out how to fall asleep or stay awake from quick action lists.
– Export: Share sleep entries, graphs, and stats as images or csv.
Harmony – Hypnosis Meditation – Android/iOS (free)
– Enhance your ability to relax, sleep well and focus.
– Reduce anxiety, tension and stress.
– Build on your core sense of inner strength and power.
– Gain more confidence and inner control.
– Save time and achieve your goals more quickly and easily.
“I have apps to help me with combating stress and pain. The apps are hypnotherapy combined with meditation. So all I do is lay down plug my headphones in and relax. I am finding them very helpful.”
“Glenn Harrold Hypnosis App helps me with sleep and relaxation; it has been invaluable to me.”
“I use the vibrating alarm on my Fitbit to remind me to take proper, regular breaks. I also really love the Headspace app for meditation and mindfulness.”
- Prescription list
- – Name
- – Medication Alias
- – RX Number
- – Instructions
- – Reason
- – Description
- – Side Effects
- – Start date
- – End date
- – Schedule pattern
- – Reminder Times / Alarm set
- – Snooze
- – Taken at
- – Refills Remaining
- – Current inventory
- – Expiration Date
- – Doctor
- – Pharmacy
- Daily Schedule
- – Time of Day
- – Dosage
- – Calendar view
- Take as needed (PRN)
- – Amount taken
- – Time taken
- – Last 10 doses / 24/hr
- – Med Log
- – Daily view
- – Calendar view
- – Able to manage
- Vitals Tracked
- – Part of day
- – Exercise
- – Temperature
- – Weight
- – Pulse
- – Glucose
- – HbA1c
- – Pain levels
- – Blood Pressure
- – Oxygen
- Exportable Reports
“I’ve been trying Med Helper for the past few days and it’s great!”
- Record food, drink, medication, stress, exercise, environmental factors, and other activities and notes.
- Record any symptoms you experience (including intensity, duration, and notes).
- Record your energy, sleep quality, and bowel movements (using Bristol scale).
- View and modify your diary entries.
- Create and modify your own symptoms.
- Export your food diary as a HTML report for printing or sharing (note: requires SD card).
- Add or modify your own drinks, foods, medications, exercises, and other activities.
- Add or modify meals with your own ingredients.
- Add or modify detailed ingredients to any item – food, drink or medication.
- Analyse your food diary to see what might possibly be triggering your symptoms.
- The analysis window can be set between 1 and 72 hours.
- Optionally set the date range to analyse.
- Results show a list of possible suspects for a selected symptom.
- Detailed results for each suspect includes more specific information, a histogram and trend chart.
“I use my iPhone and iPad daily. I use them to shop when I’m too tired or sore to go to the shops. I love Amazon Prime and next day delivery.”
“I do online shopping because I can’t get out and do my own.”
Getting the most from medical appointments
Using your smartphone or tablet can be very helpful for getting the most out of appointments with your GP or consultants. You can use some of the apps mentioned previously to track your symptoms and report those that have been troubling you the most and you can also take photos of any visible symptoms such as rashes or swelling in case they are not there on the day of your appointment.
“For appointments I always carry my iPhone and iPad, which I use to record all the things I wish to remember to say or was said to me. My consultants are always impressed that I have so much recorded regarding the treatment I have had and the dates (it takes a while to go through my notes even on the computer). Whilst waiting to be seen I can read a book or play a game on either device.”
“I use notes on the iPad and iPhone to remind me of things I need to ask the doctors, as I always forget something. If I have a symptom that is occurring regularly I note it, as I always forget when I’m there. Photos of symptoms help the doctors actually see what you mean and help a lot.”
“I take dated photos of my swollen joints and various rashes for my rheumatologist to see, which says he finds useful.”
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***
Thank you so much to everybody who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.