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 new  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!

 

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2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

 

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it’s hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

 

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious  strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

 

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn’t get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

 

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

 

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room, completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

 

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

 

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week – again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!

“well if you’re that f**king disabled get off facebook and take up knitting”.

The title of my post will become clear as you read it. I apologise in advance for the language but I feel it has to be repeated here. The abuse that was hurled at me on facebook needs to be set in context so I apologise profusely for the preamble.

 

I have recently experienced some firsts the likes of which as a disabled person I had never experienced until a Sunday in May (2014). I have lived in fear of this kind of abuse for quite sometime now. Of course I have heard the horror stories about various forms of abuse the disabled encounter either on line or out in public but so far in my life I had been pretty well sheltered from it.


As a disabled person (7 years of professional experience under my belt) I know that many of the disabled community live in a constant state of fear when out in public or on line. Some have developed social phobias or agoraphobia such is the state of fear for them when outside the relative safety of their home.

 

 Since the coalition government took power in 2010 our lives  (the disabled) have got worse. It seems to be open season on the disabled in this country and this is being fuelled by the right wing media. It seems the disabled are nothing more than the whipping boy for this complete shower of …….(you fill in the blank) that are currently in power. The disabled are seen as scroungers, who fake their illness and take your money (the taxpayer) because they are too bone idle to work. 

 

Let me point out I would love to work, to get out of the house and socialise like a normal human being, its just I am yet to find a profession where I can carry out my job role lying down (there is one but I’m loath to get into the sex trade!).


The fact that these “scrounging scum” may have actually paid into the system during their working lives seems neither here nor there as far as the right wing press / political parties are concerned and the vitriolic bile they spew. If you are taking money from the state you’re a scrounger. 

 

What the general public, who are being brainwashed by this message seem to forget is that the majority of people in this country would be classed as scroungers under this political mantra – Child Benefit, Child Tax Credits, Housing Benefit, Council Tax Benefit, DLA, PIP, ESA, the State Pension, these are all benefits being claimed by the same people who lap up the benefit fraudster stories in what passes for news these days. Yet all these people claiming these benefits seem to think their benefit claim doesn’t count. It drives me mad that they can not see the wood for the trees.

 

And may god help you if you happen to be an immigrant and claiming benefit. The fact you may have had to leave your country due to a threat of bodily violence against you for being gay, speaking out against a corrupt regime or just being a woman, doesn’t seem to matter to these people either.


I have been extremely lucky in the last seven years to not have my disability mocked or its extent disbelieved, on this particular Sunday in May that all changed. 

 

As usual I had asked a question of my friends on my personal facebook page not my The Myasthenia Kid page. The question was about some Morris Dancers that had performed in the town centre. I asked if it had made anyone else feel uncomfortable that they had performed with their faces blacked up. I will state here I am white, I wasn’t trying to be all politically correct and Guardianista. I was asking a genuine question and I wanted to see how my friends felt about it. The discussion was a grown up adult debate that involved me researching on line during it to see what was the reason behind the Morris dancers being blacked up.


The question had been posted on late Saturday night, around 10pm and all involved had been very calm and everyone was respecting each others opinions. My view was in the minority which it occasionally is. Our town isn’t very ethnically diverse so it was interesting to see if the answers corresponded to that. I imagine if I lived elsewhere in the country the answers would have been different. It was interesting and enjoyable, I love a good debate. I don’t post these questions to be controversial and the people that are my friends know that I will ensure everyone remains polite and calm whilst discussing a subject.

 

I have posted numerous questions before to be debated however I will admit this probably was the edgiest yet. I have always tried to stay away from “controversial” issues when I ask a question, sticking to softer subjects like the length of school holidays or school cookery lessons etc.


Sunday morning was a different kettle of fish, a person that I am friends with for professional reasons (as in I have hired her on one occasion to do some work for me) decided to wade in both guns blazing. Her attitude was aggressive and she was determined to bully me into submission because my opinion differed from hers. She rattled off numerous posts, to which it became crystal clear she had neglected to read any of the comments contained within the debate. I kept pointing out to her what she was saying was factually incorrect and if she had read what had gone on the previous night she would realise what an arse she was making of herself. Obviously in my replies I wrapped it up a bit and wasn’t quite so blunt. However once this keyboard warrior was set in motion there was no stopping her and she became more and more abusive and racist.

 

Anyone who knows me personally outside cyberspace, knows I will not apologise for feeling a certain way or holding a certain opinion. I asked her politely to stop being so aggressive and to stop reducing what had been a good debate into a playground slanging match but she continued. When it became clear to her that I wouldn’t back down she posted 


   “well if you’re that fucking disabled get off facebook and take up knitting”.


I was so stunned by her comment initially I didn’t know what to do. No one in the last 7 years has ever said anything so derogatory about my disability. I was in the midst of getting ready to out with my parents when she wrote that comment. I don’t know what shocked me more the comment or the fact she is the mother of a disabled child or the fact that her child has mixed heritage.

 

When discussing it later with some of my “friends” they didn’t think the comment was that bad and were confused by my reaction to it. I then asked them if it had been a racial slur would it still have been OK? The answer was a resounding no. So then I asked is it acceptable to make fun of disabled people or call them names like spastic, mongol etc? Again the answer was no. I then asked “do you now see why this was unacceptable to me?” I got a yes but I shouldn’t have had to jump through hoops to get them to understand. 

 

If someone says something like “well if you’re that f**king disabled get off facebook and take up knitting” firstly it makes me feel that she is questioning the level of my disability and secondly because I am disabled I am not “allowed” to be on facebook because thats for “normal” people. Which then in turn leads to the old fashioned belief that if you are physically impaired in any way you are also mentally impaired. This kind of thinking left a whole generation of bright physically impaired young people languishing in special schools which believed they would never progress beyond basket weaving. 

 

Thats why that sentence was so offensive to me and it should be to anyone who is disabled. I have a voice and I will use it. I will not be bullied or shamed into leaving something or somewhere because I don’t fit into this trolls version of a “normal” person.

 

I like to credit my friends with some intelligence, their political views may differ wildly from my own but life is made up of so many different beliefs it would be ridiculous not to have friends that thought in a different way from you. What makes me sad is that they have bought into the propaganda being spewed out by this government. Where it is becoming socially acceptable to abuse disabled people. The police in this county have reported for the first time a rise in hate crime against the disabled. We have reached a tipping point and nobody but those affected by it seem to have noticed.


I know many of you have faced far worse abuse but this was the first time it had happened to me. Looking at it now I can see yes it was abusive but on the scale of things that have been said to others its pretty insignificant. At the time it didn’t feel insignificant, it wounded me deeply, that someone that I “knew” could say those things to me and harboured those deep seated feelings against the disabled.


Deeply upsetting as her ignorant comment was I decided it wasn’t going to ruin my day out. I felt at the time (and I still feel) that the best course of action was to delete the Troll and her comments. I have heard from other writer friends that Trolls are best dealt with by ignoring them or neutralising them. I couldn’t leave my facebook page open all day for her to post her hateful messages that were not just against the disabled but were racist as well, when I would not be able to respond to them for hours.


So leaving the upset at home, I ventured out to a local supermarket, my first trip out of the house since before Christmas if you exclude hospital / doctor appointments. I was very nervous whilst I was out of the house as where I live is a small town and it was possible that the Troll could be shopping there as well. Thankfully there was no sign of her.


Whilst at the till, my mother had parked me up whilst she unloaded the trolley. I was sat there minding my own business, when I saw a woman making a beeline for me. I had my sunglasses on so I had a really good look at her as she approached me in case she was someone I really should recognise. She came closer and closer towards me and without a word put her hand on my arm rest and leaned right over me to pick something off a shelf. I sat there in stunned silence, my presence had been completely ignored by this woman and I had been reduced to just a fixture or fitting. Had I not had the run in with the Troll that morning I would have grabbed her arm and told her “excuse me!” however as I was feeling so vulnerable I didn’t.


I couldn’t believe that this had happened to me that the simple act of me being in a wheelchair had reduced me to the position of non human. I thought afterwards maybe this woman was equally as rude to the able bodied people around her. I will never know but to be reduced to nothing more than an extension of a shelf in the supermarket knocked the wind out of my sails. Especially when I was looking so gorgeous, having made a real effort to be glamorous for my trip out of the house. ( sarcasm alert – if you missed it!).


My sister has told me many stories of people climbing over her to get into lifts / toilets before her. How in pubs she has been called a “spastic” or worse. Its never happened to me, I’ve been very lucky. My exposure to the outside world is limited, a lot of my life is lead in cyberspace. I thought I had surrounded myself with “nice”, decent people, who accepted me for who I am. I was wrong and that hurts too. Having met the Troll twice she seemed nice enough. However you never really know what’s lurking underneath with some people until you get into an argument with them and then all their subconscious thoughts come flooding out.

 

 

I guess under this government and IDS its just going to get worse and I better get my big girl pants on ready to do battle. I certainly won’t be taking up knitting!