New Things

Six weeks ago I did something crazy. It had been in my head since before Christmas and I had been spending an age mulling it over too scared to say it out loud. It took until after Christmas for me to even say to anyone what I had been dreaming up.  One day I mentioned to my husband what my idea was, he assured me it wasn’t that crazy and that if I didn’t try I would never know.

To some this idea won’t sound that crazy at all but believe me it sent my anxiety into over drive. My big plan. my crazy idea, wasn’t really out there at all. I just wanted to start up a monthly coffee morning for like minded crafting friends who would like to learn new skills, solve a craft problem, get hints and tips etc. I will be honest  through 2019 I was a bit of a hermit, some of it self imposed, some of it well read my post Reflections and you decide. I was going months and I mean months without seeing anyone other than Mr Myasthenia Kid or Dembe. Ok so that is a bit of a half truth there as we were going to dog training but a 5 minute conversation once a week with someone other than my husband is not socialising. Especially when the topic is just Dembe or dogs in general. My mental health was being crushed, although creatively I had never felt so fulfilled as my sewing / embroidery had taken on a new direction. My anxiety was really getting bad around social interactions because I literally just wasn’t seeing anyone.

Chronic health conditions impact so much of my life, it limits the time I can spend doing it. I would love to run a small business selling items but my body couldn’t cope with the work load that something like an Etsy shop would produce. I can’t do craft fayres as I couldn’t sit there all day without then being sick and exhausted for weeks after. Crafting is my life it gives me the reason to get up and keep going every morning. Without it I would be very lost. However part of crafting is sharing your triumphs and disasters. Whilst there are various Facebook groups ( some of which are very supportive, others are like a nest of vipers) it isn’t the same as actually speaking to a real live human being. I can no longer drive as I lost my driving licence 5 years ago due to my medical conditions. Public transport is too hard going for me. I rely on Mr Myasthenia Kid if I want to go anywhere so attending guild meetings hasn’t been easy due to his work schedule. I wanted something that combined my love and appreciation for all crafts and a social atmosphere. So I took the plunge.

I knew the name I wanted for the group – “The Stitchin’ Bitches”, I also knew due to the size of my house numbers would have to be limited, if anyone wanted to come at all. A friend of mine reached out regarding a crochet issue she was having, we are both self taught and only in the last few months. I casually mentioned in my response that should I start up a group for us to meet and discuss our crochet ( and other crafts) would she be interested. She almost bit my hand off, she would be extremely interested in it and what a good idea. 

Even though I had this positive response I still left it at least a week until I built up the courage to put up a post on my Facebook timeline asking if there were any like minded crafter’s like me that wanted to meet up on a monthly basis and do crafts together. Be it crochet, knitting, embroidery, sewing. I had a lot of responses but it was from people in different parts of the country saying that they wished they lived near me as they would be there like a shot. Initially responses from local friends was slow, embarrassingly so. I was starting to think that maybe there wasn’t any desire from any of my friends ( other than the first one I spoke with). Determined not to take the lack of response from my first post as the definitive answer I posted several more times. Each time I got responses from people outside the area that I lived , even the friends I have made world wide via various health forums wanted to come. But in the end I had 4 people interested which was a good number – remember I live in a tiny house.

I set up a private Facebook group for us all to be able to post in and then set up a poll so that they could let me know what days suited them best to hold a meeting. I had envisioned when I first embarked on this idea that it would be one hour a month – which for me was fine as it would give me time to recover and give me some social time. We decided Mondays were best and set the date for our very first meeting of The Stitchin’ Bitches – they all loved the name by the way! I think we sort of sound like a Country and Western group LOL!

Initially it all seemed fine until my anxiety kicked in the day before our first meeting on Monday 10th February. I was just terrified that the meeting would be a flop, that people wouldn’t speak to each other or that after 30 minutes people would be racing to get out the door. I was so anxious I barely got more than 2 hours sleep, I tossed and turned all night. This would be me hosting an event ( thankfully all my friends know I am poorly and will pitch in with making drinks etc if needed)  without my safety blanket of Mr Myasthenia Kid. Also some of the people attending I hadn’t actually seen since I left work in 2008. For me it was a huge gamble. I am always really anxious when people come to the house anyway, I worry that they think it is dirty or uncared for etc. Its hard to keep on top of stuff when you aren’t well and all the DIY stuff falls on one partner. So I know there are some places crying out to be redecorated etc. I was also worried about people judging me, on the outside I don’t look sick but every day is a battle of some sorts. I worry that people think I am taking the piss because no one ever see’s me when I am really poorly.

Monday 10th February seemed to come around so quickly. By the time 11am arrived I was pretty knackered just from the sheer anxiety creating this “event” had caused. I really shouldn’t have worried. I also wasn’t the only one who had been anxious, a friend confided in me on leaving she had been terrified to attend. As for thinking they would all be racing for the door at 11.30am nothing could have been further from the truth. It was 13.30 that the last person left and the first person had only gone around 15 minutes before that. I had been concerned due to the fact that we all had one work place in common that we would end up discussing that but again nothing could have been further from the truth. It was barely mentioned and that was only as people left. It was just so lovely to have a few hours with people whose eyes didn’t glaze over when crafts were mentioned. I know I can get very passionate about my projects, so it was nice to answer peoples questions about the techniques I had used etc. It was equally nice to see what my friends had been up to. For all of us it was so uplifting to get out of the house and socialise – obviously I didnt go far!

The really nice thing was that as the meeting / gathering was drawing to a close one of the lady’s said “Rach, any chance we can do this once a fortnight? I don’t think once a week is enough”. Everyone else was in agreement also. I said immediately that no one would “have” to come to every session especially if they felt fortnightly was too much, that I was happy for people to dip in and out as needed. But the buzz the morning had created was so great that we set up the next few weeks worth of meetings. I was so proud of myself and what our little group had achieved. I posted on my Instagram account about it and now several other people dotted around the country have decided that they are going to do the same thing. Which is really lovely as it is such a boost for your mental health and to stop the isolation that is all too common in the world.

Today (Monday 24th March) we held the second meeting and today we had the grand total of 7 people here (including me). Dembe was like a dog with two tails, with all the love and fuss he got from everyone. Today two members learned how to start to crochet – slip knot, chain stitches and then double crochet ( UK ). Another lady had a refresher on crochet and learned how to do a Granny Square for the first time. In the corner a lady was being taught to knit. Mr Myasthenia Kid is on holiday this week from work and made himself scarce for a bit having a wander around the town. However he said the buzz and positivity he got from the room when he came home was amazing. He said he was so proud of me for being so brave to try and do something to end my own social isolation. He did make us all laugh as when he walked in he said “good god is this the budget version of the Playboy mansion”. Considering our age ranges were from 21 to 70’s it was hilarious. 

We were also spoiled by a new member who brought homemade scones, jam and cream for us to have as a crafting snack! And bloody gorgeous they were too. I had decided yesterday to make everyone little paper tissue holders as a way of saying thank you for coming and making it such a success. 

I can’t lie after every meeting I have been utterly exhausted. If I knew that it wouldn’t impact my nights sleep I would go for a nap in the afternoon. Mondays after are written off with me having a lazy restful afternoon on the sofa but mentally I feel so uplifted and happy. I am so glad that I pushed myself to do something totally outside my comfort zone and I hope I inspire others to take that chance and do new things.

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On Thursday 20th February, I had the worst migraine I have ever had in my life. It was so bad that I am actually suffering from amnesia caused by it. I have “lost” most of Wednesday 19th, the majority of Thursday 20th, Friday 21st quite a bit is unrecoverable as is Saturday 22nd.  It is only from yesterday on-wards that I can recall anything that happened during the day with any clarity.  I won’t lie this has scared the shit out of me. Which is why I haven’t done a huge detailed blog post because basically I don’t know what happened to last week. I have a gp appointment booked because I need to know that this was just a horrific migraine and that I can be referred to see a headache specialist or if it was something like a TIA that can also be looked into. Having Google at our finger tips can be a curse and a blessing but as I can’t account for much of last week and this has never happened to me before with a migraine I can’t just ignore what has happened. Anyone who knows me also knows that I don’t run to the doctors every 5 minutes so it has really shit me up.

As soon as I know you will know.

Turd Cake

I will be honest very little about my health gets me down. Well not strictly true, the migraine situation ( up to three a week) was pretty trying but thankfully that has settled, plus when I have a CSF leak flare up of symptoms but that is more of a freak out along the lines of what if it doesn’t heal and I have to spend the rest of my life in bed ? I don’t know if I can do it. The injuries from the road traffic incident are really messing with my mood at the moment and I feel a bit of a flake due to it. I put up with a lot of shit that seems to be continually thrown my way but I am struggling to deal with the constant pins and needles in my left arm / hand along with the burning pain that comes with it. Topped off with a numb left buttock which is the icing on top of the turd cake, I am struggling.

I spent last week feeling really tearful, the physiotherapy session from the week before had done nothing but make everything hurt more. Six weeks after the accident and instead of things improving things are getting worse. The pain is like electric shocks, you never know what movement will prompt the sharp zing of pain radiating either from my neck or my upper back. My left shoulder is grating in the socket. I have had enough, it is as simple as that. The only time I am free from the pins/ needles / burning / numbness is when I am asleep and even then I am being frequently woken up by the pain in my neck. And just when you think things couldn’t get worse they do.

On Saturday I had a video call with a private Doctor for an assessment of my injuries following the car accident back in August. I had all my notes written out, a list of my prescription medication printed out, I was all prepared for the “meeting” which I was anticipating to last around 30 mins to an hour. So you can imagine my frustration when I was rushed off the phone in 8 minutes and 22 seconds. I was told that my injuries would take months to heal and that he would organise 8 sessions of physio therapy. Basically as soon as he found out I didn’t work, it didn’t matter how my injuries were impacting me. I was sat dumbfounded in shock afterwards trying to work out what had just happened. Every time I went to speak I was talked over. He was completely clueless about EDS, so when I say my range of motion is reduced, it doesn’t look like it as it has just reduced to a non EDS persons range of motion. You need the input of someone who knows me and has been treating me for years. Yet my whole case could be settled on the basis of this arsehole doctor. I cried. I cried because I felt like I hadn’t been heard, I cried because I felt like I hadn’t been believed and I cried because yet again I was going to have to fight another battle for a situation that hadn’t been caused by me but some stupid twat driving a BT open reach Van and him not paying due care and attention.

I was shocked at how low I was and how easily the tears came. I am not one that dissolves into tears over stuff that is to do with me. I will cry at tv shows etc but I am not one to sit and sob about my life. I made that decision a long time ago and felt that it would be a waste of time and energy. But Saturday I just didn’t care. It was just another punch in the gut.

I’m afraid to say I just wallowed a bit Saturday morning. I wrote a very strongly worded email to my solicitor pointing out all the issues i had with my 8 minute and 22 second health appraisal. I really wouldn’t mind but that doctor will be being payed hundreds to churn out these assessments over video calls and it appears there is no quality control at all with them. I then was angry, angry that as soon as he realised I was disabled and not part of the work force that my life was some how worth less than other peoples. WTAF??? 

So after Jay had popped home for lunch and I had a bit of a vent to him I decided that I needed to push myself and do something on my embroidery machine. I hadn’t touched it all week as I had been feeling like everything I do is shit, I couldn’t concentrate and sitting at the machine isn’t very comfortable even with extra pain meds, special cushions and hot water bottles. I set myself the target of completing one piece. Within 15 minutes I was feeling much more relaxed and was actually enjoying what I was doing. I ensured I had lots of breaks and pottered about on the long stitch outs. I actually managed to get two blocks done and it was such a mental boost for me. It really cheered me up after spending the last 4 days on the sofa feeling sorry for myself. 

By sitting at the embroidery machine and forcing myself ( it felt like pulling teeth initially) to be creative, I proved to myself that I was good at something and that my life even with this constant nerve pain, was worth something despite the way the doctor had made me feel earlier on that day. I was in pain when I finished, it wasn’t easy but I did feel like I had accomplished something. Something other than wasting the afternoon feeling sorry for myself. 


For me being able to be creative is better than any drug, it lifts my heart and fills me with joy. It makes me feel good about myself. So on Sunday I spent some more time at my embroidery machine not because I was forcing myself to but for the first time in ages I wanted to.

These are for some gifts that I am making. Hence why I have started Christmas projects now as everything is taking me such a long time to do as it has to be done at a much slower pace than normal. I have even managed to get some blocks of my spells and potions quilt for Halloween started.

I am lucky that I am a) able to do these pursuits and b) can afford do them. I count my blessings every day but that doesn’t mean that everything is wonderful in my life. It just means I have a distraction from the constant nerve pain. Nerve pain which is the icing on the Turd Cake I am currently dealing with.

Setting Boundaries

I have always believed that conversations are a two way exchange of information, not a situation where one is supposed to sit their passively whilst someone else bombards you with information. Never actually allowing you a chance to say something or if doing it in message form never making you feel like your part of the conversation was read or acknowledged before they bombard you with a series of more short messages so that your phone is continually pinging and your head feels like it will explode. 

When someone treats me like this it is a massive red flag. It has taken me years to identify these red flags and I wanted to share some examples with you so that you know the sort of things to look for. They can be subtle but as a rule of thumb anything that leaves you feeling anxious, guilt ridden or just plain uncomfortable should be listened to. Don’t be like me and let this go on and on. Set your boundaries and stick to them.

For example of a red flag,  what reasonable person would attempt to guilt trip you for not getting your husband to do their shopping when we went into lock-down when a) he was not in work as he was in a vulnerable category, so we are having our shopping done by friends b) you live 30 minutes away from them so it isn’t a case of just dropping it on their doorstep? In typical Narc style when you offer them solutions such as their local community Facebook groups that have been set up to help people there is a long list of excuses as to why they can’t access them.

You know those conversations that leave you feeling emotionally drained? That you haven’t been heard, despite your best efforts you are left feeling guilty when you haven’t done anything at all wrong, other than state your boundaries by using the word no. Sound familiar? If so then you have probably been in contact with a narcissist or someone with narcissistic tendencies.

Now not everyone that bombards you with information without allowing you the chance to respond is a narcissist and sometimes conversations are emotionally draining due to the subject matter. I know that I can be guilty of talking too much and too quickly when I haven’t had any contact with the outside world other than Mr Myasthenia Kid. But I am not like that in every conversation you have with me, nor am I like it in every message. I’m talking about a very specific kind of person that either a) I seem to attract or b) I have had so much experience with this personality type that I can spot it a mile off. Yet I am still struggling to distance myself from them because I worry that because I have dealt with Narcs before perhaps I “see” those tendencies when they aren’t there. Narcs have the ability to make you doubt yourself even when you know 100% that it isn’t you, it’s them.

The problem with narcissism is that is it a massively under diagnosed disorder, so it is much more common than we are lead to believe. The reason it isn’t recognised as much as it should be is  because no one gets diagnosed with something unless they visit a health professional because they believe that something is wrong with them. The issue with narcissists is they truly believe there is nothing wrong with them and it is the rest of the world that is the problem. So why would they ever visit someone to get a diagnosis or fix them?  Plus no two narcissists are the same, they may do similar things from the narcissists play book –  they are always the victim of someone else’s behaviour eg jealousy, greed, abuse, poor ability to do their job etc etc Once you have been around a narc or a series of narcs you will notice how things are never ever their fault. They could be caught red handed and they will tell you to your face that it is your fault because you caught them! They never take responsibility for their own actions and their ability to rewrite history is breathtaking.

Confront a narcissist and you will be told that a) they have no clue what you are talking about b) whatever they said or did wasn’t meant like that and you should let it go, c) that it was a joke or d) it didn’t happen. The default setting is usually that it just didn’t happen. Even if you have the evidence in your hand that shows what took place they will tell you that it didn’t happen the way you think it did. This is called gas-lighting and is designed to make you question your own ability to recall events and situations. It is a way to keep you constantly off balance so that you never have the chance to question the behaviour of the narc as you are too busy blaming yourself for the events that have transpired.

Confrontation also runs the risk of narcissistic rage which if you have never been exposed to before can be frightening. They will literally lose their shit and be out for revenge by any means. There is nothing so angry as a narcissist who has been exposed, they really can’t handle the fact that they aren’t quite as superior as they have been making themselves out to be. There is no logic with a narcissist they simply don’t believe that you have the same intellectual capacity as them and as I have already said they will deny anything you confront them with and will attempt to change the path of the argument to make it about something they believe you have done and they will end up being the aggrieved party. It is crazy making and that is the way they behave, to have you constantly doubting yourself or making you feel guilty for not doing what they want.

When you read about narcissists online you quite often see the word Grandiose however I would argue that narcissism is a spectrum, some of them do have over blown visions of themselves and expect deference from all that they meet. Others however are more subtle, some will play a game of being better than you in whatever area they like to use to make themselves feel good, so cleverer than you, more attractive than you, more friends than you, more Christian ( insert any religion here), more forgiving than you, sicker than you catch my drift?

 A classic example of a narcissist is the type I call the martyr, they love to offer you help, they will put their own plans on hold and it would appear nothing is too much trouble. Yet behind your back slag you off for asking for help and act like a martyr to anyone who will listen ( another great way of becoming the victim for sympathy).  There are a lot of these Martyr’s around, if they have to point out to you all their good works beware! Most people are humble and modest they don’t need outside appreciation for doing good, the act is enough.

At the heart of every Narc is a shattered ego, someone who doesn’t actually know who they are, lacks empathy or understanding. They play at life adopting personality traits they think will ingratiate themselves with others. They can appear on the outside as thoughtful, kind, caring individuals but essentially it is all a scam. Once they have you in their clutches the facade will drop and you will realise to your cost that nothing you do will ever be good enough. Your needs, will never be met by them as they are far too busy sucking the life out of you.

Narcissists don’t inhabit one class or group, look hard enough and you will realise that you have met at least one if not more. In chronic illness groups they will always claim to be sicker than all the other individuals in that group despite their being evidence to the contrary. They claim to be in agony 24/7 yet on their Instagram account the one they forget that you follow, they post about their various day trips out or holidays abroad. If they were as sick as they claim to be they wouldn’t manage half the stuff they do.For example, I had one tell me when I had my CSF leak ( and was confined to bed for much of the time) that hers was so much worse than mine but she had to get up out of bed as she had kids. What she failed to realise is that with an active / bad CSF leak there is no getting up, the pain is so intense you simply can’t get up. If you do you can end up projectile vomiting for hours. Regardless of having kids or not having a CSF Leak is not something you can just switch on and off or pull yourself together from. There is no putting a brave face on a continuing with life as normal with a CSF leak. I am now semi healed from my leak but I still have days where I have leak symptoms. I am lucky many people never get to the point I am at.

Have you ever been in a working / group environment where someone is always giving you orders ( obviously your boss is supposed to give you direction)? That they want you to do all the running around yet they are the only ones capable of presenting all the information that you have researched for them and they will take the credit for. I have known far too many in work and outside work that will churn out idea after idea and will expect everyone else to do all the graft because they are just far too sick / too busy / too important to be getting their hands dirty. When you challenge them on this you are either talked down to or guilt tripped . I don’t mind someone who delegates but joins in. I have an issue when someone sets themselves up as an unappointed leader and expects everyone else to do their bidding. As always the narc is the centre of everything, the queen bee, whilst all the worker bees are running around for them. Also if their plan fails it will be due to your lack of effort and nothing at all to do with them. Responsibility just ins’t their thing.

They adore being the centre of everything, they lurch from drama to drama. Usually the drama is of their own making but they wont take responsibility for it. They also love creating drama between people, sometimes known as triangulation. So they will make out that they are siding with you against someone else whilst secretly doing the same with the other person. The reason you and the other person fell out is probably to do with something the narc said anyway but by the time you realise this you are in too deep and the drama has become an everyday part of life.

Narcissist also hate being corrected or “shown up” so if you point out what they are saying is factually incorrect or you point out to them that they are asking you to breach company policy / the law, they see this as a personal insult. How dare you question them, how dare you point out they made a mistake? They simply can’t cope with their mistakes being pointed out so fragile are they to criticism yet they have no issue at all dishing it out. Most Narcs have never dealt with someone saying no or setting boundaries. Those that have said no or set boundaries, usually do it when first meeting the Narc, when the Narc learns that person won’t be manipulated to their way of thinking they are dropped and a new person is adopted. They form friendships ( I use that term lightly as they should be called dictatorships) quickly, over sharing and appearing vulnerable so that you feel sorry for them. Their spouse is abusive, their doctors don’t believe they are sick, their relative is abusive to them – again notice the pattern always the victim. It is never just one of these things but usually a whole load of people that are abusive horrible towards them. 

I want to make it clear that yes people can be in abusive relationships, yes doctors can be a nightmare – hello have you not read my blog??? but it just isn’t possible that this person is always the victim. If they tell you they have a long history of people ghosting them / dropping them / disappearing from their lives without warning be on your guard. That is a warning sign that I have failed to take notice of previously. Always feeling sorry for the person that they were treated so badly. A person I knew would have these intense friendships with people, they thought this person was the bees knees. Then slowly but surely the complaints about the “friend” would start and then in a puff of smoke the person disappeared from their life, no explanation. I asked them about it once and was fed the line that people always seemed to do it to them. That people were always awful to them…….they were the victim. I accepted what they said on face value and thought poor them. Isn’t the world full of really awful people, not realising that those people that had disappeared had headed for the hills as soon as they could, before they were subjected to anymore narcissistic abuse.

I’ve rambled on for long enough my main point is, do listen to your instincts, if they are telling you that something isn’t right then it is a red flag. A word of warning though, when exiting a “relationship” with a narcissist always expect the smear campaign, they just can’t help themselves and will make up any old shit to tell their gullible sidekicks. They will accuse you of the most heinous actions, they will tell people you are a thief ( yet their favourite thing to do was borrow your stuff and then never give it back), that you abused them mentally, physically etc that you are an awful human being, they will even make up stuff about your nearest and dearest. 

They will also use their sidekick to try and hoover you back in, either by making excuses for them , “oh they didn’t mean to do that it was brain fog”, “oh they are really sorry for the way that came across”, yet they never actually manage to admit the mistake themselves, they get others to do it for them. The other one like to get their flying monkeys to do is attempt to guilt you back into the relationship ” XXX is seriously ill in hospital”/ “XXX is so sad that you didn’t wish them a happy birthday”/ ” I don’t understand why you can’t just forgive XXX and get along”.  When you refuse to be hoovered back in the narcs lose their shit again because they truly believe they should be able to control everyone. Anyone who isn’t under their control is automatically an enemy.

The question to ask yourself is am I a gullible sidekick? No one wants to think of themselves as gullible and I will be kind when it comes to Narcs you will be charmed into believing everything they say. Yet at some point in time something won’t sit easy with you. Ask yourself other than telling you something what evidence has the Narc actually provided you with? Having met the other person ( if you have) that they are smearing does what they say and the person you have met match up. Almost always your experience of the person and what the narc says are diametrically opposed. So use your critical thinking and never accept things on face value from anyone. In smear campaigns I have had some pretty awful stuff said about me and my husband and people have swallowed it hook line and sinker. Yet none of my actions or his have ever lent any credence to the lies being told. There is no proof of what the person is saying, yet their puppets accept it. 

Unfortunately the only way to deal with a smear campaign is to rise above it. Don’t engage with it, don’t lower yourself to their level. If people are stupid enough to swallow the lies being told to them let them carry on. The people that know you and value your friendship will know that what is being said is rubbish. There is zero point in caring about what people that don’t really know you think. There will always be people in life that don’t like you, what’s important is to only care about the ones that do like you. Trying to fight a smear campaign will drive you crazy and will end up making you look mentally unstable playing directly into the Narcs hands. I smile knowing all the bullshit said about me and knowing that they are clueless that I know. 

Know that there is no depth to which they won’t sink in a effort to look like the injured party. 

Remember in whatever friendship, relationship you have it is always ok to say no and it is always ok to have boundaries. Anyone who gets upset by that needs to be given a wide berth.

Great article where you can read about Narcs and the disorder in more depth here.

More info here from the Mayo Clinic

Wikipedia article

Good article explaining how they operate