Tech that makes my home easier

I’ve recently made some changes to my bungalow to make life easier for me. People think smart homes are for tech nerds or lazy people. In all honesty I think smart homes are great for people with disabilities. I know it’s given me a lot more independence over my own home.

One the plus side too thankfully my bungalow is small so there are few rooms and windows when it comes to decorating making it a bit cheaper and with it being a new build property and small as well it doesn’t take long to warm up and it retains the heat.

Smart lighting, switches and plugs

I’ve always had smart lighting in my home right from when I moved in nearly two and half years ago. Initially I just had smart bulbs in the lamps to make it easier for my care team to control the main lights in the front room and bedroom. However after a while I found for myself I needed smart bulbs in my main lights for my own ease of using my home. As a compromise I bought smart light switches for the bedroom and front room so at least there was something “normal” someone could press to control the lights rather than trying to talk to my Apple HomePods.

For smart lighting, light switches and smart plugs I like the Philips Hue system. I just have a bridge so it connects to Apple HomeKit. 

What I like about all the Philips’ products is that if that if any of the devices are accidentally switched off, say someone turns off the lights switch for my main light or my smart plug gets turned off. Just turning it on reconnects it all and it’s back up and running no need to do anything else. 

The smart bulbs I had in my lights back in my bedroom at my Dad’s however if someone turned off the light switch I’d have to reset the whole system and do a total reboot and also reconnect it back onto Apple HomeKit, it was quite annoying and a faff to do as sometimes you’d have to reboot it a couple of times. 

Smart light switch

 I’ve found the Philips Hue system is much better and they have a lot of products in their range, such as light switches. The only downside is that their products are often more expensive so their smart plugs are more expensive than other smart plugs that you can buy. But like I said the quality and connectivity is much better.

The smart light switches are handy. They act similar to a normal light switch and the you can dim and brighten the light on the switch and flick through lighting modes too. The controller is magnetic so can come off as well.

Smart lighting really helps as I can control the colour of the main lights on my phone (I’m not keen on the new automatic adaptive lighting colour as I don’t like white lighting). I can voice control the lights and lamps coming on and off and how dim or bright I want them to be. I can do this on my Apple HomeKit app too. I have set scenes too like Philips Hue has a ‘reading’ scene with the lighting at the right colour and brightness for reading. Or I have my Nightlight scene with the lamp set at 1%. I have quite a few scenes and I select what smart devices I want to be part of that scene. Leaving the house automatically everything turns off so I don’t have to forget about anything except the bathroom light. 

Being able to set my lights with my voice or phone I find really helpful and accessible as there are times when I can’t get out of bed turn off the main light, plus I’d have to install dimmer switches everywhere, as well lamps don’t dim but with a smart bulb they can.

Electric blind

I’ve recently had an electric blind put in my front room. Before I had a manual pull cord Roman blind and the pull cord was in an awkward position to reach and not just myself found it difficult to lower the blind. Getting an electric blind has made a massive difference. It’s so easy to lower at night as it’s set to stop at a certain point. Then in the morning I just press a particular button on the remote and it heightens to my ‘favourite’ position, as I don’t like it up all the way. It’s also easy to control to lower and stop more by just using the remote. Having an electric blind has been so much easier for my PAs too as if they’re leaving me in the bed for the evening it a lot easier for them to close the blind in the front room for me.

Front room remote control blind

Smart blind

Very recently I’ve had a smart blind put up in my bedroom. I only recently a few months ago found out about them and started looking into them and where I could get them in the UK. I went with the Eve Motion from my research as that was what was compatible with Apple HomeKit. (I found there was more options if you say had an Alexa or Google home system, like with my roller blind in my front room I could buy a bridge for that to connect to say my Alexa home system).

I can control it on my phone as well as with my voice. - I got a remote too just to make it easier for my PAs to control it. Already I’m finding it beneficial. When I wake up I say ‘Good Morning’, a scene on my Apple HomeKit and that heightens my blind a little so I can start adjusting to daylight. - Something I struggle with due to light sensitivity because of my M.E. Then on my ‘Daylight’ scene the blind opens up more so I can have enough light in my room like that or my Venetian blinds behind them can be opened if I can cope with the additional light.

My smart blinds have given me a lot more independence as I’m able to open them myself in the morning, I don’t have to struggle reaching over for the cord which a lot of the time I couldn’t manage. Also when my PA leaves me in bed for the evening she doesn’t close the blind for me now. The Venetian blinds are closed for me if they’re open but I can have daylight until I want to close the blind myself. I have a couple of scenes set on HomeKit like ‘Bedtime’ where the blind closes and the bedroom lamp comes on at a certain percentage. ‘Goodnight’ turns all lights and plugs off and closes my smart blind. Unfortunately I can’t link my front room blind into my HomeKit. It would be great to have that as as a smart blinds too one day but for now it’s not needed (plus I love the print on my electric blind).

I find the blind gives me more control and independence. Like today I was resting and wanted less light in my bedroom. So easily I could go on my phone and lower the blind to just where I wanted it so I could rest and not be bothered by the light. But now I’m more rested I’ve adjusted on my phone the hight of the blind to let in more light. I don’t have to struggle reaching over for the pull cord and manually lifting and lowering the blind. It just makes like easier for me as well as giving me more control and independence. It’s another thing I can do on my own now.

Good morning scene on my bedroom smart blind

Hive smart thermostat 

Combi boiler Hive thermostat

This is something I’ve wanted in my home for a while but my housing association put in a lot of rules to me installing it so I put off getting it. I wanted it last winter but because of this I didn’t go ahead. Then I decided to go ahead and get it as I envision myself living here quite a while hopefully so I’ll get my money’s worth out of it and it’ll better me the sooner I can get it.

I used a heating company, the one my housing association use and I asked them to install it and the installation included all the Hive equipment so I definitely got my money’s worth as I was looking at a much smaller and cheaper model than the one I have now and I didn’t realise I needed all the other bits that came along with the installation alongside the thermostat itself.

Already with it getting a bit chilly I’ve made use of my smart heating system. It’s set up like everything else on my Apple HomeKit so I can voice control as well as control the heating on my phone. Both on the Hive app and on HomeKit. There’s also ‘shortcuts’ set up which are voice commands for certain settings like boosting the heating to a set temperature for an hour (more on shortcuts below). I also have my heating set up to ‘scenes’ on my HomeKit like leaving the house or ‘Goodnight’ turns the heating off. More towards winter I’ll add the heating to other scenes like ‘Good morning’ I might have the heating come on for a short while to warm my bungalow up.

Like with my smart blind my Hive gives me more independence. If a carer is leaving me in bed for the evening if I’m having a bad day instead of them closing the blinds and leaving me cold as they’ve had to turn off the thermostat I can now do both of these functions entirely on my own and when I want too.

Dyson hot+cold fan

I can voice control my Dyson fan through voice controls sets up via shortcuts I’ve created. So when I ask Siri such as my HomePod ‘turn on the fan’ it comes on a cooling mode at level three. If I ask Siri to ‘turn up the fan’ it will increase the fan to number six. I also have ‘turn on night mode’ and the fan will turn on that setting. I have commands for the heater on the fan too but now I have my Hive heating I never use it so I’m considering getting rid of my hot+cold fan which I needed when I bought it but now I more just need a Dyson cooling fan.

HomePod

Front room HomePod

My two Apple HomePod mini’s also really help and they can do many things too that make life easier for me. I have one located on top of my bedside and the other on the worktop in the kitchen so they both cover my whole home.

I use them for timers and alarms for things like cooking, reminders (such as 1pm to remember to each), pacing to help manage my energy levels and activity doing, reminders to go to the bathroom which helps me manage my catheter, getting ready such as if I have an upcoming video account and so much more. I can also know the weather as the temperature and humidity of my bungalow. When I’m unwell and in bed and can’t speak loudly I can intercom to the HomePod on the kitchen counter to speak with my PA/carer; I find this really helpful. I can ask the HomePod to do many other functions like add things to my shopping list, add things to my list of to-do reminders list, request specific music or podcasts to play, I can look things up buy asking the HomePod questions and so much more. It also works as a speaker to play media.

The HomePod makes life easier for me like I said with the intercom. It also helps me because I can voice control via my HomePod many devices around my home. I can turn smart plugs on and off, ask lamps and lights to turn on at a certain percentages. I can open my blind at different levels and close it. I can control the heating as well. All these things give me so much more independence over my own home.

Like I wrote above I have set scenes on my Apple HomeKit too. So when I wake up I say ‘Siri Good Morning’ the HomePod will say good morning back to me and will do the functions set on that scene. If I say ‘Siri Good Night’ it will say good night back to me and all plugs and lights will turn off, the blind will close if it’s not already and the heating will turn off too. I have quite a few different scenes that when needed I just say to the HomePod ‘Siri [then the scene name]’ and then that scene will be set. Or I could say ‘Siri boost heating’ or ‘Siri turn on the fan’ which are voice shortcuts I’ve set.

I find being able to voice control my home via my HomePod really easy and it increases my independence, especially as there is so much my HomePod can do. I have more control over my home and I like how I can control the lighting in my home especially my bedroom. I can get my HomePod to make my bedroom a really low-light room which is great for my M.E., migraines and wanting to rest.

I love the little stand I have for my HomePod in my front room too and I love the yellow too as when I bought my first HomePod the options were only white or black so I went for a white one which is in my bedroom.

I can also control how loud the HomePod is, I often have it speaking on the lowest volume especially the one in my bedroom. I’ve also chosen what voice my HomePod talks to me as too. Sometimes my HomePod can be a bit sassy and get things inconsistent correct liked punched pies instead of bunched chives on my shopping list (it can be amusing what she comes up with on my shopping list). One good thing I like about it is that I find it doesn’t listen in unlike other devices like my Dad says about his Google Home system. My Dad gets targeted ads and product recommendations and things like that but I get non of that which does help to not feel like I’m being spied upon in my own home. 

So, in summary…

I am writing this from the perspective of someone who uses Apple products but I’m sure you’ll be able to find all of this products that will be suitable for someone with an android phone or who uses Alexa or Google Home etc.

As someone with disabilities all these products make my life so much easier and they’ve given me back my independence, especially independence over my own home as I want to be able to be capable of living on my own and doing as much for myself as possible. These products also even give me independence on my bad days when I lose independence in other areas of my life.

These products would benefit people with a wide range of disabilities from spinal cord injuries, limb differences, M.E., Multiple Sclerosis, Chronic Regional Pain Syndrome, POTS, stroke and more.

These products will especially help those who live alone or live in an annexe attached to their family home and want to live more independently like myself. It will mean less reliance upon carers, PAs or care givers which is an absolutely amazing feeling to be able to do these things without asking someone to do things for you. Like for me being able to put my own blind up and down in my bedroom now myself is amazing and I love having the control over my heating on my own now too as before there were many times I couldn’t even put the thermostat on as the box was too high. Now I don’t have to be cold or feel uncomfortable over the lighting in my bedroom.

These devices aren’t for lazy people, they give disabled people back their independence and control over their own homes.

Life with chronic pain

September is Pain Awareness Month.

Name a type of a pain and I feel it. I’m not exaggerating when I say that I feel different types of pain, having multiple diagnoses each coming with their own types of pain mean that I do just experience different types of pain. 

Some pain days are better than others. Some days my pain is manageable and all I need is my regular medication to keep my pain manageable. Other days I can’t settle and I feel in despair over my pain levels; when I’m throwing all my pain management tools at my pain but still nothing is giving me any respite. 

In my bullet journal for this year I have a ‘Year In Pixels’ where I colour code each day marking each day from green to yellow to orange to red for my pain and fatigue levels each day. My really good days I mark down as green, a typical day I’d mark yellow, a bit of pain where I’ve used some additional pain relief I’d mark orange and those horrendous pain days I’d mark down in red. I probably am quite positive when I mark my pixels and I try to reserve the red days for those times for when my pain is leaving me in despair.

I take different types of medications a supplements to tackle the different kinds of pain I experience. Muscle spasms that leave me rigid, nerve pain that feels like a white hot nail is being dragged down, headaches and migraines, bladder spasms, generalised pain that can leave me so hypersensitive it’s painful for anything to touch my skin or I just get “pain” especially in my legs that I find hard to describe.  

I’m generally quite hypersensitive anyway because of my severe M.E. Noise and light and sometimes touch all cause me physical pain. It’s hard to explain how things like noise and light can cause physical pain, it’s just another unexplainable ‘M.E. thing’. Just like how my legs just deeply ‘hurt’ but I can’t describe the pain other than just a deep and intense hurting pain accompanied with hypersensitivity.

I don’t like to just rely upon medication to help with my pain. I like to take a holistic approach to my care including treating my pain. I’m not a person who will just sit back and let my doctor write out prescriptions and expect that to do all the work.

Massage therapy is one big thing that massively helps with my pain and when there’s been gap in my regular appointments I really notice it. I notice that my circulation is worse, I have more muscle  spasms and ridgitity too, I have more pain in my joints and my headaches are worse. All things and more Hollie my massage therapist targets when she does my massage therapy. My massages aren’t the ones you’d have at a spa. What Hollie does and is trained to do is to treat people with chronic health conditions and the physical symptoms. No two treatments are ever the same as Hollie always targets what’s bothering me the most each time I see her. She uses additional things to help my symptoms while treating me too, like heated mitts, hot compresses and hot stones. I can’t begin to say how much of a benefit massage therapy has been to me over the past couple of years. I honestly think it’s kept me going so well that it’s the reason why I’ve had so few increases in my medication doses over the years. I’ve had no increases in my pain relief at all which is amazing.

I always use the term ‘pain relief’ instead of ‘pain killer’ as my slow release pain relief and my breakthrough pain relief medication does just that, it gives me relief from my pain, it doesn’t kill or eradicate my pain completely (as much as I would love that to happen). Sure they help a lot and allow me to just about function each day and to have some form of quality of life, however my pain will still always be there to some degree in the background and my breakthrough pain relief will just give me som respite, some relief from the extreme pain I’m in.

As well as massage therapy I find heat really helps my pain too. I enjoy my hot baths in the morning. I also have electric heat pads and a heated blanket. I have hot water bottle and also a long hot water bottle that I find good for bladder, hip, back and shoulder pain. I have a rechargeable period heat pad that I use for bladder pain.

When I can tolerate it I really find my weighted blanket helps too.

I used to be able to tolerate my TENS machine that I found really helpful. It had a heat up part to it as well which I found helped too. I haven’t tried it in a while to see if I can still cope with it. I have my acupuncture/TENS pens that I can sometimes tolerate too so maybe I could tolerate a short session on my TENS machine on a good pain day maybe?

I find mindfulness helps too. Doing body scans (I have to find the right body scan exercise that doesn’t make me think about each part of my body for too long) I find good and have been recommended to me by pain specialists. I find visualisation meditations really effective as well as breathing exercises and soundscapes too. I use these during rest periods as I find regular rest periods help to prevent me from ‘booming and busting’ which among other symptoms makes my pain levels worse.

Pacing is important to manage my symptoms including my pain levels.

I find distraction helps as it takes my mind off my pain. Activities like colouring, crochet, iris folding, reading or listening to books or podcasts, any low-level activity that doesn’t use much energy I find helps take my mind off my pain.

I find this especially in the evening when I’m struggling to get off to sleep due to pain. I call my insomnia due to pain ‘painsomia’. My pain does affect me at night as I just lay in bed and I’m more hyper focused and hyper aware or the physical sensations and pain in my body and as a result the pain probably becomes more psychologically intense. I take breakthrough pain relief as I physically am in pain but I want to do something else to help my pain as well so I’ll put my audiobook on and lay and listen to that, or if I’m more restless I’ll do something creative or I might get myself a hot drink. Things that help my sleep problems as well as my pain.

When I can, physical movement helps too. I find it helps to keep my body active. I do my daily physio or instead I might do some yoga aimed at people with chronic illnesses. I’ll just do what I can within my restrictions and I just do 5/10 minute routines and I find this helps me mentally too to know that I’m staying active to aid my wellbeing and add to that holistic approach. If I’m in pain I find it helps to just move, stretch, wiggle etc. especially when it comes to my joint pain. I just stay mindful whenever I do yoga not to do something that would worsen my Ehlers-Danlos as that would just create more pain! I’d love to try movement in water in the form of hydrotherapy.

Another funny thing about me and living with pain is I always save my number 10 on the pain scale. Just in case I’m ever in a situation when I neeed my 10 but I’m sure even when that day comes I’ll still say 9. Stupidly my local hospital are now using a 1-4 pain sale. If I save my 4 there they won’t give me adequate pain relief. The 1-4 system really doesn’t work for people with chronic pain as when I’m asked what my pain is like usually I really don’t sound believable. I probably sound like someone seeking the best drugs they have and they have little clue about my conditions so me explaining my needs and care to them only worsens the situation. Unfortunately when you live with chronic pain you often have negative experiences in healthcare. I have had some positive experiences however but it’s hit-and-miss.

More awareness of chronic pain and how it affects individuals and listening to patients on an individual level is much needed as we’re all affected differently. We all have different medical conditions that affect us differently and the pain part of the that affects us uniquely too.

Links:

Pain UK

British Pain Society

Pain Concern

Primark adapted bras review

Primark have launched a range of adaptive clothing which I’ve found quite exciting. There’s a few items in the range that I want to buy but I can’t afford them all in one go. So to start with I’ve just bought what I needed most which was their adaptive bras and a set of pyjamas. Today I’ll review the bras I bought.

The adaptive clothing range is only available in a small selection of stores meaning you can’t go all stores to browse the range. It’s a little annoying but I understand that the adaptive clothing range is very niche so it doesn’t make financial sense. Added to that for click and collect for the clothes is only available to select stores so you might not be able to get ahold of the clothes close by to where you live. I don’t quite understand why not all stores can offer this? I feel lucky that my local store does click and collect but going to collect the clothes is rather an ordeal. 

I bought both the bralettes and the lace plunge bra which are the two bras that Primark offer in their adaptive clothing range.

Photos from Primark

Both bras are front closing and have a magnetic closurfor myself and my PAs/carers when getting dressed and o. My usual bras I have to pull over my head so as you can imagine having something front closing has been an absolute dream. The bra’s from Primark also have given me more independence when dressing and undressing as I just need a bit of guidance to get them on but apart from that I can pretty much put them on myself and the closure is so easy to do even on days when I’m struggling with my hand function. Also with my Ehlers-Danlos my joints are very unstable so pulling my bra over my head can sometimes cause problems. However the front closing bras cause no issue at all with my shoulders.

Both bras come in two colours. Either pink or black. I got one of each colour in the bralette’s and a black lace plunge bra as I had some underwear that would go with it. With the bralette’s it would be nice to see them in in other colours such as light grey and both bras’s in white in a nude skin tone colour. There’s adaptive underwear in the Primark range so I’d have have them in these other colours too so they can co-ordinate.

I absolutely love the bralette, the only things I don’t like about them are first and foremost they aren’t padded. I’d love to see Primark add padding to these bralettes. The other thing is with tighter fitting tops the middle part where the closure is it is quite prominent and can be seen. Even on lose fitting tops you can see the magnetic closure if the top is pulled a particular way.

The lace plunge bra however is padded. Both bras’s are not wired which I like. The bralette if padded would have been the style of bra I’d normally wear. The lace bra I see as more fancy but I like it because it’s padded. 

The only problem I find with the lace plunge bra is that the lace on the strap goes quite far up so it show on some of my tops.

Another thing I found was trying to work out the size I needed. The Primark website wasn’t very helpful but eventually I found something online and found that I was an XS - I’m a 6/8 for clothes.

So in summary:

• 

  Photo from Primark

  Not are stores stock the range or offer click and collect
• I would say that on the whole the magnetic closure is very good and easy to do
• The front closure makes taking the bra on and off a lot easier 
• The adaptive bras promote independence when dressing/undressing
• I’d like both bra styles to come in more colours
• The bralette’s aren’t padded but the lace plunge bra’s are
• I’d like to see the bralette’s with padding too
• I like that both bra styles don’t come with under wiring which I like
• The lace on the that particular bra goes quite far up showing on some tops
• The sizing chart isn’t very clear on what size you need to get