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 ­čśé­čśé­čśé). 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 ­čśé­čśé­čśé

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”

I am a survivor

Well I am still not feeling the blog. I don’t know what’s going on but I am really finding it hard to come up with stuff to write about. I am spending 7 days waiting for inspiration to strike and it just isn’t happening. By Tuesday each week I am in a bit of a panic, I like to try and write on a Tuesday if Jay goes out running errands. If not I will wait until Wednesday morning but I don’t like leaving it until Wednesday as I always panic if I have a migraine or something and no blog post is produced.

At the moment the days are just merging into one. I haven’t seen any of my friends for over a month although I keep in regular contact with some of them. I have come to realise over the last 8 months that some of the people that I thought for there for me, disappeared when Frankie and Mollie passed away.┬á I understand that everyone has their own lives and families, with their own shit to deal with but it has been a very isolating experience. Some people have made a supreme effort to be present and other well not so much. It’s ok as I have a long memory and will be sure to return the favour when the shit hits the fan in their lives. I didn’t expect to be visited constantly but the occasional text message would have been nice, especially when they know my situation of living alone and Jay working.

Thankfully though I am pretty self sufficient, whilst dealing with my grief, I was juggling a new puppy and attempting to find time to sew / embroider. It hasn’t been easy but Dembe and I have found a new routine that works for us. He is pretty good at entertaining himself whilst I am busy sewing. He always positions himself in a location where he can keep an eye on me and ensure he knows if I have moved. He likes one of three places, the bed by the washing machine, the sofa that looks into the kitchen or out under the gazebo on the bench surrounded by all the cushions. I can’t believe my luck that he doesn’t get bored and then start destroying things. When I have finished sewing he knows that is our time and I will ensure I spend the time playing with him, doing training or just cuddles depending on his energy levels. I have been blessed with a pup that is so very well behaved and so very loving. His favourite spot for sleeping is right beside me on the sofa. This is him right now as I am writing this post.

My life has totally changed this year, I have re-assessed┬áa lot of relationships. I have made the decision that I won’t swim an ocean for people who wouldn’t jump a puddle for me. I have decided that instead of worrying about what everyone is thinking or saying about me behind my back and believe me you’d be surprised the shit I hear being spoken about me by people who should know better, that I shall just carry on living my life and enjoying myself.┬áThe best revenge on those sad twats is to enjoy yourself and plaster it all over social media. It totally then fucks up all the fairy tales that they have been telling people for years.

I am also getting out of the house a lot more, this does have to be limited and planned for. I haven’t suddenly magically got better, it is just with one dog things are a lot easier. Especially as Dembe is such a friendly dog and on the whole pretty well behaved, although we have now hit the teenage years and recall seems to be a take it or leave it thing! Fatigue still grinds me down. I like using my energy for things for things that make me happy. So using my mobility scooter on Woodbury Common and getting out with Jay and Dembe has been unbelievably healing and grounding.┬á

It has been the one thing I have missed most since I got sick. The wheelchair trike although brilliant is an absolute ballache to transport. The wheelchair is fixed framed so that would take up the whole boot and then I would have to juggle the trike attachment with me in the front of the car. Not exactly safe. Then I piled on a load of weight when I developed my CSF leak and was virtually bed bound for a year, then in 2017 and 2018 we suffered a number of bereavements and I tend to self medicate with gin, chocolate and junk food / takeaways. I was 5 stone over the optimum user weight for the trike. So anytime I did try to use it the battery drained in minutes. I’ve been too embarrassed┬áto say that because I allowed myself to get fat as fuck, I haven’t been able to use it. Hopefully now I am back losing weight ( it’s taken me until the last month to feel like I can actually do it) and I am back to 3 stone down, ideally at least another 3 to go so I will be massively under the optimum user weight. The trike will be used in the future as it is more suited to the rough and rugged environment of the common.

I do love my mobility scooter though and it has given me back my independence. It is easily taken apart to it can fit in the back of the car. It makes life so much easier if I need to go to the doctors or the hospital for appointments.

Over the 2 months I have got back into sewing and actually enjoyed it rather than feel I am going through the motions. From January until June I made a bloody good show of pretending I was ok, ensuring I used my embroidery machine every week and appeared to be enjoying myself. At points I felt like I was dying inside. I felt like a shell of the person I was. I didn’t feel I could voice the pain I was in. I know others struggle with grief especially when it is over an animal and not a human being.┬á Like I said earlier it has been one of the most isolating experiences of my life. There just felt like there was no one there. I do wonder if there had been someone their if I would have still felt so isolated.

I do have a tendency when things are tough to disappear into myself and attempt to shut out the world. I still kept on posting on social media, I still kept the creative things going but in all honesty I was going through the motions. It is only now that I can watch anything remotely sentimental without breaking down immediately. I only now feel like me. I feel like I have been on some weird journey where at points I lost myself. It is true what doesn’t kill you makes you stronger because in January / February this year I honestly thought the pain would kill me or I wished it would.

So I skillfully went off on a tangent there, I am enjoying sewing again and being creative rather than having to force myself to do it in the hope at some point the joy would come back. I am still working on my scrap busting quilt sew along. I found out yesterday that it is between a double (bed) and king size (bed) size, so it definitely is the largest one I have ever worked on. I made the back panel for it yesterday.

And in case you have forgotten what the front looks like

This morning I sorted out the wadding ( what you call batting in the USA ) which needed sewn together. I also made some plastic templates┬á to draw around as I have decided to tray something totally different with the quilting. It has taken me a few days of mulling it over to come to my plans. I have drawn it out so I have something to refer to. I now just need to have Jay clear the floor space in the lounge so that I can put my quilt sandwich together quilt back + wadding / batting + quilt top. I use temporary┬ábasting spray to hold it together but as it is so large I will also be pinning it. This ensures that the fabric stays nice and flat so it doesn’t shift and give you puckers. I also managed to sort out the binding yesterday. So it is all ready to be quilted shortly. I will be quite glad when it is finished now as I hate half done projects hanging around. I am really ready to now get myself into new projects and stretch my skills.

Anyway I started with no clue where this post was going and have managed to ramble on forever!

Dembe has changed locations

He likes it so he knows exactly where I am in the house at all times.

I think this year I have learnt, a lot and we are only in August. My heart has hurt more than I ever thought possible without keeling over and dying. I have learnt in the depths of grief you are still able to love unconditionally and you must never feel guilty for that. I have also learnt that the majority of people run away from grief and think that is acceptable behaviour. Despite all this I have come back stronger, love another dog more than I ever thought possible but when you have this gorgeous mutt in your life how could you not?

And yes he is holding my thumb in his mouth!

This is the year that nearly broke me, the year that changed everything and has just proved to me I am a survivor.