Month: September 2021

21st Wedding Anniversary

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

As Mr Myasthenia Kid is on holiday this week, I have decided to write the blog post early and share some never before seen photos from when we got married over 21 years ago now.

We got married in Sri Lanka, I had never wanted to get married abroad but sadly the wedding I wanted ( small no more than 50 people, registry office, small, intimate reception back at my family home ) was declined by my family. They however did give the very wedding I had wanted to my sibling 7 years later. Doing all the things that they point blank refused to do with me, with her. They must have thought I was brain dead or stupid because I never gave them any sort of reaction. But it hurt me deeply and is one of the countless reasons why I have had to cut them out of my life. There is only so many times you can be abused by the people who are supposed to love you, until you eventually walk away.

Anyway we had a spectacular holiday and wedding in Sri Lanka. If you have never been I can highly recommend it. The hotel that we stayed at is still there just under a different name 

The screen shots are from Saga Holidays which is the company I found that is using this hotel. When we went to Sri Lanka we went with Kuoni who no longer use this hotel sadly. Having had a look at the photo’s it has had a massive re-model and looks amazing.

It was Mr Myasthenia Kid and mine first holiday abroad together, it was the first time I had been on a big aeroplane. It was also the first time I had been abroad without my family. It was incredibly daunting but we made lots of acquaintances and we are still friends with the people we asked to be our witnesses at our wedding.

So here are some photos from our wedding and the holiday. It feels like a life time ago we were 26 years old and look like babies! It was also back in the days where I won’t say I was well but I could function well enough to work and have holidays abroad. This was also the holiday that the palm reader told me that my life would change dramatically when I was 30. At the time I laughed it off and he was 3 years out but bugger me did he see something?

After the wedding ceremony making our way back to the hotel on the back of an Elephant


Watching the local dancers after the wedding ceremony

Posing for photographs as the register is completed.

Making our way to the part of the hotel gardens where the ceremony will be held.

Waiting for us to start the walk to where the ceremony was going to be held.

Just after we were declared man and wife

Our first proper photo after we had got married.

Back at our hotel room after the ceremony

On a day trip to the Portugese Fort at Galle Sri Lanka


Mr Myasthenia Kid enjoying the hotels pool.


Both the above photos were taken at the Sea Turtle Conservation place just down the road from our hotel.
I hope you have enjoyed the photos as much as we have enjoyed our little trip down memory lane.

Bl**dy Alexa

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

** 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”