Thursday, 19 October 2017

The Dentist

It’s 13.20pm on Tuesday 17th October and I am here stressing to high heaven because at 14.15pm I will be in the dentist’s chair. Like every single person I know with EDS, I hate the dentist. I am only going today so that I don’t get kicked off the list and end up without a dentist. The last time I was there it was a nightmare, which you can read about here in my post Blind Panic  . I am still really angry that he didn’t listen when I told him local anesthetic wears off on me very quickly. He obviously thought he knew better. I ended up chickening out of the hygienists appointment because I was having panic attacks a week before it was due. So today could be very interesting.


A few months ago one of my back teeth disintegrated when I was eating some chocolate. I wouldn’t have minded but I was nibbling at it with my front teeth when the back molar (upper right 7 I found out this afternoon) decided to just fall apart. I know the dentist will want to fuck about with this tooth, be it a crown etc but he will be told by me that I want it pulled if he wants to play with it. I don’t do root canals or anything other than a straightforward filling with my teeth. The reason behind this is I have a shockingly low pain threshold when it comes to my mouth. Anywhere else on the body I am an absolute trooper but I never get adequate pain relief when they are messing about with my teeth. At 43 I believe I am entitled to call the shots when it comes to my teeth.

I know some of the low pain threshold with my teeth is caused by the abject terror and stress a visit to the dentist causes me. Me and Dentists have never got on, probably because for a lot of my life EDS hadn’t been diagnosed, it didn’t seem to matter to the dentists treating me if there were tears rolling down my face and I was screaming whilst they were carrying out treatment. I was to be ignored because I’d had anesthetic, so I couldn’t possibly be feeling anything. The problem was I felt everything. Now the association is set in my  mind that whatever the dentist does will mean pain to me. My last dentist was brilliant, very patient and understood EDS. She had got me to the point of not being absolutely terrified, which was quite a step forward. Unfortunately she has left the NHS and now practices privately. I am hoping today that I will be able to find out where as I need to build my confidence back up and hopefully get her to have a word with the guy that is my dentist now. I am hopeful that due to me almost ripping the drill out of his hand last time that it was enough of a frightening experience for him as it was for me that he takes me seriously. But it’s been a long time since I went…………..deliberately.

There has been a lot going on here, decorating, a trip planned and me being much more unwell than usual. I had a very bad flare up of Hidradenitis suppurativa which then had an impact on my hemifacial spasms (**sarcasm) no really it affected my MG like symptoms really badly, (I have been exhausted, very weak muscles and ptosis coming on within 2-3 hours of taking mestinon). I have been on mega doses of antibiotics trying to avoid any surgical intervention as this is the worst flare up I have ever had. I am still not out of the woods as the antibiotics are due to finish shortly and the abscesses although have reduced in size are still there. If I could get out of going to the dentist today (not due to fear) I would have as I am utterly exhausted again today.

I am going to have to go and sort myself out ready to leave. The time is rapidly approaching for my appointment. I will let you know how I got on when I get back.

* * *

The good news is I am still alive the bad news is I need a filling on the tooth that disintegrated. It was quite amusing as the dentist didn’t remember me, so I gave him a brief overview of our last appointment. Which he laughed and then checked the notes, saying  “oh my goodness yes, I don’t remember it but it’s all here!” . I explained to him again that I am an absolute wuss when it comes to dental work. I told him that I believed a lot of it was psychological due to years of painful dental treatment when I haven’t been believed when I have told the dentist I can feel whats going on. That I now have a deep anxiety about the dentist and that I had chickened out of going to the hygienist in March because I had started having nightmares two weeks before the appointment.


I still don’t think he 100%  appreciates how very difficult it is for me to attend appointments just due to the fear but he was so gentle today, a completely different bloke than last time. Not that he was rough last time but he had a different attitude. Half way through the appointment he said “You can’t have adrenaline in your injections can you?” to which I nodded as his fingers were in my mouth. He said “ I remember you now, you faint if you have the adrenaline” again a gurgle and a nod for a reply from me. Obviously there aren’t too many of us that actively request no adrenaline.

I have to go back the second week of November for my filling, which is fine by me. It gives me a chance to chill out a bit after this appointment. I am utterly drained of energy now. I was better this time on the lead up to the appointment probably because there is currently so much else going on, I couldn’t sit and focus on it. Of course in three weeks I will have to go through all the stress again knowing I am going to have to have a filling but that’s life.

On the way home Jay said “I just don’t get why you have such a low pain threshold at the dentist and why you get so anxious, you’ve had lumbar punctures and all sorts of horrid procedures done without adequate pain relief” I agreed but as I have said I think it is a lifetime of painful dental treatment that has left me like this. He knows how hard it is for me to go and was telling me how brave he thinks I am for going. If I could get away with not going I would but I can’t having had dental abscesses before I need to be on a NHS dentists list.

Being a grown up really sucks sometimes.

Thursday, 12 October 2017

Odd Ones



A few weeks ago an incident happened that has happened many times before to me on social media, I was hit on by a complete stranger. They seem to all go to the same school of charm, as the same phrase is always used. I was told yet again “Btw (by the way) your profile photo is really sexy”. This always makes me roar with laughter as my profile photo is usually one of my dogs. I hate having my photograph taken and I rarely post photos of myself unless it’s of me with ptosis The men that use this phrase clearly don’t actually look at the profile picture they are sending this crap out to or they really do need glasses!

I suppose Frankie could look sexy if you were into that kind of thing LOL!



My husband had no idea how often this happens to me, I simply hadn’t bothered to tell him. I am probably like most women, so used to this crap that it really doesn’t bother me anymore. I might find it creepy some days but I usually send the person back quite a rude response and immediately block them so I can have no further dialogue with them. Due to my position as an admin on a Facebook group, I have to set my messages so that I can receive them from anyone. Facebook naturally filters them for me into people I am friends with, those messages go straight into my inbox and people I don’t know come up as message requests. Thankfully I can preview these without the other person knowing, so that should I wish to I can decline them.


However a few weeks ago I had the same issue with “your profile picture is very sexy” but this time it wasn’t a stranger, out of the blue. No this was during a serious conversation I was having with an admin from another group. I had contacted this admin as a favour as I had joined his group only to see that there was an ex member of the group I admin in there. This member had been removed due to his aggressive and confrontational / rude behaviour and I could see that he was up to his old tricks in this group. As a favour I thought I would give this admin the heads up. Oh how I wish I hadn’t, the conversation started up normally enough and then out of nowhere came the creepy statement. All respect I had for this gentleman left me right there, why would you do that ? and why on earth would you think that was ok?


Why is it that men seem to think that the internet is just another way to be pervy to women? What did this man, let’s call him Chris think I was going to say after he told me my profile picture was very sexy? “Oh thank you kind sir, let’s run away together?” At the time I just said “erm thanks the photo is of my dog's nose” I exited the conversation quickly after that and I am happy to say he hasn’t contacted me again.


Now if he did this to me and he barely knows me, literally we are in the same health issue group, what is he doing to women in the group he helps run? Women who he knows are vulnerable, to me that is the behaviour of a predator. Unfortunately it’s not the first time I have heard about a male admin or husband's of an admin taking advantage of their position to gain sexual satisfaction. It really brings it home to you that you should never blindly trust someone on the internet, I am always quite cautious but even I have had occasions where I have let my guard down and been punished for it. However it is usually females that take advantage of me, by monopolizing my time, asking highly personal questions and then when I tell them that I won’t answer that question I have had them get extremely nasty with me or make out that I am taking offence for no reason.


The male pervs I can deal with, as I say they normally get a special message back from me. It’s the females I find incredibly difficult to deal with, sometimes it can take me years to  stand up to them. I never divulge things I don’t want to, I won’t be bullied into that. I seem to attract the ones who are emotional vampires, who are in competition with me as to who really is the sickest them or me.  Anyone who knows me knows that I really don’t fucking care who is the sickest it’s not a game I play. They are the ones that only ever talk about themselves and when you look back at the messages you have from them you see that they rarely ever ask you how you are doing.


I write a blog, I give information away freely it’s something I chose to do.I also control the information that I share. I also understand that people will contact me as part of that. 99 times out of 100 I have no problem at all with the people who contact me and I am more than happy to help whenever I can. The downside is even though my blog audience is pretty small by the grand scheme of things and my page only has a hundred or so followers on Facebook. I do seem to attract more than my fair share of weirdos. I have been asked for money, I have been asked if I want to join an investment schemes but the ones that really get my goat are the ones that steal my time. They are the ones that message me incessantly for days on end, that claim to be big fans of my blog but the questions they ask prove time and time again they’ve never read it. They are also the ones that claim to know all about my illnesses, yet the things they say prove they don’t. I try so hard to be polite and kind to  everyone I encounter online but some people think that gives them the green light to walk all over me or to ask deeply personal questions. When I point out that I won’t answer the question and why, I am belittled through mocking apologies. Yet when I stand up for myself and tell these people to sling their hooks I am the one left feeling bad about it. I just can’t win.


Some of these encounters make me want to just shut down all my social media accounts and run away. But then I think to myself why should I be the one to suffer? All I have ever done with my blog is try to tell my story and hopefully help others who maybe at a different stage of the journey. The majority of my online encounters are lovely it’s just the odd one or two that leave me with a bad taste in my mouth. It’s the odd ones with a problem not me!