Thursday 27 May 2021

Master manipulators

When people think of manipulative relationships they often think about the victims of domestic violence and the coercive behaviour that can exist within them. However it isn't just domestic violence victims that can fall prey to this kind of behaviour. Many do not realise that these kind of relationships can exist within families, friendship groups or in the work place. Often it is not until the person has disentangled themselves from the manipulator that they realise the psychological abuse that they have been subjected to.

When you are chronically sick it is all too easy to become the victim of a master manipulator. These are people that like to exert unprecedented control over your life under the guise that they care or are caring for you. Master manipulators can be family members, friends or carers and once in your life can be very difficult to get rid of.

A few years ago I fell under the spell of a master manipulator. It's embarrassing to admit that I fell prey to this woman's evil schemes but now looking back I can see that I was particularly vulnerable. I had lost a lot of self confidence with no longer working, I was fighting the medical profession for a diagnosis and I was being treated badly by another friend who had become bored with my perpetual state of ill health. I had also been subjected to this kind of behaviour by other individuals in my life for a very long time .I was the perfect victim and she seemed initially like the perfect friend, too perfect. 

Manipulators play the long game, sometimes their plans are literally years in the making. Initially they seem absolutely perfect it is only over time that their agenda becomes clear, to dominate and use the person to achieve their own goals. At the start of the relationship the manipulator bides their time assessing their victims vulnerabilities. Storing every piece of information away to be used at a later date when they wish to start dominating the victim. They never expose their game plan in the beginning as obviously if a potential victim becomes suspicious of their motives the ruse would no longer be able to continue. This is the exact pattern of events that occurred with my friend Bertha* (* names changed to avoid legal action, not to protect the innocent).

Bertha came into my life like a breath of fresh air, I had known her in my previous life and had found her pleasant enough. It was quite a surprise when she messaged me out of the blue and said that she and a mutual friend would like to come and visit me. As social contact at this point was quite rare other than the two friends who had stuck by me, I was flattered that they would want to come over. My first mistake was made I was too grateful for her visit. The friend that accompanied her I never heard from again! I imagine that Bertha had realised that I was socially isolated and provided good victim material.

Initially Bertha was like any other normal human being. She had my sole undivided attention as she wasn't working and would come over and see my several times a week. Slowly over time I began to notice small changes, where once helping me and hubby out on the odd occasion, mainly dog care so I could attend appointments, she started to arrive late so that I would only make the appointment by the skin of my teeth or arrive late. Once I asked her to take me to a medical appointment as without her help I wouldn't be able to attend. She seemed delighted to be asked, which to be honest at the time seemed a little odd due to the fact she had let us down at the last minute several times previously when we asked for her help. Her mood changed drastically when I told her I did not want her going into the consultation room. My health appointments are private, I needed to discuss some ongoing issues with my consultant safe in the knowledge I had complete confidentiality, as any patient would. 

On the drive to the hospital she went on and on at me trying to wear me down. She didn't mind coming in with me, she had driven me there surely she should get to come in? Why was I being so secretive did I have something to hide? We share everything why won't you share this with me? The 30 minute drive felt like a lifetime. When you don't allow a master manipulator the thing that they desire you are faced with a barrage of either abuse of emotional blackmail. Even whilst we sat in the waiting room she continued her assault. When she wheeled me into the consultation room she made a move to sit behind me. I was adamant however that she wasn't going to be privy to the conversation and politely asked her to "close the door on her way out." She let out a huge sigh and left the room.

Having her drive me to the hospital and take me to the appointment was one of the weirdest things I have ever gone through. Looking back now I can see it was just a means of control, she felt her reward for doing me a good turn should be hearing confidential medical information pertaining to me. When she wasn't given her reward she subjected me to emotional blackmail. I was left feeling like a bad person for standing up to her, yet hers was the behaviour that was totally unacceptable. The drive home was mainly conducted in silence, the silence was only punctuated with her sighing. I kept my mouth shut and pretended to nod off. I wanted to use the excuse that I was tired and needed to have a lie down to prevent her demanding to come into the house for a cup of tea. Her behaviour that day had made me feel uncomfortable at the time I couldn't put my finger on it. If I thought that was strange things would eventually take a weirder turn.

In time I noticed that things were very one sided on the conversation front. She would ask me a question and then proceed to turn the conversation back to her favourite subject, herself. I felt like I had become her counsellor and joked about it. I felt sorry for her that she seemed to have so many problems in her life. Many times she complained about the fact people she was friends with her suddenly dropped her with no explanation. If it had been one friend I could understand it but it wasn't over time it appeared to be every friend she ever made had suddenly dropped her and completely cut her out of their lives. 

A few years into our friendship I made a new friend. She came around every Thursday and stayed for a few hours. I enjoyed her company we had quite a few things in common. There was no pressure in this relationship it was natural and easy going. This new friendship highlighted the unease and dread I felt every time Bertha said she was coming around. Unless you suffer from an anxiety disorder the thought of a friend coming over to visit you should fill you with happiness. My feelings were the exact opposite. This was what I would come to realise a RED FLAG and I should have paid more attention to this and the many others in my life. Having panic attacks before people visit you or when their number flashes up on your phone isn't normal. If someone is inducing those kind of emotions then you need to get the hell away from them.

Initially Bertha made out she was really happy for me to have a new friend. She started buying me small gifts to show me how much she appreciated our friendship. She decided that she was going to start hugging me more or sitting next to me, rather than how we usually sat sprawled out over the two sofas. As my new friendship flourished, Bertha started to become more critical. She was never critical of me directly but critical of my house, claiming things were broken when they weren't and then my dogs when she got no reaction from me regarding her other critical comments. Out of the blue she told me Frankie had bitten her hand. I asked her to show me where he had bitten her, it was important because as much as I love my dogs if they were ever to bite someone and injure them, they would have to be put to sleep. When she showed me her hand there was no mark on it. However her complaints of being bitten now happened every time she came to the house, yet no skin was broken, there were no teeth marks and no blood was spilled. It started to really irritate me but I let it go as I felt sorry for her. 

As her attempts to criticise me failed to provoke a response she tried a different approach. She had always been bad with time keeping and responding to text messages taking 12 hours to 3 weeks to answer a message. I really dislike lateness and people failing to respond to texts in a timely manner. Obviously there are times when you can't respond to a text message when you are working or driving for example. She had heard me complain about these bad habits previously so started to use this as her form of control. Now on a regular basis she would turn up 2 hours later than the arranged time of our meet up. She would not respond to texts blaming her phone signal. Initially I believed her over the phone signal but seeing how much she was on it I couldn't understand why she was taking up this technical fault with her service provider.

About this time she was beginning to get caught out in her own lies. We had been friends for about 4 years and she clearly couldn't remember the lies she had told. When we first met she told me she was on the waiting list for two operations yet 4 years later she was still waiting. I know the NHS is slow but it isn't that slow. When I questioned her about it she claimed she had never been put on the waiting list. She had also lied about various medical conditions. When challenged she would claim that I was confused and that she had never said that. Her stories were beginning to unravel, I let her think that I believed this explanation and then started to deliberately ask her questions about other things she had told me over the course of the four years. I have to admit I got some sort of perverse enjoyment from it, probably because I felt I was playing her at her own game for the first time we were becoming equals.

As her lies were starting to catch her out and she knew that I was beginning to realise that she wasn't the friend I had initially thought she was, she started a new attack. My husband has two days off per week and these are the days on which we spend time together. I keep these days clear of friends coming over as I want to spend the time with the man I married. All my friends respect this, obviously if there was some kind of emergency or it was the only day that they were free then I will spend time with them. However I feel it is important that my friendships are not to the detriment of my relationship with my husband. As Bertha knew this she started turning up on hubby's days off claiming that it was the only time she was free. If I said it wasn't convenient I was met with "I haven't seen you in ages", "I will just come over for an hour or so". I felt due to everything that she had done for me and the fact that she came to visit me when others didn't that I owed her and I never felt strong enough to give a flat out no. I have terrible problems saying no to anyone that I care about.

My husband always tried to make himself scarce when Bertha came over. He didn't actually like her very much and she had started flirting with him. It made him uncomfortable and embarrassed for her. When it first started he had laughed it off politely and decided not to tell me. Unfortunately she wouldn't take no for an answer and her flirting lost its subtlety and became an all out attack. It was no longer taking place when I was out of the room but in front of me. At one point she stripped off down to her bra, when Mr Myasthenia Kid was in the room on the pretext she wanted to show me her new bra. As she was probably a size 30 (UK women's size at this point), it wasn't pretty. I have lots of female friends. I have never stripped off in front of any of them to show them a new bra.

I knew that the friendship was coming to an end, Bertha had pushed me to my absolute limit. The thought of her visiting me made me anxious, she made my husband and I feel uncomfortable in our own home and she was persisting with the ridiculous lie that Frankie was biting her, in the full knowledge that his life was at stake when she said that. She was becoming dangerous and it had the feel of single white female about it. I talked it over with my other friends, who had already made it clear that they thought she was odd and possessive. My problem is I worry too much about hurting other people. It seems the older I get the more I worry. I never seem to take into account the hurt they have caused me and by continuing to have them in my life would cause me more pain. That is the master manipulators spell and I have fallen under it too many times.

The problem is having been exposed to these kinds of relationships from a young age I simply didn't realise that no matter who the person is in your life, you should never feel emotionally blackmailed by them, subjected to the silent treatment by them as punishment for not doing what they want you to do. You should never feel anxious at the prospect of dealing with them. You should never feel that because of who they are you should endure a relationship where you are an after thought and are quite often made the scapegoat when things go wrong in their lives. That's not love, not family or friendship operate.

The opportunity arose to do the dirty and end the friendship. I had arranged for her to come over to the house at 13.30pm. As on numerous occasions she had arrived more than two hours late, I had text her at 11:30pm to check if she was still coming over, I wasn't very well and if she wasn't coming I would be going back to bed. This had no response, so I messaged her via social media at 12:30pm, again no response. The prearranged time for our meet up came and went. I eventually heard from her at 14:30pm via text telling me that she had just woken up and could she come over at 16:00. By this point I will admit I was seething but I was scared of her also. I kept my reply short and sweet and told her I was in bed and to forget about today. she immediately text me back all sweetness and light asking what was wrong. I told her that I was very disappointed in her and that I would message her in a couple of days when I had calmed down. 

I had taken back control at long last but I was shaking with fear as I pressed send. I had no idea how she would react, whether she would try and plead her case or go nuclear. She went nuclear and sent me a stream of abusive texts telling me I was an ungrateful bitch after everything she had done for me and that is the one that I can repeat. The others called me all the names under the sun. When I was faced with all this vitriol it was only then I realised that she couldn't stand the loss of control. This was the first time I had ever stood up to her and she couldn't stand it. After the 5th or 6th text I decided to block her number from my phone and then immediately block her from all my social media accounts.

For about 48 hours my anxiety hit the roof, I felt like I had been a terrible person to cut her off like this but it couldn't go on. This all happened over 7 years ago and I have had to call time on other friendships, nothing as dramatic as this and the anxiety wasn't as bad when I realised I deserved better. 

When you realise that friendship, family relationships, love are not something that operates on a transnational basis as in what you can do for them, you realise by walking away from them you lose nothing but the constant pain they cause you. You realise that normal people don't behave like this, they don't view others simply in terms as what they can do for them, they like people for being themselves. Only happiness can come from realising your worth.

Thursday 20 May 2021

May 2021

This May has been a weird month and it is now slowly drawing to an end. It has been unseasonably cold and wet. Which for many people including those suffering with EDS it means our join pain is much worse. There has been a huge study conducted using an app called "cloudy with a chance of pain" and it has asked it's users to track their pain each day and say what the weather was like. They have proven that there is a link between the weather and peoples joint pain, be that through Arthritis, Ehlers Danlos Syndrome, Mixed Connective Tissue Disorders and many more. Many of us could have told them this, without the need of an app. But hey at least we can't be laughed at when we say we know that the weather is going to change before it does. We are human barometers.

There is a huge low pressure area that is moving over the UK tomorrow, currently it is sat out in the Atlantic Ocean but it's effects are already being felt by many of us. My daily exercise was painful from start to finish. It took a considerable amount of effort to keep going. My reward for keeping going is more joint pain not less. Today I have the rare symptom of sole of the foot pain, making it incredibly painful to walk. Even with them elevated the balls of my feet feel like they are throbbing along in time to the music I am listening to as I write my blog post. ( If you are interested Taylor Swift Evermore Album, I have that and Folklore set up back to back on my Amazon music account). 

Photo credit UK Southwest Storm Chasers

The yellow area is the part of the UK that is going to be affected by the low pressure that is moving in. As UK Southwest Storm Chasers say it is an "unusual deep area of low pressure that will sweep slowly across a swathe of the UK from Thursday night into Friday. We will also see some heavy rain and with this some high winds. This will start to affect South Wales and Southwest England first through late Thursday afternoon "

So instead of feeling like I have the body of a 47 year old, I am left feeling like I have the body of an 80 year old torture victim whose feet have been repeatedly beaten with a piece of 2 by 4. I have put Ibuprofen gel on my feet that has menthol in it but I can't even feel the menthol which is bizarre. It would be easier to tell you what isn't hurting at the moment and that would be my face. That is the only area of my body that isn't hurting at all at the moment. Which is weird because I am sporting a lovely bruised eye lid at the morning.

Late on Monday night I noticed that I had a dark purple line on my eye lid. Initially I thought it was ink or something on my eye lid. I had been suffering from really dry eyes all day which always makes them itchy so I had been rubbing them far more than I normally would. I didn't think any more of it until I woke up Tuesday morning and saw that the purple line was dissipating and the bright purple line was now more of a dark red and no longer had defined edges. Excuse the state of me in the photo I had only just got out of bed and was feeling pretty rough.

It was a tiny bit sore but nothing major. By the end of the day it looked like this.

The bruised area is tiny and it has perplexed me as to how on earth I have managed to damage a blood vessel just rubbing my eyes like I normally would. I have never had anything like it before. My eyes are still really dry at the moment and I am being extremely careful when I rub them just in case! I don't want a matching pair.

I hate it when I have weather induced joint pain as there really is nothing at all I can do to lessen its impact. Pain relief doesn't work, keeping mobile doesn't do anything for the pain but it stops me seizing up. It is a case of dressing in layers and applying hot water bottles to those areas causing me the most issues. On days like today it would be lovely to have a body sized hot water bottle to take the worst of the pain away.

Add in a surprise period from mother nature, I am truly on my way to the menopause with the last one I had being January. So I have the fatigue, stomach cramps, bum and leg ache on top of all the other shit that it going on. It is working it's way to being a perfect bloody week. No pun intended. Yesterday I could have quite happily spent the day in bed and slept all day, I haven't felt that tired and drained in a very long time. 

I took a self care day and watched stuff we had recorded on Sky. We are watching Mare of Easttown on Sky Atlantic and really enjoying that. We are also watching a programme on Channel 4 SAS: Who Dares Wins. At the moment a lot of Jay's days off are spent resting, he is struggling to come to terms with his dad's passing. Last week was a very tough week as it would have been his dad's birthday and also his dad's ashes came home. I am trying very hard to remain the constant, the thing he can rely on and doesn't have to worry about, as he has enough on his plate to deal with. So despite wanting to crawl into bed all day I stayed downstairs so he didn't have me to worry about as well.

We will get there but I think I would be lying if I said that we both won't be glad to see the back of May 2021 or 2021 as a whole.

Just because he is gorgeous and unconditional love is so important.

Thursday 13 May 2021


 How has another week passed by already? It's crazy how quickly the weeks are going by.

On the 25th March I wrote A call to arms , never in my wildest dreams would I have believed that I am now spearheading a campaign to save the General Medicine / Autonomic Clinic at Derriford Hospital. What started off as a small group on Facebook now has over 200 members, the campaign has been featured on the local BBC news programme and also in the main Plymouth news paper. My thanks go out to those members who were good enough to speak to the journalists and put across their stories of how the clinic has helped them and how detrimental to their health it would be should it close.

Despite telling me on 26th March when my question was put to the Board of Trustee's at the hospital that an announcement would be forthcoming mid April we are now mid May and we still have had no announcement from the hospital as to what it's plans are. I have this week sent another email to the hospital asking for an update as over 1000 patients are worrying about the future of their care.

On 13th April I sent off around 30 plus emails to lots of different organisations and people who might be able to help. I even contacted the Health Secretary Matt Hancock and I am still yet to get a reply. My own MP has been emailed 3 times and is still yet to let me know what he is doing to help his constituents affected by this departments closure. It has been very time consuming and whilst I have been very grateful for the distraction at times I can't help but feel guilty that Mr Myasthenia Kid has just lost his father and maybe I am not being present enough for him.

This week I have sent out a hard copy of the original email to my MP via recorded delivery in an attempt to spur him into action. I have also contacted my Doctors surgery as I wanted to ensure they were aware of the changes at Derriford and it isn't just me that this impacts at the practice. Plus the gp surgeries will have a say in the clinics that are commissioned by the CCG and around 90% of general practitioners don't understand what PoTS is or how to treat it. Plus most pharmaceutical treatments are consultant level drugs so can't be prescribed by a gp without a hospital consultants say so. So it is vitally important for the Doctors of Devon and Cornwall to have someone they can consult with regarding the care of their patients.

It has been exhausting and frustrating in equal measure. Many people are too sick to fight for themselves and some people for whatever reason just don't feel like they want to get involved despite being a member of the group. Which is sad, because if you can't fight for yourself who is going to do it for you. I also feel a terrible weight of responsibility that if we can't keep the clinic open in a meaningful way that I have failed. 

Many of the organisations that I have come into contact are too busy passing responsibility for the commissioning of the clinic onto others or they simply say not our problem. It is sad that very few organisations want to stand up and do the right thing by these patients. Without this clinic there will be many more hospital admissions, people being labelled with psychiatric diagnoses and people just not receiving the right treatment. Which is just disgraceful when figures show around 60+% will go back to normal levels of functioning with the right treatment.

The bureaucracy is a travesty, people are hiding behind policies or the fact there are no national treatment guidelines for PoTS / Autonomic Dysfunction meaning many people are already missing out on these treatments that could be life changing. With the advent of Covid and the condition Long Covid having an impact on the autonomic nervous system we need more clinics dealing with autonomic issues regardless of how they have come about, not less. No one seems to see this issue or they just pay lip service to it.

It seems that a lot of people in positions of power don't care about other people's suffering as long as they are ok. It is also sad that our elected representatives seem to forget we pay their wages. So they should be working for their constituents.

I won't stop trying though, no matter how long it takes, I will get our voices heard. 

Thursday 6 May 2021

Back from my blogging break

I am sure regular readers will appreciate why I had to take a break from blogging. Well I am back, my health is shit, which I fully expected with all that has gone on. Something had to give so since I last wrote I have endured a hideous kidney infection that almost saw me hospitalised, a flare up of gastritis that has stopped me sleeping as it has been so painful. Then add in vertigo and a couple of migraines that has been my last few weeks. I needed to take a breath and just focus on my boys, my little family and get through this awful time. 

I think I can speak for both me and Mr Myasthenia Kid that we have been blown away with all the cards we have received, messages etc. People contacting us to ensure that we were ok, dropping my medications around, offering to take Dembe out, getting shopping for us. We needed that help and it was very much appreciated.  Whatever they could do to help, nothing was too much trouble. 

I also want to say a huge thank you to those of you who made charitable donations to MND, on Rogers behalf that was exceptionally kind of you.

Grief is such a weird thing and what Jay and I were really shocked by has been just how very tired we are pretty much all of the time. Most days when Jay is day off work we can be looking at each other at 6pm and asking if we are going to bed. What we forget is for about 6 weeks prior to Jay losing his dad things had been pretty stressful. Whenever his mobile went at an odd hour - very early morning, late at night my heart would stop. I would dread whatever the news was that we were about to receive. We realise now how very draining the situation was, how we were constantly living on our nerves. Both of us are having issues trying to get  back to a normal state. After weeks of sleeping lightly we are both still waking at the slightest sound. I am sure given time we will start sleeping better.

At the moment we are just making our way through each day as best as possible. All I can do is be there for Mr Myasthenia Kid, take care of the small stuff so he doesn't have to worry about anything else. Both of us have developed the attention span of gnats and memory spans of a goldfish. It makes things tough and it would be quite easy to get angry about the others lack of attention but we know that the anger is also another part of the grief.

Mr Myasthenia is struggling but putting a brave face on. I know that he wants to be strong and in control but I do worry that at some point in the future this approach may bite him on the ass. He has always been one to bottle stuff up and I don't want to become a nag continually asking him how he is doing. He will speak to me when he is able.

I do understand with living away from his parents how he can insulate himself from the reality of what has occurred. He doesn't have to deal with the issue because he can pretend that it hasn't happened. He isn't confronted with the reality every day. In some ways that is good and in others I worry that it will prolong the acute stage of grief as he will keep pushing it down and not dealing with it.

He has been very keen to have some photos of him and his dad around the house. I framed the order of service from the funeral so that he has that  and I managed to find some wonderful photos of Jay and his dad at the NFL match at Wembley that watched in 2008. One of his brothers also found a really lovely one of him with Roger so I have got that in a treble aperture frame.

During the bank holiday weekend we were lucky enough to go down and visit Mr Myasthenia Kids mum. We held the meeting outside in the garden. In the sunshine it wasn't too bad and the garden is very sheltered. It was nice to be able to pay my respects in person, although a two hour visit wiped me out for the rest of the day. It has been around 6 years since I had a proper visit, although we had a flying one in December last year. Dembe certainly enjoyed the garden and being chased around by Jays brothers new puppy.

Things have been all over the place in the last 4 weeks or so. Most of the time I am struggling to remember what the day of the week is let alone anything else. I am now trying to get back into a routine so that things feel more settled. 

Having Dembe has been a godsend, he has instinctively known on the days when Jay is struggling and spent the days squidged up to his dad on the sofa and at night sleeping in his room.

Health wise I am waiting for a neurology appointment. The hospital rang a few weeks ago but I had to decline as it was the same week as the funeral. I wasn't ready for the added stress of seeing a neurologist and I didn't want Jay having any added pressure that week.

I received my second Covid vaccination on Tuesday 4th May. We are still waiting for Jay to get called for his but he has a few weeks yet before the 12 weeks is up. I am happy to report that I have had absolutely no side effects from the second vaccination. I was expecting that I may end up floored by it like I was with the first one but nothing at all. Not even a sore arm. Fingers crossed that Mr Myasthenia Kid gets called soon.

We are taking a break from Dog training for a bit as we both just don't have the mental capacity for it at the moment. We are both crawling into bed most nights just after 7pm and asleep not much later. We have also been sleeping until at least 8am when Jays shifts allow. We are just so very knackered. It has been like 100 life times has been crammed into the space of a few months and currently physically and mentally we have nothing left to give.

I will try to blog regularly again but it maybe hit and miss for a little while longer.