HOT

 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.

Anxiety

 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

Charades

At some point in your life you decide that no matter what you do, for some people it will never be enough. That you come so far down their list of priorities that you have to look yourself in the eye and say I am worth so much more than an after thought. It hurts to know that you mean nothing to them but to stay would allow them to inflict yet more damage upon you.

I have always tried to be honest in what I write about but since I started this blog I have felt like I have always had to write it with one aspect of my life never commented on. I am an honest person, I have shared stuff on my blog that I would have struggled to share in a real conversation. By holding back I haven't been honest, I can't do it any longer.  I am not prepared to do it any more. Pretending that I have a supportive loving family is over. It has been for years but I have been scared into silence by them. I'm done being scared. I'm done being silent whilst they spend their days telling lies about me to all who are stupid enough to listen.

I have left friendships due to being treated badly, people grow apart or something happens and their mask has slips and you decide enough is enough. I never ever thought that I would have to close the door on my family. It wasn't something that I ever wanted to do. Dysfunctional as they are, I love them but I can no longer have them in my life. For years I have been shamed into secrecy and silence. Playing a game of charades, pretending that we were the perfect family, when we were anything but. The decision has been about 5 years in the making, as I gained the strength and knowledge to know that this had never ever been about me but about about three terribly damaged individuals who were incapable of change because they couldn't see what they were doing was wrong.

I am not here to drag it all into the light, there is so much that I would like to say that I could write a book not a blog post.  I am past caring about your reaction to this blog post  because nothing you could do to me now, would be worse than what I have suffered at your hands for the past 47 years. I am sad that I wasn't enough for you, that you felt I only warranted "good" treatment when I was doing things for you. Well don't worry your pretty little heads, the door is firmly shut and I won't be opening it ever again.

There wasn't one thing or action that determined this turn of events, as I say the decision had been 5 years in the making. My eyes were well and truly opened in 2015 in the way that you ran to my siblings defence and cast me as the bad guy as per usual, without even speaking to me. The way you treated me, really broke my heart, I was so upset I couldn't eat or sleep, I was distraught.  You shattered the illusion of the perfect family so you only have yourselves to blame now  that I call time on it.

It was my doctor  that told me that my sibling was using her children as weapons and that it was wrong. In fact it was my gp that opened my eyes to the fact that our family relationships were dysfunctional and that there was an element of coercive control / narcissism to it. Whilst I was there at the appointment begging for anxiety medication and sleeping tablets because your combined actions had destroyed me yet again. Even at my lowest sobbing in the doctor's office I was still prepared to do anything to get my family back because I loved you.

The price of getting you back was for me to apologise for everything I had done. I asked for clarification on what this "everything" was because I was clueless. I was treated like I was being the unreasonable and should just apologise for everything. I was told that unless I apologised for everything that none of you would have anything to do with me. Asking someone to apologise for "everything" as you put it but without quantifying what everything is, is a fucking mind game. It was all about control and ensuring I didn't step out of line. 

I was so desperate to keep you in my life because I really didn't understand where all this cruelty and anger was coming from. I still believed at this point that our family was perfect and that I had obviously done something terrible to warrant your treatment of me. Ever the scapegoat  and peacemaker, I apologised for everything whilst my estranged sibling hurled accusations at me going back as far childhood, all of which were untrue or she had twisted the context to ensure yet again she was the victim. I apologised for things that I knew I hadn't done or had no control of, such was your combined twisted hold over me. How you three behaved then is what broke the spell. I started to realise at long last that our perfect family didn't exist  and never had it was an illusion.

So I went on a 5 year journey trying initially to discover what was so wrong with me that my sister could walk out of my life without a backwards glance and my parents could side with her without even speaking to me. Was I really so bad, so evil that I deserved to be treated like this? I asked my friends did they know this person that had been described to me as a compulsive liar and thief. None of them knew this person or recognised it as me. 

As my eyes opened to the years of abuse I began to ask questions, why did my parents always seem to love me less than her? Why was I the last person to be considered constantly?  For two people who claim they were treated so badly growing up, as the youngest child was favoured by your parents, you really do miss the fucking irony of repeating exactly the same pattern don't you? I read websites, blogs, mountains of books all on the subject of narcissism. Once I scratched the surface of your behaviour it became crystal fucking clear that the issue wasn't me, it was all of you and your twisted fucking minds.

Before anyone claims that it takes two to tango, I am not saying I am a perfect human being. I have flaws as everyone does. But their is a huge difference between flaws and taking positive enjoyment out of causing your own child mental anguish and harm.

Initially I truly believed that the issue was my sibling's alone and now that we were estranged perhaps my relationship with my parents would improve? Unluckily for you, all that research had shown me how narcissists abuse their victims and how they always go through a cycle of love bombing and then when they feel the target has fallen for their lies hook, line and sinker they withdraw or have you walking on eggshells again never knowing when you might take offence or withdraw from me for weeks on end. I soon realised that the narcissism gene wasn't carried by my estranged sibling alone. It could be applied to the pair of you. It was like you were following the narcissists manual, it was so predictable it would have been laughable had your actions not been as psychologically damaging as they were.

For a long time I tried to excuse the way that you behaved. I became a world expert at practising cognitive dissonance  but my body / unconscious mind kept sending me more and more warning signals when I was dealing with the both of you. I would get anxious and panicky at the thought of having to speak to you or see you. Covid lockdowns in 2020 were a positive blessing as it helped me realise that closing the door on that chapter of my life was not going to be some huge deal because as you had already  humiliated me, hurt me, attempted to break up my marriage, ignored me, destroyed my friendships and just so much more, there really wasn't anything left in your arsenal to hit me with.

 My dear friends I warn you now, to be prepared for the smear campaign to start after this blog post if it hasn't already. No doubt they are claiming that I am mentally ill / having a breakdown - that's the usual line or that Mr Myasthenia Kid has brain washed me against them and is controlling everything I do. For the record yes I suffer with anxiety and depression on and off. Mr Myasthenia Kid is too busy looking after me and Dembe whilst holding down a full time job to be bothered to brain wash me or control me. The problem is your lies about Mr Myasthenia Kid tend to fall apart under close scrutiny, if I was really the victim of his coercive control you've had ample opportunity to "rescue" me. Yet you don't you sit around bleating to anyone who listens and paint yourselves to be the victims in all of this.

Suddenly the slow drip, drip effect of your behaviour became a Tsunami, there was no holding back from seeing straight through it. Since stepping away from all the bullshit and continuous hurt I have never been happier. Despite everything you have put us both through, the lies you have told about us to anyone will listen. I am sad, that I don't miss you. A child should miss their parents presence but I don't. There isn't anything to miss, I don't miss being the very last thing you think of, I don't miss parenting you and  I don't miss your shrieking phone calls when I stand up for myself. I thought there would be a grieving period but there wasn't. There is anger, anger that you tried to hijack my husbands grief and push your agenda on us. Stupidly if you had rung up and apologised for that, we would still be in contact because despite all the shit you have pulled over the years, all I ever wanted was to be loved by you and to know that I was enough. I still do love you but I love myself enough to know that having you in my life does me great harm, so I am walking away.

Thankfully after having had 3 months out of your circus I know I am enough, that without you I won't shatter and break. That my life will continue on happier safe in the knowledge that I no longer have to walk on eggshells when dealing with you. I will no longer lie awake at night wondering what it is I have done to upset you this time. My exit from your lives, on my own terms and I won't be keeping quiet. If someone asks I will tell them. If you don't like that, I no longer care.

I have never felt like a victim, I am a survivor, no longer the scapegoat and no longer playing your twisted game of charades.

Migraines, Occipital Neuralgia Flare up

Well I know for a fact I am not alone in this as everywhere on social media people are complaining about the barometric pressure  causing more frequent migraines. I have more in the last week than I have had for ages, add in a flare up of Occipital neuralgia and I haven't been a very happy bunny all the last week.

The weather although not exceptionally hot is very humid and close. A few times we have had an amber weather alert for  thunder storms but sadly no light show. I love a good thunder storm especially now I have a dog(s) that doesn't get hysterical when there is a good storm raging around us. The most Dembe does is bark at the noise and then he settles back down to sleep again. As much as I loved Mollie, Willow and Frankie sleepless nights due to storms or fireworks were exhausting. Having a dog that will sleep through them is wonderful.

At the end of last week I was in agony, my neck, scalp and forehead were all spasming due to the occipital neuralgia making it incredibly sore to move my neck to the left. It also triggered several migraines and made sleeping very painful as the back of my head was so sore. In desperation I contacted the doctors and begged for a small amount of Diazepam to relieve the spasms. When it has got to the stage that my forehead is constantly sore and I can't turn my head then the only thing that will work is Diazepam. I need to take it a couple of times over two days for the spasms to stop. In the past I have tried alcohol and additional pain relief ( not the two combined obviously) to get the muscles to relax along with heat, using hot water bottles and heat mats. 

Thankfully I did get a small amount of Diazepam and within two days I had moved out of the awful pain cycle I had been in and I can now move my head to the left without shrieking which is always a bonus. 

When I have weeks like this it is always exhausting, pain at that level just wipes out all my energy. I find it incredibly hard to concentrate and I lack any motivation to get anything done. The pain that I am in stems back to the car accident I had almost a year ago now. I have been left with an ulnar nerve entrapment, a flare up of migraines, occipital neuralgia, pins and needles in my left buttock and down my left leg. I also have pins and needles to varying degrees down my left arm and into my ring finger. The stress of the accident and the fall out from that has also kicked off the spasms in my feet, which I am still waiting to see the neurologist about. I was offered an appointment the same day as my father in laws funeral, obviously I couldn't attend. My gp has now chased this up and it looks like the end of August at the earliest.

Thankfully the occipital neuralgia has settled an awful lot back to its usual level and not the searing pain I had last week.  When I get to the point where I was last week I end up getting very tearful with the frustration at the situation.

My mind is all over the place as I have just learned a childhood friend of mine who lives in The Netherlands has been seriously ill with Covid. He has been in a medically induced coma for 4.5 weeks a further 2 weeks in intensive care and is now having to re-learn everything. Kris is a fit and healthy 50 year old man who has no underlying conditions and it did this to him. And yet people still don't believe Covid is real. Get well soon Kris.