Self care

 Firstly I am doing a lot better than I was doing last week. I got some diazepam from my doctor which stopped the spasms and allowed me to just reset everything so that I wasn't in constant pain with the occipital neuralgia.

I have had a few more bouts of bowel adhesion pain, I have no idea what is triggering it other than possibly stress. As usual there are things going on that I can't blog about as they are deeply personal and private. The stress is also contributing to a few visits of insomnia. Today my tired is tired! 

So I have reluctantly decided that I need to have a break and step away from the blog for a couple of weeks. Coming up with a post every week is adding more pressure to me and life is already hard enough at the moment. I would have been having a break next week anyway as it is mine and Mr Myasthenia Kids birthday. When I will be back? Sadly I can't say at the moment. I don't envision it to be any more than a few weeks at most. 

Sometimes I just need to catch my breath and take the pressure off myself. Mr Myasthenia Kid, Dembe and me are all ok, so please no one panic about us. There are things going on outside of us which is not for me to discuss and for it to be out there in the world. At some point I will be able to say just not right now.

For now self care takes priority.

Weathering the storm - keeping a relationship strong

  It has been a busy week here and I simply haven't left myself enough time to write a blog piece this week and rather than give you nothing here's one I made earlier. I thought I would re-blog this post from May 2014, I know I have re-blogged this post before but I do think this one is important and we can all forget that relationships suffer due to a loved one becoming sick.

Chronic illness / disability can and does destroy relationships. Suddenly the husband / wife / partner moves from the role they assumed when you got together to one of carer and in my case he also became the bread winner. That kind of stress can blow apart even the strongest of unions. With so little support available to those that take on the role of carer its no wonder so many of them end up with mental health issues such as anxiety or depression.

Families can be supportive or can completely distance themselves and provide no support at all for the couple whose lives have been so dramatically changed. Families can be a destructive force, doubting that the person is even sick or minimising the extent to which the disability affects them. They can also be instrumental in the break up of a relationship, by telling the carer to leave / divorce the person who has become sick, so that they can resume a "normal life". Whilst some partners may jump at that perceived lifeline, those that don't find their relationship with those who offered it fractured beyond repair. The anger caused by this "helpful" offer bubbles away under the surface and only serves to increase the burden already placed upon them in their new role. When your family withdraws support from you due to a spouses / partners sickness it just adds to the isolation that is already acutely felt by the carer. Once things like that have been said they can never be taken back.


So how do couple remain together when faced with the situation where one becomes the carer for the other? I don't have any magic solutions, its a situation my husband and I have had to deal with for the last 7 years and we are still becoming accustomed to it whilst my illness decides to fluctuate in the extreme.

Its easy when you are the one that is chronically sick to become so wrapped up in what is happening to you that you forget the needs of your partner. You forget the stress you are inadvertently causing them, especially if they have to leave you everyday to go to work and they don't know what state they will find you in when they return home. I want to tell you this is totally normal, you have embarked on the strangest journey in your life, with weird and wacky symptoms cropping up daily and you will for a time become totally self absorbed. However the time does come where you become accustomed to what's happening and you will once again be able to look at the bigger picture - life as a couple facing this situation head on together. Weathering the storm.

Facing things together is one of the most important things you need to do to weather the storm. For the carer this means attending hospital/ doctor appointments whenever you can (its not easy if you're working, employers can be inflexible and unsupportive when you ask for time off). For the partner /carer it means believing in your spouse and not the doctors. What do I mean by this?  Well there came a time when my old gp and hospital consultant were convinced that I was suffering from somatoform disorder / conversion disorder. My husband knew this wasn't the case, he had seen me faint, my lips turn blue from lack of oxygen and had read the pulse ox reading of 84% oxygen saturation. He had also witnessed my blood pressure readings of 80/54 and although he is not at all medically minded he knew that I couldn't "fake" these symptoms. He also knew the last thing in the world I wanted to do was be sick and end up having to give up a job I loved. He supported my quest for answers, listened to me as I ranted and raved about the idiot doctors who didn't seem to understand the basics of the human body. He may not have understood the things I was talking about but he listened and that was incredibly important. He held me when I sobbed for hours and he tried to make things better.

I feel a tremendous amount of guilt for being sick, I know that there is nothing I have done that has made me sick but I still feel guilty for changing both our lives beyond recognition. I feel guilty that some days within minutes of my husband getting home from work I have to go to bed. I feel guilty about the stress I cause him when I am sicker than normal and he has to leave the house for 9 hours whilst he goes to work. I feel guilty that by default that my sickness has fractured his relationship with his family. I feel guilty that I (and external factors outside of our relationship) have triggered such anxiety in him that he now has to take medication. The things that make me feel guilty are endless. He takes everything in his stride. It would be so easy for my guilt to turn to anger and then because he is the one I see everyday, for my anger to be taken out of him.

It's incredibly important as the one who is sick to try and recognise where your anger is coming from. Your partner is not your whipping boy to have all your frustrations taken out on. Its hard sometimes not to snap or berate him for perceived faults but its not him I am angry with, its this condition and it is not and nor has never been his fault. Its important that you recognise that, no one not even a healthy couple, would put up with a raging partner for very long. That kind of anger can be destructive to a relationship so its important it is directed elsewhere. Speak to someone, a counsellor, a friend, vent on a facebook group but do not direct your anger towards those who love you and whom themselves have endured an incredible upheaval in their lives also due to the illness that has struck you down.

When illness takes away your ability to go out, socialise or attend family events as you both used to its important that you find things to do together as a couple that you both enjoy. Hubby and I have several programmes that we follow and when he is day off we catch up on those programmes together. It may not seem like much but its time where we can discuss things other than the mundane day to day stuff and talk about the TV programme / film. We love The Blacklist, 24, The Walking Dead, Falling Skies, The Great British Menu, One born Every Minute and 24 hours in A&E. We never watch these programmes alone they are our programmes which are to be watched together. By taking the time to "do" stuff together we keep our relationship strong.

I have encouraged hubby to take up activities that take him out of the house. I know that with a stressful job and looking after me he needs something where he is just him and his achievements are his alone. In the last few years hubby has taken up running - which he hates but does because it helps him manage his weight. In that time he has run two half marathons and several 10k runs. I am very proud of him, this year he is running 2 half marathons which is no mean feat. We have a medal and photograph board in our kitchen to show off his achievements. Although most of his training takes place on a treadmill at home, running helps him de-stress and takes him out of his carer role, as whilst running he can not be interrupted. It has done his anxiety / depression the world of good and helped with his weight loss.

He has also joined a slimming club (with some encouragement from me) so that every week he gets out of the house on his day off and meets other people. When you or your partner have a chronic illness / disability it can heavily impact both your social lives. Social interaction is incredibly important for mental health and again this has helped him enormously.

It is important that a carer can step away from that role and get some respite from the daily grind of work and caring. They need time to be themselves, to relax and to be able to forget for a small amount of time the pressures placed upon them. I am envious that he gets to do these things because I no longer can. I will admit here that I do get jealous and insecure when he is mixing with other women. I compare myself to them and the life that he could have. I think its only natural when you are suffering from a chronic illness / disability for your self esteem to take a bit of a bashing. Thankfully our relationship is solid enough for us to discuss my feelings of insecurity and jealousy. He understands why I feel like that and reassures me that he only wants to be with me and he respects our wedding vow of "in sickness and in health".

I know that I am incredibly lucky to have my husbands support. I won't lie and say that there aren't days I could happily throttle him! No ones relationship is perfect and I am certainly not suggesting ours is. A good relationship is built on a friendship. We are each others best friends and both of us are the type of people that would never walk away from a friend because they got sick. Through my experience of chronic sickness over the last 7 years I know that many friends do walk away without a backwards glance.  

So to break it all down here's what works for us in weathering the storm together;

1. Support each other through the ups and downs.
2. See the other person's situation / point of view.
3. Get as much family / friend support as you can to lessen the burden.
4. Find out what the source of your anger is and don't take it out on your partner 9 times out of 10 it won't be them that you're angry with.
5. If you or your partner is suffering with stress / anxiety / depression speak up and get help. As you can't change the situation you are in, you do need help either through counselling or through medication or both. Mental health issues do not just go away of their own accord and you need to get some help.
6. Guilt - is a completely normal feeling for both of you to have. The sick person feels guilty that their illness has changed both your lives. The partner feels guilty that medically there is little they can do to help or change the situation. Talk about it, do not let it fester away.
7. Find something you can do together rather than separately. Make it the thing that you always do together. For us its watching certain TV shows or films. Sometimes we also prepare meals together. Spending time with each other and not talking about the day to day mundane stuff is good for both of you.
8. Encourage the carer to take some "me" time. Working and caring for someone is hard work and stressful. Its important that they get some respite from both. Encourage them to take up some exercise (its important they don't neglect their own health through being so focused on yours) or something where they mix with other people like a club or educational classes. It is important for them to just be themselves.
9. Talk to each other, even couples that have been together for a long time forget this one. When communication stops, cracks can appear. Take the time to hear what the other person is saying, listening and understanding are just so important.
10. Physical contact, sex can fall by the wayside when you are chronically sick / disabled. You're too sick, they are too tired. When sex goes physical contact can disappear as well. Its important that you show each other physically that you both still love each other.Tell them that you love them! Make sure you kiss and hug each other daily. Hold hands in the car, cuddle up on the sofa make physical contact. Sex will return however its not the thing that holds a relationship together. Love does that.

That's how we are weathering the storm together.

21st Wedding Anniversary

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.

Confidence

 I'm a bit calmer than I was last week and I have managed to carve out some time for myself to enjoy my creative pursuits. Which always puts me in a better frame of mind because it makes me feel like I have actually achieved something. I have struggled since being ill-health retired to feel that I make a valuable contribution to society. People always ask "what do you do for work?" or "D why Io you work?" and it is a real conversation stopper when you have to say "no I have been ill-health retired since 2008". My disability is pretty much invisible or not well understood by others, so even when I rock up in my mobility scooter or wheelchair people don't understand why I would need to use these.

I have in the past had family members that don't get the fact that I am in pain every day and that is all I have ever known. I don't tend to say much about it because well quite frankly talking about it bores me, so if it bores me what does it do for the other people? I am quite private which seems weird when I write a blog every week. There are very few people I am 100% honest with when I talk about how I am feeling at any given time. I learned from an early age that complaining about pain meant you weren't believed or were accused of being a hypochondriac and that was by people who should have known better as their job was to nurture and protect me. Plus as I grew up I made the mistake of being honest with people when I was in pain and it was used against me and I was told I was draining to be around. I know now that the woman I was dealing with, who was also my boss was a sociopath and completely incapable of  empathy towards me and even her own family. At the time though in my 20's her attitude was very damaging and stopped me taking care of myself when I was quite seriously ill for fear of being judged by her. When working in a close environment as I was and at her mercy, I was completely paralysed with fear. These days I don't put up with that kind of treatment but it has taken me a long time to get to this point.

Leaving work was hugely damaging for my mental health, even though the previous two years working had been extremely damaging also, when I was with a team that refused to acknowledge my physical limitations and I was treated like a burden. My card had been marked, my face no longer fitted and the senior team decided that I was going to be worked out. I desperately hung on making myself sicker and weaker until I collapsed and there was nothing left in the tank. I was admitted to hospital and slept for 48 hours solid, only waking for the bathroom and something to eat. I was burnt out by it all, physically and mentally destroyed, it took me a very long time to claw my way back and realise that despite not working I was contributing to society in my own way.

This is why sewing, machine embroidery, crochet have all become so important to me. They have been an outlet for my creativity that had been stifled for so long after being led to believe I was academic and not creative. I had no confidence at all when it came to being creative. I taught myself how to sew on my sewing machine, my embroidery machine and I then two years later taught myself to crochet. Due to being pretty much housebound and obviously numerous lock downs with Covid 19, Youtube, magazines and books have been my teachers. I do find I am a visual learner however many of these videos assume a level of experience I don't possess. So when it came to sewing I threw away the rule book, warp and weft meant absolutely nothing to me and nor did cutting fabric on the bias. Mostly I have got away with throwing away the rule book. I did the same with leaning how to use an embroidery machine, I embroidered designs on fabric that the book and many fellow embroiderers would have said wasn't going to cope with a dense design. I taught myself ways of getting the fabric to behave the way I wanted and have shared what I have learned with newbies. I make mistakes, of course I do. The number of times I have managed to catch a fabric underneath the embroidery hoop and rendered what I have just spent an hour on useless. I have many towels with half designs on where I failed to secure it properly in the hoop and the design has drifted from the outline. I like perfection when I embroider and sew and it is hard for me to accept anything less. Even though I know perfection doesn't exist.

My creative outlet hasn't just filled a void in the respect that it has given me something to do, it also challenges me and demands that I find solutions to problems. It uses my brain in a way that I haven't done since I stopped working, which is both exhilarating and exhausting in equal measure. So it was weird this year when suddenly I became anxious about using my embroidery machine and my ability to sew. It happened out of the blue, suddenly and unexpectedly I was too frightened to sew. Something I have adored since I started back in 2017. It meant projects were started and left semi completed for months at a time. My sewing area suddenly fell silent and gathered dust. I wanted to sew I really did but I couldn't focus long enough to do it or feel confident enough to. 

This year has been a tumultuous year with Jay's father passing away, me making a drastic change so that I walked away from those who were causing me harm and stifling my personal growth. There are also countless other things going on and I think the fear of sewing / embroidery was just a symptom of the mental anguish I was in. Eventually it got to the point where I had to use my machines as I needed to make a gift for a friend and I also needed to replace a wall hanging that I had managed to dye pink and nothing could be done to rescue it. In the end I just had to put my big girl pants on and take the plunge. I pushed myself well and truly outside my comfort zone, tackling projects I had always put off due to my lack of skill. I proved to myself I could do it and needed to stop listening to the negative voices in my head that had held me back my whole life.

I am rather thrilled with what I have created, it is still a work in progress and there are still days I have to force myself to get the courage to use my machines. Like the book says " I feel the fear and do it anyway".

All the fabric apart from the balck background fabric is Liberty. The patterns I got from www.womabtquilts.com - spinning compass points ( the central design) and the Flying Geese ( the triangles) are from www.forestquilting.com. Both patterns were free and just needed to be printed off. It is a technique called foundation paper piecing a technique which I have done only a around 3 times before attempting this piece and now I am completely converted to it. The reverse of my wall hanging looked like this,

I had great fun removing the papers although it did make a bit of a mess! 

Dembe was very curious

As I said it is still a work in progress and if I am well enough over the next few days I will be attempting to finish it.

My anxiety / confidence will always be an issue, I know now that sometimes you do have to fake it until you make it, pushing yourself to do the stuff you don't feel comfortable with as by running away from it makes it a much larger issue.

Stress, migraines and other sh*t!

 I have had a good few days over the last week with no headaches turning into migraines until this morning. Every night though I still wake up and have to change my pillows several time to make my neck and back of my head comfortable. More often than not I end up sleeping without any pillows. Something I haven't done since I was 18-19 when I had neck issues then. The problem is with being that flat I then quite often wake up with back pain between my shoulder blades. If I prop myself up I end up with back pain in my lower back. If I could just find the one sleeping position that allowed me to sleep through the night without any pain waking me up that would be fantastic.

I can't really complain though after the years of insomnia I suffered from around 2008 until 2016 when I was given Melatonin. Back in the bad old days I would only sleep between 2 -4 hours a night for two nights then on the 3rd night get no sleep at all. On the 4th night I would sleep 12 hours and then feel absolutely terrible, almost like I was drunk without the fun part. I did absolutely everything I could to get to sleep, lavender sprays, lavender sachets in my pillows, not using the TV or phone in my room, all without any success. This cycle of so little sleep had a very bad effect on my mental health and my pain levels. Everything felt heightened, my pain could be off the scale frequently and my emotions were all over the place.

This 4 day sleep cycle would just repeat over and over. I would occasionally get six hours sleep which would be a treat. The most frustrating times were when I would drop off to sleep and then two hours later wake up and that would be it for the night. I existed on cigarettes and mugs of tea. Usually one of the dogs would keep me company and they would swap over so that they all did a few hours each. Even now if I get up in the night I am accompanied by Dembe. He will either sleep right beside me, like he is doing now as I write this blog post or he will sleep on the sofa opposite to the one I am on, so he can watch my every move.

Dembe the Labrador is curled up on the sofa, the MG Kids leg is in frame along with her Chromebook, which is open on her lap.

I cleared this morning' migraine quite quickly with a dose of Sumatriptan. However due to the stormy weather ( we have a weather alert for heavy rain and thunderstorms until this evening ) the top of my head feel's like it is in a vice and being squeezed so hard my eyes feel like they are going to pop from the sockets. For as long as I can remember I have had headaches when the weather is stormy. I feel a bit cheated though as friends over an hour away have had massive thunder storms. Mr Myasthenia Kid's mum rang us to check we were ok as where she lives they have had torrential rain and copious amounts of lightening. We have had a few showers and currently the sun is shining. It is very humid so I haven't bothered sorting out my hair. It will stay straight for 30 seconds and then frizz. There is no point wasting any energy on it.

This will sound completely bonkers but I am quite a private person, despite the blog and talking about all manner of things. There are things I keep private because they involve other people or because I just don't want the sympathy vote. Sometimes I am still processing stuff in my head and just don't have the energy to deal with the questions that writing about an issue will cause. Things are really stressful here at the moment, we never seem to get a minute to catch our breath. But we keep going like everyone else does because the world doesn't stop just because you are having a shit time.

There are several issues going on but the one that is worrying me most at the moment is Dembe ( and this was probably the source of the migraine this morning). On and off for a few months poor Dems has had an intermittent limp. Not an obvious one, one that unless you knew what you were looking for you wouldn't know it was happening. We had him at the vet's last month to be checked out and the vet couldn't observe it in him, isn't that always the way. He was put on some medication a it was hoped that perhaps it was a soft tissue injury that needed some rest and some anti inflammatory medication would help. Within a few days he was doing so much better and no more limping. As a precaution we cut his walks with the dog walkers right down to the bare minimum, ensured he didn't do anything too physical. Sadly on last Thursday the limp came back, I still had pain medication so I gave that to him. The limp settled and then on Monday was back again.

I rang the vets on Monday evening and got Dembe booked in for an appointment the following day. Mr Myasthenia Kid took him to the appointment as they only allow one of you into the building at the moment due to Covid. This time the vet could see the limp and she gave Dembe a full check over. Since this limp started there has been no swelling, no heat coming off any of the joints in his leg and for the majority of the time his limp is very subtle. You actually have to watch his head as he is walking towards you, every few paces his head bobs down, that's how subtle it is. It is so intermittent that we and his dog walkers have been unable to catch it on video. So the next step is x-rays of both his front legs. The vet has checked his back legs and his hips are sound. Hip Dysplasia is a massive issue within the Labrador breed and we ensured both his mum and dad had low hip and elbow scores. We also stuck to the rules about not allowing stairs until he was old enough and also we stuck to the exercise rule of 5 minutes exercise per month old. However sadly Labrador's are also prone to elbow Dysplasia and no matter all the precautions you take with your pups sometimes shit happens and this could be one of those times. I am not too concerned as he is insured, so they will pick up the tab. It is the fact that he maybe in pain, that he has to go to the vets and stay there when he has only ever been left for 30 minutes with someone else in his life since he was 8 weeks old ( other than his dog walks).

Those of you who have followed my blogs will know about our first dog Travis who passed away shortly before his 3rd birthday. As a teenager we also lost a family dog when she went into be spayed as she was allergic to the anaesthetic a situation that was just tragic. For some reason with Dembe I have always wrapped him in cotton wool and my fear about him having to be sedated for the x-rays really has me on edge. Plus the fact that he is coming up for his third birthday has me freaked out. I know he isn't sick like Travis was but I am just paranoid about it. If you want to read more about the dogs we have had please use these links http://themyastheniakid.com/2014/10/30/the-dogs-in-my-life-part-one/ and http://themyastheniakid.com/2015/08/06/the-dogs-in-my-life-part-two/ . I need to write part three to cover Willow, Frankie and Mollies passing within 55 weeks of each other but even though it is several years on it is still just too raw.

I was much more chilled with the other dogs, than I am with Dembe. I have gone back to being like a brand new dog owner and going to the vet about everything! I did feel when we brought Dembe home I had completely lost my confidence and I was always terrified I was going to hurt him ( accidentally obviously).

So until the X-rays come back from the orthopedic specialist we will be none the wiser as to whether he has Elbow Dysplasia or a soft tissue injury or anything in between. If it is Elbow Dysplasia depending on how bad the joint is the treatment could be conservative, treating it when it flares up, reducing his weight a little etc or it could mean an elbow replacement. The thought of which terrifies me as the recovery period is 12 weeks of crate rest which he will go bonkers, quickly followed by myself and probably Jay. So for the moment all professional dog walks have been cancelled. He is allowed 25 minutes off the lead a day and then small lead walks as he point blank refuses to go to the toilet in the garden. He has had his pain medication increased and hopefully that is helping him. The vet constantly reassured my husband that she felt whatever the issue was it has been caught early so the damage shouldn't be too great.

Dembe is fine in himself, loving, affectionate, eating and drinking fine. He keeps wanting to zoomies in the house so I am having to think up games we can play that doesn't involve too much food and too much movement! He is pretty chilled most of the time and is quite happy to snooze. I just thank our lucky stars that he is no longer a puppy as he would be manic with the need to burn off energy.

So the migraine this morning was not unexpected as that seems to be my default setting when stressed and at least they have reduced in number since my whinge post.

The last Bank Holiday of Summer 2021

 The last bank holiday of summer has been and gone, (celebrated in England, Wales and Northern Ireland), for many it signals the end of Summer and the start of Autumn. I can't believe it is September already, the weather is certainly letting us know it is by being markedly cooler. In some ways this year has whizzed by and in others it has crawled. It has been a strange year here at the Myasthenia Kid house, full of sadness and wishing that things could be different. It has been 8 months of constant change and things don't look very settled for the future either. Some days it feels like you are in the eye of the storm and others that you are on the outside edge of it looking in. All I can do is be there for those that need me and hope that it is enough.

The one bit of good news is that my headaches / migraines have eased up ever so slightly over the last week ( runs around furiously touching wood). Dare I say it I have had a couple of headache free days. Which is a miracle after the last 4-6 weeks. I did end up with a bad head last Sunday evening, mainly due to the fact I was out in the sun all day with no hat on ( my own fault I forgot to bring it with me) and I was probably a bit dehydrated as I just didn't drink enough during 5 hours that we were out. It meant I ended up going to bed very early and the following day I had issues with my blood pressure being very low. As soon as I had drunk enough I started to feel much better.

I ended up increasing the amitriptyline I take for nerve pain last week and that seems to have helped knock the headaches back a bit. I can still wake up with a sore neck and head but with a hot water bottle applied for an hour or so it does ease up considerably. I always try not to take medication unless it is absolutely necessary, which probably sounds ridiculous with the amount of medications I have on repeat prescription. I am always concerned that the Sumatriptan will stop working so I always try to head off a migraine before it is needed. Sunday night I ended up taking it along with 3 soluble aspirin and paracetamol as per the protocol I am supposed to follow. When I have a particularly vicious migraine this always helps massively. I have now started using the 3 soluble aspirin and paracetamol when I have a bad head that is not quite a migraine, that's usually enough to clear it. I am hoping now that I have got on top of the headaches / migraines now I can slowly put an end to this debilitating flare up that came out of nowhere.

As I said earlier we all went out together as a family on Sunday, me, Mr Myasthenia Kid and Dembe. I do love it when we can escape our four walls every now and again. People don't realise how small your world can become when you are pretty much housebound. A change in scenery always does my soul good, we travelled down to see Mr Myasthenia Kid's mum and catch up with some family who were also dropping by. I saw one of my nephews who I hadn't seen in such a long time over ten years. He is so tall now and what a good looking chap he has turned out to be. He was busy organising the cutting of Nanny's lawn with the petrol Lawn mower by another of my nephews. Jay and his brother and my niece were cutting the front hedge. Whilst me and my sister in law tackled some brambles with secateurs and supervised the dogs. We got torn to shreds as we didn't have any gloves. I didn't even realise I was bleeding until I noticed the handle of my secateurs were wet. I ended up covered in plasters. It amazed me how much everything had grown in the few months since the last time I visited at the end of May.

It is a really lovely garden and Dembe loves running around in it. Quite often we will catch him doing Labrador zoomies by himself out there. The garden is a little sun trap and gets the sun all day long, so I am gutted I forgot my bloody hat! I have never really done any gardening before, I have popped a few plants in a pot and weeded from time to time but I have never done any real cutting stuff back or pruning out the dead wood from shrubs. I actually found it rather therapeutic and it is handy that quite a bit of it can be done sat down. I did pay for it on Monday and Tuesday but like most people who are chronically sick you don't mind having a few rough days if you have actually done something to warrant it. It is when your health takes a nose dive and there is nothing you have done to trigger it that you get angry / frustrated.

Thanks to the bank holiday I will be completely thrown out for the rest of the week. I wont know if I am coming or going or what day of the week it is. I see Mr Myasthenia Kid has started getting the bins ready for Thursdays collection ( I am writing this on Wednesday) I will have to break it to him gently that due to the bank holiday Monday the bins wont be collected until Friday. Plus with Mr Myasthenia Kid not working a late today like he normally would that will really make my head spin and I will not have a clue what his shift pattern is until I am in front of a calendar.

The next bank holidays in the UK won't be until Christmas (I do believe we need more between September and March) as Mr Myasthenia Kid has a generous annual leave provision he has another two weeks of holiday booked between now and the second week of November. His first week is at the end of September around our 21st Wedding anniversary, I am struggling to comprehend that we are 4 years away from our Silver Wedding Anniversary ( 25 years ). He has another week booked off for our birthday at the start of November. So it isn't too long at all until I will have some company for a week during the day. With Covid and lock downs it has been more isolating than usual, which is why I enjoy visiting Nanny Morris and catching up with Jay's family so much.

I'm back

 I'm back after my two week sabbatical! I am so glad that I did take that time off as, things never ever go smoothly in the Myasthenia Kid household and this "holiday" was no different.

The first two days of our holiday had been written off due to the fact we were having a new boiler installed and two radiators replaced. Everything was going swimmingly until the Tuesday morning when the plumber managed to go through the stud wall when hanging the bathroom radiator. It isn't the first time this has happened, when installing a toilet roll holder for me, my next door neighbour went straight through the stud wall. Yes our house is that poorly constructed and the shock of it is that this is apparently worth £224,000-£234,000 in today's market. How on earth is anyone supposed to get on the housing ladder these days? Anyway I digress. The contractors were  fantastic, the plumber was straight onto his boss and by the evening I had been emailed with a very sincere apology and dates / times of when people would be around to sort out the damaged wall. This was all great but meant a further 3 extra early mornings for us as the boiler installation went over into another day, and three visits from the company's decorators to fix the damage, sand the wall and then repaint.

*** for those of a delicate disposition skip the next paragraph!**

Hilariously on the second day of the boiler installation I came down with a stomach bug and not the throwing up kind. As I was sat on the sofa in the lounge I could start to hear every part of my intestines sloshing around and lots of gas also building up. Due to the stud walls in our house and it being a two up two down I didn't wish to share my experience of the stomach bug with the contractor, so I spent from 2pm until 5.30pm with my arse cheeks firmly clenched hoping that there were no suddenly loud noises. I had to time letting rip with the guy using the drill so that he couldn't hear me because the wind was so loud, honestly I could have filled a few helium balloons. Obviously as time ticked on it became more and more dangerous to break wind. Which led to the worse issue of my stomach just expanding due to the sheer amount of gas trapped. By the time the guy left after 5.30pm ,I raced up the stairs and over the course of the next several hours every thing I had ever eaten since 1973 proceeded to exit my body in liquid form.😂😂😂😂😂😂😂

** it's safe now **

Anyway I was fine the next day, thank goodness as we had the plumber back to commission the boiler and a decorator to do the first part of the repair. By Thursday I was on my knee's with tiredness as I really don't cope with early morning starts. I can get up early but having to get showered and dressed by 08.30am is really hard because there is no time available for resting.

I had been sleeping really well for a change and hadn't had to get up in the night and change my pillows to stop a headache . However for some reason on Thursday evening the neck pain I have been experiencing since 11th August 2020 ( RTC ) came back. I had a break of about a week and then on the 29th July the headaches and neck pain came back so severely I haven't known what to do with myself. I am sat writing this with a neck brace on because my neck is just so painful and I am again experiencing headaches day and night. Some of them build up slowly over the course of a day and then become full blown migraines. I seem to be on a permanent diet of sumatriptan at least once a day at the moment. I have no idea why it has kicked off even worse than it has been in a while. It has pissed me off today as I had planned to get some bits and pieces done and due to my head and neck being so sore I can't and that fucks me off when I am feeling ok(ish) with all the other health shit going on.

We did have a lovely two weeks together, even if we ended up with 5 days of contractors coming in. Mr Myasthenia Kid had to go down to his mum's for two days of our holiday and help her with various things. I really feel for him having lost his dad 19 weeks ago he had to face the fact his mum is terminally ill. He feels awful for being an hour away but he also has me and Dembe to care for whilst working full time. It can't be easy for him. He feels like he is never with his mum enough and no one should ever feel like that. I don't think his father's passing has hit him properly, I am fully expecting him to come down with a huge bump when the American Football season starts as this was the thing that he and his dad could talk about for hours. Although there are people at work that he can chat to about the football, it isn't the same as chatting to your dad about your favourite team - they are Washington Fans. 

So I do the best I can keeping things on an even keel at home, managing my health to keep it stable. Try to support him when he lets me in and tells me what is going on in his head. It is hard but at least he has started telling me the days that he is struggling.

Dembe adored having his dad home for two weeks. The first week Mr Myasthenia Kid was home I barely got a look in. It was the Dembe and daddy show. His little boy followed him everywhere. On the second week Dembe suddenly realised I was still here and then shared his cuddles out equally. To be honest I never mind about the Dembe and daddy Love In, as I know I get Dembe to myself for 5 days a week around 9 hours a day most weeks of the year. I love the fact that when Jay is home Dembe has to show him how much he loves him.

Dembe also enjoyed barking at all the contractors we had here as well! It was only on the third day that he stopped barking at the plumber. On the day when the wall was repainted we got him a Venison leg to chew on. He absolutely adored that and it kept him busy for a good 90 minutes allowing the decorator to come and go without being barked at.

The two week's went by so quickly, Dembe and I are now getting ourselves back into a routine again. Thankfully we have both slipped back into our usual work day routines nice and easily.

I forgot to say on the first weekend of Mr Myasthenia Kids holiday we attended a wedding reception in the evening. Dembe went in his Tuxedo and was the belle of the ball! Even the official wedding photographer took his photograph.

To attend the wedding reception we had to do Lateral Flow tests for Covid. Up until then Jay and I had managed to not have to be tested for Covid. Jay was a bloody nightmare, he is useless with stuff like this. I dread anything where he may need eye drops etc as he can't relax and allow you to do it. He scrunches up his eyes and then tells me he isn't scrunching up his eyes. So I knew the covid tests were going to be a barrel of laughs. Our Lateral Flow tests needed us to swab our tonsils 4 times each and then using the same swab, go up our nose and almost tickle our brains with the end of the swab. I did mine myself no issue. I have virtually no gag reflex, nothing happens when something hits the back of my throat. I can't even make myself sick. I knew Jay would be the complete opposite.

I ended up having to get a teaspoon from the cutlery drawer to hold his tongue down as every time I swabbed his tonsils he gagged and his tongue hit the swab. When I did up his nose with the swab he couldn't stop laughing and then he sneezed around 4 times. Poor sod as the first test he did came back as null and void so I had to repeat the process for him. We were both negative.

When Jay was walking Dembe around the block later that day our neighbour asked him if his test result was negative. Thanks to the open patio door in the kitchen as I had done the swabs our neighbours had been entertained by me telling Jay to pull himself together and allow me to swab his tonsils. Only in our house!😂😂😂😂😂😂😂😂

So as you can see it has been a fun packed two weeks. We enjoyed the wedding reception and got to catch up with a few people I haven't seen since I left work, so that's 13 years. We only stayed 2 hours as I was struggling with pain and temperature control. But it was worth it to just see everyone's reaction to Dembe who was treated like a Prince and brought his own water bowl by the staff who worked there.

It did seem strange not to be blogging or thinking up blog posts whilst I took two weeks off.

 I'm back!

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.

Campaign update - Success

As I wrote last week's blog Success, I was aware of another success that I had obtained which was keeping the General Medicine and Autonomic Clinic at Derriford Hospital Plymouth open for at least another year and managing to keep Dr Fulton on n his position to run it. Obviously the success is not mine alone, many people were necessary to get us to this place, the members of the campaign group who were willing for their stories to be shared in print and on the television. Members writing to their MP's ( members of Parliament ) to force action, plus a widespread email campaign to many people involved in all aspects of healthcare.

As part of the campaign one member managed to get Baroness Blackwood to raise a question in The House of Lords ( Parliaments upper chamber ). The Baroness also suffer's from EDS and PoTS so knows how important it is for sufferers to have access to proper healthcare and the provision of clinics in the UK is woefully inadequate especially in the devolved nations, Wales, Scotland and Northern Ireland. This was an incredible achievement in itself to raise the campaign profile and get it mentioned for prosperity in Hansard ( the document that records all questions and answers in both houses).

We had some excellent coverage in Plymouths newspaper and their online presence. We had two journalists join the group, whilst the BBC's coverage was poor with incorrect figures being presented as fact, they claimed a mere 200 patients would be without care when the actual figure for those in Derrifords catchment area was 1000-1500 and that was without all those who were dropped from Dr Fulton's list in June 2020 who were not in the hospitals catchment area and have been left without a consultant. You can read  first article here. The second article when we knew the clinic had been saved for at least 12 months and Dr Fulton is taking a much needed break of two months, can be read here. The journalist Molly has been incredibly supportive of our campaign and has produced two excellent pieces that have held Derriford Hospital to account. Thank you to Rebecca for sharing her story and explaining why Dr Fulton is so important.

I am amazed that we have achieved all we have in the short space of time since the 26th March when I asked the question at the hospital trusts board meeting, to starting the group and producing a letter to be sent out to various different groups and people to publicise our campaign. Thanks to Carol who managed to wrangle my 6 page goodness knows how many words into a succinct 3 page punchy letter that was hard to ignore. It is a real shame despite contacting my own MP by post, by recorded delivery and by multiple emails he failed to respond or provide any help at all to our campaign. Yet there were Plymouth and surrounding area MP's who were more than happy to roll up their sleeves and fight for their constituents and this wasn't just based on political parties, we got cross party support. Which shows how effective a campaign can be if you can get people in power interested in it.

Sadly I am aware that as Dr Fulton is on a fixed term contract and this next year marks one commissioning cycle we may still very well be in the same position next year especially if long Covid sufferers have been forgotten. People with Long Covid seem to develop Dysautonomia more specifically PoTS. Having that to use as part of the campaign made it very relevant to the media and it also gave us the advantage with Derriford as closing the clinic would in effect mean they were withdrawing care from an emerging patient group.

The group will be staying on Facebook as long as it is needed, plus now it has turned into quite an effective local group for PoTS patients, which is another thing to be proud of.

At the moment I am still left without a hospital consultant, there is no one based at the largest hospital near me and Dr Fulton was my consultant until June 2020. He is hopeful that he will be able to treat patients who are out of area at some point in the future and I am keeping everything crossed for that. The main aim of the campaign has been achieved for the moment.

I can't lie it has been pretty exhausting organising a campaign in the midst of a significant bereavement for my husband and his family. There have been days when it has felt like my world was imploding, where I was so exhausted that I couldn't continue and then I would get a message out of the blue from a member of the campaign group thanking me for everything I had done and that gave me the strength to continue. I am happy we have got as far as we have in the space of a few months and that I now don't have to be continually thinking about our next move as a campaign.

Whitsun Bank holiday

Sorry this post is going to be a short one as I am just not feeling that great.

I don't know what it is about the first few days of meteorological summer but I am always left feeling really rough for the first few weeks. You would think with the sunshine it would leave me with less joint pain and with my spirits lifted. But over the years I have found the opposite to be true.

Thanks to Facebook memories I know for the last few years every bloody Whitsun bank holiday has resulted in me having an awful migraine. The common denominator in the last few years has been the weather, brilliant sunshine and the fact that I have spent the majority of the day in the sunshine. My Whitsun migraines are ones that even Sumatriptan struggle to shift and give me a searing pain in the centre of my forehead that makes sleep impossible and I am left feeling battered and bruised the following day.

I am still exhausted from seeing family at the weekend and the mega migraine. So much so that I have barely done a thing since, other than get dressed. Today I am still out of sorts and I am freezing cold because due to the UK's wonderfully crazy weather we have gone from 23 degrees ( and more) yesterday to rain and temperatures hovering around 15 degrees. For someone like me who struggles to maintain their body temperature at the best of times, I was just getting used to the heat when I am back into a sweatshirt with my finger nails going blue from the cold ( and shitty peripheral perfusion due to PoTS / ANS dysfunction).  

I find any seasonal shift difficult to cope with at the best of times but this week has been a real shocker after needing fans on constantly to suddenly feeling like I could do with having the heating on or wearing several layers. Until we are in a regular weather pattern I will struggle adjusting to the heat or the sudden drops in temperature. Any swings in temperature upset my joints. So with the change in weather front coming in overnight from yesterday afternoon I was left feeling like my joints had been set on fire. It was just so uncomfortable and I really struggled getting comfortable. The joint pain only adds to the exhaustion because it is a constant battle with temperature regulation versus being able to use heat to ease my joint pain - which is the only thing that works and is not much fun during the summer months.

I did have a lovely Sunday and despite being wrecked for the last few days it was worth the trip. Dembe certainly enjoyed himself, whenever he is happy I am happy!

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.