Snippet of Home Automation

**Home Automation**

So anyone that knows me will know I’m somewhat of a Geek / Nerd / a person that loves technology… and actually this is something I am proud of… However Geek / Nerd has such a stigma attached that people sometimes assume its someone that plays computer games all day or codes etc… and obviously in some cases that is true… I used to be a gamer, I used to build PC’s, every spare bit of cash I had used to go on the latests game or bit of tech… well how life has changed… and how my priorities have changed.

Don’t get me wrong I still love these things as I still love playing games etc, but my tech focus at the moment is about making my life a little easier after a life changing recent diagnosis… (See previous blog posts for more on that)

A lot of companies now have jumped on the whole “Home Automation” Bandwagon – Philips / TP-Link / Hive / Google / Amazon – to name but a few… since being out of hospital back in July getting out of bed to switch a light off is a huge deal and can be extremely painful… so I thought I would spend a little bit of money on some home automation to see if I could make my life slightly easier and less painful… I didn’t realise how easy it was in all honesty…

Obviously all these devices need a network to link too – so your home wifi should be more than capable.

My first purchase was an Amazon Echo (2 Gen) – I bought this during the “Black Friday” deals on Amazon and saved £20 – also this had better reviews than the Google Home (Which is another option) Also Alexa does other things apart from turn off lights.. it can be a Bluetooth speaker / Give Weather / New reports and even order a Pizza – the things it can do are endless and forever increasing.

Amazon Echo

My next purchase was the TP-Link HS100 Smart Plugs – I bought 2 for both lamps in my room, these can be controlled via their own mobile App called KASA (Available on iOS / Android) or via Amazon Alexa – Another good thing about these they can be grouped together and scheduled to come on at certain times etc (at sunset for example) all programable via Alexa or the KASA App and extremely easy too.

My next purchase was TP-Link LB130 Colour changing Bulb – I only bought one of these as they’re quite expensive and changing the lamp colour is more of a novelty than anything else.

Quote from their website:-

“The LB110/LB130 connects to your Wi-Fi and lets you control every aspect of your lighting from your smartphone or tablet. Whether home or away, you can always make sure your lighting is set the way you want it.

Turn the lights on from your car when you arrive home at night, and make sure all your lights are switched off even when you’re already at work.”

I have also converted my friend that I live with to get a couple for security lights, so that she doesn’t need to remember to flick a switch every night to turn on an outside light, it’ll come on automatically and also go off automatically.

All of these devices are Eco friendly and energy savings see below… now that has just got to be an added bonus!…

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The other thing I use is IFTTT (If This Then That) which I currently have setup on my iPhone, but can also be controlled via android or the web and the possibilities with that are just ENDLESS! Here is the automation folder on my iPhone / iPad but to be honest once you have everything setup as you like it, you will hardly ever need to go into these.

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At some point I will be converting over to the Philips Hue System as I love their different lights – I purchased the starter kit during this Black Friday sale on amazon also.

But so far just these few devices have saved me a lot of unnecessary pain and in my book that can only be a good thing… and absolutely worth every penny, just so happen to have saved quite a bit with purchasing them during a black friday event.

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Benefits – Help & Care

Apologies for the lack of posts… I haven’t really felt up to writing…

So my recent diagnoses quite literally turned my life upside down, being in hospital weeks was hard enough on its own, but I was and still am in a lot of pain, so not only did I have excruciating pain to deal with, on being discharged I had been given an eviction notice by my landlord who’d I’d been his tenant for the best part of 14 years 😦 my job was up in the air as in I didn’t know where I stood with regards to it… and I literally felt my whole world had just collapsed and given up on me, I felt completely alone even though I had people around me. I owe a lot to these people, I’m not mentioning names but they know who they are… family / friends & professionals. The professionals around me continued saying my diagnosis was “Life changing” I didn’t know what that meant, and possibly still don’t… I knew that one of the things that had to change was the amount of hours I worked or whether I even returned to work at all, fortunately/unfortunately I am in a job I love so it wasn’t something I wanted to give up easily, I wanted to at least try – thankfully I have an understanding employer that has given me a chance… anyway either way I knew that I could never return to work full time… so having to claim benefits was / is my only option there is such a stigma behind benefits and after all the work I put in many years ago to get into a job I genuinely love, I didn’t want to be someone under that bracket, but unfortunately I don’t have any choice, but where do you start? Well when I came out of hospital I was under a team called BIC’s (Bournemouth Intermediate Care) nurses that would visit me 3 times a day to help make me something to eat and get dressed etc, something I felt mortified about, but needed. I just happen to mention about Benefits to one of these nurses and they said they had someone in their team that could help… OMG – I owe everything to this lady (Katie), she has been so kind / helpful I can’t put into words, she knew exactly what to do and when to do it… she came to me every time so that I didn’t have to go thru the agony of getting in / out the car, anyway she works for a charity called Help & Care and she does exactly that…

Quote from their website: https://www.helpandcare.org.uk

“Help & Care has been working across South-Central England for over 30 years, promoting dignity and independence for all people, particularly people living with a health condition, carers and those in later life. What makes us different is our person-centred approach. We understand that each individual has different needs, so we work closely with people to understand what really matters for them and to help them lead independent and fulfilling lives.”

 

“Based in Bournemouth, we offer services across South-Central England.”

Before all this happened I didn’t know what benefits I could claim or even how to go about it, I had always worked full time so never needed to know… well it’s so true how ya life can just change in a heartbeat… I’ve gone from working a 37 hour week to a 7.5 hour week which at the moment is exhausting but also gives me a reason to get up in the morning and also have some interaction, and makes me feel I have a purpose in life…

Nothing confirms all the above more than receiving a Blue Badge (Parking Badge) and a disabled card in the post, I broke down at receiving both of these as it seemed so final… I am officially disabled, I have to rely on others for the simplest of things – something that is a huge pill for me to swallow as I’ve been such an independent person all my life…

Currently I’m having to use crutches to walk as I still have multiple fractures and my balance is completely shot… but I am slowly finding ways of doing things… I currently live with an older lady in a lovely bungalow and for someone I have known for just over a month I feel as though i have known forever… she is one of the most caring and compassionate people you could meet and somehow she makes me feel safe… she doesn’t judge by the amount of treatments / hospital appointments I have, which would normally scare the average person.

Oral Steroids – Turned my life upside down…

Oral Steroids – Prednisolone (although there are others brands)

Common side effects to mention just a few:

  • Infections
  • Heartburn
  • Insomnia
  • Increased appetite
  • Nausea
  • Headache
  • Dizziness
  • Weight gain
  • Mood swings

This info and more can be found – http://www.asthma.org.uk

OK so most asthmatics if not all know what oral steroids are… we all call them evil, but seriously how many of us would be alive today without them?!?…. DEFINITELY NOT ME!… they are either little white tablets (taste horrendous) or little red / brown ones which are coated (gastro resistant) this is the version I take.

When having an exacerbation of asthma or chest infection this is one of the first things your GP will put you on or increase if you’re already on a maintenance dose, if however, you’re having a serious exacerbation then you will most likely need hospital treatment… most asthmatics know when it’s time for the hospital…

An exacerbation for me, my GP or Respiratory Consultant would increase my maintenance dose of 25mg (5 Red Tablets) to at least 40mg (8 Red Tablets) or 60mg (12 Red Tablets) they are normally taken all at once and first thing in the morning…

However, if you have Brittle Asthma (Like me) or Asthma that is difficult to control, many people call it different things… then you might be on what is called a “maintenance” dose of steroids, this is something you would take every morning despite whether you were having an exacerbation or not… I started having to take steroids everyday back in 2013 where I started on 7.5mg this very quickly got increased to 10mg and then again shortly afterwards was increased to 20mg after many hospital admissions in between… My last hospital admission my respiratory consultant increased my maintenance dose to 25mg… anyway my point is… (yeah Hayley get to it) in 4 years these steroids have done some serious damage to my bones despite regular DEXA Scans and calcium / Vitamin D supplements I have just been diagnosed with Osteoporosis and have multiple wedge fractures in my lower back I’ve also lost 2″ in height… (Below is part of my MRI scan)

These were found accidentally during a recent admission into hospital with yet another exacerbation of my brittle asthma, I’m lucky enough to have a very patient respiratory consultant who took my complaints of horrendous back pain seriously and once my chest was more stable, ordered every scan under the sun (Ultrasound / CT / MRI) all of which I had to lay on my back which was excruciating, anyway except the ultrasound – all the other scans revealed I had multiple wedge fractures in my back… but how? I hadn’t fallen over or damaged my back in any way (you’d think you’d remember) I was then diagnosed with steroid induced osteoporosis… OUCH!!

This has quite literally changed my life

How life can change in seconds, I went from working 37 hours a week, and after 5 months of rehab I can only just manage 7.5 hours a week, I walk with crutches as these help steady me and I also have a back brace to help with the ongoing pain, and it also gives me the sense of feeling held together – I take a bone protection tablet now also, which will hopefully strengthen my bones and reduce the risk of more fractures in the future although this isn’t definite and there is no cure.

However, knowing what these little red tablets have done to my bones I still have to take them everyday…

3,2,1 – Coming Home! – (Hold on tight!)

Being discharged from hospital after nearly 6 weeks was one rollercoaster of emotions, in someways I couldn’t wait to get home (own surroundings) and in other ways I was leaving behind the safety / security of if I deterated there would be someone close by to help (My asthma can change in a matter of seconds) but I couldn’t let that control me and nor did I want it too… so it was time to pack my things (One rucksack)

Hospital Transport picked me up and off home I went medical equipment was being delivered by another company so I needed to be home before this arrived – was home perhaps an hour before “Pimp the flat” showed up (Obviously not called that) two very helpful men put everything in place and made sure things were at the correct height etc and that was it, but wow was I exhausted by that point… anyway the equipment that was delivered consisted of:

3 x Perching Stools

Toilet frame (Sorry don’t know the official name)

Bath Board

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Bed Lever

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Furniture Risers (Sofa & Bed)

Crutches with special hand grips (No more blisters) obviously I came outta hospital with the standard crutches but even after a couple of days use I was getting blisters.

Grabber (Again I don’t know the official name – This thing however is a LIFE SAVER)

Once all this equipment was in place it felt a bit like NHS’s version of “Pimp my ride” but I have to say after a month of using this equipment everyday it’s been an absolute life saver. Another worry about coming home was how I was going to cope and if it wasn’t for a combination on things / people I wouldn’t have coped – so although thanks never seems enough a HUGE thanks to family / friends / flat mates / GP / Consultants / Psychologist / Nurses / Physiotherapists and everyone in between I don’t know how’d I’d of coped… I am so grateful to everyone of these people and I sometimes feel like a simple “Thank you” isn’t enough, but they all say it is so who am I to argue… and without a doubt at the end of the day I would do the same for someone I cared about that was in need.

The first couple of days at home were odd, trying to find my feet “so to speak” I had nurses from a community team called BICs (Bournemouth Intermediate Care) visit me 3 x a day to help wash and dress in the mornings to cooking lunch and dinner – they were absolutely amazing and to be honest until I was discharged I didn’t even know this service existed but it was something the hospital put in place for me, these nurse visited me everyday for at least 2-3 weeks slowly reducing the amount of times they would come out a day and I was able to call them anytime throughout the day if needed, they really helped me gain some confidence and strength back, things didn’t stop there either I was visited daily by a physiotherapist who helped with exercises for my back and the best techniques on how to negotiate stairs on crutches as I live up two flights (This is due to change soon, watch this space!)

So why was I so scared of coming home?!?… everyone has been amazing… and I can’t thank them enough… You know who you are… 👍

Phew! – So Part 3…

Phew! We made it… The final part…

So while my chest / lungs were still making their presence known, so was the pain in my right side, kidney area or so we thought, obviously I had only had kidney stones removed via keyhole surgery a week or two previous, so my respiratory consultant (Dr Shaw)

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Was concerned there may have been another kidney stone lurking around that may have been missed the first time, so my consultant contacted the urologist that preformed the surgery, and between them they decided on an ultrasound of my right kidney but to our surprise and some relief the scan revealed nothing… 👍 however the pain seemed to be getting more and more intense to the point of being unable to stand up from the bed / chair and walking was just impossible as the pain was excruciating, even the slightest movement the pain was horrendous… anyway like all this wasn’t enough I was and still am experiencing spontaneous spasms too, in hospital they were able to remove the end of the bed so that I had nothing to kick, but at home our bed has a wooden frame so I’m unable to remove the foot board, so I use pillows and A LOT of them, so after another discussion with my respiratory consultant the next day and with no improvement with the pain they decided to organise a CT Scan with contrast, this scan was nearly unbearable and involved a lot of tears due to having to lay flat on my back, the pain was just horrendous to the point it quite literally took my breath away and I had to be given supplemented oxygen and something to try and relax me enough for them to complete the scan, once able to catch my breath they proceeded and although the scan lasted about 5 minutes it felt like hours, once complete I had to try and sit upright and manoeuvre back into a wheelchair for the porters to return me back to the ward. I didn’t see any doctors again that day, but during the next day I saw multiple doctors, some that I’d never met before apart from obviously my respiratory consultant, he said we have good and bad news… good news is = No kidney stones 👍 / Bad news is = CT Scan revealed multiple wedge fractures in the lower part of my back 👎 which were most definitely caused by long term oral steroid use (Prednisolone) which I’d been taking for years – I’m on what’s called a “maintenance dose” depending on symptoms etc is to what maintenance dose you’d be on obviously everyone is different, however despite this the dosage would always be increased for a short time if you were having an asthma attack for example. (Please note not all asthmatics require steroids – As I don’t want to scare anyone)

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I’ve also reduced 2″ in height – but as my consultant kept reminding me I wouldn’t be alive today without these evil little tablets – to say we were all in shock was an understatement as I have regular DEXA scans which my last was back in January which revealed nothing to be concerned about. Anyway I was then seen by the pain management team to make sure I was on the correct pain relief and the correct doseage as up until this point I was unable to stand, was a bit trial and error but we managed to get it right in the end. I was also seen by a rheumatology consultant who I’ll now be under the care of – he started me on a 14 day infusion of Calcitonin to try and help the fractures but this drug alone had some nasty side effects (Fevers / Nausea / Stomach Cramps – to name but a few) but I wanted to carry on despite these, hey I’d suffered with the pain etc for months, what was a few more days? Don’t get me wrong I felt awful and actually scared a few people by how unwell I was looking (They didn’t mention that until afterwards) Calcitonin was administrated via a huge injection into muscle and OMG! That was painful.

Yes in the picture below is a frozen bottle of orange juice behind my head to try and help my fever!

I was then given the diagnosis of Osteoporosis – Everyone including the doctors were in complete shock as this is something that would normally effect someone double my age (Just proves that no illness has a time / age limit nowadays) I will be on treatment for the rest of my life to try and prevent more fractures as due to my chest stopping steroids isn’t an option – unfortunately my consultant is right in the fact that I NEED the steroids to remain alive, that is literally the harsh reality. While all this was happening I was also seeing a physiotherapist on the ward daily to try and help with movement, as the slightest movement was just horrendous but I wasn’t giving up (anyone that knows me well, knows I’m not a quitter) anyway due to my surprise my physio that I used to see previously as an outpatient turned up and although he was brutal, he managed with encouragement to first get me to stand and then also to walk a few steps aided (zimmer frame) which was absolutely excruciating but I felt he had time for me, he returned the next day and gradually I was able to walk further, I have every respect for him – as he took the time to explain things to me in English and not medical speak and also answered the multitude of questions that I had, and I will forever be grateful for that as I was and obviously still am absolutely terrified. Currently I’m unable to walk without a back brace that looks somewhat like a parachute and crutches, I will have these for the rest of my life however in the future I shouldn’t need them as often as I do at the moment.

In total I spent the best part of 6 weeks in hospital (kidney Stones / Asthma exbauation / Lower Back Fractures – Osteoporosis) Since being discharged its been somewhat of a rollercoaster mentally and physically.

Believe me I appreciate none of the above is far from funny… but – #Snapchat had to make an appearance every now and again…

So here goes with “Part two”… My lungs

My lungs aren’t very good at being lungs!…

First things first… So I escaped hospital on the Thursday after having my kidney stone surgery (read previous blog post) obviously still in a lot of pain, but breathing / lung wise everything seemed good or so we thought… the start of the following week I was starting to feel very chesty, it felt extremely heavy / wheezy and tight so I started my usual “rescue pack and increased my nebulisers” I hoped and prayed I’d caught it early enough… Mmmmmm by Wednesday things were getting really bad to the point where I had to give in and call the on-call doctor who just happened to be my own GP 👍 she insisted on seeing me in person, but could tell from the phone conversation or lack of that I was struggling, so I headed to the surgery about 3 miles from where I live and she didn’t hesitate to start me on back to back nebulisers of salbutamol and ipratropium.

Unbeknown to me at this time while I was concentrating on breathing another GP was calling an ambulance… 🚑 the ambulance arrived and among other things they tried to get a cannula in my arm but failed multiple times in the end they gave up as they were wasting valuable time, as the time they were wasting trying to find a vein I could have been at the hospital receiving the treatment I so desperately needed. Bournemouth Hospital is literally about 4 miles away from my GP surgery so the paramedics decided I required “Blues and two’s” and we headed to the hospital where I was taken straight to AMU (Acute Medical Unit) although should have gone via A&E as I was deteriorating so quickly (but that’s for another post) I was finally cannulated multiple times… seriously I mean why have one when ya can have a matching pair… and as my veins are extremely rubbish they had to go into my feet 👣

I was then given the usual… nebulisers / multiple ABGs / Increased steroids from 40mg to 60mg / Oxygen / Chest X-Rays / the list goes on… – I also saw my respiratory consultant who just happened to be on emergency duty that day, he’s been my consultant for many years so knows me very well and also my reluctancy to stay in hospital but as he was hearing very little air entry, the smallest amount of wheeze despite the back to back nebulisers (no air) and literally nothing or very little getting to the base of my lungs so he gave me no choice but to stay… honestly by this point I was feeling so rough that I really didn’t care, or have the energy or breath to argue…

I was then moved to Ward 2 (Respiratory @ Bournemouth Hospital) I’m always very reluctant to go to this ward because I watched my mum die on this ward 8 years ago, but the nurses and doctors and everyone inbetween have always been absolutely lovely to me… and because I always end up on this ward I don’t need to explain my history which when you’re struggling with every breath it’s a god send… Anyway on arrival to the ward my breathing was getting worse by the minute and the critical care team plus my consultant were waiting for me, at this point my consultant took one look at me and prescribed IV aminophylline (which is a miracle drug for me) I take this orally on a daily basis anyway, but when struggling IV is definitely the way forward 👍 they also decided to catheterise me as the slightest movement caused extreme breathlessness and excruciating pain.

After a few days things were starting to turn around, the wheeze and air entry were improving slowly basically until a night a couple of days later where my lungs had turned into an internal alarm clock and again wanted their presence known and woke me with a horrendous wheeze and unable to catch the little breath I had at this point, the nurses paged the doctor on-call overnight and also ICU, I was reviewed by all these doctors and between them an ICU bed was reserved for me, they did multiple ABG’s (Blood Gases) a portable chest x-ray, increased my oxygen and started back to back nebulisers again – it was about 3am by this point, so the other patients on the ward must have literally hated me. The doctors also decided to stop the aminophylline infusion temporarily to start a magnesium infusion, but once the magnesium infusion had finished the aminophylline was restarted and after a bit of time things became settled again slowly, but I was absolutely exhausted (breathing is a tiring business) instead of being taken to ICU I was moved to the Acute Lung Unit for closer monitoring, I was attached to literally every monitor machine possible (Heart rate / Blood pressure / Oxy meter – you get the gist)

So I was allowed to stay in the Acute Lung Unit on the proviso that if things deteriorated in anyway that I would be heading to ICU but the Acute Lung Unit at that time was the next best thing for now, however I remained under critical care for a few days and as the days went on things were improving just very slowly… there were still a few bumpy days ahead where they tried to wean my aminophylline infusion down a tad to fast and to soon and my lung protested, but eventually after many days (nearly two weeks) they managed to wean me off the aminophylline infusion altogether… then the focus became the amount of pain I was experiencing in my right kidney area, which had been continuous throughout all of the above… but obviously my breathing took priority… (Explain more about that in part 3 – bet ya can’t wait huh?!?)

There were “some” positives about being in hospital, I experienced the very rare NHS pedicure 👍

Even managed to squeeze in a bit of 🎾 Wimbledon… into my tight schedule… 👍

🎾 Well that’s game / set and match for this post 🎾 Stay turned for part 3… if all this wasn’t enough – yes there is more to the story…

To be continued!… See ya in Part 3…

It started with a ki… kidney stone!…

Kidney stones… ummmm not recommended…

So I’ve been experiencing lower back pain for quite sometime (months) I always put it down to the starting of a chest infection as this would always give me some discomfort in my back…

WRONG!

i woke up at 4am in what can only be described as excruciating pain in my right side (front/back) which travelled also down into the right side of my groin, I was throwing up everything and everywhere which was just nasty, it got to the point where I could no longer take the pain and because movement just made things worse I agreed reluctantly to have an ambulance called, the ambulance arrived at around 8am and they did all the usual – blood preasure / O2 Levels / Temperature etc and to be honest I was in so much pain I don’t remember what these important numbers were and at the time I really didn’t care, I just wanted something for the sickness and pain…

So I was taken to The Royal Bournemouth Hospital and after multiple attempts they finally managed to get a cannula into my arm, and I was finally given morphine via IV – Bliss!! for what felt like 10 minutes… and then the excruciating pain returned with a vengeance… Wow! more IV morphine was given to the point where I just slept but apparently hallucinating about feeding camels and was singing while waving a white tissue (I mean no one needs to see that) first doctor I saw was convinced I had a kidney infection as I was peeing pure blood and wanted to keep me over night, however the second doctor thought more must be going on and spoke with a urologist and ordered a CT Scan which revealed – Kidney Stones… hooray an answer to my pain and the lower back pain I had been experiencing for months… or so I thought…

The stones were small enough I should have been able to pass them, so the doctors were happy to allow me home but wanted me to return in a couple of days to be reviewed to make sure the stones had gone… well 4 days passed and a lot of pain meds consumed and no sign of any stones, the X-ray confirmed they were still in the same place and no sign of movement, so I was placed reluctantly (due to my chest issues) on the surgery list for the next day which in my case involved a consultation with three anaesthetist as to whether they were going to risk a general anaesthetic or a spinal, thankfully they went with the general as I didn’t fancy being awake… anyway the night before the surgery I was in so much pain I could have removed my own kidney, finally morning came and I was put into the lovely hospital gown and waited my turn to have the little buggers removed, this happened to be at 7.30pm ish – all I could think about was being pain free apart from the surgery pain of course…

Back on the ward straight after surgery – looking my finest of course….

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so I had the stones removed (weren’t even allowed to see them – they were sent for analysis) and I had a stent placed which was an odd feeling / experience but wasn’t painful, this was removed the next day and everything seemed OK… until I tried to pee… WOW did that hurt (no one warned me about that part) it was like peeing razor blades… but apparently that was normal… a little warning people!… OUCH!

All credit to the doctors / nurses / surgeons / recovery team involved I had no breathing issues at all during my recovery… or so we thought…

Part 2 coming soon!…