Bl**dy Alexa

** Apologies to anyone named Alexa, this isn’t aimed at you**

 Now don’t get me wrong I love my Echo Dots, I have them pretty much in every room in the house, mainly so I can blast out music usually Taylor Swift as I am still girl crushing on her ( it will be a year come December that I started this relationship 😂😂😂). Since HRT was commenced back in August music has become a very important part of my life. Thank god Mr Myasthenia also has a penchant for Talyor Swift. He would necessarily put her music on himself but he has heard it pretty much every day for months and now knows several tracks off by heart and will happily sing along! Now he is totally busted 😂😂😂

As is usual for me I have gone off on a tangent, I mean what on earth does the above paragraph have to do with Bloody Alexa? Well me and Alexa ( Googles AI assistant ) have a love hate relationship. I have lost count how many times I have called her a c*** for not understanding what I have just said. I understand that she struggles if the TV is loud and she is figuring out which voice is giving her an instruction or if there is a loud background noise like a microwave or washing machine on spin. It isn’t at those times I lose my sh*t with her. It is times like today when in the kitchen and there is no background noise and I say “Alexa put coffee pods on the shopping list”. She acknowledges and puts them on the list. Then seconds later comes out with she doesn’t recognise my voice and that she needs to know who I am.

I tell you it feels like a massive slap in the face when she says that. I am the one that bought the Echo Dots, set them up and taught her Luddite husband how to use them and yet she claims not to recognise my voice. I get it I totally do because my voice does change every day and throughout the day. This is the one thing that PoTS and possibly EDS can’t explain and it is more likely my Myasthenia Gravis symptoms or whatever neurological condition is going on effecting my ability to speak.

Some days I find it almost impossible to speak, the only way I can describe it is that my tongue stops working forming the words or when it does attempt to form the words it moves very slowly so it is lagging behind. It is a very bizarre symptom and one I have had every since my illness reared it’s ugly head in 2007. I know EDS is genetic but until 2007 I could manage it along with the PoTS and low blood pressure. Other days it can be an issue just getting enough volume for Alexa to be able to identify that someone is speaking to her. It is very frustrating that really besides my husband it is only Alexa that acknowledges my speech issues. I can’t predict when I will have speech issues, as they are intermittent and going to the gp when everything is working normally is a waste of time. I really need to record myself when I am having issues or when Alexa has decided not to recognise my voice / understand my instructions.

Now I am not saying that once in a blue moon Alexa doesn’t recognise my voice, it happens at least once a week and on a bad week it will be multiple times. She struggles daily interpreting my instructions. On occasion I will have got stuck asking her to do something, the word is in my brain but is refusing to make it to my mouth. I find Alexa is very quick to switch herself back off when you take longer than a normal person to ask a question or issue an instruction. It seem’s a bit ablelist to me to expect everyone to be able to speak to Alexa within a set XX amount of seconds time frame. Not all of us have an easy time talking. I know towards the end of the day I can start to slur my words as I am just too tired to form the words properly. When Alexa doesn’t get what I am saying on a bad day it rams it home how bad my speech issues can be.

Most of the time Alexa’s inability to recognise my voice is laughed off, especially when it is followed by a stream of expletives from me. I know people with Scottish accents find they also have issues when trying to interact with AI. I have a west country twang but nothing that would make it impossible for Alexa to understand me – I believe. AI really does need to be improved so that it doesn’t stop people with accents, speech impediments or disabilities from being able to use it. 

The way that technology has evolved in my lifetime is amazing. I love using my Echo Dots. I set daily reminders for me to take medication, ask for weather reports, set timers and obviously play music on it. We also use it to record a shopping list as we find that we are getting low on a particular item. Friends have recorded voice messages and then sent them to us. That is particularly good fun! I also use the announcements in the Alexa app to get my husbands attention if he hasn’t heard me shouting from upstairs. I have freaked him out several times by dropping in on the Echo Dot that is in a particular room and speaking to him directly through it. So it has helped me enormously with many different things that I struggle with. It has been a really positive experience on the whole, it is just the issues with my voice that have detracted from the experience. I still wouldn’t be without them though. Even if most days I utter “Bloody Alexa”

Consequences

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.