Time for a change

For those of you who have followed my blog for some time you will have noticed this week that on both platforms, Blogger and WordPress that my blog sites have had a makeover. 

The reason behind the change was two-fold, firstly it was just time for a change and secondly it was time to move forward. Both platforms used photo’s of Frankie as part of the blog. My Myasthenia kid page had a photo of Mollie and Frankie from the summer as its banner. Every time I went on the page it was a very real reminder of everything we have lost and the grief I feel. The time both Frankie and Mollie have been gone can still be counted in weeks, I still feel very sad most days. When you are with your dogs like I was 24/7 for the last 11 years they become a massive part of your life. It was like losing two members of my family, the family I have made with Jay. Still having them on the Facebook Myasthenia kid page and as a huge part of both blog platforms felt wrong. Although I will mourn them forever it was time to move forward and the new chapter of our life is now with Dembe our yellow Labrador. Not featuring him when he is a major part of my life felt disloyal to him. So hence the change.

I’ve known since the day we lost them both that the day would come that I felt strong enough to update the look of my blogs and Facebook page. I needed there to have been enough time passed that I wouldn’t feel guilty for changing things. It still took an awful lot to change the banner of my Facebook page associated with this blog. I wondered if people would think it was too soon or that I didn’t care about Mollie and Frankie. No one has said anything and deep down I knew they wouldn’t but you are still very conscious of how things may look to other people. 

The blogs were a spontaneous decision on Saturday night, when Jay was working late. I hadn’t like the look of blogger for ages and I needed to change the banner of the WordPress sites. I had taken a lovely photograph of some tree’s a couple of weeks ago and thought it would make a nice banner / background. I love Woodbury Common it has strong emotional ties for me. Every dog we have ever owned has been walked there, it was where I would go to forget the stress of everyday life before I became too sick to walk the dogs. To have that represented on the blog and it being my photograph gives me a sense of pride.

I also needed to change my Google Avatar. The photo had been a black and white one of me and Frankie. It is one of those things where every time I saw the photo I would hold my breath and wait for the pain in my heart to start. I have now changed it over to a lovely photo of Dembe. I wanted to start to look forward as I have been feeling a lot better of late. More like me and not totally bogged down in my grief. 

It has taken time for me to accept that I am allowed to look to the future and how our life with Dembe will be. Being an only dog he is even more the focus of my attention. He must some days wish that I would shut up as I talk to him constantly. He is the thing ( along with Jay ) that has got me through these last few months, who has forced me to get out of bed, to socialise when all I wanted to do was go to bed and just not have to deal with the world. Although it has been really hard on occasion I have made it through 100% of my worst days and that is an achievement.

The final thing I changed was my profile photo on my social media accounts. For a year possibly more it had been a close up photograph of Frankie’s nose. People always ask me about it as it was a cute photo but when you have just lost a faithful companion it can be really difficult emotionally to talk about it and people assume that he is still with us. I then have to say that he isn’t and that compounds the hurt. So I have changed this over to a photo of Dembe because when I speak about him I don’t feel sad. 

It took longer than I thought it would to change all the stuff. Whilst updating all my social media accounts I realised some of them were out of date and they still talked about Mollie and Frankie. So it was sad updating them but I do need to do this. I will never forget them they were a massive part of my life. They the three of them saved me when I was grieving for Travis our first Weimaraner and then when I became sick. I don’t know if I would still be here without their love and affection. Dembe has done the same shown me that there is light at the end of the tunnel and that it is ok to be sad as long as it doesn’t dominate every waking hour. 

So I hope you like what I have done to the blogs etc I think you will agree it was time for a change.

Dembe aged 24 weeks

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Solitary confinement

I’m used to my own company, I am in fact quite a solitary character. I don’t need to be surrounded by other people, as I can entertain myself. However sometimes the loneliness of chronic illness really gets to me. I am having a wobble.

 

Mr Myasthenia Kid had two weeks off work (as annual holiday) in August, it’s the longest he’s taken as holiday in years. Normally he takes a week here and there throughout the year. Always holding some back in reserve in case he needs to take time off to look after me or take me to medical appointments. Usually by the end of his weeks holiday I am happy to send him back to work, as I have my own routine and ways I like to get stuff done. This time however I am finding hard to adjust to not having him home with me. We had a lovely two weeks together, laughing, talking and generally just being together and now the house just seems so empty and quiet. It’s been quite hard to g back to it just being me for long stretches at a time.

 

It is really hard to explain how empty the house seems, it’s not like he takes up lots of room or that he makes loads of noise. It’s just I got very used to his presence and having someone to talk to. When you are chronically sick and virtually housebound your world gets very small. You only see the people who can be bothered to make the time to see you. Being below retirement age all of my friends are working and have families of their own, so I am very grateful for the time I do get to spend with them . With the pace of life these days, it’s very easy to be forgotten about, out of sight out of mind. I found that back in 2008 when I left work, that all these people who I had known for 12 years who I believed were my friends, just disappeared. They think a quick comment on your Facebook page is a get out of jail free card, it doesn’t replace seeing someone in the flesh and having a conversation.

 

Most of my friendships are now online and I have made some truly wonderful friends. Particularly on Instagram amongst the crafting / sewing / creative community. I am lucky to have got sick in an age where to talk to someone I just have to open up my computer but it doesn’t replace the physical presence of another human being. I am grateful for the online friends I have but I would imagine they would agree that proper physical contact with other human beings trumps any other contact with the outside world.

 

I have always been quite a solitary character, my own company isn’t something that has ever daunted me. In fact there are days where I cherish the time I spend alone. I like being able to step back from the outside world but I also like to spend time in it or as close as I can. I like a balance of both but due to my health being so utterly rotten this year, I have barely seen anyone since the end of June. I have literally gone weeks and the only person I have spoken to is Jamie. Can any of you who aren’t chronically sick imagine what that is like, that the only contact you have with the outside world is with one person? It’s no ones fault, this isn’t a dig at any of my friends as it has been me doing the cancelling due to not being well enough. Is it any wonder now that after having two weeks of company I am finding going back to being alone so very difficult? I am grateful that we have the dogs but their conversational skills are very limited.

 

It’s hard to explain but my heart hurts with the loneliness and the missing Jay. I know he’s only 7 minutes up the road but the house is so quiet it  is deafening.

 

Every year around Christmas time there is always a campaign about loneliness and the elderly. Every year I want to scream at the TV it’s not just the elderly who are lonely in this country. There are hundreds of thousands if not millions of people whose lives are blighted by illness who see no one for weeks on end other than their caregivers or partners. It is assumed that if you are aged between 18-67 that you are in work but there are many of us who can’t work, who are housebound who are crying out for some company yet we are the forgotten ones. I don’t know if it is because people don’t understand chronic illness and can’t get their heads around the fact that there are working age people, who through no fault of their own do not have the social outlet of work and are just forgotten. It’s like we don’t exist.

 

I am extremely lucky I have friends who do come and visit me. I really appreciate those visits and I hate it when I have to cancel due to my health deciding to have a hissy fit. It takes a lot for me to cancel because I don’t know when they will be able to visit again. There are lots of people in my position who never see anyone. I know I am lucky, I am just sad this week as I am finding it so hard to adjust to Jamie being back at work.

 

I know given a few more days I will have got myself back into a routine and I will be used to being on my own again. I thank my lucky stars for my cyber friends who are so supportive and caring. Even though I am shit at messaging people because I am always in my own little bubble. I have an issue where I think of someone, say to myself “oh I must message them” and two weeks later I realise I haven’t. I’m currently struggling with what day of the week it is. Not because there has been a bank holiday it’s purely that I have no clue. To give you an example of how bad it is at the moment, I had no clue today was Thursday and was quite surprised when I started to get notifications on my blogs Facebook page. It was only when I looked I realised that my blog post for this week had been published. I tend to write them in advance and schedule them in to be published automatically. This morning I had no idea that it was Thursday. I do however know who the prime minister is and what year I was born! Just in case anyone is concerned about my mental status. It’s just the days are currently blurring into one.

I also know that the way I am feeling now is probably a reaction to all the stress I have been under lately. My mum has had some pretty major surgery that was needed out of the blue. Adrenaline has carried me through for weeks. Now things are starting to calm down, I have the time to spend analysing my feelings because during that time period it was just getting through that day that mattered. It was a frightening / stressful time. In a year of horribly stressful and sad events. I know I just need to get back into a routine and allow myself the period of adjustment instead of being so hard on myself that I am struggling to adapt.

 

This probably  seems quite a depressing read, I’m sorry. I have just really been surprised at the depth of feeling that Jays return to work has caused me. I don’t think in the nearly 22 years we have been together that I have ever missed him so much. Silly really as every night he is home, every morning he is here. Just at the moment being in the house alone seems a little like solitary confinement.

 

P.s Its over a week later and I am back into my old routine. I am enjoying the time I have to myself and have been really productive on the sewing front.  I have also had a visit from some friends which was really nice. Obviously I still miss Jay during the day but it’s not like the deep ache in my heart I had before. I  am much happier now that I have re-adjusted to the time spent alone.

 

Even Weirder

If last week was a weird week I haven’t got a clue what this one should be called! I had more vertigo, a migraine from hell, so bad that Mr Myasthenia Kid had to take the day off from work to look after me – more about that later and I can’t share any of my sewing makes over the last few days as they are all birthday presents for friends between 23rd June and the end of August. A little frustrating when I am so pleased with all of them, The good news is that my sewing job list on my phone for the months of May and June have reduced dramatically!

 

As I wrote in my last blog post I attended a course last Wednesday regarding how to use my overlocker. I was so excited about the course and I hate to say it but it was a real let down. It was everything a teaching session shouldn’t be. In a previous lifetime (1996-2005) I held the position of Training Manager at my place of employment. I was responsible for all the training that took place for the 350 plus staff we employed at the time. Not only that I was also sent to various other locations throughout the south-west to teach other Training Managers (they were also sent to work with me to get an understanding of their role) and to teach staff for new store openings. I loved the job and I am not afraid to say that I was bloody good at it. It broke my heart when head office in its wisdom decided to get rid of the role. Training quality immediately plummeted – in my workplace. I have been sorely tempted over the last few years to do  a  freedom of information request to see how many court cases they have had since removing the Training Manager role.

 

So with nearly ten years of teaching under my belt, I know that people have varied learning styles. Some learn by watching something and then having a go, some people learn by reading a manual and some people learn by a mixture of those two. Unfortunately the course seemed to be mainly the us the students sat at our machine with the trainer talking at us. So bored was I that I actually got my phone out and started to look at Facebook – discreetly. I didn’t want to be rude but I had to do something to keep myself awake as the stairs getting up to the classroom had nearly killed me. Oxygen was almost required – this was not suitable for the disabled sewist.

 

The course had been billed as getting to know your machine – I’d had mine since 13th April so rather than being terrified I had dived straight in. It became clear talking to the other 7 pupils ( excluding my mum, yes 9 people to one tutor how on earth could all of us see anything when she demonstrated at a machine?) that they had never even opened the boxes that their overlockers had come in, that possibly mum and I were too advanced for this course. I obviously wound the tutor up when after she dramatically cut all 4 threads on my overlocker and asked me to re-thread it and I had it done in less than 5 minutes. She told me off for using my machine when I was checking that it was chaining (working properly). She didn’t realise that I had threaded it and actually knew a little about what I was doing. The course went downhill from there.

 

Three people’s machines broke during the day and not once did the tutor offer any support, instead there were sarcastic comments dressed up as imparting information that certain brands of machines were basically crap and  It concerned me that someone who claimed to know so much about brands was unaware that Elna and Janome are the same company. One lady went downstairs and bought a new machine but still this woman ploughed on and didn’t recap with the lady what she had missed. The same happened when my mum’s machine broke.

 

By the end of the day I could barely maintain a civil composure, I was threading my mum’s machine to ensure that she had a working machine when we left the course – thankfully her machine was repaired there and then by the shop owners – I can’t fault them at all. I love their shop and they have always been lovely which is why I am not naming the location of the class as I wouldn’t want to damage their reputation, when this was someone who obviously comes in and works for the. The teacher was demanding yet again mum and I stand in front of a machine that we wouldn’t have a clear view of – when both of us have mobility issues which were obvious due to the mobility aids we were using. I practically hissed that I was beyond tired as was my mother and having a working machine before leaving the shop was slightly more important than looking at the backs of people’s heads. I then let her look at the back of mine as I got on with threading mum’s machine – something the tutor should have done when she was told mum was having issues seeing properly due to the light coming in through the window.

 

All I can say is thank fuck I didn’t pay full price for that class. I still feel ripped off knowing I paid £27 for it. I will be honest yes I learned some bits and pieces but not £27 worth.

 

Thursday was a complete right off as at 2am I woke up with a migraine, it was hideous. I couldn’t stop being sick and by the time Jamie found me lying in the dark at 9am I could barely speak. By 2pm I was starting to come around but I was just completely drained. However my back would not put up with me lying in bed any longer so I forced myself downstairs.

 

I was wiped out by the migraine for a good couple of days but I did get some sewing done. I managed to make a start on my floating triangle quilt, so the week wasn’t a complete right off. I have started taking pizotifen again in the hope that it prevents more migraines in the future or if not it at least reduces the intensity. I can’t cope with that again nothing stops the pain or the sickness.

 

My quilt pieces, this is as far as I have got as the rest of my time has been taken up making birthday presents,

 

 

Now all that is left to do is to join them all together in the right order!

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!

 

Limbo

Currently I am in diagnostic limbo, awaiting tests to confirm or deny the diagnosis of Myasthenia Gravis (again). It is a deeply frustrating time, whilst I wait around for my first appointment, I am essentially in no man’s land. Technically until proven otherwise there is essentially nothing wrong with me yet those who know me, know that what is happening at the moment is beyond my normal levels of crap health.

 

The hoops have already been set for me to jump through. Although my consultant has written to my gp requesting that he / she prescribes mestinon for me to alleviate the worst of my symptoms. A drug that is also used for PoTs although in this community it’s known as pyridostigmine bromide as it raises standing blood pressure. You’d think I was asking for crack cocaine to be prescribed. On Tuesday evening at 17:30 I had a phone call from the doctor’s surgery asking me to book an appointment to see my gp as the gp “wanted to speak to me about pyridostigmine bromide”. Now I maybe way off base but to me this doesn’t sound good. I raised the possibility of MG with this dr back in May and was essentially ignored, now they want to discuss it? I have never had an issue with my consultant asking my gp to write a prescription and it necessitating an appointment to discuss it.

 

* * *

 

I started writing this post on Saturday morning and was too ill to continue writing it. As you can probably tell I was a little wound up by the prospect of having to do battle with another doctor so soon. I have been getting weaker over the last few days, finding my legs turning to jelly along with my arms. The stress of waiting to see the doctor yesterday didn’t help. By the time it came for me to leave the house, my ptosis was the worst it’s been in a while with it also affecting my mouth, causing me to drool.

 

 

As it turns out I got myself all worked up for nothing. The gp wanted to ensure my understanding about Myasthenia Gravis, Pyridostigmine Bromide and to work on a plan for if I was to get worse before seeing the Neurologist. That was a weight off my mind, I am so used to having to attend an appointment and be prepared for a fight when it comes to MG, I couldn’t see it going any other way. It was such a relief. I know that the neurology appointment is a different kettle of fish but for the time being I can relax a little and work on being a bit more stable. I have had 19 days of ptosis (I still can’t believe I coped with this for nine months solid in the past) but now at least I have the medication to stop it in its tracks.

 

I decided to hell with it all yesterday on my personal Facebook feed and posted the photo that is above (but a colour version). I explained that Myasthenia Gravis was back on the cards again and that this is what I had been dealing with on a daily basis for 18 days (at that point). I always try to distance my own page from my health as I have had some really awful stuff said to me before. I tend to keep most things limited to my blog or my Myasthenia Kid Facebook page, so that people can choose to follow or not. I shouldn’t have to do that but I do because society can’t cope with an illness that doesn’t get better. It doesn’t understand that you can have good days and bad days. I find it easier to self censor than face the bullshit that comes with being honest. Sad but true.

 

So this is going to be a very short post as my arms are shaking from using the chromebook and I feel like crap. I can’t lie. Mestinon has been started and the same results as ten years ago achieved, as in my ptosis resolves within 20-30 minutes, longer if I am really bad and the weakness in my limbs lessens.

 

I did have a wry smile yesterday when the gp added to my notes “Myasthenia Gravis” but then I have been here before. Still currently officially in limbo.

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!