Well b*gger me it is HOT here in the UK at the moment. Now I know the rest of the world laughs when anyone in the UK says it is hot but please remember heat is relative to what you are used to. Also because our Summers are traditionally not that hot, 24 degrees Celsius is probably about average. However this last week temperatures have been rarely lower than 28 to 30 degrees Celsius making it unbearable for me  and for poor Dembe.

In the UK we don’t do air conditioning unless it is in a shop or a very fancy home. Air conditioning units are beyond a lot of peoples means at around £350-450 upwards. Our homes have been insulated to within an inch of their lives. Meaning they stay hot no matter what doors and windows are thrown open. Believe me I have tried the keeping the windows closed and curtains drawn during the day to keep the temperature down but it didn’t work. It ended up even more suffocatingly hot than usual. We have the loft hatch open in the hope that it gives the hot air somewhere to go. But other than living in my refrigerator I am just soldiering on.

The heat and Dysautonomia do not mix, I can’t regulate my temperature on the best of days so dealing with this unrelenting heat is a nightmare. Standing up my vision is greying out, I have upped all the medications I can to try and retain fluids within my system but it still isn’t enough. I am ending up wetting my hair multiple times a day to get my body temperature down and get some relief. I have got so fed up with it this week that I have bought some freezer blocks to keep me cool during the day. At night we are using hot water bottles that have been filled with cold water and frozen during the day. This at least is helping us sleep. Sadly though my sleep is being interrupted by heat induced migraines.

I never used to suffer with migraines caused by the Summer heat until last year when I got an absolute shocker of a migraine on the Whitsun bankholiday ( a national holiday on the first Monday of June). It happened to be the first day that was very hot and I had spent a lot of time outdoors. I put it down to day drinking and being dehydrated. However the same thing happened this year and there had been no alcohol involved. I had been out in the sun a lot as it was the day Jay and his brother scattered their fathers ashes on Dartmoor, I had spent the time with his mum out in the garden. Again the migraine that followed was another shocker.

It is so frustrating when you get a migraine due to the weather as stopping it happening is out of your control. I have now ordered some freezer blocks from Amazon to freeze and then use during the day to keep cool. Every night for the last three days I have ended up going to bed with a migraine either brewing or in full swing. Last nights was particularly bad as it came back again at around 3am. I woke up to a world of pain as my whole face felt like it was being smacked with a shovel. Thankfully it did ease off with the help of sumatriptan which has been a game changer with my migraines and it makes me angry that despite me visiting the gp practice on numerous occasions this wasn’t offered to me until 2020 when my migraines were making me lose 48 hours of my memory. Which was incredibly scary.

Dembe has also been suffering with this heat, we have had to cancel his Wednesday afternoon walk this week that he adores with Sophie, Beth and the gang as it is just too dangerous to walk him as it would be risking heatstroke. Sophie did offer to walk him in the morning but as Jay is home and he would walk him at 5am there was no point. During the day because Dembe simply refuses to use the garden to go to the toilet, even a wee (!) Jay has been taking him to the shaded lane that runs near our house. Dembe gets hosed down before and after and Jay always checks the temperature of the tarmac before walking him to ensure he doesn’t burn his feet. I am glad he is that much older as he is less fizzy and will sleep during this heat.

To help him with the heat we bought him a splash mat, I think Jay enjoyed it more as Dembe seemed deeply suspicious of it, only going on it when the jets were off.

He really enjoyed splashing around in the water that had collected in the pool. I am happy as long as he is enjoying himself and staying cool. He also likes lying down in the shade on the flag stones on the patio.

We hose this down regularly to ensure it is lovely and cool for him.

We may get a slight reprieve over the next few days as we have been forecast heavy thundery showers. I really hope so as we do need a short break ( at least ) from the onslaught of the heat.


There will be no blog post over the next two weeks as Mr Myasthenia Kid is on leave from work and we are planning on spending the time together whilst there are some contractors here doing some work on our house.


After last week’s post was written and  scheduled to publish, initially I felt ok. I was proud of the fact that finally felt strong enough to speak my truth and no longer feel like I was blogging with one hand tied behind my back. As the hours ticked by towards publication I started to get worried about the post. I edited it numerous times, to ensure that I was comfortable enough to let it be published. I knew that at some point the anxiety would really kick in I just wasn’t expecting it at at 4am the day of publication.

I was reasonably comfortable on Wednesday evening when I turned in for the night. I was slightly anxious but kept trying to rationalise that this was a normal programmed response that over time I would unlearn. It is amazing how narcissists control you with fear of the explosion of their rage or perhaps the threat of the silent treatment. This is a cycle I have lived through my whole life. It gives you massive insecurities that love and support will be removed from you without notice, for breaking their rules, the ones you didn’t even know existed. 

I was a little surprised at how calm I was on Wednesday evening, it was too calm. But I thought well maybe I have had enough time away from that circus, to know that I wasn’t so under it’s control. How wrong I was. I woke up at 4am on Thursday morning in a cold sweat paralysed with fear. I lay in bed listening to my husband getting ready for work, with my mind going back and forth between whether or not to get up and stop the post being published. I decided to ride it out that I could no longer give into the fear of upsetting or angering people, who play no role in my life, who have done nothing but harm me when I was involved with them. 

It was really bloody hard because the physical feelings of anxiety are not easy to ignore. Why should I be frightened of  telling the truth? Surely I should be free at 47 to speak out about part of my life that has controlled so much of of what I do and say. No one should be this frightened of their family. To be frightened of one’s family isn’t normal. I have rationalised it and explained it away long enough. I am not doing that any more.

My physical feelings of anxiety are always the same, my stomach flips multiple times in a minute. I can feel light headed, I can hear my pulse in my ears and usually I will want to have the shits! Probably TMI. I managed to talk myself out of removing the post, I just thought let the chips fall where they may. By removing it I am continuing to let the control me. Given time the anxiety will reduce and I won’t be triggered so easily. It was hard but I did manage to get back to sleep. 

When I woke up at 8am the first thing I did was check my emails, I was fully expecting there to be abusive comments waiting to be published. I have always ensured that comments on either blog site are not allowed to publish without my permission. This isn’t because I am a control freak but due to the fact both my blog platforms are targets for spammers. I remove a huge amount of spam every week from both blogs . I was grateful to see that what I did have were messages of support and that I wasn’t alone. It is sad that so many of us grow up in these toxic environments and are too terrified to speak out due to the control still exerted over us even as adults. 

In the past I have raised things with my family, that have upset me, where I was name called or treated badly and every time I was told “It wasn’t meant like that” or ” that isn’t what was said” or “that didn’t happen”. Any criticism of parenting style was seen as an attack and it always took a great deal of courage to raise these issues. After a while I just gave up, you can’t discuss things with people that won’t accept what they did was wrong and life is too short for me to continue to keep trying and getting the same result.

My experience of narcissists is that the older they get the worse they get. Their audience has dwindled because most people have worked out what they are and give them a wide berth. It is a huge red flag when people constantly tell you they have no friends, a) they like being the victim b) It is simply not possible to go through that many years of life and to have zero friends – unless you are Attila the Hun or Hitler maybe but even Donald Trump has friends. As a narcissist ages the masks slips, you have been so long in their orbit that they don’t even bother trying to hide who they are anymore. The thought of having to put up with their behaviour until the dying day ( regardless of the inheritance involved ) filled me with horror. There simply wasn’t any reward on heaven or earth enough for me to continue to be this family’s whipping boy.

The anxiety has died down, I am ok with what was published I still stand by it. If they don’t like it that simply isn’t my problem anymore. There are a lot of things that have taken place in the last 47 years that I am not happy about but I have still found happiness and love with Mr Myasthenia Kid. I wish them all a long happy life together because truly that is what they all deserve