June's Topic of the Month - Using Technology (We want to hear your tips and experiences)

June's Topic of the Month - Using Technology (We want to hear your tips and experiences)

Our 'Topic of the Month' discussion for June is, 'Using Technology'.

Technology is a massive part of most people's lives these days and there are now many ways that it can help you look after your health. Smartphone apps, wearable technology and online forums all offer ways to become more involved in the management of your health, help to track your progress, allow you to become more educated and receive support.

We want to hear if you have any tips for how technology can help with the management of lupus. Do you find certain apps helpful for reminding you to take your medication or tracking your symptoms? Do you find online forums give you more confidence? Perhaps technology has a negative impact on you, such as making it difficult to sleep?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

28 Replies

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  • With my trusty Ipad Paul as I'm totally seronegative I only have homogenous ANAs I have a tiny Arachnoid cyst and spina bifida occulta with psoriasis and PsA plus transvers myelitis from 2005 when I was discharged from a private hospital running a temperature. Then an abscesses resulted and wasn't properly dealt with. If you have an arachnoid cyst it can make the side of the body weak. Look up the Brain & Spine UK A very helpful organization. I do hope this helps others too.

  • I use my I pad daily. To shop and to keep in touch with family and friends. When I flare it's so hard to get out and about so I find my I pad is brilliant.

    I also 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.

  • So you mainly use your ipad to prevent yourself from being isolated when you can't get out and about? That's great.

    Are you able to recommend any apps in particular that you use for hypnotherapy/meditation?

  • I use 2 apps. Buddhify & Calm. I to find ipad helps with isolation. I would be missing lots if I didn't utilize it.

  • That's great. Thank you for sharing.

  • I use my iPhone and iPad daily. I use them to shop when I'm too tired or sore to go to the shops, love Amazon prime and next day delivery 😀. I use it to chat to my friends and family on FaceTime, makes me feel more sociable on those tired days.

    I am thankful that I am able to use this forum and others to offload to people who understand what I'm going through, who don't judge. They give me great advice and support and I wouldn't have any of that if it wasn't for technology.

    X

  • Using your ipad to shop is a great idea. Thank you for sharing.

    I'm glad to hear that you find this forum helpful :)

  • I'm on the forum for Scleroderma but I find technology very helpful.

    I am quite switched on with technology, but my hands are claw like so can't use a laptop very easily so I use an IPad with a dibber, its a lifeline for me as I can't get out much. This forum is great, so many interesting posts. I use my calendar for appointments, online shopping, emails, it's so good for keeping in touch with people in this busy world. As long as you are careful when you use the Internet it is very useful and set your privacy settings properly.

  • I'm glad to hear that your ipad has been so beneficial and that is a great tip about being careful online!

  • I use technology primarily for increasing knowledge about my SLE and just about everything else. I play scrabble online with friends when I'm too tired to visit them. I have an allotment for a post medical retirement hobby and if I'm not well enough to go and tend the garden, I plan and design using technology. If there's a down side, social media reminds me daily of what work, friends, activities etc I have lost because of SLE. That can be depressing.

  • These are the tech that help me most:

    1. My iPad:

    For bringing to doctor appts...so I can show pictures of visible signs & symptoms...but also do I can happily distract myself in waiting rooms reading kindle, or visiting this forum or whatever

    for deciphering the Doctor Speak in consultant's reports

    For researching my overlapping conditions, and storing studies etc in IBOOKS

    For taking part in our wonderful LUK forum where the solidarity & into sharing make a huge pos diff

    For messaging & emailing lupus friends

    2. Our iMac & printer:

    I like to print off health-related studies & papers....so I can jot in the margins & underline stuff...I don't think I'll ever go completely paperless

    For preparing notes before I present at clinic appts

    For preparing debriefing notes after clinic appts

    For filing every document related to my case in digital form by clinic

    3. My digital camera:

    For taking pics of visible signs & symptoms and sending them to my iPad so I can show doctors during appts,...my camera is compact enough to even photograph awkward places like the inside of my mouth. I have a v simple digital automatic

  • Hi Barnclown, thank you so much for sharing your experiences :)

  • Hi I use my iPhone and iPad everyday, I do online shopping because I can't get out and do my own, use it for social media so I'm not lonely and to get support from groups for lupus, I also use a symptom tracker daily that can generate a report for my Drs

  • Hi lupie-Cathy,

    Thank you for sharing. May I ask what symptom tracker you use?

  • 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.

  • Thank you :)

  • I use MacBook Air when I'm at home during the day and my iPad and iPhone at all other times. I also use a digital camera.

    I do all my shopping except grocery online and online banking.

    For appointments I 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.

    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 can see and talk to relatives and friends living in other parts of the world and any time of the day or night. I love technology and would miss it if it was taken away.

  • Thank you for sharing your experiences Maureenpearl

  • I use my iPhone, iPad & laptop to access this wonderful support group. There is no local group for me. 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. That has been wonderful. A valued friendship. Lupus can be a very lonely place but this group stops that. So thank you to everyone at HU & 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'm so glad that you are able to benefit from the support in this community forum since you don't currently have a local group.

  • Yep couldn't live without the iPad .. just changed it to a mini to make it lighter so more flexible. My kindle goes to all hospital and docs appointments with me (will now take iPad instead) so I'm not bored while waiting for my appointment.

    I use notes on the iPad and iPhone to remind me of things I need to ask the docs as I always forget something. If I have a symptom that's occurring regularly I note it as I always forget when I'm there. And photos take at the time to be shown to doctors later so they can actually see what you mean help a lot. I also find myself using notes more for recording things when someone says "have you got a pen" on the phone Etc - I struggle holding pens and writing is painful so it's quicker, easier and won't be put down somewhere I can't remember.

    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.

    Online shopping is essential - both food and everything else.

    Internet for interaction and research Etc obviously. Things like Facebook enables me to keep up to date with friends without them noticing that they don't see me so much.

    Gadgets I have everywhere ... slow cookers and steamers so I don't have to bend to the oven, electric can openers, nutribullet so I can liquidise smoothies when my mouth ulcers are bad, various jar grippers and cutting equipment to help etc. not sure if that's the kind of technology you're thinking?

    In my car I couldn't cope without climate control - it stops me passing out in heat in the summer when I can't open the windows and heats up quick in the winter to help with raynauds. I also have a little power wheel to help me steer better and ultra light power steering is essential.

    Electric rechargeable hand warmers ... whoever invented them I will happily marry.

    In my office I have a roller bar mouse so that I don't have to grip with my hand - the reduction in pain level is phenomenal.

    Even my heaters help. I have all electric to my house and my old night storage heaters left me suffering badly. Between my raynauds and my thyroid I found I was totally unable to temperature control and once I got cold I simply couldn't heat up. Dimplex now produce a range of night storage heaters called Quantum. They have a thermostat on them and can be set to maintain a constant room temperature of 20c. They work out themselves how much heat to take in each night and can be set when going away on holiday to keep a minimal background heat but come back on the day you get back whereas before if I went away I was always freezing the night I got back as I hadn't taken in heat the night before when I was away.

    Hive lighting system is my latest addition .. I can dim the lights to whatever percentage I need based on now sensitive or tired my eyes are at that time. Combine it with Alexa on the amazon echo and I don't even have to get up and walk across the room to do it as she does it for me by voice instruction.

    And my current favourite use of technology .. a friend has given me his dad's mobility scooter after he died. As my fiancé has been unable to walk our 1 year old Labrador due to his own health recently it left us with a problem. I can now be seen at certain times of day (not sunny times basically!) zooming around the paths at the local park with a big black Labrador running along on a lead in front of me!! He gets the exercise he needs and I get to not be in pain and have fun on my "go kart" at the same time. One of the saddest parts for me of my mobility getting worse recently has been the inability to enjoy a weekend walk with my other half or when we go on holiday I'm either putting myself in extreme pain pretending I can cope or we aren't doing things together as I'm so limited on how far I can walk, I think this particular piece of technology is going to make life a whole lot more interesting going forwards 😊

  • Oh and online prescription repeats .. it sends me an email each month to remind me to reorder which I would often forget otherwise and this way I don't run out of my meds.

    Actually i'm just looking and I use so many gadgets and technology for everything without even being aware of it .. I've even just received an email for my latest consultants appointment and dragged it straight into my calendar which updates my iPad, iPhone and my computer and sets it to remind me the day before to make sure I don't forget it. I can share it with my other half so he knows when my appointments are. I can access my blood tests online and see a limited amount of my medical history which enables me to review how I'm doing. The amount that can be done online now is really useful for me.

    But it doesn't help when I just thought of something else and by the time I come to type it I can't remember what it was .. I need technology to help with that lolololol

    EDIT: just remembered it's my scanner. Tomorrow morning I will be scanning all of my physio notes from work to try and help with my hips 2 years ago and emailing them to my new consultant in advance of my first appointment with him so he can see what's already been tried and failed and hopefully save wasting time trying things that we know won't help.

  • Wow Mifford! Thank you for sharing in such detail how you use technology to help you manage better. That is very helpful.

  • 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 can write what medical illness you have and what you are allergic to great for people if they pass out or something has happened the ambulance or who ever can access that with emergency contact numbers.

    This website also coming to an app has made me rejoin I became a pain going on the browser and half the time I would forget.

    I would find it more useful with more apps for auto immune systems how to manage, write down a diary bloods and everything in one handy app. Maybe there is one but I haven't found it.

  • Thank you for sharing your experiences Jess_doyle. I'm really glad that you are finding the new app for this site helpful :)

    Look out for our blog article at the end of this month and we will share information about any apps we find :)

  • I use technology in lots of ways.

    Very useful for research into different treatment approaches.

    I keep contacted to friends though Facebook.

    I listen to audio books via my kindle, as I find it difficult to hop books for long periods and reading irritates my dry eyes.

    I get support and advice from health unlocked and lupus UK.

    My access to the Internet is exclusively via my android phone and my kindle, I don't have a lap top at present and the desk top causes me no end of pain.

    I also take dated photos of my swollen joints and various rashes for my Rheumatologist to see, which says he finds useful.

    I keep looking for an app to help me keep check of my medication and my symptoms, I noticed that there trials using apple, I hope that there will be an android version soon. The apps that I have found so far are not fit for purpose.

  • Thanks for sharing your experiences creaky. Hopefully we will have some app suggestions in our article which will be useful for you.

  • Thanks paul

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